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.
Saturday, July 13, 2013
Thursday, July 4, 2013
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.
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.
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.
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.
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.
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