melanie

Just recieved a phone caal about blood work from Dr N. very high Ammonia levels..Im taking danny again today to check liver function and ammonia levels.Dr.N put him on a mediication I didnt pick it up yet .It starts with mar?? Ill fill you in later.. PS Hes been very aggitated lately which is why I went for a visit. I know this can be caused by depakote but hes on low dosage s. UGh any one have any info on this?? I always come here first Thanks Again Melanie

We have been seeing dr najjar for several years I think if you can have any contact with him at all do it!!

Any one use for behavior???

Ok. I need to read this. Danny's on depakote. It's the only medication so far that has significantly made an improvements. The generic stunk. Finially got him switched to the real one. Huge difference.

Hi. Sorry. I don't go on here much any more. What do you need

Just wanted to let you know we have been seeing dr. Najjar for 2 yrs and I couldn't say enough wonderful things about him or his staff. He's got a great bed side manner and has helped so much.

Ok I read about it and whats the side effects?? Is it better to give the capsules? or the liquid??? Will that help clear his gut and work as a probiotic ?? Sorry but no one in the whole world knows these answers but you guys??

Dan as always had issues with probiotics. I need to use one now but it has to be one that is for our type kid. He's 19 155 lbs 5'10". Need to do some gut cleaning too. Flagyl??

But can I add more even if he's taking depakote and gabipentin. ?

Thanks everyone. I knew this forum would be my only answers. But I have more questions. Haha. He takes dapakote ( which according to his Neuro somehow has GABA and gSbaprntin). How do I know how much he's getting of just GABA. I want him off the depakote. But I definitely think the gabipentin is helping. His psychiatrist prescribes it for anxiety. 1,200 mg day.

I think about you and Allie a lot. Still doing ivig. 3yrs stuck on this nac / glutamate. GABA issue. Need clarity. For some reason I just don't get it. I need someone to draw me a picture. Ha

This is the only place I can get this answer. Please !! Dans been taking nac for well over 2yrs. Recently I've stopped and I've noticed his tics have too. he his misophonia (sound sensitivity ). I am confused. Nac is a glutamate agonist. ?? So if he's doing better off of it does that mean he's got to much or to little glutamate. Also he's taking gabipentin a GABA medication. I'm confused with this. Help!

My son has been with dr n for 2 1/2 yes. Saw him today. He treats him for pandas. The best dr I have ever been lucky enough to see.

Hi Anyone know of a summer program for anxiety-behavioral disorders 19 yr old ??? Thanks Melanie

Can you do both at the same time?

We have bcbsnj. Dan gets ivig every 21 days

The problem with this test is that he gets ivig infusions every 21 days. The cough is raspy dry

Mycroplasm and IVIG?? Dans had a cough for a while He does have some asthma but nothing cronic..I keep asking the MDs to check again for MP .He always tested high and was treated several years ago for this.My question is how can you determine if high MP if you get IVIG ??The donar antibodies are contributing??I have some zith at home ,Im thinking of just putting him on a quick zpack??what do you think??

Dr najjar di the pex. He was 17

Dan had 5 pex nov 2011. Changed everything !! He also gets Ivig every 21 days for 2 1/2 years. If u can do it and the dr says its necessary. Do it. Dan had if at Nyu in his carotid artery.

http://www.med.nyu.edu/research/pdf/cronsb01-Arthritis%20Research%20Review.pdf Just found this. I have been prescribed this today!! So weird that I saw this this post peg!! I'm having some autoimmune issues myself and dr wants me to try this I'll let you know. Let me know how Allie is doing.

Dans been using nac for a while. I definitely think it works on his OCD. I buy it online because I can get it at highr dosages. 750x3 I give him 2 at night and 1 in the am. His neurologist was un impressed by the nac discussion. Dan was on nameda probably last year. I don't remember any issues I must have asked about it here and heard about the nac and choose to do that instead. I may give it a shot. he's started neurotin 300 mg so I'm going to give that a weekmor two and then revisit the namenda. I never do anything without checking here first.

Dans doing NAC Hes good with the NAC Dr.N wants to go to the Namenda,feels thats a better choice.Any one have an opinion either way? Thanks Melanie:)

We tried a low dosage of seraquel. Huge mistake. never again. Now were trying neurotin. 300 mg seems like nothing just wanted to see if anyone else has tried it with or without success.

Started Danny on neurotin. 300 mg pm. He's still on nac is this a problem?