Joan Pandas Mom

This morning I asked for the higher dose for my 16 year old son and was told no 1.5g is what they use. Should I keep asking for 2? Did I read Dr. Swedo used 2 per Kilo?

Things are so bad here. Last night I thought my son was crossing that fine line in the brain of no return. THANK GOD we are scheduled for IVIG #2 next week. I pray it works. It has been 4 1/2 months since IVIG #1. He has been out of school since Sept. 18th. He wants to go badly, but is just consumed with obsessions and compulsions all day long. I felt so helpless last night. I could not help him, he was so frustrated. No matter where I went in the house to try to get away from it for a little while, I could hear the door to the bathroom open and close over and over. It must have been about 15 minutes of it. I feel like this is a form of torture for the whole family. Next week can't come fast enough. He wants to go to the school and play basketball. I'm worried about him catching something right before IVIG. Any advice? My gut tells me to keep him away but he is so bored and getting depressed at home on the couch or running errands with me. I did get him to go for a run yesterday. I walked. Even that is hard to do. At one point he stood in the road for about 5 minutes stuck in a compulsion.

I have the same fear with Jared. What is going to happen to him when I die? His father died (my ex of 12 years) 2 years ago. Jared's care is all up to me. I only recently got to the point when I start to think that way to just try to stop it in its track and think of something more positive. I feel your fear. I have to hold on to God has a better plan for these kids.

How do you measure dopamine level?

Hi Trish, Did your son have Strep with the initial sudden onset? When the sudden onset happened for my son (6 yrs. ago) he had abx for 10 days. It was enough to take the very obvious PANDAS/SC type symptoms away and left us with what I call residual OCD. That is why he was misdiagnosed for many, many years as OCD. If your son has PANDAS, I think he needs to be on a high dose abx for long term, at least a year. Then prophylactic after that. The longer this goes on and the more exacerbations the child has the harder it is to treat.

I am keeping you and Allie in my thoughts and prayers Peg. Do you ever feel that when OCD/PANDAS can't do much more to bother you then BAM, it does? It's frustrating to have something undo what you just did. I know with me, I REALLY NEED some sort of organization in all this chaos. The organization is something I can somewhat control. Then OCD undoes it, AGRRR. This too shall pass Peg and you will find a way. It is just so very frustrating going through it.

Thanks for this. Interesting. I have been thinking about possibly adding an atipsychotic but will probably hold off for now and hope and pray IVIG #2 will work.

Vickie Happy Birthday to your son. I'm so happy he has the best gift of all, PANDAS FREE!

THANK GOD! WHAT GREAT NEWS. I am so, so happy for you guys. I love stories like this.

Thanks guys. I'm going to try it. OCD wouldn't let him last night but I'll keep trying. AHGGGG.

I recently missed a post on a connection with Meletonin? Does anyone know what that is? Also Is it OK to take Saccharomyces Boulardi in a probiotic? I know there is one PANDAS kids need to stay away from. Thanks.

I'm so sorry you are having a slip back. No, you can't keep him from exposure to colds--PANDAS is so frustrating and complicated. In our 6 years of dealing with this I am only now starting to "get it". Any exposure to anything is sending my son into an exacerbation. I am really struggling on what to do about this. I think we have to keep calm and just go with the flow (easier said than done!). It is and is going to be the nature of the beast. PANDAS truly is a beast. It sounds like you are doing all the right things with abx, vitamins and supplements. I hope it passes soon. Good luck.

Hi Kelly, I'm wondering if your son's face staying in that position for a little while is a compulsion vs. a tic. My son was doing something similar for a while but it was a compulsion and he couldn't stope making the face until it felt right--just a thought. As far as the braces I wish I could have better news. My son got braces late August 2009. His last huge exacerbation was Oct. 2009. I still don't know if the braces played any part in it. They are coming off in Nov. If he gets better, I still won't know because I think we are going to do IVIG #2 soon. I'm really sorry this isn't more helpful.

Hi Kerri, What are the reference ranges for the ASO titer. It looks like your husbands might be elevated.

I haven't talked to the school yet. I kept him home yesterday and today and have to line up an apt. with them. I don't know how it is all going to work out. I think I might try to home school for a while, maybe try to hire a tutor. He wants to try a few classes a day, but I don't see how that is going to be possible. Have you thought about another IVIG? I think we are going to try at least 2 more. It seems most of the kids here that have gotten better had at least 3. The therapy and writing he did over the summer helped for a few weeks. He stopped writing about day 2 when we returned. I think between stopping the exposure response prevention therapy and school, it just put him over the edge. My heart and prayers go out to you and your family and so many here. Please keep us posted.

Tears filling here too. I am so sorry and I know exactly how you are feeling. We are in almost the same situation here. My son turned 16 a few weeks ago. We had IVIG in mid May. We started school 2 weeks ago and yesterday I decided to take my son out of school for a while. He started to stop his sentences in mid sentence too. Most of the time he won't respond to my questions. He is taking little pieces of food to his mouth and putting it back on his plate over and over. He is mumbling jibberish a lot. I think all the exposure puts them into yet another huge exacerbation. This is so hard is so sad. I'm thinking of doing another IVIG (that will be #2). I am also thinking about possibly adding some kind of antipsycotic med like Zyprexa or Risperdol.

Hi SF Mom, just wondering if you had a chance to ask the doc about the Mycoplasma IgM. Thanks and hope all is going well there.

Oh Peg, this makes me want to scream. I'm sure you have already. I will be praying for you--hand in there.

Are the Adenoids coming out too? Good luck on Friday. I wish I had my son's biopsied or cultured. The ENT said he was pretty sure there was strep in there. The had a lot of "puss and gravel" yet his throat culture a few weeks before surgery came back NEGATIVE.

I'v heard 2 different answers from 4 different docs on Mycoplasma IgG. Three told me they don't look at the IgG. That that shows past infection and they only look at the IgM. One does consider IgG results. My son's IgG has been increasing since March. In March it was 2.20 with range being <.91; in June it was 3.32 with range being <.91 and Yesterday I get his resent result of 546 with range being 0-99. His IgM is still normal. What does this mean?

We just got my sons ASO back, it is in the mid 300's. It will be 11 months of abx, and 1 IVIG. The starting titer was 1,014 last October. We have been testing every 2 - 4 months. It has been coming down but this slowly? I have heard from different Dr's over the last 11 months that it can take 2 months, 1 said 6 months, my son's pedi read even up to 1 year to come down. I believe Dr. K told me it takes 2 months to come down.

Has anyone heard of IVIG #2 doing more harm than good if there wasn't much improvement at all from IVIG #1? I know there has been some conversation and controversy about possible permanent brain damage with some of the older kids with ongoing, untreated PANDAS. Dr. K said, "IF we decide to do another IVIG because it might cause more harm than good." I am wondering why the "IF"? Has anyone had little to no improvement with IVIG #1 and still had #2?

Elizebeth, Thanks, I just reread your post from the other day. My son did have +IGG and negative IGM for mycoplasma. He has been on Clarithromycin on and off for about 3 months now (augmentin in betweeen). I think you are right with that causing a lot of problems too. My pedi tried to tell me otherwise. Pedi tried to tell me IGG shows previous infection, which we all know. I have to have him retested for lyme because we did the Igenex 7 weeks post ivig and I have been reading here it needs to be at least 12 weeks post ivig.

My son has taken certain things out of his room or can't place certain things in his room. It's all OCD/PANDAS. I know there is definitely an obsession behind it, he doesn't always tell me what the obsession is though.