melanie

I wasn't a fan of ability. All drs have such different ways of thinking. Dan spy recommended the other glutamate med. I can't think of the name. I couldn't get it approved so we got the named approved. ? Ask her to try it. Really no side effects. Melanie

Dans been taking 2.5mg nameda for about 6 months. I think it does help a little with his OCD. He did take nac for a while before that. He is so posed to take 5mg but I always give less than the scripts say. I didn't see any side effects at all I would try it if your dr says to. You can always change your mind if you see nothing. Did you try nac? Melanie

Peg is that OTC migrilief?

Well #4 done. Seems ok. Dr told me we are going to continue ivig. Not to expect anything can take 4 weks to see any results. Melan

Ugghhh. I'm tired! Did you get the appointment?

I know. The nurse said that a lot of older patients show behavioral symptoms with urinary track infections. He said he doesn't have any pain. I think I may have something. Is it contagious by just being around him. They said the bacteria was pretty strong and they are giving him cipro 2x a day. Do you know of behavioral stuff Melanie

The nurse just came in and told me they were giving Dan cipro for a urinary track infection from a urine samplenfrom Tuesday. Really? Melanie

Probably a little of both.he was being interviewed by some DES on camera today. He ticked like crazy. F b hitler stuff which I haven't heard in a long long time. I know he's agitated. I am so he must be nits inside. Do you get worse before better with PEX? He is due for ivig tomorrow. Maybe he needs that. I don't know. But I'm discouraged right now. Melanie

Saturday. 5 treatments total. Just finished #3. He's cranky and ticckkkyyy. Never got a treatment Monday.

Saturday. 5 treatments total. Just finished #3. He's cranky and ticckkkyyy. Never got a treatment Monday.

Rough day. He's so off. Angry etc. Ughhh Melanie

Some kids are mean. I'm a middle school teacher and I have seen mean kids but I have also seen wonderful acts of kindness and friendship. I would look for a social skills group in the area One that has organized activities so she can feel included . If your school has an aftercare program that may be a way for her to make friends sometimes girls are nicer 1on1 when they don't have so much pressure from others. Melanie

Peg Had an iv scheduled for Friday. Still doing tem until this. Dr said he will probably continue ivig. Have to see I guess how this goes. Melanie

Peg. Are you still doing ivig?

2 down 3more to go. Went well he is hanging around getting bored but hopefully well be done Saturday and we can go home. ,!

Thanks. You have no idea how those words make me feel. I am so grateful for your time and senserity Melanie

Ok he's hooked up. He's doing fine. Tired but ok. I'm at NYU I'll keep posting. He's having 5 treatments. I'll let everyone know how it goes. Thanks for being here for me. No one really understands this except you guys Melanie

We've done both. Didn't see any difference.

It is in his neck

Still waiting for the PEX nurse. He slept a little but they keep waking him up for heparin shots. He seems much better today not complaining as much. I'll keep posting. Melanie

its in and hes not happy no pex tonite to late ughh its really bothering him does it stop hurting ughh melanie

Were in the hospital ivs hooked up. Were waiting for the cath to be placed in his neck. Ughh. He didn't know about that until a minute ago. Not sure if they are going to do the plasma until tomorrow because it's late? I'll keep posting. Melanie

They are planning 5 exchanges I dont know every detail but I promise I will keep posting during the stay. Dann thinks hes going for contiuious IVIG for a week .Hope this helps more then the iVIG..Funny thing is he hasnt had any tics in 2 days.He seems to want to do this.I forget hes the one who really suffers..Love the boy so much. Melanie

Going to do PEX tomorrow I will keep posting while we are in the hospital.I will keep everyone posted .Please keep danny in your prayers...5-7 days in the hospital .. Melanie

looks like PEX in Nov waiting for insurance approval.I will post more dont want to jinx or give false info until everything is set, Dr says 5-7 days in hospital.WOW Melanie