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I would not mind trying to help you. Did you find out any thing from the genetic testing Dr.T did? Maybe when you find out what that is, Dr N may not be the best choice, though he may be. Feel free to PM me.

Not sure about Duracef, Our PANDAS doctor frequently gives Clindamycin a shot for strep. I think it has been very helpful. I believe - whether truly resistant or just stubborn, there are variation in GAS that are much more susceptible to clindamycin. Would someone be willing to try clindamycin for them? Make sure to take those kids back for rechecks post abx (maybe again another week or two out!) I know this is bad timing, but don't be too devastated- getting pex is awesome & remember sometimes it takes a few weeks to notice anything!

Please let us know what dr t says. He is a smart man. I am hoping you get some answers.

This was the problem we had. Pex helped immensely after about 3 weeks or so, and effect lasted just a few months. This happened after both times of pex. The ideal tx, that I can deduce from several different doctors, would be to continue with regular (monthly) IVIG/steroids for a period of time (6-12 months?) and/ or an immunosupressant to prevent those errant, wayward antibodies from wreaking havoc again.

Could she have strep again? I would give the augmentin longer. Augmentin is a big help to many kids on this forum!

I wanted to offer that , while i do not think that all that tics is PANS, I have a child who has tics that respond to steroids. Steroids and abx cleared up her tics three times for many months, each time. We go to PANS knowledgeable neurologist and already did when the ticc-er started with her tics. The doctor was sympathetic to our plight and thought we should give steroids try. It worked! I think that tics only can be a presentation of PANS (though not "offically") I also have multiple kids affected with different variations of PANS. The linking factor is responsiveness to steroids. Maybe you can look into that avenue of treatment.

I cannot answer that for sure, but give it a shot! Has anyone tried steroids on her? I am reading your tag line & the symptoms sound so familiar, though ours was a sudden onset. steroids were life-changing, not permanent, but enough to illuminate the right path for treatment & yes, she was postive for lyme & babesia, also. We STILL did the steroids (after lyme tx).

Bump

So glad you are in for pex! Wonderful.

Hi Emmalilly! I do not know anything about OLE, but I was just thinking about you. I was wondering about you & Emerson. So glad to hear how you are doing. Congratulations on success, dear. Keep it up!

my daughter also responds beautifully to steroids. The plan now is immunomodulation with cellcept and regular ivig/steroids for a little while. Hopefully the cellcept will work on both her wacky b and t cells and get her immune system straightened out so the effects are permanent.

"google" UHC ivig coverage policy. I found a pdf file of their coverage policy dated june 1, 2013 with all the diagnosis codes they accept for ivig. is your child's diagnosis sydenham's chorea? Encephalitis? Something else?

Can you see when the "policy year" is for UHC? Cigna seems to do Oct 15.

We see a family doc, who sent us to endo. The first appt is not until october. I am going to ask him to order some labs in the meantime. Any in particular you can think of?

Custom probiotic is a brand. trinty, can you post on the age of your child, so we can help with doseage. I cannot find her age in your posts.

I thoought you were already doing monthly ivig &steroids. I must be mixing you up with someone else on here. Can you share the protocol you will be starting ?

does he think you will ever be out of this hyper-immune state? Thanks for answering. I am not a huge believer in the chronic infection part, either, but that is from our personal experience. I am not discounting anyone's elses observations.

Laurenk, Did dr.give you any idea why you mave have relapsed? Does he consider it a relapse or something news? I am curious, as my daughter has had strong positive response to pex and steroids, yet relapsed again this spring. she began to improve at 3 months post IVIG & still has some problems but generally is better. I do feel like she is walking a tightrope between major spiral down and normalcy. my other daughter is now about 2 years after her last treatment( pex and ivig) & is 100% better. just curious if you've gained any insight from Dr N about relapse.

I think you could give more, though how old and big is she?

MTHFR has not been checked on this child. Both myself and another daughter (PANS) were normal on that. in Nov TSH was 5.58 January it was 4.63 July it was 4.46 so it is getting lower (lab range is 0.5-4.3) it was originally checked because she had fatigue (still does) and she complains of this weird tongue pain, around the edges. She has some definite OCD tendencies , so it is hard to tell if the tongue is something she has focused in on or if it is truly painful. She is 8, very fit and has been treated for PANS (tics and fear) sucessfully with steroids and zithro. tics and fears are barely present now. she also had 5 cavities appear in 6 months! anyone know anything about that?

We have Cigna , self funded through a county government . It did pay for pex in 2011 (three times for 2kids) , some ivig and it does reimburse well for out of network. I do not know if I.could get pex covered again, but cigna has been excellent.

Whatever you use for her normal bedtime routine, books, teddy. These places are usually expert in kids, so it shpuld be fine. My five year old had one, discovered OSA, retained CO2, PLMD(rls) & then had a T&A and iron suppplements. She was so much better after healing from the surgery. ADD & behavioral symptoms improved so much.

T.anna, why exactly.did he think it was NOT autoimmune? What would make him feel it was autoimmune? Also, can you go see Dr L in md? She has brought my kids back.(more than once!)

I am so sad to hear this. Are you saying the nurses made fun of your son? I have really had it with idiotic, immature people who consider themselves healthcare professionals. So sorry you wasted your time and your son had to be let down by poor attitude, pompousity and dismissal.

Rogers memorial is not close (wisconsin), but great inpt cbt. USF is not close (st petersburg), but great intensive outpt. I would like submit, humbly, based on out experience and many others, whose children are severely affected by this: If she is dealing with an infection or autoimmune process that is causing this, medical tx must be first and foremost. You would be wasting the effort, as CBT requires control on her part. At its worst, PANDAS/PANS is completely out of their control. Please call Or email Dr Swedo ASAP.