Joan Pandas Mom

I haven't had the actual test done yet because they won't do it until he is off an abx for at least 10 days. I am pretty sure he will show an allergy to cats. When we first moved here, he would start sneezing a lot, get itchy red eyes, etc. When that would happen I would give him an antihistimine and that would take care of it. I haven't seen those symptoms in a while. Maybe if he puts the cat on his lap and pats it a while they will come out. I'm wondering if now his symptoms are strickly PANDAS symptoms like when he gets strept. He never gets the typical red sore throat, just PANDAS symptoms ramp up. Does your son have a diagnosed allergy to the cat? Do you use antihistimines? How was he at his friend's house - before he came home? I am curious because I have a very allergic son. We've not done IVIG yet, and I know IVIG is supposed to "reset" allergies a bit... but I am curious as to how much change there is after.

I spoke to soon, just completed about 10-15 min. straight of compulsions, overall though he is a little bit better.

My son has not had hot flashes but has always had cold hands. He has always run cold too, since birth. Today he thought he had a fever, his temp was 96.7.

I hear you Sarah, I'll take whatever I can get too. ditto!!! Oh so happy for you!!!

Has anyone seen an allergy to cats cause an increase in symptoms?

Thank you, It is a beautiful thing isn't it. Question. My son was with friends for 2 days, I was at a wedding. He did pretty good with them, They dropped him off today at 2. He slept until 5. We ate outside, he did great. Now it is kicking in again, not anywhere near pre IVIG, but it is starting. I am wondering if he is reacting to out cat. Could his body start shooting off antibodies because of his cat allergy? I asked Dr.K about it last week but I wasn't quite clear on his answer. He started to say the IVIG would take care of that but ended up saying don't get a cat. I told him we already had a cat. Not sure what to think.

My son had T&A in Mid December. He had been on abx for 7 1/2 weeks prior to T&A. About 13 days post T&A he seemed great for about 3 weeks, then the symptoms returned. He had a negative throat culture a week or so before T&A that came out negative yet the ENT said his Tonsils were gritty and ###### and wouldn't be surprised if there was strep in there.

It has been ten days and today we sat outside (beautiful day here in NH) and had dinner. It was a whole 45 minutes before we saw a compulsion and we only saw it then because someone at the table commented on it. My son agreed with the comment and said, "I think it is working!" I think it is working too. I hope and pray this last. I know it might be up and down, I know we might need another IVIG, but I am sooooo thankful for 45 minutes of relief for me son!

Can Pandas kis react to other infections such as friend with ear infection or kidney infection?

Hi Patti, I'm sorry and know how you feel. My son is 15 1/2 and has had PANDAS for 6 1/2 years. We just had IVIG last week. I feel like it is out last hope. Right now symptoms have really ramped up, but I have been told to expect that for a few weeks. I will keep you posted and please pm me anytime with ?'s too.

I am so sorry to hear all of this. I hope and pray you will find the answer. This disease is so complicated. My son is 6 days post IVIG and symptoms have really, really ramped up. His compulsions are constant. Why are all of these kids responding so differently to the various treatments. I think so much is still so unclear with PANDAS.

Can PANDAS kids react to fevers associated to infections that are not contagious like kidney infections?

Dc mom this is good to know. Who do you see? What dose prednizone? My son took 50 mg prednizone for really bad headache on Sat. (finished with IVIG on Friday) on Sunday morning his OCD was pretty good. That only lasted until Sun. night though. We are now turning back the pages really bad. quote name='dcmom' date='May 26 2010, 02:54 PM' post='69059'] Mati's mom- OR maybe you will be lucky? My dd had pex in October. She had a complete and immediate remission of symptoms. She got H1N1 in November, and within 25 hours of fever subsiding, was deteriorating fast into another full blown episode. We got her on a month long steroid burst within three days, which totally stopped the decline by the second dose. She is now stable. I would say we haven't gotten back to the 110% immediate post pex level, but she is probably at 95%, which we are really happy about. She does have flares if she is exposed to strep. Thankfully- she hasn't been sick since. I will be a basket case next time she is sick, but plan to have steroids in the closet to tamp down any immune overreaction. Sigh.

My son is 5 days post IVIG. He is feeling better as far as headache an low grade fever. That only last the day after IVIG. Dr. K anticipated it so had us fill a script for 2 50mg tablets of prednizone. He woke up with a really bad headache the day after IVIG and one dose of the prednizone took care of it. He slept more over the weekend, but now is fine except for the turning back the pages. It is pretty bad. He is taking 1 mg of clonazepam in the am and pm to help calm him down a little. He said,"OCD WILL NOT leave him alone." I know a 60 year old that has IVIG every few months for an autoimmune disorder and goes hiking after. How did you discover you had PANDAS? I am wondering if I had/have it.

I have Blue Shield and Blue Cross too. It is in review with them. I think when our kids are doing better we need to form a fight. It is like denying chemo for a cancer patient.

My son is the bull in the china shop. I think I am going to have to replace the couch and coffee table when this is gone. I'm with Peg, I wish he had the neat compulsion some times!

Alex, thanks for your response and I am sorry you son isn't doing well right now. This is really hard. How do we keep our kids from getting infections? It is impossible. Are the effects of IVIG cumulative? The more you have the better you continue to get and less likely to be as severe? Was your son put on 500 mg azithro daily?

What happens if a child post IVIG does get reinfected? Does is make it impossibly for IVIG to work or set it back a little? Do you have to start all over?

Dr. K was right. We might see symptoms really ramp up with stuff we haven't seen in years and some new stuff. That is what is happening. His rituals are off the charts. I'm not panicked like I would have been before IVIG. I feel now that there might be an end here soon. Pre IVIG I would have been freaked out by this. My son told me, "I wish I could just sleep through the next two weeks if it is going to be like this." That would be pretty good. Have IVIG and sleep for 2 weeks!

Pam, I'm so sorry to hear of this. I know what a nightmare it is. My son is 15 1/2 and we just had our first IVIG last Thursday and Friday with Dr. K. From my personal experience, I wish I had done it much sooner. Tonight his OCD is off the charts, but I expected it. Dr. K. and parents here have said it is a rough couple of weeks post IVIG but then things do get better. I would go to one of the docs here that do IVIG. It takes can take months to get in so start tomorrow. I trusted Dr. K. He has so much experience is is so smart.

That is such great news. Good luck with it. I'm sure you are feeling what we were, the IVIG appointment can't come fast enough.

Nancy, I'm sorry to hear you had to go through that ordeal. I agree with you completely, treat PANDAS aggressively before puberty. I went to Boston 6 1/2 years ago when this nightmare started and left with a diagnosis of guess what, OCD. I hope things continue to get better for you and your dd. Joan

I think Sammy started to see improvements around 4 months.

Dr. K. just left about 15 min. ago, but I will tell Launa. They are great and I am so happy to hear your daughter is doing great. This really seems like the answer we have been waiting so long for.

I'm hoping after this is behind us and I catch up on some MUCH NEEDED rest that I am going to look into some kind of Not for Profit to help people who can't get to certain PANDAS experts get there. I am glad it went so well. I wish we could go to Dr. K! Susan