PhillyPA

My sons are patients of Dr. Latimer's. She is going to want you to get the Cunningham blood test. Get it done now so you will have the results by the time your appointment in September. You do not need Dr's orders to get this test. Just e-mail Madeline Cunninghmas lab at the University of Oklahomas PANDAS research center. Tell her your daughters symptoms and request a blood kit. Also, tell her that you are a patient of Dr. Latimer's and to send the results to her as well. Here is the e-mail to send your request: Kathy-Alvarez@ouhsc.edu Kathy works in the lab and can get the kit out to you. The test costs $400.00 but it is a write-off.

I sent you a PM but I noticed you answered it in your thread. If you can, make the trip to Maryland and see Dr. Beth Latimer.

The five day steroid burst actually confuses me. My son was put on a month of steroids. The first week was a nightmare. Then, he just started getting better and better. By the fourth week I was in heaven and I asked to continue the steroids. (Doctor said no). He currently is doing great after ivig. No where near healed totally but we are getting there. I must add that if you are depressed CHOP is just going to make you more depressed. They were horrible for my son. If you don't get what you are looking for from CHOP, I would recommend making an appointment with Dr. Latimer in Bethesda, MD. My son changed over night with PANDAS. It was sudden onset. I had a son who was a happy, healthy five year old to a son who got a rash, headache and stopped talking. Overnight. CHOP said I should start him on schizophrenic medication. I think the doctors at CHOP are the ones who need the schizophrenic medication.

My son had this problem. He would go to the bathroom every 5 minutes. It was horrible. He got ivig and it stopped immediately. He had the disease a long time before he was diagnosed (nearly three years).

Lancaster, PA has a plethora of raw milk. It would be a day trip for a New Yorker. Who knows - maybe the Amish deliver...

My friend Kayanne is my go to person to keep me sane. Thanks Kayanne! She sent me an article this morning and in it it says that one thing many pandas children have in common is that they were not breast fed. I have two boys with pandas. My first boy is 8 and my second boy is 6. I breast fed my first son exclusively until he was 17 months old and my second I breast fed until he was 13 months old. They never had any formula. Clearly, it did not matter in terms of their health. They both got PANDAS. Perhaps I too did not have any strep antibodies to give them. So how about you? Was your PANDAS child formula fed or breast fed?

My son has a shellfish allergy. I stay away from fish oils all together. I tried fish oils twice and both times it was a bad experience. He too broke out in hives. I will never give him fish oils again.

By the way, getting treatment in Philadelphia is nearly impossible. I heard that Dr. Legados at St. Chris is open and willing to treat. He is a neurologist. However, we are sticking with Latimer. She really knows what she is doing.

My son is a patient of Dr. Latimer. He had the ivig at Georgetown.

My son's dosage was 2 gr/kg.

Anxiety gone immediately after IVIG. After two days post ivig my son was calm, cool and collected. It is GREAT to see him so relaxed. Love it. He sleeps like angel too.

He now weighs 47lbs. However, today may be a turning point. He ate a bag of cheetos and a meal replacement bar. Very solid foods. He said that he thinks he can swallow now. This is day 10 of the antibiotic and day three of the steroid.

He is on 800mg of augmentin per day. 400 in the morning and 400 in the evening.

Very interesting. He is asking for only frozen foods. He wants me to put yogurt in the freezer so he can lick it.

I would get Cunningham test for your child. Have you done this yet?

He will eat liquids. I got him to "eat" a frosty this morning. I tried Pedia-sure but he said it was disgusting. He lost two pounds this week. He is so skinny. He doesn't have spare weight to lose.

My older son, age 8 has PANDAS. My second son, age 6 just got PANDAS. He hasn't eaten in 8 days because he is afraid of choking. How long can a child go without eating? He does drink. I am very worried. He was put on augmentin. He started steroids today.

My son received his first ivig 8 weeks ago and his second one yesterday and the day before. (2gr/kg). I don't want to discourage anyone from ivig. The improvements over these past 8 weeks have been truly amazing. I would do it again (and did!) in a heartbeat. He has had pandas for three years and his doctor feels aggressive treatment is necessary. So for anyone in doubt about the ivig - I would highly recommend it. It is our only hope at this point. We are seeing amazing gains. I was not worried about his arm movements, I only found them curious. It doesn't really feel like a tic to me. (when I say feel, I mean my gut instinct). I think it has something to do with his brain healing. I could be totally wrong - but I know it has to do with healing. Go for the ivig! It is a miracle drug.

My son, age 8 is having strange arm movements after ivig. Anyone experience this and know the reason?

Hi Karen! I think what PANDAS does is that it finds the smallest weakness in a child's brain and expands it by 500%. It exaggerates some minor little quirk that otherwise would have gone unnoticed or would have been outgrown and makes it a huge deal.

My son was put on steroids for a month. The first week was rough. The next three weeks were great. I was SAD when I had to take him off the steroids and asked his doctor for two more weeks on them. (His doctor said no). He is now post ivig by 6 weeks. He still has not reached all the gains he had when he was on steroids. Week 1 and 2 post ivig were calm. Weeks 3 and 4 were a nightmare. Things seemed to settle a bit by week five (although he didn't sleep much). We are just starting week 6 today.

You are so lucky you found out it is PANDAS early. This exact same thing happened to my son when he was 5 years old.Every single symptom you mentioned, my son had. It progressed into mutism and a story to long to post here. It took almost three years before a pandas diagnosis. Three years of utter ######. He had IVIG 5 weeks ago and we are currently in purgatory... Your child will be fine. Don't worry. You are in really good hands. I highly recommend the motrin. I found this out by accident. I realized that whenever I gave him motrin he would have a really good day.