tapiash

Ok. Thanks. I wonder how he figured out that one/? He did not perform a EEg . Maybe this is common with Pandas patients.

I received the medical records from my sons Pandas doctor and this is what he has been diagnosed with Encephalopathy, autoimmune other specified, ocd, psychosis paranoid. He is treating him for PANDAS. I am assuming this is for insurance purposes. There is nothing in his file about PANDAS. This is probably a good thing if we are wanting IVIG, right? Confused?????? Anyone else have a PANDAS child diagnosed with Encephalopathy?

We really like Dr. Lin too. I think I am finally starting to see some results with my son. I cannot wait to hear about your progress.

I got chills hearing about your daughters progress. I feel much better about this steroid burst now that I have heard a few testimonies. Thank you for sharing.

I am sorry to hear you are not feeling well. I hope your daughter does not have any set backs. wow. It sounds like the burst is working for many of you. My son cannot swallow pills. I honestly think t is a Pandas thing because two years go he could swallow the pills. Now all of a sudden he is afraid to even try. I have head the liquid is horrible but I let him chase most medicine with a coke or candy. Even Zithromax is hard for my son to swallow. Is the steroid burst outcome temporary. Thanks for the comments. I dont know what I would do without this forum. This forum has been a true Blessing for my son.

It has been two months for me. Still no report.

Dr. Cunningham told me it could take a couple months.

My sons titers were all normal. All the results from Cunningham were high except one. I never thought about selling stuff on craigs list. Thanks for the idea. Pandas is very expensive illness. I cannot wait until doctors and insurance companies believe this is a true illness.

My son was fine until he had the regular flu mis nasal spray. Three days after the nasal mist he started with ticks,ocd, aggressive behavior. I wish I could find other prents who have similar stories.

I would love to hear comments about how your kids reacted with the steroid burst. What should I be looking for as far as results from the burst. Does it taste bad? What different types of bursts are there. I am guessing Dr. Lin will go over that tomorrow. Does anyone know what he prescribes? Thanks Shirley

Hang in there1 It is the worst thing ever seeing your child fade before your eyes. What is nice about this forum is everyone here knows exactly how you feel.Dr. Linn was great and gave up hope. He is expensive but not as expensive as others. He gives you the information to file an insurance claim. Be prepared. Pandas is an expensive illness.

Ghostrider, here is an old thread on Dr. Gupta you might find interesting. http://www.latitudes.org/forums/index.php?...art=#entry46105 I posted what Dr. Linn told us. Did you read it?

We tested for that too. All negative. I do not think I will ever find a facility to do IVIG

He said it was Pandas and he sees kids everyday like my son.We started him on Antibiotics in a week we will start steroids burst anfd then start trying to get appmoved for IVIG. Kids with Pandas have a weekend imune system so allergies could be related to Pandas and are common. All of m sons tests came back negative except the Cunningham, it was elevated in every area except 1. The Cuningham results and my sons sypmtoms was enough for a diagnosis.

We traveled 19 hrs from NM to see Dr. Linn in Irvine Ca. He is vey knowledgeable and listens. He was a Blessing.

I think it was focus. He is 9. His vision is better than 20/20

There's an immunologist in the Dallas area I heard about. If you can't find him/her, contact me directly, and I'll check some sources, and find out for you. I still have not heard from the person you referred me to. I think she may think I am somebody else. I looked through all the posts and did not find one about ivig in Dallas.

My son finally hit a baseball. I wonder if it has 2 do with zithromax. He has been on 4 eight days. what do you think?

We have Cigna. They say they will cover it under autoimmune disorder NOS

Hope and pray for a successful day and outcome.

Me too

That makes complete sense. My doctor did say it was expensive and it was difficult to get an approval, not impossible It kind is of crappy so much is in their hands or control. I wish we had more say in our child's treatment. I think so many of us parents want immediate fix, me included. This whole process has been about waiting. I am all waited out!I want my son back.

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