help me clear my thoughts before ds doc appt tomarrow

[gigismom]

I have been trying to swim through the yasko thread and the gaba/glutamine thread to see what applies to ds and have only succeeded in confusing myself and becoming completely overwhelmed. I honestly don't have time to read through it all and retain anything. My kids are all over me, I have almost no free time to myself and when I do I have to pry the computer out of the hands of someone else in the house. When I finally do get the computer, the kids are probably arguing over something, ds needs to nurse or who knows what else. So I only read in little bits so it is hard to really connect all the dots. Tonight after every one is finally in bed, I will have a couple of hours of paper work to do for my job so still no free computer time and then maybe I will let myself fall into bed and sleep... (ok done ranting)

Ds has a follow up appt with his doctor tomarrow and I want to make good use of it. (She is out of pocket as she does not accept ins and very difficult to get in contact with over telephone...I need to get all questions answered tomarrow). At this time I don't even know what my questions are! He started digest gold (1/2 cap 1x per day) and viracen about 2 1/2 weeks ago. He initially had a significant reaction that I posted about then (crazy behaviour, frequent loose poops, poor sleep for 1 night and stuttering). It has gotten better since then but some days are worse than others... ie still very fussy and demanding every afternoon around 5:00 until after dinner (more than usual), some days stutters and some days doesn't, poops have spread back out to every 3 to 4 days (even with mag). However, he has not been needing the suppositories to poop since starting the enzyme and viracen (I had been giving him a liquid glycerine suppository every time he needed to go and still only had a bm every 5 days or so). Poops are not as stinky as they used to be and are good consistency (sorry but I know you all examine your own kids' poop, too!) So overall we are seeing improvement.

I guess I want to know if I should increase the dose on the enzyme and viracen or go up to twice a day or what next? That is one question to ask. Also, if all of these behavioural issues and stuttering might have some basis in metals being released by bacterial die off what should we do to get the metals out instead of just swimming around? His hair test was high in aluminum but I know that this does not necessarily mean that aluminum is what is being released by bacterial die off, if in fact it is metals at all. What questions should I ask to see if the glutamine/gaba imbalance might be applicable to him? Should we just try to supp gaba and see if that changes anything? I feel like right now I have just a tiny bit of info that I need and not even enough to walk in to her office with intelligent questions.

Also, for a few months now he had been taking methyl b12 drops and and folinic acid drops and adenosyl b12 drops that he was muscle tested on. These seemed to be working great as his reactions stopped and his skin cleared up and all was well in that area. Recently, I changed his methyl b12 form to sublingual tabs, and his folate to the thorne mthf folate to save $). He continued to take the adenosyl b12 drops (because I still have some left). I might try the yasko drops next but already had these tabs so wanted to finish them first. Anyway, since starting these new forms it seems like he is more "histmine-y".... slighty more itchy, sneezing in the morning, red eyes sometimes, rarely some very slight wheezing. Are these signs that methylation is not working correctly now or just part of the bacterial die off? Should I change back to drop form and try the yasko? Also, mamafish9, your ds has to take the hydroxy b12, right? why is this? If my ds needed that form we should not have seen improvement initially on the methyl b12, right? This to me says that methyl b12 is right for him and maybe I just don't have the dose right or he is not absorbing it as well in the new sublingual tab form. What do you think?

Can you guys please give me some suggestions of what to ask and what you think the next steps should be? I am worried about the stuttering and behvioural craziness and want to get to the bottom of this. Also, my dh is not so supportive these days because this doctor is very $$ and he does not see great positive improvement from his point of view. He is also very negative about the cost of the various supps he takes. All he sees is the behvioural problems and stuttering which are obviously not positives but I see these as signs that we are addressing the real problems. Please reassure me we are on the right track and arm me with some questions to ask his doc to keep us on the right track and make good use of her time, my time and my $$$!

That was a long post. Thanks for making it to the end!

peace as always...

jen

[mamafish9]

Most docs I know would be absolutely clueless about most of this stuff. So you can ask, but I have no idea what you'll get for answers!

I think the not pooping daily is a huge issue, especially if you are mobilizing metals and/or toxins (very likely to be doing both with the enzymes & viracen). GABA is most definitely worth a try, as is more mag (how much are you giving now? Until he's pooping at least once a day, I wouldn't intentionally cause any more die off.

You can ask what she does for escorting metals out, but most doc answers on that question are dangerous, so I wouldn't implement without doing a lot of reading (or come ask us for the short version!). Stuttering is a sign generally of either glutamates (so supping GABA would help), or mobilized metals doing damage on the way out (in which case you need to have a better plan to handle metals before you mobilize metals again - the first step is to get him pooping daily, so that metals aren't getting reabsorbed). Most people on the Yasko forums see stuttering and then it goes away quite quickly - so it's not extreme or permanent damage, but it can be a warning sign that you are mobilizing more than his body can handle right now.

For B12, different routes and forms seem to have very different efficacy. The Yasko drops seem to be at least twice as effective as the sublinguals I was using before that (in other words, I needed to give at least twice as much to get the same effect). So I'd just increase dose of whatever you're currently using, and see if that helps with the histamines. Methyl form is great for histamine issues, I use it for that with DS. But he gets 10-12,000mcg of B12 a day, and that many methyl groups would make him nutso. You normally see negative behaviors/reactions to too many methyl groups (hyper, disturbed sleep, aggression, etc).

[gigismom]

i agree that most docs would be clueless because i have asked plenty! however, she seems to be an exception to that which is why i am shelling out the money to see her. i am hoping she is not clueless and i would like to try the gaba but need to understand it better. i guess i need to re read that thread but my head is just spinning as it is.

i know we have discussed the mag before. currently he is taking about 180mg (natural calm) but has not been getting it every day. He just does not seem to respond to mag by increasing frequency. It does make his poop runny. This for him is counter productive because when he has runny poop he tries real hard to hold it and will go even longer without pooping. He has actually gone 12 days without pooping on daily mag and then eventually having a gigantic completely liquid poop. This was after holding it and ignoring the urge for many days. He just really hates runny poop. He cries and cries and says that the poop is yucky, has to take a shower etc...This is when we started the liquid glycerine suppositories so he could not hold it anymore. It felt so wrong but it did teach him what a normal sized bowel movement feels like and helped to get his colon back into shape. Anyway, I am just not convinced that more mag is the answer for him due to this complication. What do you think of all of that? Maybe GABA might help him. Just today he pooped without a suppository, no fuss and I was at work. Normal consistency and smell. This is the first time in his life that he has pooped when I am not at home. He would always hold it until I got home from work. It had been 3 days though.

What are some of the other symptoms of low gaba or too high glutamine, again?

[mamafish9]

Low gaba/high glutamates - wild/aggressive/hyper behavior, problems sleeping (getting or staying asleep), issues with language/speech, lack of "calm"/focus. Sometimes issues with muscle contraction/relaxation, that's where the pooping comes in. I'd try the gaba for his pooping, you have very little to lose. It might work, and it won't hurt even if it doesn't help. If his poops are soft, he has enough mag. Sometimes kids who have had long term pooping issues just need to set a regular time to go sit for 15-20 minutes - guessing you've tried something like that?

[gigismom]

we try the regular, create a routine approach but he absolutely refuses to sit on the potty and i won't push that. he does like to go in the evening usually so i can see this working eventually...

he definitely can be wild at times and has never slept through the night. he is just perpetually latched on all night long and has been for 2 1/2 years. not great for my sleep either but i usually just sleep through it. lately he moved into his own sleeping space near me and usually ends up with me no later than 2:00am. Other than the stuttering of late his language is great. He speaks two languages. Calm/focus... he can play by himself with his cars/trains for extended periods if he is not in his fussy time (5 to 7 or so every night). He loves to listen to books over and over and over and over. I don't think that is an issue. I am still interested in trying the gaba though. thanks as usual for your help. just "talking" it out helps me organize my thoughts and you always have so much to say that is so applicable to us. One of these days i will get the blink counts done and actually post something in your genetics thread. Fascinating stuff!! Your ds is so fortunate to have you for a mommy! I have a friend irl who did some similar amazing stuff with her autistic son many years ago who is now "labled" as genius and solving complex trig problems in his early teens. No one thinks of him as autistic anymore.

[mamafish9]

Wild, not sleeping, velcro nursing, not pooping. Try the gaba, could help with any or all of those. Failing that, smells like food intolerance of some kind.

I'd increase his methyl B12 too - did he sleep better on the drops? The conversion of serotonin to melatonin requires methyl groups, so if he's low on methyl groups, he'll be low on melatonin, which sucks for sleep. How much are you giving him right now?

We all muddle along with the kids we have - it's easy to sound smart on a part you have figured out. Go read my posts from a year ago .