Friday we had his follow up appointment with the osteopath. Kaiden had not been sleeping well at all lately, even with cutting back on the GABA, so earlier this week I took him off the taurine and GABA completely to see if he'd sleep better. And in about 3 days, he did. Not great, but better than he has been. I don't want to give up on the amino acids, because he is gaining mobility, muscle tone, and able to focus better.
The doctor agreed we should suspend the taurine and the GABA for now, and try L-Theanine (another amino acid) and digestive enzymes for the time being. His last fecal screen (in July) showed inflammation in the gut (blood in the stool + elevated white blood cells); we also talked about my guess of what was causing his diaper rash. It was nice to hear as we discussed everything, "Your Mommy instincts have been right on, so if you see anything or have any more insights, give us a call!"
L-Theanine is supposed to help regulate his sleep cycle, and we are to give him one capsule at bedtime. Last night he got his first dose and he slept pretty well. He was up several times for water (up once for water is his normal sleep routine) but went quickly back to sleep each time. He did wake up earlier than we wanted to get up on a Saturday, so we brought him into bed with us to get a couple more hours of sleep, LOL!!!
I'm a little hesitant with the digestive enzymes; earlier on I had tried bromelain with him and he didn't tolerate it at all. But, he eats pineapple now with no issues so hopefully this will go okay. I had been thinking that in the last several months he's not getting as much nutrition out of his food as he should so this should help - as long as he tolerates it. Breakfast went well but the day's not over yet.
Next appointment is at the end of January. :)
Saturday, October 27, 2012
Sunday, October 21, 2012
Today's rant:
I get that most of the world is uneducated about what Down Syndrome really is or what it means, and that includes the so-called "experts". But it never fails to amaze me when people say "oh, (s)he must not have it that bad" or "oh, (s)he must only have it a little bit". It's not a viral or bacterial infection, people. It's an extra chromosome. Either you have it or you don't. "That bad" or "a little bit" largely depends on diet and therapies and how hard you make a person work instead of coddling them because you think they can't do anything or you feel sorry for them. Give them a chance. Give them MANY chances. From what I've observed and learned, it's not that people aren't cognitively capable . . . they might not be physically able but that doesn't mean their mind doesn't work.
When Kaiden began to show delays, it wasn't blamed on the illness that cropped up at the time - the yeast overload and then the seizures - in fact, we were told that the seizures WOULDN'T affect him. It was all blamed on the extra chromosome, we were told the delays were normal and we should expect them. But I'd see a glimmer in his eye, moments of clarity - sometimes only a moment, sometimes maybe an hour, where I knew beyond a shadow of a doubt he was in there, in that prison of a body. And once the seizures stopped . . . but I can't blame his delays all on the seizures. It was diet. Yes, diet. For him, nightshade foods. The seizures were merely a side effect of nightshade foods. He, unlike many of the population, has a very low level of tolerability. Highly sensitive.
My main goal of this blog is to get someone else to try eliminating nightshade foods - for Down Syndrome or any other "global delay" disorder. Just try it. Am I right? Or are we an isolated case? I'll never know, NOBODY will ever know, unless more people try it out.
When Kaiden began to show delays, it wasn't blamed on the illness that cropped up at the time - the yeast overload and then the seizures - in fact, we were told that the seizures WOULDN'T affect him. It was all blamed on the extra chromosome, we were told the delays were normal and we should expect them. But I'd see a glimmer in his eye, moments of clarity - sometimes only a moment, sometimes maybe an hour, where I knew beyond a shadow of a doubt he was in there, in that prison of a body. And once the seizures stopped . . . but I can't blame his delays all on the seizures. It was diet. Yes, diet. For him, nightshade foods. The seizures were merely a side effect of nightshade foods. He, unlike many of the population, has a very low level of tolerability. Highly sensitive.
My main goal of this blog is to get someone else to try eliminating nightshade foods - for Down Syndrome or any other "global delay" disorder. Just try it. Am I right? Or are we an isolated case? I'll never know, NOBODY will ever know, unless more people try it out.
Saturday, October 13, 2012
GABA update
It's been 1 month since my last post. It's like the GABA builds up in Kaiden's system. We've cut down to 1/2 capsule in the morning, but he is back on the "up every hour on the hour for 3 hours, sleeps for 2 hours, then up, and may or may not go back to sleep" routine again. I mix his supplements in 8-day packs, so the next time I'll cut back to 1/4 capsule in the morning. At least with cutting back to the 1/2 capsule dosage, he is back to being happy. At the full recommended dose, he was a bitch and a half!!
Kaiden is walking pretty well, when he wants to walk. He can take 20+ steps on his own now, no problem. Because his right hip is loose, he swings his right leg out rather than bringing it straight forward and bending the knee appropriately. But we're working on it and he's getting there. :) GABA is also supposed to help with low muscle tone, and I noticed this morning during bath time that his skinny little chicken wing upper arms seem to be just the tiniest bit bigger. His thighs look a wee bit bigger too, but his diapers still fit the same. We still have 2 weeks to go before his followup appointment regarding the GABA. I wonder what will happen if I have to cut his dosage back so much that it's non-existant?
The experience with GABA has been interesting and a bit unexpected: his food related diaper rashes are absolutely GONE. I get that amino acids are broken down proteins, so thereby the gut doesn't have to work as hard to digest them and it allows the gut to heal . . . makes sense now that doubling his meats was too much protein in his system and caused an inflammatory gut reaction . . . I think. The rash was from his urine, so here then is my latest thought: too much meat = inflamed gut = not breaking down the excess protein = more protein in his urine = diaper rash???? Hopefully the doctor can answer that one for me.
Kaiden is walking pretty well, when he wants to walk. He can take 20+ steps on his own now, no problem. Because his right hip is loose, he swings his right leg out rather than bringing it straight forward and bending the knee appropriately. But we're working on it and he's getting there. :) GABA is also supposed to help with low muscle tone, and I noticed this morning during bath time that his skinny little chicken wing upper arms seem to be just the tiniest bit bigger. His thighs look a wee bit bigger too, but his diapers still fit the same. We still have 2 weeks to go before his followup appointment regarding the GABA. I wonder what will happen if I have to cut his dosage back so much that it's non-existant?
The experience with GABA has been interesting and a bit unexpected: his food related diaper rashes are absolutely GONE. I get that amino acids are broken down proteins, so thereby the gut doesn't have to work as hard to digest them and it allows the gut to heal . . . makes sense now that doubling his meats was too much protein in his system and caused an inflammatory gut reaction . . . I think. The rash was from his urine, so here then is my latest thought: too much meat = inflamed gut = not breaking down the excess protein = more protein in his urine = diaper rash???? Hopefully the doctor can answer that one for me.
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