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.