Joan Pandas Mom

I am glad it went so well. I wish we could go to Dr. K! Susan

We are at Dr. K's now. He mentioned to me today that so many PANDAS kids have sleep problems. He also mentioned that once the IVIG kicks in not to be suprised if my DS sleeps alot more than what he has been. Their minds and bodies get so tired from constantly fighting.

Thanks all of you so much for your prayers and words of encouragement. Today went really smooth. I can't wait to see what happens over the next month or two. As all of you know, this disorder is sooooo exhausting.

I might try to attend too, I will pm my e-mail too.

We are at Dr. K's. He is great. Your post brought tears to my eyes. Thanks for your prayers.

Thank you for sharing this. It is something to definately keep in mind. An ENT told me that it might be interesting to do a antibiotic flush of the sinuses with my DS a while back. I never did, but might in the future. My friend's son (doesn't have PANDAS) has been dizzy for 2 weeks now. Pedi thought it was a sinus infec. and put on Azithromicin. It didn't help so ENT did an MRI and he does have a sinus infection and put him on Biaxin. His only symptoms was dizziness and light sensitivity.

Well, we are finally here. DS is hooked up as I am writing. It has been 6 1/2 VERY, VERY LONG, DIFFICULT YEARS. I feel really hopeful this will work and my son can have his life back. I will keep you posted.

A friend's dog is on Prozac for OCD. The dog has several severe obsessive behaviors with hyperactivity. I am going to suggest he test his dog for strep. Maybe the dog has PANDAS.

What a great kid. God bless you two.

I think tics can come and go. When all this started my son was 9, he had slight tics with it that at times would leave for months.

My thoughts are if you are able to keep him out for the rest of the year do it. I have found over the years that the thoughts associated with PANDAS are really, really scary. Your son might have some thought he can't express to you right now that is preventing him from attending school. He seems too sick to go right now. If the school doesn't know how or want to handle it, then going will be a disaster. Hang in there. Things will get better, it just takes so long though.

My Dad had RF as a child too. I haven't been on for a few days so have to go back and catch up on this. My mom had Scarlet Fever. My Dad had minor tics, my mom has mild OCD.

Are you in the Northeast? My friend's son has been home from school for 1 week now, biggest complaint was dizzy. Now she and her husband have it. It might be a virus going around. Prednisone did make my son feel dizzy and weird.

Is Kefir dairy, cow's milk?

We are at the same point too. I watch my son struggle and it just rips my heart out. I am hoping and praying the IVIG works and he can have his life back. I can't remember, have you had IVIG? I'm starting to wonder if anything actually works. So many here have been reporting huge backslides lately.

Have any parents had elevated mycoplasma and ANA tests? Have you treated them with abx?

I'm am sorry to hear this. We are going through rough, rough time too. Could it be the type of pollen? Right now the Pine pollen has started.

My son had a nasal swab that came back negative, but ENT felt there still could be or was bacteria in the nasal passage. He mentioned nasal irrigation to me but we haven't been able to discuss it further.

Are there any meds or supplements that should be avoided pre IVIG? Is it ok to give Advil?

My son is very bright but PANDAS gets in the way. When he was really young at bedtime, he would practice math under his covers with a flashlight. He was in advanced math until PANDAS got too bad. In 6th grade, he was tested to see if he could stay in advanced math but they took points off for not showing his work. I was amazed at what he was doing in his head. I think the school thought it was too stressful. He scored average in most of his IQ testing except verbal was 92 percentile. One of the OCD specialist we saw, before we knew he had PANDAS, told us that most kids or people with OCD are very, very intelligent. She feels the OCD is the body or brain trying to balance that intelligence.

Same here. My son hasn't had Benadryl for about 8 or 9 years--it makes him crazy. Dr. K told me not to worry, they won't be giving him any for his upcoming IVIG.

Buster, I'm so sorry to hear that. I know quite a few have done 2 or 3 IVIG's. Do you think you will do another one? We are having our first one Mid May. My son is suffering so bad right now. Yes, after 6 months of no symptoms post IVIG, our daughter got sick again with a fever of 102. We do not think it was GABHS but it is difficult to tell. After the fever, symptoms reemerged following our classic exacerbation pattern of escalation for 2 weeks, plateau for 1 week and fall off for 3 weeks. Unfortunately, her remission was not complete post-illness and held steady at the pre-IVIG baseline. We tried increasing azith and had improvement in mood, but vocal tic, handwriting abnormalities, measurement rituals and eating restriction were now part of her new baseline. We tried a prednisone burst and saw some improvement but these were not sustained post-prednisone. I'm sorry to post this news but wanted folks to know. Absolutely we had 6 months of calm and had our daughter back. We really thought we were done -- frankly this is why I started writing everything up (PANDAS FACT sheet, FAQ post, research summaries, ...) because I thought we were putting this behind us. IVIG was incredibly beneficial -- but (at least in our case) a new infection seems to have retriggered the same reaction. Buster

Colleen, are you thinking of changing pedi's? Most docs know the rapid strep are a waste of time--and to throw the 72 hour culture out without your consent? How wrong. I'm glad to hear you got the abx and hope your son is doing better.

My son came home from school yesterday, didn't feel well. Nausea and started with diarrhea last night. His symptoms have been ramping up for about 2 weeks. They are really, really bad right now. His culture was negative a week and half ago, but I've read here that one parent took child back 5 days after the first negative culture and the second one was positive. He felt hot but no temp.

We saw Dr. Eda Gorbis, an amazing OCD specialist. She had my son write, write, write. She told him his pen was his sword against the obsessions. Writing also helps get it out of them and onto the paper. That is great you have discovered this and your son is doing it. It will really help him.