Joan Pandas Mom

DS is refusing to start Clyndamycin until we go on vacation this coming Saturday. OCD is SOOOOO BAD right now. I almost took him to the hospital a few days ago. He isn't eating enough, he is standing for hours at a time just staring at the wall, floor or sometimes tv, he is in and out doors over and over. I'm afraid to take him through an airport and on a plane unprotected with antibiotics right now. He hasn't had any fun at all this winter. He hasn't been able to attend school. He barely sees his friends. I invited one of his friends to come and DS was really looking forward to it. What would you do? I don't see how he could get any worse.

I have read here that Biaxin does, any others?

The LLD we saw today is recommending provocation testing of DS urine. My son had a few + bands and a few IND bands and a CD57 of 27. I know a low CD57 doesn't mean much for children to many LLD's. My son is 16 so I don't know what to think. Mycoplasma can take 9-12 months to heal, WOW. I'm having that retested too. The IgG on mycoplasma was high in March of 2010 and rose slightly over 9 months despite being on abx for then 1 year.

I'm going to try to be there too!

That is GREAT news, but remember in the future, even if the culture comes out negative, if there are PANDAS symptoms, something is lurking. With one of my son's exacerbation Oct. of 2009, his culture came back negative for Group A Strep, but his ASO titer was 1014. I struggled many, many years because of lack of a second + culture. I don't want to see you or anyone else go through the same thing. If there are PANDAS symptoms, something is going on. Good luck for a speedy recovery.

Thanks for this, I'm going to print it, hang it up and read it often.

Thanks Denise and Peg. He isn't doing well. He is refusing to take the abx change to 300 mg. clindimycin TID. and a few other changes.

Mark, what do you mean if you have IgA antibodies, Gammagard is the way to go? I think I am interpreting it right. I read if you have IgA deficiency, which my son does, it is better to use Gammagard.

I know in the past I've read one is better than the other. Does anyone know? Thanks.

Oh Denise, lots of prayers going your way. I found it to be really bad a week or so before IVIG too.DS has only had 3 so far. He is going to be having more, more often. How often is she having them? Are you doing 2g/kilo?

Praying for you too rockytop and all the families here. It seems like everywhere we turn, we hit a wall.

Emmalily, I'm going to take you up on that. It might help. I'll pm you my phone #. At times OCD won't let him talk, but he can listen! Thank you.

Thanks for the help. I was going to try to put it into his food, but he is getting too thin and if I get caught, I'm afraid he won't eat anything. The date he said he can take them is 2 weeks away. If I wait, do we run the risk of the faulty antibodies growing? OCD is telling him if he changes anything right now something really scary will happen. He won't tell me the obsession.

Does anyone know what I can do as a parent of a 16 year old who is so sick he won't take prescribed abx. won't go for IVIG or Plasmaphoresis until after a certain date because of OCD?

My son is going to be starting 300 mg clyndimicin 3x day for a month. He weighs 160 lbs. I give him 50 bil. probiotics right now. Should I up that dose? How high?

Denise, what is OU Foundation? What address could we send a contribution too? Thanks so much.

Denise, this is great. I am going to try to start a walk too. I live in central NH and was thinking Portsmouth, NH this spring would be a good place for some. Where are you located?

That is interesting. How old is he? Did all the symptoms eventually come back slowly or some of the symptoms?

forjpj, I hope we get there. I need to learn how to separate the boy from the PANDAS. I need to remember what life was like without PANDAS for a while. I hope you see those gains again really soon. Waiting patiently is the key, isn't it? When the symptoms come back, do they all come back?

That is great. Immediate results for 4 months.

Bill, thank you. I hope things are better there. This disease is so very complicated.

Tanacity I'm sorry, I'm just seeing this now. It has been very hectic here with this last downslide. Thank you for this. I hope things are going better there. We saw very slight improvements after about 4 weeks from IVIG # 2 & 3. They only lasted about 3 or 4 days. The turning back the pages from the IVIG were horrible.

YEAH!!

Hi Dedee, I thought we saw pretty good results a couple of days after the injection, but I asked for the 2nd injection 1 week early. We had the 2nd injection on Friday. I'm not seeing any results. He is worse. Not sure what to think.