rockytop

My child tried riluzole for a short time and I feel like it was helpful, or at least would have been. She began to refuse medication, so it was not used longer than a week or so. If she agrees to restart medicine- this would be among the first ones I would encourage. I was not aware of the other potential sources of glutamate blockers. Interesting. Our insurance covered Riluzole, thankfully.

if you can drive to Bethesda, Dr L is a great neurologist! and pandas, too!

I would start with-- 1. Sure sounds like PANDAS to me! 2. Do you live near a PANDAS doc? Having dealt with this for 2 girls, one very very sick and one pretty bad (though much better post pex & IVIG!-YAY!) I honestly would head straight to a PANDAS doc. I would not waste time, money or your sanity! Easy for me to say-- I live quite close to one.

Can you video the behaviors?

Yes, he did test for IgG titers. I will ask about PCR testing, I think that is what you are referring to, right? she was very ill with skin manifestations and developed a hemolytic anemia and severe abdominal pain 2 days post IVIg. So they were checking for all sorts of things! Thanks for your help.

My child has had some borderline positive results for certain infectious labs since she was sick post IVIG last week. I have found some reliable info on a child with false positive hepatitis post IVIg for Kawasaki disease-- false positive cleared and remained clear at 6, 9 & 12 months. My doctor is watching my daughter's symptoms and we will recheck labs in a few weeks, unless she becomes ill again. Anyone have any experience regarding this?

I would be suspicious of the TS diagnosis- I have 2 with PANDAS & a third with year-plus of incessant vocal tics that cleared with a month of steroids and zithromax. That child would proabably have been diagnosed with Tourette's disorder, had we not known about PANDAS and had a PANDAS doc not given us the steroids & abx. She has been tic free for 4 months!

THERE IS A "CODE" for PANDAS? That is news, I think- It might be worth it to go to your doc (out-of-network// out-of-pocket) & file with the CORRECT, TRUTHFUL code (post-inf encephalitis); then file and get reimbursed. We are doing that this week. You have got to do something soon- don't let PANDAS get ahead of you! it sounds like it maybe already & time sometimes can be our enemy in this. Will your ins co pay for pex? That helped one of my daughters immensely, but it did not last at 100%, unfortunately.

Wilma, I am too tired and mind numb to say anything useful right now- except I have had no real luck with any psych doc (even one who believes in PANDAS)- they really cannot do much. Risperdal did help my child, I think I remember it did not hellp yours-- but really, they need medical treamtent and all psych meds can do (in my opinion) is calm them enough to get it. The only one who has really been helpful to us is Dr L. Have not seen any of the others. can you remind us how old she is? Is she supposed to get IVIg soon? Did you keep up the steroids? i know this is a nightmare. hang in there.

without the internet-- probably 90% of us would never had heard of PANDAS! please have her check out GAD auto-immunity. I hope some day some factor is found that creates this auto-immune "perfect storm" that creates so much suffering in so many different ways. oh and then---- A CURE FOR IT!!!

I would suggest checking out GAD autoimmunity. It causes a problem that would attack the pancreas, causing type 1 diabetes, however, it also has been seen to cause neurologic and psychiatric problems. Check out this article (some one on here posted it recently also, I think) http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html it is called the girl who lost her mind. My very sick child will hopefully be tested for this very soon! Please print this article and have your cousin pursue it! I hope she kind can find out what has caused these problems for her child.

PhillyPa has good advice for you-- stick it out. either it works or it will not-- but you will not know unless you try. My daughter is as sick as yours-- I know how it is going for you now. hang in there wilma, I am so sorry for her and you. praying for you both

I have a shot this week at possibly getting my child treated. This will be a one-shot deal & I am wondering if anyone knows any benefit to asking our doctor to run IV steroids before the IVIg. I have no idea if this is desirable or even possible, but I want anything and everything done while we have the chance. After this our next stop will most likely be sitting on the Dr Leckman or Swedo's front steps (just kidding:)or begging to be the first DBS for pediatric OCD. things are terrible, terrible, terrible, but she admitted tonight that the way she is living is no way to live and she needs help. If that will translate to cooperation, I do not know. Please, any thoughts on my steroid// IVIg idea? I just want to give her every chance at recovery I can. She is no meds now and reacted quite well to prednisone a year ago.

I am still hopeful for her, Wilma. We saw NO improvment whatsoever until 10 days to 2 weeks.

sending you a PM! We have not seen Dr Singer, but did go for an evaluation at JHU in Jan 2010.

10 days to 2 weeks here-- and that was the case in all 3 kids! hang in there!

Thank you so much for posting this very intersting information. I am sold-- where do I get this stuff? one of my children has autistic features in her communication (or lack of), behaviors, irritability and, obviously, OCD. She will "break through" now and then-- Do others have this "intermittent autism"?

PRAYING AND HOPING AND EVERYTHING ELSE FOR YOU BOTH TODAY! It took 10 days to 2 weeks to see improvement, so hang in there.. Please keep us posted, Wilma.

I think mommd might be in NC-- look her up and maybe send her a private message through the forum. She might be able to direct you to someone in your area. Dr L in Bethesda, MD is great- I do not know if she is taking new patients now. Maybe you can just convince the doctor to try a month -taper of high dose steroids and zithromax to see if it helps. It helped my girls (and another one who had tics) within 2 weeks a very noticeable difference. Write everything down -- then you can really have a clear picture to share whenever you do get to a specialist.

just got back from ED - 2 days post IVIG-- for severe (daughter was crying!) abd pain. Her extremities are still mottled, too. She had the headache and vomiting for a few hours post 2nd infusion, but she rebounded from that pretty well by Sat afternoon. This morning she was dizzy and not feeling so great- by this pm, she had this severe adb pain and i took her to ED -worried about appendix or gallbladder-something! They were worried about the mottling, too- so at least that was checked out on an emergency basis. Platelets were fine, the only thing off was her bilirubin at 2.5- they want us to go to the hem/onc clinic that did the IVIG for a follow up and call fam doc about this tomorrow. HAS ANYONE HAD ANYTHING LIKE THIS POST IVIG? She has had a weightloss of 13 lbs since Jan (10% of her body weight) but really no complaints of abd pain that I can think of until today really. She vomited again right when we came home and feels a little better- they have her Zofran there. Maybe this is totally unrelated to IVIG- I sure hope so- because I desperately want to get my next child to agree to IVIG & an Er visit and crying with abdominal pain does not make it look very appealing

I would also agree that you should heartily persue PANDAS. Titers are not the "end all, be all" for a diagnosis of strep---check out the helpful links at the top of the forum. Buster has a posting somewhere on there explaining significance (or not!) of titers. In our PANDAS journey, we have wasted huge amounts of time (and of our daughters' lives) with doctors who really were unable to help. I would strongly suggest trying to see one of the doctors that is familar with PANDAS. I have 2 daughters with PANDAS- one with very clear-cut strep- OCD exacerbations and the other with no known or quantifiable strep connection. Both improved greatly with abx & steroids- neither cleared the problem, but got us back to a functioning level. One recently had pex and then IVIG and we are so grateful to have such a great neurologist who is not one to give up! Depending on where you live, maybe someone here has a recommendation for you. Also, check out Dr Susan Schulman's (Shulman?) videos on PANDAS on youtube. I just recently watched them and they are great. Maybe they will help you decide if your child fits the picture. www.pandasnetwork.org is a great place to start! It is very easy (as a parent of a child who is struggling) to find a diagnosis and "fit" them into it. We all hate to see any family suffer and want easy answers! I think, though, that since you are stillconsidering PANDAS 2 years after you heard about it, maybe you should listen to mother's instinct Best Wishes on Mother's Day to you!

Thanks for the answers. Yes, it is definitely, in appearance anyways, livedo reticularis. I am familiar with this as a manifestation of some auto-immune problems. I was just hoping lots of people experienced it post IVIG! she had it before only mildly, occasionally and only associated with cold -- hands only. Her arms, legs and cheeks now have it. We are only about 4 hours since the infusion ended. Is this worthy of a call to our pandas doc? she was not involved in the infusions directly. I was concerned it was some sort of sign of immune problem caused or exacerbated by the IVIG (as opposed to the immune prob we are trying to fix:)

My daughter finished her second infusion today-- during first infusion her extremities began to look almost mottled- a lacy dark purple appearance . The doctors at the hospital obviously had no idea why it was occuring. She seems fine otherwise. She does have a headache and nausea now. The mottling faded somewhat overnight but was still apparent this morning even before they began the second infusion. They dosed her quite highly with Benadryl before and during and after all infusions. Has anyone else experienced this? They really did not know what to say, they said they had not seen that reaction before. They were focused on being sure she was not having an allergic reaction- but I am concerned that it could be something else-- not necessarily allergic, but something else. Any ideas?

BUMP!! try pandasnetwork.org and email them- they can really be helpful to point you in the right direction- though everyone here will also! Where do you live?

Our very knowledgable LLMD had our Lyme/PANDAS daughter on these exact Klaire labs probiotics. Great stuff! Pandas16-- I think you have said some very smart things & I am glad you posted the link to explain this. not all strep is the enemy