Dodging a Bullet

I am not terribly sure anyone reads, this...so all the better for my crazy update. [First off - I believe in our energy healer. I am not going to offer caveats any longer like "I know this sounds crazy" and "I know some of this sounds weird..." It is what it is. I believe in it - I believe in her. I feel she has an amazing gift, and I am thrilled to know her and have her working to help my kids.]

I am reasonably sure I mentioned we started seeing an "energy healer" to help us guide our interventions.

Yesterday, I had an appointment (our first one) for the baby. Who will be 2 on Valentine's Day, but she's still my baby, so there.

She has a bizarre rash on her diaper region - they look like little pustules. And a spot of them that developed where she had gotten a scratch. So, those were definitely on my mind when I was talking with our healer. And her speech, in general. She's gotten so much better, but I just wanted to see what was going on.

And the things she told me left me speechless and in tears.

Our healer said the baby told her she "was supposed to have autism".

I felt my heart fall out of my chest at that moment. Everything I've suspected and feared and why I was so determined to have her see Buzzy's doctor - all of those things. THEY MATTERED. And not only that, they MADE A DIFFERENCE. All the things I've done differently - having her follow the GFCF diet, stopping her vaccinations, trying to do things differently for her...taking her to Buzzy's doctor. All of that...it made the difference.

The biggest thing - that our healer said "flipped the switch"...were the methyl B-12 shots. I knew they helped her speech. I knew they were amazing. I just didn't realize they were THAT amazing. I am so glad I tried them. They didn't really do much *wow* kind of stuff for Buzzy, but I am so glad we decided to do them. Our healer commented that our doctor was wonderful - and I am beginning to think maybe our doctor has a similar gift in terms of intuition and how to best heal kids. I see her on Monday. I am going to thank her, and I am probably going to cry. And I don't care.

Our healer also suggested some other simple things to do with the baby that will help her along. I am going to be omitting a few supplements, adding back another, and using some more essential oils.

Buzzy and I have our appointments tonight with our energy healer. I am looking forward to hearing what she has to share with us.

Oh, and that nasty rash? Parasite exit wounds. (Barf!) Spray them with lavender, and it will be all good. And, they look better already after only about 2 sprays today.

Happy Halloween!

Yesterday one of the other mom's in Buzzy's class asked if the kids should wear their Halloween costumes. The teachers said that would be great. I wondered if I would be able to get Buzzy in his Buzz Lightyear costume, and was kind of surprised the other moms didn't seem to think it was a big deal that their kids would willingly wear their costumes. (Hang tight with me, I am getting somewhere. And I promise there is a point to all of this.)

Anyhow, I was pleasantly surprised this morning when my early riser (7:15 or so) willingly put on his costume, head covering included. He pulled the head thing off not too long later, but I was expecting that to happen.

Anyhow, when we get there, there were plenty of kids in costume, just none in his class. Buzz even let me put his head thing back on him. Twice. And then I felt really sad for the other moms, whose kids' costumes were in a heap with their backpacks and whatnot. Autism really sucks.

I even channeled my "super mom" and made GFCF dye free treat bags for the kids in his class as well. I had a fruit rope in there, two cookies, and a bag of sour beans. I had enough for one extra bag - and that went to the baby. Alas, it looks like mom doesn't get a treat bag this year.

I am dying to try to get together with these other moms. Their kids are also GFCF. The boy in Buzzy's class had a birthday party we were invited to and I was so excited to go and get to know this mom, but then the boy got a fever and she cancelled the party. And said it would be rescheduled and she would let me know. Well, it's past the time she said it would be held at, so my guess is the cancellation is permanent. Maybe I should hold a small holiday party here for the kids in his class. They probably won't want to drive out all this way, but it's worth a shot, I guess. I would really like to talk to them and see if they are in any parent groups. I need to meet other autism moms. I will keep trying till I find someone in person!

The Good, The Bad, The Ugly, and The Great

We have a little bit of everything going on here. So, I will do a summary of what has really been going on here - with no holding back.

About a month ago I set up an appointment with someone who does energy healing. I won't get too much into it. Suffice to say that I believe there are people who can do energy healings and I really don't care to hear anyone say otherwise. And I think we have found the real deal. I met her in person at Autism One and my TACA mentor uses her for her family, so that was good enough for me to start seeing her.

First off, she told me some things about my son that made me cry. Things about who he really was and who he would be if the autism wasn't in the way. And how he plans to make me proud of him. I also have her muscle test Buzzy for the various interventions we are doing. He thinks school is a bit boring and he thought there would be more fun there. Oops.

A summary - the parasite killer is of mild benefit, but the specific worm killer meds were detrimental. I believe that, because the few times I've started them, Buzzy just looks bad. His skin gets kind of grey and he looks a little sickly. So, I've kept the general protocol in place, since it was at least helpful a little. All of the supplements he is taking are beneficial, so we are keeping those in place. He is on chlorella, burbur, l-carnitine, vitamin D, Barlean's fish oil, sacc boulardii, Pro Culture Gold, and goldenseal. These are all approved by his doctor, as well. I am glad to know they are benefiting him.

On her recommendation, I have added Qi Gong massage. That one has been interesting. He is doing really well with it. I have been seeing some positive things, which I will be getting to later.

As for homeopathy, our Heilkunst provider only scores a 2 in terms of benefit (on a scale of 1 to 10). Bummer. But, the classical homeopathy (which I had gotten lazy with and kind of stopped doing) scored a 6. So, I brought that back right away. And we saw some good things right away. Buzzy had had a red ring around his anus (sign of yeast) and he was constantly scratching his butt. He also was waking up earlier and earlier. We tweaked his remedies (he is on candida, clostridia, and a new constitutional - cinnamonum) and the itching has stopped and the red ring is gone. That being said, one of the tools our Heilkunstler uses scored a 10 - so we will be using that tool to help us find remedies. The same tool that our classical homeopathy person uses, scores a 2 for him. Meaning we have to see both. Ha ha!

That being said - what our energy healer said is making sense. I haven't seen much improvement (not what I was expecting anyhow) from Heilkunst. I have seen good things from classical. So, we will keep following what she tells us beneficial.

She said the Son Rise Program would be a 10 for us as well. I will have her keep testing that for us. If it continues to test well for him, I guess I will be making a trip out east this summer for their training. Time to start saving up!

I also added another supplement - Neuroprotek.

So, I will go on to mention all of the positive things we have been seeing. Buzzy is more talkative. He is doing really well. He even tells me some of the things that happen at school - and they really did happen. It's been nothing short of amazing for me to hear. He has also been talking about going trick or treating. A year ago my heart was broken because he couldn't even say trick or treat and had no idea what Halloween was about. He has been asking for the past couple of days to go trick or treating. I know he doesn't understand the whole idea of "what do you want to be", but we will get there, I am sure. He is also asking to play with the other kids in his class. They aren't always receptive, but he is trying. So, they are going to be moving him to the general ed preschool for about 5 minutes to start with to get him some time to play with the kids there. We are very excited about this.

The ugly is that I have been feeding him chicken nuggets with gluten in them. Ugh. At least I found out! And he got a Dum Dum sucker today, and I ended up letting him eat it, because I was trying to make dinner and I couldn't tolerate a tantrum. So, yeah. That sucked because we are seeing some increase in aggressive behavior ("I want to pinch Mommy!" and "I want to hit Mommy!"). On the plus side, those are some pretty awesome sentences. I take what I can get.

So, in short...we are seeing some amazing gains and speech. That's the positive. The negative is that I am trying so many new things at once, I might not be able to attribute it to any one thing. My best guess is that it is a little of everything.

All I can say is that life looks a lot better for the Buzz than it did one year ago.

Glasses, EEG Results, and Detox

A lot has been going on here the last few weeks.

We have two appointments with neurologists. One in is Chicago - in February. I have heard good things about this doctor and that he won't make me feel like I'm an over-protective crazy mom and that we should get a 24 hour (AKA real) EEG no problems.

I also got a hard copy of Buzzy's EEG results. They were not completely normal. I don't know how to interpret them, but it appears there was a lot of activity in one part of his brain. And that there was abnormal activity at another point in a different part of his brain. And that there should have been additional follow-up. Wow. And this was in an EEG lasting less than 40 minutes. I know, silly me. When the doctor told me it would last an hour, I shouldn't have believed him. I am pretty angry that I feel like this doctor blew me off. I will not put this issue to rest until I get a 24 hour EEG that shows up clean. I keep getting a feeling. Sigh.

The other neurology appointment is in December - of 2014. In Arkansas.  Now that we have something coming down the pipeline sooner, I have no issues waiting a bit for this one. I am still sure I want to go this one as well, because he does so much more than just seizures. But, maybe something will change before then. I guess we will see.

We also took Buzzy to a developmental optometrist. He now has glasses. He was found to be far-sighted, so he was prescribed corrective lenses (that were also prisms). Also, one lens has a slight tint. I think they are helping him. He seems to be doing better when he is running - he seems to have better balance. The first day he wore them to therapy, his therapists said he got really close to them to look at them - almost as if he was seeing them for the first time.

We are still doing what we have been doing. Buzzy has been detoxing like crazy, it seems. He was wetting his pants at school for a few weeks, but all seems to have returned to normal. Mostly.

And since it's Friday night, I will return to trying to take care of the family.

Our weekend at the Real Help Now Conference

My husband and I this past weekend attended the Real Help Now Conference that is put on by TACA. Even though I consider myself pretty knowledgeable (despite being pretty new to the diagnosis), I learned a lot of things. It was a lot to take in, but it helped us know we are on the right track. Also, go to the TACA website. I linked it above. They are a FANTASTIC resource. And, while you're at it - request a mentor. I have a great mentor, and in a year or so, I am going to be applying to be a mentor. Give TACA some love, because they really, really are awesome.

Plus, I got a chance to see a number of doctors speak that are pretty much rock stars in the autism world. That was pretty awesome.

After watching many presentations the first thing was that we need to see Dr. Frye, because he is the be-all end-all of pediatric neurologists - and not just that, but ones that study autism. So, in short, I have never really put to rest the idea of seizures in Buzzy, because I don't feel he got the proper care. The EEG wasn't long enough. The doctor might have brushed off anything abnormal. We don't know whether he has cerebral folate antibodies. Still so many questions, and I want the answers. I can't stop listening to my gut and my intuition, so for my peace of mind, this is something we need to do.

There is a 15 month wait list.

I plan on getting in before 6 months are up. It's just a personal goal of mine - and that was something they talked about at the conference - how to get one of those cancellations and get seen sooner.

I also found that we are definitely seeing the right "local" doctor. We are on the right path. And, with enough time, we will heal Buzzy.

I think even more important than what I learned, is what my husband was able to learn. He has mostly learned everything through me - what I read and then what I told him. This was a good way for him to see how everything fit together and that maybe his wife wasn't crazy for wanting to do all of this stuff and wanting to see these doctors.

Clearly, the proof is in how Buzzy is doing, and he is doing a lot better. But, it was still nice to hear these doctors present, and what they're presenting are essentially the things we're doing.

Recharging the Batteries

Yesterday I had an appointment with Buzzy's and the baby's doctor. For the last 8 months we have only seen her physician's assistant. And while that was all well and good, I am so glad we finally got a chance to see the doctor. It was a great appointment. I felt like everything we are doing is on the right track and we got some more ideas on where we need to go next. 

So, we are going to continue with the parasite killing. I have been very lax and unmotivated about getting my son dosed, and that ended last night. We are back on, and we are going to keep swinging. I am pulling in the reins on his diet as well. I haven't been very good about making sure he isn't eating foods that won't interfere with the parasite killing. That is stopping as of now. 

His speech is (obviously) still delayed. We decided to add in l-methylfolate. He was on it before, but i pulled it when we started the worm killing. It should help with his speech, hopefully. We will also increase the amount up to 10 mg, which should be interesting. 

We also had high markers on his follow-up OAT test for bacteria, even after all we're doing to address that. Not surprising. So, we are going to add Goldenseal to the mix, to hopefully kill the nasty bacteria.

We are also adding l-carnitine, and I can't remember why on that one. It addresses something he is still having issues with. 

Chlorella is also being added to added to mop up the toxins and other yuck that is floating around. 

We will also be doing a bunch of bloodwork. First off, we are going to get titers for a number of viruses (Epstein-Barr, CMV, measles, rubella, and HHV - there might be one more, but I'm not getting off my butt to look). We will also get a nagalase level measured to see if GcMAF is a treatment we need to pursue. All of those deal with viral issues in the body. If the nagalase level shows there are issues, we will start with a sublingual GcMAF to see if it's tolerated before we move into shots. 

We discussed iron levels and hemochromatosis. Both my husband and I are heterozygous for this, so there is a possibility Buzzy has it. There is a CBC and some other things as well. I am not looking forward to the blood draw (we will do it some time after October 1st, when the new year kicks in for our medical flex plan and we get to put more money on it), but I am looking forward to the information we will get from it. 

We also need to work on getting more veggies into the boy. I have been lax with that as well lately. So, it will be back to making smoothies so that someone's diet is a little more healthy. 

All in all, I am happy with Buzzy's progress, but (of course) I still want more. I want to get rid of the nasty bacteria he has and see his personality, not what the bacteria make him do. Apparently strep is the one that makes someone fixate and be obsessive and echolalic. (I had thought it was the clostridia.)

September Update

We had a busy summer here, but now it looks like summer is over. I love warm weather, so the impending winter is not something I am looking forward to.

Buzzy started his first remedy - it was for Flagyl. He got it last week. Healing reactions, I was told, for these first two remedies would be minimal, but I would see a reaction (if there was one to be seen) in about 7-10 days.

Well, the last few days have been something else. Buzzy spontaneously asked me the other day "I want to play with Mommy". That was a pretty awesome moment, but it is something they have been working with him during therapy, so while it was spontaneous, it kind of feels it wasn't. I know I need to get over that.

That being said, he has also been a little hard to handle. He has been biting his sister, hard. He has been taking things and throwing them on the floor. His favorite is tomatoes. He has been kind of all over the place. Before he had been more focused and was able to play with my girls and me more. Now is more like his old self - very obsessive with vacuum cleaners and more apt to get into things.

So, my hope is that this is a "healing crisis" and we will be seeing very good things (or at least a tiny bit better than where were before) very soon. He will start his next remedy in a week or two - depending on how I feel about how he is doing.

I also decided to start his baby sister and myself on Heilkunst homeopathy. I look forward to seeing positive changes for us as well.

We are keeping up (mostly) with the parasite deal. This weekend has been a little rough, as I mentioned before.

We don't have any new irons in fire so far. I have an intense desire to start mild hyperbaric oxygen treatment, but the bottom line is you need money (a lot of money) to do even one round of treatments. I would love to get a chamber, but that will have to wait. Maybe when we have the minivan paid off.

That's about all I have for now. Hopefully there are some great things on the horizon.

EEG Results and New Avenues

Buzzy did great during the EEG. We were called with the results that evening. Everything appeared to be normal. So, I will quit fixating on that.

Also, I feel like homeopathy could be going better for us. I don't think I have seen much from what we were doing, other than a negative reaction from the strep remedy we started. Also, we had another follow-up appointment where I was basically told nothing was changed and there were only minor adjustments. So, I felt like it was a huge waste of $55.

So, it wasn't much of decision to decide to try Heilkunst homeopathy. We already had our first appointment and are waiting on our first set of remedies. I think the person we were using before wasn't experienced enough. And that was kind of my mistake - because I wanted to be seen right away.

I expect great things from Heilkunst. Basically, you create a timeline of traumas and homeopathic remedies are used in reverse chronological order to clear those issues from the body. And that's what I actually wanted to do to begin with, but I didn't understand how to find the right person. Nor did I really understand the different types of homeopathy.

But, I'm getting there. And so is Buzzy.

Neurologist Appointment

A while back I had tried to get Buzzy in to see a neurologist that was "local" to us. (About 30 minutes away, but that's as good as it gets when you live where we do.)

I was informed that the nurse, after looking at his records and his history, felt he didn't need to be seen.

Excuse me?

And then, well, f*ck you, state of Illinois. I then looked again at the list of doctors some ladies on a special needs FB group posted, and selected a neurologist in St. Louis. I made a phone call and...

GOT AN APPOINTMENT.

Can I talk for a moment about how 30% children with autism have a seizure disorder? And that the VERY definition of autism (at least in its current form) is that it is a "neurological condition"? Hmm. Wouldn't you think then, a NEUROLOGIST would be the best person then to, perhaps, look at an autistic child?

Anyhow, on Tuesday we took Buzzy to the neurologist. Overall, it was a good experience. The doctor had no use for our special diet and the vitamins and the B12 shots, but conceded that we were his parents and it was our decision to do thus. He also said he didn't see any sign of seizure activity, but that he would acquiesce to an EEG for an hour to see if there was anything going on. He also suggested an MRI - should any gross heritable abnormality influence our decision for subsequent offspring.

He also suggested that he didn't think Buzzy had autism.

All I can say is that Buzzy was diagnosed with autism in November. And I wasn't surprised. He has gotten better, but there are still some really oddball things that he does. And he is still delayed in speech. He can request things very well, but he has no imagination and still can't answer "w" questions, and even some simple "yes/no" questions. But, that a neurologist feels the label no longer applies to him makes me feel like we are continuing to move in the right direction.

After a bit of discussion on the ride home, we decided to go ahead with the EEG, but not the MRI since the MRI would have to be done under general sedation, while the EEG wouldn't have to be. I think I scheduled the EEG for August 2nd, but I got a mysterious phone call from them Friday, so I suspect that appointment will change. (The guy I talked to on the phone when I made the appointment sounded really confused, so I am not too surprised.)

Autism camp continues to go well.

Parasite cleaning continues.

We fight on.

We are still here!

I am still here. Still taking care things. Still trying to keep Buzzy moving forward and making progress and catching up.

Where we are with diet: we are still doing GFCF and we are soy free as well. And preservative free. We just placed an order for 1/4 beef - my first cow parts that I have bought from somewhere other than a store. I am excited, because I think it will save us money in the long run. I am also making almond milk, but need to find a better way to filter out the almond bits. They are pretty harsh when they are in the milk, and no one in this house likes drinking it that way. Including me.

Source: Oh Nuts

Where we are with supplements: I have changed things up. I am reluctant to talk about what I am doing, because it is kind of out there, but I can't argue with the results we are seeing. I started Buzzy on a systemic all-purpose pathogen killer that has brought swift positive results. There are also a few negative things I've been seeing in the last few days, but I will take it. So, for the moment we have stopped the Super Nu-Thera and the l-methylfolate. We have moved the Barlean's and the probiotics to right before he goes to bed. I may be switching to a vegan source of omegas when we run out of the Barlean's. I haven't really thought that far ahead.

One of the negatives we have been seeing is him spitting. He will spit on the floor and think it's great fun. And the more unhappy we are about it, the more it seems to delight him. He is also a little more drooly. I am not sure what that's a manifestation of.

We also had a visit with Buzzy's PA. We got the results for his heavy metals porphyrin urine test. He was actually pretty low on everything, which suprised me. Except aluminum. So, for the moment we are not going to be chelating unless he does not make progress for a while and then we will think about it then.

Aluminum scorpion. You can get here. If you want to build one, that is.  It's from the UK.

We were also prescribed a mitochondrial supplement that is compounded, so it has a lot of things in it. I am holding off starting him on that until August. I want to move though him being on the pathogen killer for a bit. We were also prescribed topical glutathione, which I am also holding off on giving him, for the same reasons.

We are still doing homeopathy. We still have his constitutional (Bovista). We recently increased that to two times a week. We are attacking strep and candida. He is still on the Bach mustard and the Borrelia (for Lyme). We started having problems when we added the strep. He started getting aggressive with the baby. He would sit on her. He would bite her nose. It got so bad that she would start screaming as soon as he got within a foot from her. And that is what precipitated me changing everything up and starting the pathogen killer.

And the same day I started the pathogen killer (PK), he stopped the aggressive behavior. In fact, he has been really affectionate lately, giving us sloppy, long kisses. That's not to say he has displayed zero aggression, but it is *much* better. So, I am pleased with that. He is in my lap right now. Listening to Akon. LOL

The Flagyl was a humongous failure. I should have known better. While he was on it, I didn't notice any difference in his behavior. Once he was done with it, within a few days his poop turned to acidic mush, his bottom developed open sores, and he was pooping a few times a day. After two weeks this subsided, but it was not cool. I will never put him on that again. So, yeah. That sucked.

We are working on potty training here. It's going awesome - as long as he is naked. Sigh. Since starting the PK, his poop has been really solid. Except for today. Today was a little on the soft serve side, but since it was in a potty, it's not like it was really horrible.

He is doing really well in his "autism camp". He goes 3 hours a day, 5 days a week. He has OT, speech, ABA, and social skills. In the social skills class he works with another boy his age. Who is light years ahead of him in speech. Another big sigh.

Also, my rockstar husband and I took the babies to the zoo a few days ago. It was a forceful reminder that I really cannot handle the two children when I am out on my own alone. And that hurt.  I had thought we made enough progress where that wasn't going to be much of an issue any longer, but that wasn't the case. I was very glad I had my running shoes that day.

These are my shoes. From Zappos. They are only as fast as  I am.
Which isn't very.

Another positive is that he is using sentences. They are missing articles like a" or "the", but one day he even said a spontaneous 6 word sentence. I know, because I repeated it and counted the words on my fingers. I am happy with his progress, but we still don't have the ability to answer a simple question with "yes" or "no". I thought we had that, but it seems to have disappeared. And I wish if when he stood in front of the fridge and said "open door" and I asked "why" he could tell me he wanted "milk" or whatever. One thing at a time, right?

I think that pretty much catches up everything that's been going on lately. We have been fighting Buzzy about pacifiers. He keeps wanting to steal his sister's. So, she now only gets them at night. And so does he. Which he used to not get them at all. I am picking my battles here, I guess.

My Time at Autism One

I just returned from the Autism One conference yesterday evening. I learned so much. I highly recommend that anyone who has a child with autism go to this conference, yearly if you can. But, at least once if you go yearly.

This was my first time. I am already thinking of what it's going to be like next year. And I know it will be just as incredible next year as it was this year.

For me this biggest deal and most stress was from not knowing where I was going and exactly how to get there. I have no sense of direction and I hate city driving. Particularly Chicago. I found my hotel, and it turns out when I got to the front desk, it was the wrong hotel. Go me.

Anyhow, I felt much better once I checked in (to the correct hotel), got all the stuff in my room and found the conference. I had a little bit of time to wander around before I went to my first presentation. I walked in at the tail-end of one of the presentations. I was sorry I missed it, because it looked good.

Before I talk about any of the presentations in specific, I want to make a few comments about the conference in general. I am socially awkward unless I know people. And in large groups, that awkwardness is exacerbated. Many of the people I saw at the conference were meeting up with people and already knew people who were there. I didn't, so I did feel kind of lonely at times. But, I wasn't really there to socialize, I was there to learn as much as possible.

My favorite things from the conference (excluding all of the excellent presentations where I was trying to learn things) were the keynotes. It felt amazing to be in room FULL of people who understood what it was like to have a child with autism. People who understood the impact of what we eat, people who understood how toxic and poisoned our world is and how important it is to change that - maybe not for everybody, but at least for your family. So inspiring and so exciting and so motivating.

I got to meet my TACA mentor in person, and she was just as nice there as she was on the phone. Very cool to see her.

I also had lunch with Buzzy's homeopathy practitioner. She was very cool and easy to talk to.

The rest of the time it was presentation after presentation after presentation. I ate every so often and I did get to see the vendors as well.

Picture from Autism Furniture website.

I wound up getting a pillow chair for everyone to use. You can find it here if you want to read more about it - Nesting Chair. It feels fabulous. It came with a pillow meant to be used as an ottoman and another two pillows. It's a brown suede-like material. Apparently brown is my favorite fabric/furniture color, because it matches well with our couch and the little chair I got Buzzy for Christmas. It was meant for the kids, but I am parked in it right now. It gives us an extra seat in the living room. I must say, it was one of my better purchases. I got a good deal on it, because I bought the floor model from the conference (and didn't have to pay shipping, because I drove it home with me). I had to put it in the back seat of my Camry, and I smashed it down pretty good. But, as I drove it kept expanding and by the time I got home I could barely see out of my rear windshield. Ha ha!

I will talk more about some of the things I learned in a later blog post. For now that's all I have in me.

Getting rid of the Nasties

We had our homeopathy appointment a few weeks ago. It was really interesting. I spent a little over 2 hours talking about Buzzy and his behaviors, symptoms, and even tried to guess at his feelings.

Two days later, we got a bill. And after that was paid, we received an email detailing the remedies we needed to purchase for him (and I was to take a few of them) along with how to dose them. I had them ordered that night.

Where the goods are coming from. 

Alas, they come from the UK. So, I have been impatiently waiting for them. I think it's only been a week (probably not even a week). That doesn't stop me from obsessing. I could talk about which specific remedies were suggested for is, but the understanding is that they are pretty much very specific to our situation and his issues. That being said, he will be taking Bovista (in varying potentcies), a Bach remedy (mustard), and Borrelia (for Lyme). I was a bit surprised by the Lyme, but we will see what it does. I was also told to have a Candida remedy on hand for when yeast flares. She said it may not, but it probably will sooner or later. Sounds about right to me.

We have decided for now to stop the camel milk. His poop wasn't really getting any better and it was still kind of mushy. So, we decided to hold off. I was getting tired of clean up.

image from NY Daily News

We will come back to the camel milk after we get some of his other issues taken care of. Which I will get to next.

We saw Buzzy's biomed doctor (okay, her PA) yesterday. We went over the urine test results. Basically, he has a huge amount of Clostridia bacteria in his GI tract. It's causing some of his verbal stimming issues. And aggression, which fortunately we don't see too much of. We had two options: we could use Flagyl to get rid of it, or we could try a gentler (and longer) course of herbal stuff. Which happened to also taste bad. And it would take a month to see if it was working. And it would take about 3-6 months for treatment. I am all for the gentler method. Time isn't too much of a consideration. BUT, I wasn't sure I could get him to take the herbal antimicrobials. So, after a lot of agonizing and thinking, I went with the antibiotics. We are doubling his probiotics in hopes that will help him during the course of this.  I am terrified of the yeast taking over. That's why I was reluctant to do the antiobiotics. Anyhow, we are dosing him three times a day for two weeks. He is willingly taking it, so that's good. I am hoping the die-off isn't too intense.

Nasty little buggers. Image: Wikipedia

We were also told to add activated charcoal to help mop up the toxins from the dying bacteria. Fortunately  I just got through trying that when we were doing camel milk (I didn't see it make a difference in his stool), so I have some on hand. 

We also are doing a urine porphyrin test. They will be looking at heavy metals in there. We won't be able to do anything about the heavy metals until his gut is healed, but it will be interesting to see what comes up. I feel he will test high for heavy metals. We will know in about 3 weeks. We go back in about a month and half to see where things are. 

And today (and yesterday) my son actually asked a question, "Where bear?" and this morning, "Where iPad go?" I am so proud and so amazed at the progress he is making. He is working so hard, and it's wonderful to hear his voice. There was a time I wondered if he would ever able to tell me his thoughts. And there was a time I wondered what sorts of thoughts were in his head. Now, I am glad I know. Even if his thoughts are "Eat poop" (and it sounds more like "poot") and he expects us to say "Nooo! Don't eat poop!". 

I wouldn't want to...we know it has clostridia in it. 

Genetics Results and Other Odds and Ends

I can't believe the last time I wrote, I forgot to mention we received the results of all of his genetic testing.

And those results? Everything was "normal". So, there is nothing obvious in his DNA to explain anything.

Which I interpret to mean: his autism can be reversed.

I am still antsy for this homeopathy appointment. I have been reading both of the books that were suggested. One is really esoteric, and I couldn't recommend it to anyone and still sleep at night. The other one is called Impossible Cure by Amy Lansky. I am not very far in it yet, but it is definitely more readable than the other one and I am enjoying it so far.

The camel milk is going okay. Buzzy was all over the place yesterday. His speech is certainly more clear and he isn't dropping as many ends of words as he was a week or two ago, so that's great. But, his poop is an unholy mess and he was really antsy yesterday and all over the place. He did sleep a little later today, which was good. I am just hoping his digestive system gets the memo to not be stupid. I am tired of the mess. So, we will keep it up. I am emailing another mom who is doing camel milk and I've also asked the FB group about how long it will be like this. I really, really hope not much longer.

That's really about all I've got.

Changing things up

Things have been pretty stable here lately with Buzzy, for the most part. Yes, we changed speech therapists. And we are now driving him to his therapies twice a week instead of them coming into our home. But, his supplements and diet has remained pretty much the same.

I decided to try to re-introduce some of the forbidden foods. I don't really know if he ate any of my attempts at re-introducing brown rice. We tried to get him to eat some pasta, but he wasn't too willing. I did give him some Leapin' Lemurs (peanut butter being the forbidden food), but I didn't note anything too different. However, I did add one huge thing this week. So, I think any reactions are now automatically suspect, because I am not sure what to blame it on.

Wednesday night the camel milk arrived. It was nice and frozen solid. I kept out one pint to thaw. We started him with 2 oz on Thursday morning. I didn't notice anything out of the ordinary with him behavior-wise. Maybe he was a little more cranky and little more likely to tantrum.

Friday he was definitely throwing more fits, being more disagreeable, and having more tantrums. His poop turned nasty. I know that the camel milk might cause some die-off, so I wasn't too worried. But, I hate nasty poop. He also napped - just laid down on the floor and fell asleep. Which is not like him at all. I really think it was the camel milk.

Saturday was pretty much the same - more tantrums than usual and another nap. And nasty poop.

Today, he woke up with a poopy diaper, but it was really solid. Like (here comes some TMI) pebbles solid. Which is so rare for him. His mood seems to have stabilized, but the jury is still out on whether he is going to take a nap or not. He is lying on the floor here looking really close to napping, but he's not there yet. We will keep it up and see where it takes us. One of the women who started the camel milk FB group messaged me and wants to talk to me about her child's experience with camel milk, and I am excited to talk to her - which I will do Monday. I had posted to the group concerned about the poop issue and I was worried that he might be allergic. I feel so grateful that I am "meeting" all of these amazing people who are so willing to give their time and expertise and answer my questions and help me along. I don't know where my son would be without the internet, but it wouldn't be good. I have received so much help from many people (and many of them in the last 2 days!). I try as often as I can to give back a little of it. I hope to (when I am a little further into my journey) become a TACA mentor.

I also decided to go forward with homeopathy. We have a good window here where we aren't changing any supplements (since we don't see his doctor till mid-May) and I keep reading so many awesome things and so much awesome progress with it. I heard good things about The Center for Holistic Healing, so we are all set for an appointment on the 29th. I am looking forward to getting started with it. I think this, together with the biomedical interventions (and the actual therapies) will really get Buzzy moving in the right direction.

As for my interest in Dr. Goldberg, I've found some comments from parents that make me think this isn't the right path for us at this time. Perhaps if we aren't seeing any changes in Buzzy with what we are doing for him I will revisit a trip to Dr. Goldberg. For now we will stay the course, especially since he is making such great progress.

And that nap? Despite everyone and their sister coming in to talk to me, Buzzy has continued to sleep. It's amazing.

Busy - but not this month

It's time to get caught up on posts!

A week or so ago, we finally got the long-awaited urine test results. I know, I know. It's really a sad commentary on your life when you look forward to something like that so much.

There was a lot of information. And most of it, I have no clue about. He showed a high need for all tested antioxidants: vitamins A, C, E, coenzyme-q 10, and alpha lipoic acid. And high need for vitamins B1, B2, and B7. The rest of the Bs were borderline. He also tested borderline for Zn, Mn, and Mg. 

The only thing he was high in was molybedenum. I don't know if it was an "okay" high, or "too high". The "x" was all the way to the right. 

He was tested for mitocondrial dysfunction - he was in the middle. Need for methylation - none. His score was all the way to the left. Perhaps he's an over-methylator? I don't know.

He showed a need for glutathione.

Then there was a huge picture of the Krebs cycle. He had a bunch of abnormal numbers on the right side of the process. Things like iso-citric acid.

Then there was the final page going over metabolic stuff, where many areas were abnormal, like high markers for bacterial dysbiosis. That wasn't too surprising.

So, overall - over 7 pages of things, only the rudiments of which I understood.

We have our appointment in a month. Yes, that was the earliest available. Ugh.

I still haven't heard from the geneticist about his first test results. 

We just started today with his new schedule and new speech therapist. (She had the flu last week.) I hate the two hours I have to spend in the car driving him to and from the therapy, but I am trying to do what's best for him. The baby isn't too excited about the whole deal, though. I can't say I blame her. We will be doing the same thing tomorrow, except worse. He will have 4 different therapies tomorrow, starting at 9:45. I hope he does well. 

I signed up to attend the Autism One Conference in Chicago last night. I don't think I will be there every day, but there are a lot of different talks I want to attend. I am pretty excited for it. It's being held at the end of May.

I have been doing a lot of reading about how beneficial camel milk is for kids with messed up guts. I placed an order on Friday for 10 pints. It should be here Wednesday. I am excited to start this, as well. I have high expectations. There is actually a lot of scientific research on this, too. I know it sounds crazy, believe me.

We have been having more tantrums around here lately. I am not sure why. He has been pitching a fit because I won't let him open and close and open and close (etc.) the garage doors. It's been kind of getting old. I had to manhandle him into the car today to get to his therapy and I had to manhandle him into the house after we got home from his therapy. It's not exactly an easy task with the baby to handle, too. 

Buzzy has started to answer "yes" to questions. Not all questions, but some. He has "no" mastered, but I would love to ask him a question like "Are you hungry?" and have him answer "Yes!" when he is. We are getting close, I think. 

I am also looking into homeopathy to help him out. Not now, but it's something I am keeping in my back pocket for when we are waiting for appointments and I need to "do something NOW" as I am wont to feel. 

Well, the Buzz thinks it's time to help me post an entry. I guess I have to cut this one short!

The chasm widens

I have been doing a lot of thinking about the baby. She is delayed in a few areas. And such small things she would have to do to catch up! All she needs to do RIGHT NOW is say two words with meaning and she would fall right in line with her peers. It sounds so easy. And yet, she can't. And I really don't see that changing any time soon. She is able to lift her shirt to look for her bellybutton, but she can't look at me when she's asked "where's mama?" And with every passing day, I fear the chasm between her abilities and her peers' abilities widens.

Then there's Buzzy. The list of things he needs to be able to do to catch up with his peers is a lot longer. And while the chasm isn't as big as it was at one time, it's still there. And some days it's unfathomable how he will - we will - cross it.

Buzzy saw the geneticist on Friday. They took his height and his weight and his head circumference. They worked up a family tree with genetic history of extended family on it. Then we talked about how much testing would cost. (Answer: if we had NO insurance, it would be great and FREE. Because have insurance, we will pay more than the $1500 per test, to help pay for those without. And we're getting two different tests.) The we met the doctor. We liked him. He was very personable and knowledgeable about autism. He was familiar with a few studies that I had just read about the day before. We both liked him. He examined Buzzy's hands and looked him over, but didn't take any formal measurements. We again talked about testing, and decided to go with an autism panel test (a series of metabolic and other biochemical tests) and the CGH (microarray).

We finally got around to getting his blood taken for these tests yesterday. He also had to give a urine sample, and he did great on the potty and gave a nice big sample. The biochemical tests will have results in 7-10 days. The microarray will yield results in 3 weeks. Tick tock.

We are still waiting on the urine test results.

We have finally gotten more speech for Buzzy. Now every Monday and Tuesday, I will drop him off at Skill Sprout and he will have 2 hours of ABA and one hour of speech therapy. It will be a pain to drive there and drop him off, but it will be good for him to have a different environment and get more therapy. I still need to inform his former speech therapist, since I suspect my services coordinator failed to do so. (In other words, he had speech from her this week after I was told she had been released.) The rest of the week will have the same schedule.

It's been warmer here, so we have been able to get outside more often, so that's good.

That's all I've got. Still desperately looking forward to the summer and to more answers.

More Progress

Buzzy's speech evaluation from a few weeks ago went okay. I had the distinct feeling that the woman felt like I was wasting her time. She said he didn't need as much therapy as I was interested in getting and even asked if I still wanted to do the evaluation. After dragging my kids there and walking across their huge parking lot (and it was freezing outside) and walking up a flight of stairs and through their gym (like, sweaty people exercising kind if gym) to get to the speech room, I was NOT going to say no.

Needless to say, I was annoyed.

But at the end, I got his results. And once I came home, I calculated some things. So, I will just paste my "findings" here.

In October, I calculated him to have a 68% delay in expressive speech and a 64% delay in receptive. Today he has a 20% delay in receptive and a 10% delay in receptive. He wouldn't even qualify for EI with those numbers - they need to be 30%. That's if the tests are accurate. I suppose they are. I am happy to see such great progress.

I wrote that to a friend. And I am still excited to see how much better he is doing.

As for his allergies, I spoke with the PA. She said to cut out everything that was a 2 or 3 on the IgG list. Anything that was a 1 was okay to leave in. After some finagling, I was able to find a substitute for his beloved fish oil that didn't have salmon. It doesn't have as many omegas in it, but it doesn't have salmon and I am able to still mix his Super Nu-Thera in it without him having a fit, so it's all good.

We are still waiting on the urine test results. The doctor should get them this week. Which means maybe I will get them next week.

The baby and I will be able to get established as new patients in mid-May. I just made that appointment today. I guess I was dumb for thinking that we would be able to get in over Spring Break (which is next week). When I heard the scheduler flipping through pages for about a minute I knew it wasn't going to be good. Sigh.

We have also been making progress on the potty training front - as long as he is naked from the waist down (socks are okay). He has been doing great on the potty with both poop and pee - and even more significant - telling us he needs to go.

So, we have added to his elimination diet and we are continuing his supplements and continuing to make progress. He is sometimes using 4 word sentences without prompting. His speech is getting clearer - especially if we help him practice words. I am happy with the progress he is making.

Now if it would just warm up here, we could go outside once in a while!

Long time, no write

I haven't felt the muse speaking to me until today, so I let it go. But, I am back with some things to talk about. So, here we go!

Last week, I had to take Buzzy off of all his vitamins and shots. Everything. I needed to collect a urine sample from him that was all Buzzy and no good stuff. For 4 days. I figured while I was doing that to do the pyroluria testing on him as well. I stopped all his vitamins last Saturday. And aimed to collect his urine on Tuesday. I needed a first morning sample and then a sufficient one later in the day.

By Monday the Buzz was getting a little squirrelly. By Tuesday I could see his focus was definitely not as good as usual. By Wednesday (incidentally a snow day for my husband and girls) things were deteriorating rapidly. And I missed his first morning urine because he woke up earlier than usual. I was definitely not happy. I did manage to get barely enough sample to send off for his pyroluria testing, though. I called them and they offered that the bare minimum they needed was 8 ml. Well, I gave them that.

Buzzy can use the potty if he is naked during a 2 hour period with zero to one accident(s). So, that's how I got that sample. I did have to grab the potty right away before he dumped it, though.

Anyhow, I devised a plan to get his first morning urine. I would wake him up 6 or so hours after he went to sleep and have him sit on the potty and pray he would have something in there. Then, I would put a urine collection bag on him and catch that and combine the samples (which was okay with the testing company).

So, when the baby woke to eat (at around 3:30 in the morning), I grabbed Buzzy and he went to the potty. (Not as easy as it sounds.) And I had enough to use for testing, but I bagged him and combined it anyhow.

I already knew that going off his diet was bad news, from what we saw in December. I didn't really think all of the supplements would have an effect. Or such a dramatic effect. But, they did.

By Wednesday he was drooling. He was toe walking. He was throwing tantrums. He lost focus. He was back to his "old" self. Which wasn't good. He started waking earlier and earlier each day. He will sleep in anywhere from 8:00 to 9:00 in the morning, regardless of when he goes to bed. (We don't usually get him to bed till 9:00). He woke Tuesday at around 7:30 am. Then Wednesday, 7:00 am. By Thursday, he was up at 6:30. I was exhausted. And he was all go, go, go from the moment he woke up. As soon as he got up Thursday (and his samples were done with), I started him on his supplements. And that night, he got his B-12 shot.

During that time his poop went from mostly solid to mostly pure liquid with caustic butt-burning properties. He was a mess. And I guess I now have another answer: he needs the special diet. And he needs his supplements. I was starting to wonder if they were all worth it. Ha ha!

Today, I had to wake him up at 9:00, he was in deep sleep. He was a little wired today, but no tantrums. And he's had his first solid poop since he went off his supplements.

He also got his allergy test results back. I have a consult tomorrow with his doctor to go over. I couldn't wait till we got the urine test results back, because he tested positive for a lot of things. And I want to know how to handle it. He had quite a few IgG positives (almond, oats, gluten, wheat, yeast, mustard, cow's milk, coconut, salmon, etc). I won't name them all here. He also tested IgE positive for two things: peanuts and wheat. Based on my reading only the IgE ones are considered true allergies. So, I will talk with the doctor tomorrow and see what the plan is. In all my research, I have really just confused myself. So, we are waiting and not really modifying his diet at the moment (except to avoid peanuts and wheat - which we were already doing with the wheat).

We will have the pyroluria tests back tomorrow - all of them except the baby's. There is no way I could get a sample from her at the moment, so I am just hanging on to her test kit. My oldest was at the lowest end of abnormal possible - so I am treating her with some zinc lozenges and having her take b6. I am comfortable giving her what I am since they are for kids and Buzzy takes them.

So, for now we wait on urine test results.

I also have a speech evaluation scheduled with a different therapy place nearby. That's set for tomorrow morning. I haven't been able to make much progress with getting his speech switched over to his ABA providers. We are at the point where I gave my service coordinator their information, and she is supposed to call them. I'm not holding my breath.

On an annoying note - our service coordinator switched over billing for speech services to my insurance company back in January. Which I DID NOT give her permission to do. We talked about it, and I told her to "hold off for now". Of course, we could have been getting more therapy for him all along since then, because we were/are no longer subjected to EI's constraints. So, I am super irritated (even more than usual) with EI. And I am going to have to deal with them again with the baby? Oh, goody.

Well, that's all for now. As usual - waiting on test results. And I have started "brushing" Buzzy, too. Of ocurse, I just saw I've been doing it incorrectly. I will talk about that more next time. I will try any wacky thing I see on the internet - as long as it is pretty innocuous  And what can be more innocuous than taking a soft brush and brushing your kid? Well, it can't hurt. Let's see if it helps!

T-t-t-t-hat's all folks!

Back from a Break

I didn't know it, but I guess I needed a little break from blogging. Hence the lack of posts around here lately. I had the time on a few occasions around here to write a post, but I found myself doing anything but. So, I decided to come back when the time felt right, and I felt like I had something to say.

Buzzy has been doing a lot better in terms of his articulation and general understandability. (Is that even a word?) Whereas before he would call a banana "na-na" it's now a "ba-na-na". It doens't flow together like an NT child would say it, but it has 3 distrinct syllables, which is good. Also, we call pacifiers around her "buzzifiers". He would call them "fiers". Now he says "buzz-fier" which is also an improvement. "Gro mama" has become (with some reminding) "gro-sssss mama". That last one is one of his catch-phrases. Lots of things around here are gross.

Just a little update on where we are with all the irons I have in the fire...

-Service dog - we will hopefully hear something in between June and December. I am really hoping and praying they will have a match for him. So, that's where that is, and where it will be for the foreseeable future. This is from the place locally. On hold is the place where we would have to fundraise. I am not doing anything with that right now. And hopefully won't have to ever.

-Allergy testing - we received the test kit last week and I just had his blood drawn for that on Monday. We should have results in 2-3 weeks. I wrote on the calendar when we should start getting our undies in a twist about that.

-Pyroluria testing - A friend told me about this issue. The body doesn't remove some metabolic byproducts properly. It can be tested with a simple (ha ha, is anything simple?) urine test. I ordered the test kits for everyone in my family (except my husband) on Tuesday or Wednesday. I definitely meet a lot of the criteria for this particular issue. It is easy to fix with vitamin supplements  If Buzzy is positive, I will definitely go over the results with his doctor.

-Baby sister - she is now a year old and is showing a lot of similar delays to her brother, but fortunately not as severe. We will be adding her as a patient to Dr. Usman. I am going to try to get them both in at the same time to avoid multiple 2 hour drives up there. I am heartbroken about this. When I think of my beautiful baby girl having the same problems as Buzzy it's almost unbearable. And how I am I going to give her shots if she needs them? And watch her get her blood drawn? It just sucks. There are no other words for it.

-Urine testing - I am going to try to combine this with the pyroluria testing. For both of them he needs to be off any supplements for a period of time, so I hoping to kill 2 birds with one stone.

-Dr. Goldberg - this is the doctor in California. We have not heard anything back from him. I filled out a bunch of records requests and hope they have made their way to him and we get an appointment scheduled. I am still interested in his opinion, but I am wondering if Dr. Usman can't pretty much do the same thing he does (minus the neuroSPECT). So, given some time, I am less enthusiastic.

-Geneticist - We have an appointment for March 29th. We were originally scheduled for the 22nd, but that had to be changed. Grrr. I still have to fill out release forms and fill out the regular registration forms. I am wondering if they will test me for MTHFR, because I really want to know where the bad copy of the gene came from.

-More therapy: Skill Sprout is very close to being able to provide speech therapy for Buzzy (they do his ABA already). All I need to do is get a hold of my service coordinator and make it happen. Sounds easy, right? Bwhahaha! They will be able to see him twice a week (Mondays and Tuesdays) and back-to-back with his ABA. As long as I can get EI to sign off. See below.

-Did I mention getting a hold of my service coordinator? And how I can't ever seen to be able to? Yeah. She never returns my phone calls any longer. When I last saw her in October, she told me to look out for the transition meeting "at the end of January". I called her mid-January to ask about it. And again at the end of January. And then I pulled out the big guns and had my husband call her. Amazingly (since he called her from work - he's a principal) she answered. Turns out the transition meeting was the following day and she was sure I knew about it. WHAT???!!! Anyhow, I managed to show up and got Buzzy's evaluation for special education services reserved, but just barely. She wouldn't even look at me, and didn't acknowledge my presence. Guilty conscience, I suppose. The thought I may have to deal with more EI crap for the baby makes my butt itch. Ugh. But, the good news is, at least for Buzzy, we will now deal with the special education association for our county. And they seem to return phone calls. Yay.

-Someone I go to church with works as a PT for kids. I have an evaluation set up with them for additional speech services. I called them when I was waiting for Skill Sprout to make things happen. I will take Buzzy to the eval and maybe we can get speech through them, too. Maybe insurance will even pay for it. I don't know. All I know is that I want to keep my options open. And avoid EI as much as possible.

Whew. I think that's all I have on the medical/therapy front.

I want to talk a little about ABA. I meant to stick around last week and watch part of a session, but I can't now remember how I talked myself out of it. So, I am still largely clueless about how the sessions are conducted. However, after every session I receive an email that talks about the skills worked on and the results. I know he is given a task, and he does 10 trials of it. Each trial is recorded as a (+) or a (-). The + is given if he successfully completes the task. If he gets (out of 10 trials) 80% completion, then that's good. But, he has to have an 80% (or higher) success rate, 3 times before a task is considered mastered. And once a task is "mastered" they periodically do it again with him as "maintenance" to make sure the skill is retained.

Here is a recent report:

Responding to nonverbal communication: Get item therapist points to on floor (further away) field of 1 100%  Mastered. Way to go! 

Same/Different: Give different picture 80% Keep up the good work!
Letters Expressive: O Expressive: P BL 100% BL 100% Awesome!
Letters Maintenance 100% Great work! 
Yes/No questions: Do you want this? Yes with object not present 40% Keep working.
Joint Attention: Faces Various face changes 0 n/a
Mands for missing items and actions: I need ____. Cup/Milk 60% Keep trying hard.
Mands for missing items and actions: Maintenance 100% n/a
Greetings Waving bye, further proximity 60% Doing better. 
Listener responding maintenance 100% n/a 
Listener responding: What eat and drink BL 90% Great job!
Colors Receptive in messy array (red) 100% Awesome!
Direct instruction emotion Expressive happy BL 60% First time having to expressively identify. 
Direct Instruction emotion Maintenance 90% n/a 
Shapes Expressive: Rectangle BL 100% Diamond BL 100% n/a
Learning to talk: Repeat what therapist says (meow, moo) 90% Mastered! Way to go! 
Gross Motor Imitation: Put arms out to side 60% Keep working!
Fine Motor imitation: Making right fist 70% Keep trying hard.
Beginning parallel play: Rolling ball 90% Amazing rolling back and forth today! 
Joint attention duration: Listen to story for 1 minute intervals 80% Good listening and turning pages. 
Respond to name: Eye contact in unstructured setting on floor 60% Keep looking when name is called. Sitting at table 2 minute intervals at end of session 100% Amazing sitting at the end!

---------

So, those are some of the skills he is working on in ABA. When I look at his progress, I am proud of how hard he is working. All of these are things that come so naturally to children his age, without intensive instruction  Which then makes me feel sad and angry all at the same time. He is going to have to work hard to be able to do some of the simplest things. But, then I think about how easily he's learned his letters and numbers and he can count so well, and I don't feel quite so depressed. It's still a long, hard road for him. But,  he is happy and making progress, so I will take what I can get.

Buzzy

Yes. He wrote the last post. I have no idea how he managed.

I will do a proper post later today.

Darn Kid

A real post!

       We have been put through the wringer here, lately. I finally came down with this terrible cold. The last few nights I've had to sleep in a recliner and my sleep wasn't all that restful.

       Anyhow, I last mentioned I was reading this book The Myth of Autism.

       And a lot of the things he says in his book make complete sense to me. I have always felt that autism was NOT a psychiatric condition. And that its designation as such makes no sense to me. I have felt it was more properly categorized as a medical condition. And, as such, could be treated (and dare I say it?) cured.

       He also makes the point that it's not normal to have a child that is meeting all their milestones at 12, 18, or 24 months and then they stop developing or they regress. Which is also something I've said and been thinking. How can it be normal? If its evidence is not present from birth, how can you suddenly develop it?

       He also points out the differences between what he refers to as "autism" and "classical" (or Kanner's) autism. And he makes the point that they are different disease states. In classical autism, the child has NEVER been affectionate. Ever. 

       The doctor who wrote this book treats children with autism. He feels its caused by a breakdown of the immune system which affects neurodevelopment. He thinks the body (and brain) are being overrun by a form of herpes virus and that its damage can be reversed. 

       The first thing I saw in the book when I opened it to read it was a set of images (called a neuroSPECT) which measured brain blood flow in an autistic child. It literally looked like there were holes in the brain. In other words, places where there was zero blood flow. It was, most notably, in the temporal lobes. Fascinating. And then there were the after scans, images where the blood flow looked remarkably (but not entirely) restored. And with that restoration, came amazing improvements in the child. 

       I am not unhappy with Buzzy's current treatments. But, I want more for him. And I want to know that I have exhausted every avenue available to me. So, I called Dr. Goldberg's office. We received the new patient packet Monday. By Friday morning I had it completed and had records request forms faxed back out to 4/5 of Buzzy's doctors/therapists. (One sent his records without the form - because they weren't a doctor, so I guess it wasn't needed). The final one, the doctor's office was closed on Friday. So, I emailed them. 

       I am praying we can get a good time for his first appointment. This doctor is right outside of LA. Yes, Los Angeles. We are wanting to arrange a time when I can fly out there alone with Buzzy and stay for as long as we are needed (a few days at the most) and then fly home. To say that the thought of navigating LA by myself is terrifying would be an understatement. But, I am focusing on one thing at a time. First, we make sure they have all the records, then we get the appointment. Then, we will worry about the rest. Ha!

       There are some definite contradictions in the two treatments - Dr. Goldberg treats NIDS (neuro-immune dysfunction syndrome) and feels that some of the treatments that biomed/integrative medicine doctors do are detrimental. He finds the excessive supplementation a bad idea, along with chelation. Well, in terms of chelation - not just bad but potentially dangerous and damaging. I am sure integrative medicine doctors wouldn't like Goldberg's use of SSRIs in the later stages of treatment. I am not sure how I feel about that, either. Same with chelation - I am not sure how I feel about it. Sometimes I think it's a good idea, sometimes I just don't know. 

       That being said, both approaches start with the same thing: change the diet. And since we haven't gotten too far into the supplementation plan, I am comfortable with trying to take what I feel are the best ideas from both approaches. It's all I can do.

       I called Buzzy's biomed doctor to get his allergy testing taken care of. We have the prescription already. We are now waiting on the kit to come in the mail. Once the kit arrives we will go to the local hospital and have his blood drawn. The kit tests for 96 IgG allergies and 12 IgE ones. (I may have those numbers reversed.) I think those results will be interesting. 

       We also have an appointment with a geneticist for March 22nd. That will be here before we know it. I feel like we are going to get a better picture of what to do for Buzzy with all of this additional information. I also have full intention of getting him an MRI and EEG. I want to know as much as possible. Knowledge is power, as they say.

       I still intend on doing a post about what Buzzy's therapies look like. Unless something ground-breaking happens, I will do that on Wednesday. (I am taking Sunday off.)

       So, for right now, I am happy with the direction we are moving in. We still have tantrums. We still have echolalaia. And verbal perseveration. But we also have a loving, sweet boy who loves to give hugs and kisses to his sister (especially his baby sister) and everyone else. And who is doing awesome with learning his letters and numbers and is doing great at ABA. And loves to play chase with his older sisters and loves to climb the stairs and lure the baby up after him. He is fun and playful - and I really want to get to know him. He wouldn't be where he is right now without the diet and treatments, so we will keep pressing on.

So much to say...

And so little time. I am afraid I have to postpone a real entry, yet again. My husband had to go back for a meeting and it's already time to give the babies their bath.

Perhaps tomorrow? I hope I will have the time then!

A Day in the Life

       I don't spend too much time talking about how Buzzy behaves on a day-to-day basis. I am going to do that right now. Sometimes it is so painfully apparent that things aren't quite right with Buzzy. Sometimes I feel he is right where other kids his age are. And in some situations, I feel he is advanced. And I am grateful that there are any instances at all where I can feel he is advanced. Yay for progress!

       Buzzy does well at night. He does sometimes make some noises in the middle of the night, but it's not too difficult to settle him back down. I just have to go in there, fix his covers and tell him it's time to go to sleep and he is good. Then I walk back out.

       Buzzy wakes anywhere between 7:30 and 9:00. He is pretty patient. He will generally stay in his bed, chattering to himself - for a little while. If you let him go too long, though, he might get noisier and get cranky. Fortunately (knock on wood) he doesn't try to escape his room (we have a gate up). I change and dress his. He isn't potty trained. And he doesn't know how to dress himself, or even really help me get him dressed. He likes to play on my phone while I am taking care of this. I haven't pushed the whole "self-help" issue yet with him, because I feel we have bigger fish to fry at the moment.

       Then we do breakfast, which is all his vitamins and supplements and everything else. Generally, he sits really well for breakfast in his chair. Then, some mornings he has ABA right away. If he doesn't, then he bumps around the living room, doing his own thing. And what does doing his own thing mean? Playing with items not appropriate for a 2 year old, of course! He likes to find cords and plug them into phones, or plug them into outlets. I have given up a long time ago trying to get him to NOT plug things in, so I have showed him how to do it properly. I don't like it, but it is what it is. He likes to drag one of the big vacuums around, as well. He likes to take the telescoping handle out and pretend to vacuum with that. He will (at times) run up to his sister and give her kisses. He also likes to take down the gate that gates off the stairs and lure his sister upstairs. I am not sure why that amuses him (getting his sister to come upstairs), but he really likes doing that. Probably because I really like him NOT doing that.

       Lunch is a little harder to get him to sit down for. He also likes to constantly raid the cabinets and fridge (if I am dumb enough to leave them open and unlocked). He definitely likes to graze. I try to engage him to play with baby and me or do therapy with him, but that can be challenging. A perfect example of this was yesterday. We were all settled in watching the Super Bowl game, and Buzzy was off in the kitchen by himself playing with a little tube pretending it was a vacuum. It made me sad to see him there off by himself. He did later come to me and put his head in my lap and fall asleep, though.

       During the day, he doesn't want to be read to. He sometimes will want to play with puzzles or play with trains, but it's hard to get something set up that will hold his interest - and that the baby won't come over and destroy.

       While I've been typing this, he's been down in the basement with me, turning the air hockey table on and off, turning the fake fireplace on and off, and plugging cords into a surge protector. It's like he doesn't need me at all - for interaction.

       But then, he has started to want me to do everything for him: put him in his car seat, he needs me right there when it's bath time (he won't go upstairs unless I am right behind him), I do his bedtime routine, and I also have to put his shoes on, even if one falls off in the middle of church. He also has to be loitering when I shower, and will tantrum if he's not in the same room. So, I shower while he hangs around in our bedroom. He doesn't bother me or anything - he just wants to be where I am, I suppose. Fortunately, he doesn't really get into anything. He just plays with the vacuum up there and looks for pacifiers to steal.

       I've been reading this interesting book, called The Myth of Autism. I will have to talk about that next time, because it's getting late here and I need to help with the bedtime routine.

Plotting and Planning

I am just going to jump in with my random thoughts and whatnot during the last few days.

• I am still tired of the process of getting Buzzy more therapy, particularly speech. In fact, his speech therapy appointment this week was virtually useless. He had a fit the minute his therapist walked through the door. He ended up doing about 15 minutes tops, while I had to sit right there with him. I still have no idea why he was so unahppy. He did great just that morning with ABA.
  
• I finally looked into various autism websites. I don't know what took me so long. I have found a lot of resources and now have some more ideas of where to go next with things.
  
• So, here's one of them: Talk About Curing Autism (Also known as TACA.)
  
• And here's another: Generation Rescue
  
• I even became a member of TACA. TACA has been really awesome already. They have blueprints on their website of what to do, each step of the way with biomed treatments, after the diagnosis, for IEP meetings, etc. Oh, and all of these things were free. I became a member to support their cause (and the Kirkman supplement discount didn't hurt, either.)
  
• I signed up to get a mentor with TACA as well. I am really looking forward to talking to someone who has been through it all.
  
• I asked my pediatrician for a referral to a geneticist. I have been uneasy that no one has mentioned getting Buzzy tested in this manner - despite the fact that I am reading of other parents who as soon as their child got an ASD diagnosis, they also saw a geneticist. That, and the fact that developmental pediatrician he saw said [the appointment he was diagnosed at] that this was the last time we would probably see him. So much for continuity of care.
  
• I am getting Buzzy tested for food allergies. I am tired of trying to guess and second-guessing if this food or that food is okay. I want to know for sure. I am going to have this done in a couple of months at his next appointment. Maybe. If I can do it locally (and sooner) I will end up doing that. Action is progress to me. 

Well, that's really all I have for now. I have plenty to keep me busy for sure. 

Appointment Updates

      On Thursday we had our much-awaited appointment. The two hour drive up there went (relatively) uneventfully  but we were about 10 minutes late. I have no idea how it took us 20 minutes to get loaded into the car and out the driveway, but there you have it.

      We went over the blood work first. I can't remember the significance of the creatinine level (oops), but she said it wasn't a big deal. The alkaline phosphatase wasn't a big deal, either  She said that level was probably a little off because it is in kids who are undergoing growth spurts. So, the blood work had nothing we needed to take action on.

      I already talked about Buzzy's poop results at length. What the nurse said we needed to do was get his clostridium down and increase his lactobacillus. So, we added a yeast supplement (Saccharomyces Boulardii) and added a single strain lactobacillus product.

      However, the night before his appointment, I took him off the probiotic that I put him on - my thought being it was too much for him and was causing his decrease in appetite. I guess I was right - since putting him on the doctor prescribed ones, his appetite has returned and he is eating like he used. And I am breathing I sigh of relief. No more self-prescribing for me, I guess.

      She also added methylfolate because of the MTHFR mutation. After he is on all of these new supplements, we are going to follow up with a urine test. I am actually kind of confused about the requirements of the test. I thought the nurse told me that he needed to be on the new stuff for 6 weeks before we tested him. When I read the instructions for the test, it said he needed to be off all of his supplements for at least 24 hours. Hmm. So, I called and asked. And they said he need to be off of his supplements. But, I am still confused - if he needs to be off of them, why wait 6 weeks? Or maybe the follow-up appointment was for 6 weeks out and has nothing to do with when he's on or off of things. Sigh. Maybe I will have to re-read the paperwork.

      And have I mentioned that the thought of taking him off of his supplements for even one day makes me twitch?

      Either way, we go back in about 5-6 weeks to talk about what the urine test results are and see what the next steps are.

      We still have obsessive speech. We still have a lot of time spent playing with vacuum cleaners and my iPhone and not much time being social. We still have me eating holes in my stomach with worry/stomach acid. And there are times when I am proud - so proud - of his accomplishments and then I hear about someone with a child his age (or younger) and what they are doing and I feel like I crash down to Earth again.

      In other random news, today wasn't a particularly good day with speech. Buzzy had a number of frantic, hysterical fits and he did maybe 15 minutes of work. He did well in ABA, so I am not sure what was going on there. I just found it terribly frustrating. I had to stay with him the entire time, and baby kept distracting him. Usually we do speech at the kitchen table, while he's strapped in his booster chair. We had to do it in the living room in his EduCube, which was fine and all, but he was very distracted, as I mentioned.

      Here's hoping all of that is die-off and in another week he makes even greater strides forward!

Taking a sick day

I have come down with some sort of crud that is making me feel like death. I will do my best to get an update in tomorrow. Chills, then I get hot, aches, pains, and misery.

I feel as miserable as Sheldon acts on the Big Bang Theory when he is sick. I also feel like a wimp. My husband has been taking care of me, so hopefully tomorrow will be a better day.

Of haircuts and headway

       We still have our appointment Thursday. That's tomorrow. Yikes!

       We still have ABA tomorrow, too. We will be doing 8:00 to 10:00. That's early for some of us, considering how my husband has been sick this week and baby hasn't been sleeping well at all. She seems to just be constantly crabby, even all day. I am not sure what her issue is, but I hope it resolves soon. Sleep deprivation is no fun.

       The Buzz has been eating less and less lately. He used to have such a hearty appetite, but he's eating pretty lightly now. I worry. I worry about all kinds of stupid things. I worry that he's going to get worse because he's not getting enough healthy food to eat. I don't have too much control over that, so I guess I need to let it go.

       We took Buzzy to get his hair cut today. He did a lot better than he did the last time we got his hair cut. He only whined a few times, but he didn't have the all-out crying fit (where I had to bear hug him most of the time) and then I had to hold his head still. That was fun. We have started using his pressure vest, so I made sure he was wearing that when we started. I am not sure it helped, but I know it sure didn't hurt. I am trying to get him to wear the pressure vest as much as I can at home before the more difficult parts of his day come. I am hoping it helps.

       We also have been having more tantrums here, ones that I can't predict or anticipate. He started with one this morning, but I am wondering if it was because I didn't get him up right away and just let him be awake for a bit before I went to get him ready. He wasn't upset or anything, just awake for a little while before we started the morning fun.

       Well, that's really all I have for the moment. I will do my best to update before Sunday if there are some Earth-shattering developments, otherwise I will keep to the schedule.

Here we go!

I was puttering around the house the other day, composing an awesome blog post in my head. And it was something more profound than "I am waiting for poop test results". And yet, here I am now, and I have nothing witty to say and nothing profound to write. I guess by the time I am "allowed" on the computer, I am too worn out to dig very deep and writing something that doesn't suck. Ha ha. 

Buzz is still obsessing with vacuums, cords, electrical outlets, and the like. He is still talking about the vacuum and how it broke the light. And how it ate his pants. He has added "gross" followed by one of the family members' names - usually baby. And he will look in the pantry and point to all the cereals he can't eat and say "gross yuck". I had to train him to do that. We don't want him to want to eat those cereals, or to even want them, so it appears my teaching has worked. [The only reason we have those cereals is because my sister works for General Mills and she got them for us.]

He has started to nod and to say "no". And I continue to struggle with myself when I hear about kids his age and what they are saying and doing and how far from that ability level it feels like he is. I have decided to tell myself as long as he is caught up by kindergarten, his chances are good to lead a "normal" life, whatever that may be. That usually makes me feel better. I know it beats where I was even 4 months ago. 

We are also experiencing a lot of echolalia here. I sometimes imagine what my day would be like if Buzzy were developing age appropriately, and to be honest, it's like a blank, black image. It has been so long since I have had a child his age and I just don't remember what it was like. I have no perspective. 

Okay, well now that I have that out of the way, it's time to talk POOP. We finally got the results in the mail! Once I started reading it, I was wondering what went wrong, because the results were so normal. Mostly. He had absolutely no evil bacteria present. Small amounts of "commensal" bacteria - those which are neither beneficial nor pathogenic, and a good amount of expected and beneficial bacteria. He was low on Bifidobacterium, though. And the weird part - he had absolutely no Lactobacillus and Enterococcus. I am wondering if those latter two flourish when you have a measurable dairy intake. Or if his system is just really bizarre. 

Yeast - none found. No parasites. No protozoans  (I would have died if he had parasites. I hate anything resembling worms, unless it's earthworms or other innocent worms. Maggots and lavae make me insane, though.)

All the other tests fell within the normal ranges, except for secretory IgA. That was low. And from all appearances (based on my consultations with Dr. Google) leads to many of the issues we are seeing with Buzzy. Low IgA contributes to the whole leaky gut idea. So, I suppose it's amazing that Buzzy doesn't have more issues and isn't sick more, since his immune system isn't doing what it's supposed to doing at the most fundamental level. 

We have an appointment on Thursday to go over these results and the ones from Buzzy's blood tests. I know they will recommend a more focused probiotic (I am hoping it's the one I already bought and am using on him - which I bought before I got the test results). Also, I am guessing they will recommend a glutamine supplement. So, we will see about that and what else they might suggest. I am sure there will be at least more thing to supplement him with. 

I am still kind of surprised at the results, though. I thought Buzzy would be over-run with yeast and have oodles of nasty bacteria in him. In fact, I did a double-take when I saw the initial test results. I guess the Buzz is full of all kinds of surprises! 

I may not do an update until after his appointment on Thursday, unless I have a lot to say about this week. So, either Wednesday or Thursday I will have an update.