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Laura,

 

Trying to find something to help DD with OCD, impulsivity, and ability to focus without using psych meds -- at least until we can get to the underlying cause. Every time we try to treat the Bartonella she ends up in the hospital. Three weeks ago we started her on A-Bart and after ONE drop she spiraled out and ended up out of school for two weeks. We tried to push through with one drop twice daily but it was too much for her -- even with detox. After 4 days we had to stop. I just want to give her a bit of a reprieve.

 

Her anti-DNASE levels have been going up and she has had high levels of c-diff. She is back on Tindamax, in addition to Augmentin XR and Ayth,and she is also taking GSE in addition to her anti-fungals, probiotics, and tons of other supps.

 

We also tried switching her to B12 injections from nasal spray but that seemed to make her worse. Still trying to tweak methylation but as you know that's tricky and tedious when complicated by so many other things. Of course we are trying one thing at a time so as not to complicate things even more but she seems to be reacting to everything.

 

Our psychiatrist suggested trying Amantadine.

 

Nancy

 

Nancy/JAG, what are you guys trying to treat with the amantadine? Just curious

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For those who are interested I will PM you the website that explains in great detail the use of amantadine for frontal lobe issues. It is written by a neuropsychiatrist at the place our son currently

Well, I was hoping to try something new, but the Dr. does not want to do the Amantadine until he tries to talk to Dr. Cunningham. DS not only has HUGE attention issues and missing "chuncks of time" but this latest flare has given him loud vocal tics. His Cunningham test came back the highest on the scale for Dopamine 2, so doctor is worried it will ramp up his tics. Put him back on Valtrex today, but he still sounds like a donkey and it is $350. to refill for the month! So now what to do about the ZERO ATTENTION span? He mentioned that we may possibly go for PEX. Any feedback on this. Did it clear tics or improve focus?

We already did 6 IVIG's last year, but that was before we knew to look for other infections and we found MANY! Back then wwe thought it was a strep only problem.

 

Getting tired.....

Linda

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Don't know if she will answer him or not. Don't think he is going to ask for advice, just trying to understand all that he can without making him worse. I find it odd that some people dread putting their kids on attention meds and we are begging for it. Really wonder if their is some magical natural non- stimulating suppliment.?

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  • 2 months later...

I'm not sure what to say about Amantadine. My dd13, who is tall, full grown woman size, started at 100mg and we stopped at 200mg. I would describe her reaction as "disappointingly typical" to SSRI-like meds where almost immediately she began producing easy flowing, age typical and interesting conversation, more complex vocabulary, more social. Then that faded to baseline, which isn't bad, I just know that it can be quite easy and effortless and social for her...and I want that for her if I can get it.

 

We increased to 200mg without much change. Around this same time, we started Enhansa and were seeing definitive changes with that. So we decided to table the Amantadine for the time and continue with the Enhansa leaving the door open to revisit it later.

 

Dr. O recommended doing the neuroscience testing, I just haven't gotten around to it. It's the end of her 7th grade, lots going on, I'll do it in June.

 

But my general reaction was that her reaction to Amantadine reminded of when we had tried SSRI's; great then fade. Dr. O was not surprised.

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We are still doing well on it. Not perfect, but it does help her to follow through on her work. Several times I have thought it might be losing its effectiveness, but when we miss doses for any reason I realize how much it is helping.

Edited by Trg girl
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