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Today DS Turns 15!


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Worried Dad-

 

How are things? I miss your presence on the forum, but I hope the fact that you are here less frequently means things are well, and your family is moving into a new phase....

Post an update when you have a chance!

 

Eileen

 

Hey WD! I ditto Eileen! Honestly, I feel as though WE were following YOU through this journey and would love to hear how your DS is doing! Last I heard, yours was another "success story." Hope all is well! :D

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WOW!!! You do not disappoint, do you?!?!

 

I see a lot that I am familiar with and a couple that might be worth exploring. What a wealth of information!!!

 

My dd12 is still on abx and I wanted to know how you determined the amount and ratio of probiotics you are using? I've asked a couple of doctors and they don't seem to have any specific knowledge by responding....what does the package say? She tested positive for yeast in the stool, so I want to increase them, but not sure how or how much.

I was also looking into these shakes by Herbalogica that have many of these vitamins, supplements & probiotics. They are marketed for weight loss, but they seem pretty healthy.

 

Have you done any of the genetic testing for MTHFR? That's my next step...to test MTHFR, whole blood histamine, zinc and copper (again.) Plus she's battling significant acne despite all the abx. The Proactive has made a dent in it, but the dermatologist added topical Differin to her regimen. My husband and both of his sisters took Accutane in the 80's with a family history of scarring acne. I can't even imagine how that would affect my girl!

 

Thank you so much for your generosity and willingness to help all of us so much. Your son is so fortunate!

 

Jill --

 

I have to admit to a somewhat "throw-the-spaghetti-against-the-wall-and-see-if-it-sticks" methodology on our part! ;) Sort of out of necessity. Our proximate "PANDAS doc" is Dr. K., and though we saw him and like him, his almost entirely IVIG-based protocol was something we weren't ready to do. Meanwhile, our peds and psych have acknowledged PANDAS and been willing to prescribe abx and some meds to help manage the anxiety while we fight the fight, but are nowhere near knowledgeable or interested enough to go the distance with us in terms of all the other interventions, testing, etc. We've explored a local DAN! doc who would likely fill in those gaps for us, but we're hesitant there for other reasons. So, in the end, a lot of this has been trial and error on our part.

 

We have not yet tested MTHFR; might do it eventually, especially if we hit another significant behavioral bump. But for now, it seems as though we've found a good balance, so not sure what it would tell us that we don't already suspect and adjust for. DS's histamine issues are very well documented for most of his life via allergies and skin reactions (hives, eczema), so ameliorating that has been helpful all the way around, from upper respiratory comfort to sleep to curbing the eczema to calming him. It works, so we stick with it.

 

The probiotic balance, I personally think, is a very individual thing. When on abx, we initially got very aggressive with it based on some posts and research here. But we found that too much of a good thing just increased some of his discomfort, mostly via gas. So we cut back and chilled out a little until we found a probiotic dosing schedule that 1) wasn't too cumbersome and 2) worked for him physically. Generally, the packages say "1 to 2 capsules between meals." I also think the strains/variety of micro-organisms can be important. Sach b. is supposed to be a good yeast that crowds out "bad yeast" like candida, and it's great for diarrhea, too, so we've consistently included that. The other one, like I said, is a blend so his system is getting a variety of "good bugs."

 

Thus far, DS hasn't had any acne issues, so I can't even begin to pretend to know what additionally that might bring to the table. Sorry! It's at least in part hormonal, no? But how that might play into methylation, yeast, etc., I am clueless! :blink:

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Nancy,

 

I'm a little late to jump in here to say how happy I am for you and your family. It's a given that your son would turn out so well with such a warm and compassionate Mother in his corner. You are a great Mother, and your son is so lucky to have you. It's wonderful that you are able to see positive rewards for all of your hard work. I too, want to thank you for sticking around to support others who are still on that journey. You are an inspiration and a wealth of knowledge.

 

With Appreciation and Admiration -

Dedee

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Nancy,

 

I'm a little late to jump in here to say how happy I am for you and your family. It's a given that your son would turn out so well with such a warm and compassionate Mother in his corner. You are a great Mother, and your son is so lucky to have you. It's wonderful that you are able to see positive rewards for all of your hard work. I too, want to thank you for sticking around to support others who are still on that journey. You are an inspiration and a wealth of knowledge.

 

With Appreciation and Admiration -

Dedee

 

Thanks, DeeDee --

 

Honestly, we're still a work in progress, so my "sticking around" here is not full-on altruism! :P I'm still getting ideas, avenues to explore, fresh research, and "aha moments" from all of you. Not to mention that all-important "me too, sister!" feeling when DS is having a tough day, taking it out on DH and me, and I can tune in here and feel supported that I'm not the only one! ^_^

 

I'm so immensely proud of the ground DS has gained over the last 2.5 years, but I think that, maybe not too dissimilar from those last 5 or 10 pounds via a successful diet plan, that last 5% to 10% of recovery is stubborn and hard-fought! But we'll get there! And so will you!

 

Thanks for being a terrific cyber-friend! :D

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4. NAC -- No question in my mind that this has helped him tremendously. He takes 3,000 mg. daily in two doses, 1,800 mg. morning and 1,200 mg. evening. Psych is a big proponent of its glutamate-modulating capabilities, and though it took a while (titering up slowly over about 2 months) to see an impact in DS, it really has helped his OCD-oriented behaviors.

 

 

 

WOW -- as always, I am so appreciative of your experience and expertise!! how did you arrive at this dosage of NAC? what brand do you recommend? do you think that is something he will always take as a supplement?

thanks!

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Today is DS's 15th birthday! Two and a half years ago, I don't know that I would've bet we'd feel like celebrating today, but things look SO much brighter now than they did when we first happened across this forum! Things really DO get better, and my DS is one of the many here who serves as proof!

 

Back at the beginning, he was a homebound (roombound, actually), anxious wreck of a person with no self-esteem and no functionality. Today he's a straight-A honor student in his freshman year with a couple of good friends, insatiable curiosity about the world, a smile on his face every day, and an enduring love for "The Big Bang Theory."

 

Thanks again to all of you for the information and support you've given for the last 2.5 years! I don't know where we'd be today without it, seriously.

 

Thank you! :D

What a beautiful post. Congratulations and a very happy birthday to your DS!

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how did you arrive at this dosage of NAC? what brand do you recommend? do you think that is something he will always take as a supplement?

thanks!

 

The dosage is based on the dose utilized in an NIMH/Yale joint trial for NAC for treatment-resistant OCD in adults (DS is adult-sized and weighted, so that made sense to me). There was also an NAC trial for pediatric OCD with a lower daily dose utilized (I think that was 1,800/day, but not positive). You can Google it and find the introductory trial info on-line still, I think. (If not, PM me and I'll get you what I have in my archive! ;) )

 

Yes, I think as long as he has any OCD behaviors at all, he'll take this. It is readily accessible, inexpensive, and has not had any negative side effects for him.

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