Joan Pandas Mom

Hi everyone. I haven't been able to write. I am in LA with my son starting week #2 of intensive outpatient ERP. He is doing a little better. His YBOC went from a 33 Monday to a 24 Friday. We have another week out here so I'm hoping to get it much lower. We have started week #11 post IVIG and he was still so bad with compulsions. I hope this treatment works and he can attend school in the fall. I hope and pray everyone is getting better out there.

Thanks for that Vickie, I was just wondering about other family members getting it. I missed the info on that. Is is a bad idea to have family members get it?

Great story, God Bless and we hope you daughter has a super upcoming year at college.

Good new about your sister. I guess I won't worry too much then. Thanks,

Yes, they fixed it. He was tested for lyme too, the test seemed negative but The LL doc is out until Wed. Also, I checked at 7 weeks post IVIG and have been reading here it shouldn't be tested until at least 12 weeks post IVIG.

I discovered Wednesday that we had a small gas leak outside but it had been seeping in though the foundation. This has been going on since the winter (I could smell something outside then) but has gotten worse over the last couple of weeks. We have a tight house and with the hot weather, our finished basement really stunk. I thought the cat had had an accident somewhere. Anyway, I just started reading about the effects of natural gas exposure on the nervous system. It affects the immune system. I just started to research this. Our house might be contributing to my son's struggle too. AHHGGG!

Wendy, do you know why Dr. K. said wait a minimum of 12 weeks post IVIG to test for Lyme? We tested at 7 weeks, Opps. I am getting the results tomorrow. I'm very curious, now I am wondering if they are going to be accurate. We did use Igenex.

Thanks Vickie. That helps.

Good luck Tenacity. This disease is so long and hard. Hang in there.

Sorry to hear about new infection. I hope things turn around soon.

I was told to avoid any unnecessary vaccines. I realize the flu vaccines but what else should I avoid. What about tetanus? Do I just get a note from pedi or is there more to it for school? Sorry to be so stupid here.

My son thinks he is training for football, but I have already started warning him he won't be playing this year. It is very sad. It is his passion, he is very talented and he works so, so hard at it. He has had 2 concussions over the last 7 years. Between those, the inflammation going on in the basil ganglia, and many common head injuries associated with football, I had to tell him he can't play.

Thanks so much for your input. Dr. K. told me to give him a quick call tomorrow to tell him what happened with t he prednisone burst. I'm wondering if he is going to recommend IVIG # 2. We didn't see any improvement form #1 except for day 2, he went about 45 min. without a ritual, and seemed so calm, I thought it was working, but then back to same old nightmare.

My son's last huge exacerbation in Oct. followed a concusison, but he also had a titer at 1014. Maybe the combo of the two?

My son is going on 10 weeks Friday post IVIG. Not doing good. Dr. K. said it takes longer for the older kids (he will be 16 end of Aug.) for the IVIG to work. He just finished a 5 day prednisone burst. Prednisone REALLY cranked things up. His last dose was Sunday and things are still cranked up. Not as bad as while on prednisone, but still bad. I am thinking about trying one of the anti-psycotics again. He took Abilify 3 years ago, it helped at first then just made him angry and argumentative. I just read a few posts on high dopamine levels and Risperdol helping without increasing the dopamine, any other thoughts? My son had a 2 1/2 strenuous workout today, I wonder if these workouts are increasing his dopamine.

If you test for Lyme make sure it is through Igenex lab. It is a send out. They are the only lab that test bands 31 and 34. I was told bank 31 is the most important. Good luck.

I am sooo happy for your guys. I was crying and smiling reading your post. I have an idea about the elevator. What about starting with pictures of elevators, looking them up on the computer, eventually touching the pictures and or hanging them up in her room, showing a clip from a movie over and over of someone riding in an elevator. .You are going to get there Peg. God does have a great life ahead for Allie!

Thank you guys. My 19 yr old son has and has had eczema since he was a baby. It didn't occur to me to have his skin tested until reading this. Would his ASO titer be elevated though. I had that tested in early May and it was normal.

Thanks everyone for these post. My Mom had a heart attack last week so I haven't had a chance to read and respond. I'm going to tomorrow. I hope everyone is seeing progress.

I heard night sweats can be related to Lyme. Has he ever been tested?

This post put a smile on my face! It is going to work!

For those in the North East there is a 1 hour special on New Hampshire Chronicle by Dr.Leon Hecht tonight at 7 pm. I know a lot of kids have Lyme too. Dr. Hecht is suppose to be very good for Lyme; I don't know if he knows anything about PANDAS though.

I know Rheumatic Fever is not common in very little children, but I am wondering how it can be positively ruled out. My son (and I have read of at least one other child here) had a febrile seizure at about 1 year old. I wonder if it was Rheumatic Fever. His fever was 105 when we got to the hospital. He never had a strep test done or any blood work done at the time. It was diagnosed a high fever associated with a virus. How can physicians be so sure it isn't strep causing the fever?

Thanks for this. I'll try. I decided I am going to bed soon, maybe a good night sleep will help me cope better tomorrow. It is so strange to think at 10 1/2 weeks you can start to see improvements. It is so long. I am amazed it can take that long to get through the system but I guess it does. I haven't heard of anyone on this saying it didn't work at all. I am so sorry you and your daugher are going through this ....truly... i too wish we were closer to the middle or end of the learning curve on this..... even if the docs had listened to me and other moms years ago when i noticed the correlation...we would be so much farther along..... it truly sickens the heart.... i i think....it was nancy d.( i could be wrong) that said it took a full 2 1/2 months.....10 weeks to see anything...and then recovery.... unfortunaley they had to do it again a year later....but....the same thing....10 weeks to see anything...and then recovery..... Keep the Faith!!!!!!

Thanks, I post it and then realized I was on the TS board, so I rewrote it. I didn't know how to move it!!