Thursday, February 28, 2013
Oh how we've grown....
My sister sent me a picture taken close to 8 years ago. As usual, she has some rather poignant remarks. Pretty much says it all...
Wednesday, February 27, 2013
Heading in the right direction
Quick post just to stay up to date. James seems to continue to improve little by little. At first, he went a little wild on the B12 and I think wore himself down a little. He was so energetic and wild, but, you know, still barely eats enough so I think he over did things. But I feel like we are starting to see a turn around, again. He, of course, lost the pound he gained, so we are working our way back. Again. But his color looks better and his appetite now seems to be increasing and he is showing interest in newer foods and self feeding. He's asking for things and eating faster and chewing better. All good signs pointing to his tummy feeling better. My current prayer, among many, is that he can can reach over 28 pounds and keep going. Pretty much every time we get a little over 28, something seems to knock him down. So I'd really like to get ahead for a little while!!!
Wednesday, February 13, 2013
Wild child
Just a quick update- no crying:
Almost one week into the latest protocol and James is doing great! We are seeing big increases in his energy and color. Even first thing in the morning. His gut also seems a bit calmer. Nothing normal about it, but the sense of emergency seems to have been stemmed. He actually went a full 24 hours without pooping (someday he's really going to hate me for this blog ;))!
At school, the feedback I've gotten is that he's being very brave and having great days.
Unfortunately, he ate something that disagreed with his stomach the other day, so of course he basically lost a pound. But we are working our way back up to regaining it. The good news is I don't really visibly see where that pound went, whereas normally it's very obvious. This leads me to think its mostly fluids and he'll keep getting better!
He also has a super cool sister.
Almost one week into the latest protocol and James is doing great! We are seeing big increases in his energy and color. Even first thing in the morning. His gut also seems a bit calmer. Nothing normal about it, but the sense of emergency seems to have been stemmed. He actually went a full 24 hours without pooping (someday he's really going to hate me for this blog ;))!
At school, the feedback I've gotten is that he's being very brave and having great days.
Unfortunately, he ate something that disagreed with his stomach the other day, so of course he basically lost a pound. But we are working our way back up to regaining it. The good news is I don't really visibly see where that pound went, whereas normally it's very obvious. This leads me to think its mostly fluids and he'll keep getting better!
He also has a super cool sister.
Wednesday, February 6, 2013
The Follow Up
We had our first (of many to come) follow up calls with Ann from the NNY Autism Center the other day. We went over what we've been doing over the past couple of weeks, as well as the lab results.
Backtracking a little, I'll go back to the actual blood draw. It went as well as it could. I put the lidocaine cream and plastic wrap on his arms, which was possibly more torture for him than the blood draw, but I was hoping for some misdirection. I told him we were going to stop at the doctor's, but not see or even talk to a doctor, and the nurse was going to take off the plastic and look at his arm. I also told him we could do Eve first. ;) He was scared and unhappy, but not hysterical. And with a 45 minute drive, this was a plus. I told all the nurses to speak in code, hoping that at least we could avoid the association of the BLOOD DRAW. I think it definitely helped. He, of course, hated being held down, but Chrissy (my favorite phlebotomist) was amazing. I will only use her. She got as much blood as she safely could and we were all impressed at the amount he output for such a little dude. We did know that there was no way to get all the blood at one draw for all the tests, but wanted a good start. My underlying hope was that the results would show enough that we felt like we didn't need the other tests run.
So then after that, we went to play with the promised puppies and all was good!
Okay, back to the phone appointment. I had a great talk with Ann. She's very understanding, listens to all of my concerns and also never dismisses a gut feeling or any research or protocol we try. I dig that. His initial tests came back fairly normal, but there are a couple things. His IgA is high, which isn't necessarily bad, but can indicate that there's something out of whack with his immune system. He is not anemic, but does have enlarged red blood cells. Normally this happens when anemic, but it still indicates he could be benefitted with B12. Ann's first feeling that he has a problem with the methylation process can be supported with these results. Now, we didn't have enough blood to do the gene tests or test his glutathione levels, and we will do a gene test at a later date. But sometimes the test results don't matter as much as connecting the dots of symptoms to treatment. We do this with horses all the time. It seems like a horse with ulcers, so you try ulcer meds and see if it makes the horse feel better rather than go through the process of scoping the animals stomach. Sure, the scoping gives good information. But I've seen horses that upon scoping do not have ulcers, but still benefit from the medication. Same idea here. Not sure why the equine analogy makes more sense to me, but don't worry, I explained it to Ann as well. I'm sure she feels smarter now. Anyway, it gets us out of another blood draw right away, which may be wimpy of me but bite me. I don't care.
Up until now we have added probiotics, a multivitamin, taurine, vitamin d, digestive enzymes, and cod liver oil, as well as continuing gluten and casein free. We went down this list very methodically and recorded the dates we started each new thing so we could pinpoint each result. He has gained a pound and has lots of energy and little bit better color. He misbehaves like he should, which pisses me off but warms my mom's heart. :) It is honestly great to see him be mischievous instead of miserable. It's appropriate! It's worth mentioning that none of these items are things you would pick up at a CVS or grocery store. Probiotics that don't have to be refrigerated are pretty much useless. Vitamins that you see advertised don't really get absorbed well, plus they are FULL of so much crap, it's ridiculous. Cod liver oil needs to be refrigerated. Makes sense right? It should actually come for the liver of a cod. It's not just a name. How in the world should that not stay in the fridge???
Aaaanyway, tomorrow we will get a delivery from a great pharmacy that is well known working with kids and people with sensitivities, so they are well trusted and have great quality control. Hard to find meds without gluten! Again, crazy. So we will start a nose snort of methyl B12 and glutathione cream (absorbed through skin--cool). And we will see how it goes! I will keep you posted, but some prayers sure wouldn't hurt!
Backtracking a little, I'll go back to the actual blood draw. It went as well as it could. I put the lidocaine cream and plastic wrap on his arms, which was possibly more torture for him than the blood draw, but I was hoping for some misdirection. I told him we were going to stop at the doctor's, but not see or even talk to a doctor, and the nurse was going to take off the plastic and look at his arm. I also told him we could do Eve first. ;) He was scared and unhappy, but not hysterical. And with a 45 minute drive, this was a plus. I told all the nurses to speak in code, hoping that at least we could avoid the association of the BLOOD DRAW. I think it definitely helped. He, of course, hated being held down, but Chrissy (my favorite phlebotomist) was amazing. I will only use her. She got as much blood as she safely could and we were all impressed at the amount he output for such a little dude. We did know that there was no way to get all the blood at one draw for all the tests, but wanted a good start. My underlying hope was that the results would show enough that we felt like we didn't need the other tests run.
So then after that, we went to play with the promised puppies and all was good!
Okay, back to the phone appointment. I had a great talk with Ann. She's very understanding, listens to all of my concerns and also never dismisses a gut feeling or any research or protocol we try. I dig that. His initial tests came back fairly normal, but there are a couple things. His IgA is high, which isn't necessarily bad, but can indicate that there's something out of whack with his immune system. He is not anemic, but does have enlarged red blood cells. Normally this happens when anemic, but it still indicates he could be benefitted with B12. Ann's first feeling that he has a problem with the methylation process can be supported with these results. Now, we didn't have enough blood to do the gene tests or test his glutathione levels, and we will do a gene test at a later date. But sometimes the test results don't matter as much as connecting the dots of symptoms to treatment. We do this with horses all the time. It seems like a horse with ulcers, so you try ulcer meds and see if it makes the horse feel better rather than go through the process of scoping the animals stomach. Sure, the scoping gives good information. But I've seen horses that upon scoping do not have ulcers, but still benefit from the medication. Same idea here. Not sure why the equine analogy makes more sense to me, but don't worry, I explained it to Ann as well. I'm sure she feels smarter now. Anyway, it gets us out of another blood draw right away, which may be wimpy of me but bite me. I don't care.
Up until now we have added probiotics, a multivitamin, taurine, vitamin d, digestive enzymes, and cod liver oil, as well as continuing gluten and casein free. We went down this list very methodically and recorded the dates we started each new thing so we could pinpoint each result. He has gained a pound and has lots of energy and little bit better color. He misbehaves like he should, which pisses me off but warms my mom's heart. :) It is honestly great to see him be mischievous instead of miserable. It's appropriate! It's worth mentioning that none of these items are things you would pick up at a CVS or grocery store. Probiotics that don't have to be refrigerated are pretty much useless. Vitamins that you see advertised don't really get absorbed well, plus they are FULL of so much crap, it's ridiculous. Cod liver oil needs to be refrigerated. Makes sense right? It should actually come for the liver of a cod. It's not just a name. How in the world should that not stay in the fridge???
Aaaanyway, tomorrow we will get a delivery from a great pharmacy that is well known working with kids and people with sensitivities, so they are well trusted and have great quality control. Hard to find meds without gluten! Again, crazy. So we will start a nose snort of methyl B12 and glutathione cream (absorbed through skin--cool). And we will see how it goes! I will keep you posted, but some prayers sure wouldn't hurt!
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