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!
Thursday, October 31, 2013
Wednesday, October 30, 2013
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.
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.
Friday, October 11, 2013
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.
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.
Monday, September 30, 2013
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.
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.
Tuesday, September 17, 2013
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.)
Monday, September 2, 2013
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.
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.
Saturday, August 17, 2013
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.
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.
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