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I have a friend whose daughter had seizures (and possibly other behavioral symptoms, I cannot remember) after eye dilation and I think she really felt they were connected. I might be able to connect you via email, if you like.

Do you have some information you can post on this vit d and dopamine concern? Are you certain? I am not trying to sound argumentative, but I am not sure that is accurate. Not saying your childs reaction to it did not happen- but the link between vit d and dopamine. I had thought that (from a study on vit d and depression) vit d deficiency caused an increase in dopamine released. Thanks.

Wonderful news! Wishing you much more healing!

what kind of surgery? Perhaps there is a good reason? Is this a PANS/PANDAS kid? If she has enlarged or infected tonsils/adenoids, they could certainly be causing (antaomically) an obstruction and the congestion. That congestion could sure be a breeding ground for infection, and then,we all know what can come from infection hanging around Especially, with down syndrome, the structure of the face is different, and I think the sinus/nasal structure may lend itself to these problems due to flat nasal bridge and small sinuses. Neti-pots are awesome, I had the same experience as qannie- but you have to be 100% sure you are using sterile water (boiled and cooled or equivalent) Maybe a steroid nasal spray? (Unfortunately, most kids will not go for either of those!) Can you get a second opinion from another ENT?

The AE alliance has created a search page to locate a physician. The search can be filtered, based on specific diagnosis or even antibody-negative AE~~~ something it really seems like some of most severely affected children/adults on this forum may have. You can even filter by adult or child patient. Maybe this will help someone find a new place to get help for their loved one (or themselves!) https://aealliance.org/ae-clinicians-network-new-resource/

searching:here is a resource that may help you: https://aealliance.org/ae-clinicians-network-new-resource/ maybe you can find an practitioner who sees adults or deals with antibody negative AE?

What tx did you start for babesia?

Is ther e a link?

Can you go to Aealliance. Org and find some resources there? Maybe your daughter has something identifiable (antibody-wise) & with a better chance of tx, than an adult with the sketchy diagnosis of PANDAS (I am not saying it is sketchy, but that heme doc did) Is dr l any help? Does she know adult heme turned you away?

I sent you a PM.

here is my opinion. I feel like I could write a book on this (on my opinion of it!) I think PANDAS/PANS is a subset of AE. maybe milder, maybe not, depending on the kid. My thinking on this is that my two oldest daughters were both severely affected by PANS. Severely affected- both had pex and IVIG, etc.. One was clear cut PANDAS (by definition and Cunningham test) The other, no strep, cunningham was borderline for CaMK. That daughter was diagnosed with anti-phospholipid syndrome and AE. Their presentations were nearly identical in symptoms, onset, etc. You could not convince anyone that they had "different" disorders. I think it is simply how it is termed. That being said, I have two other children with much milder symptoms, some tics, some psych symptoms. I would not call them AE- though, they are not that severe, but I think the same mechanism is at play. steroids help. Cunningham test positive, though no correlation with strep, specifically. Also, I think in the link I posted and in the Pediatric Inflammatory Brain Disease paper I referenced in an earlier post (I can email a pdf copy to anyone interested) states there does not have to be specific antibodies identified, but I do think they look for markers of general autoimmunity. and I agree that PANS should get better with steroids or perhaps long term abx (for inflammatory issue). If not, then yes, I think it would fall into a different category. This is where I think the never ending search for an actaul infection departs from just trying to calm inflammation that may not have a definite or current cause. As far as tx and semantics, pr40- yes, I think intensity sets the stage. My daughter with AE gets the works at a nationally recognized AE center, and my ticcer goes to a PANDAS doc for steroids and long term abx. If I took her to the Neuroimmunology Clnic for tics, I think I would get the ol' "tics are not necessarily a sign of a problem" or "lots of kids have tics". make sense?

https://aealliance.org/international-symposium-on-autoimmune-encephalitis/ and the actual document: https://aealliance.org/site/wp-content/uploads/2014-Symposium/2014-AEA-Symposium-Final.pdf Hope someone finds this interesting, exciting and helpful! I sure did

Mine do not have any gluten issues, either. I am just so glad to see more encouragment toward looking for autoimmunity with these symptoms!

Yes. Yes. Yes. thank you, pr40

My daughter had this issue and also did very poorly in prozac and luvox. She has had relief from clomipramine for ocd. Have you considered that drug?

Wow. Thank you to this foundation (which must have a real person behind it somewhere:) clearly created by a wonderful, tireless advocate for our children!

just heartbreaking. what did her urine culture? My daughter did have a dramatic increase in symptoms (after her onset- by a few years) with a UTI. However, she recently has another uti and did well-- though, she has been treated extensively for AE and is doing well at this point now. I would certainly think this could be a factor. at the very least- can you send that AE article by the rheumatologist? - maybe not in reference to her problems being a post-infectious issue (that may not get them anywhere, if the docs do not believe in PANDAS/PANS!) but in reference to all her other symptoms. Maybe she can get some other testing. Can you PM rachel on the forum? She may be have some doc names for you to share.

For what it is worth--- that is dr k's website. Not denying the accuracy of his report, just letting you know from where it comes...

Gary, it wonderful to hear from you. My daughters' were on your kids website and found it very helpful. One daughter made a friend through it and was able to share her PANDAS experience with someone who knew what she was going through. That website was really a blessing to her, at the time- she was 11 or 12 and PANDAS (as you know) really stole so much of her childhood. She watched severe PANS happen to her sister, and then one year later, it struck her. The website gave her a place where she did not feel alone. Thank you so much for that. You are clearly a very talented photographer! I especially like the bridge photos, they are really beautiful. I will definitely share your link and will support your business. Keep us updated on your business and again, Gary, thanks for what you offered my kids through your website! It is an honor to hear from you on the forum.

No. Outpatient at infusion center in hospital. Dr l has infusions in office now. And we did homecare, too. HD typically is 2mg/kg Now my daughter gets 1mg/kg. (LD ould be lower than that, though. )

How is your daughter, surfmom?

Not that I know of. I am not too concerned about the infection risk, honestly. I trust the processing and also, it is a pool of over 1000 donors per "mix" - so it is such a huge varied lot, with such a relative small amount from one person. In full disclosure, one of my daughter's did have a positive typhus IG test after IVIG! That was a little weird. It was ordered as part of a panel ordered, and we ignored it. But that is just me. My kids were so sick - I would probably not have blinked at anything, honestly, to try to help them. LIterally, nothing scared me. I am now not as concerned as some might be, between the 2 older girls, we have done more than 15 IVIG's since 2010. Yes, pex is more invasive and though extremely helpful for both my kids, the results were not lasting for more than a few months, though I think it created a environment in their bodies that permitted them to heal. (by removing antibodies for a period of time). I will also say that one of my daughters' (blood type A) did develop hemolytic anemia post IVIG. It is more common in pts with type A or B blood. It is really rare and even at Georgetown hospital they had not really seen many (or anyone?) with it after IVIG. She was ill for a while and took a few weeks to fully recover- but hem/onc at G'town monitored her on an outpatient basis very closely, until she recovered. That would be a risk with IVIG. Have you found a doc to help?

PM'd you. If you would like me to email it to you (only way I can figure) , please PM me email address. thanks.

I just pm'd you!

This may be very helpful for securing some testing from a local doctor, or one not as versed in AE and the like. It is short (which always helps!) and even has a little flowchart to point out different manifestations and labs to check. This testing found the cause of my daughter's very, very severe PANS-- which we had been told was: PANDAS (w/o strep) LYME BABESIA DETOX SNP (gene) phase I & Phase II issues. I know that many of you have found healing from these avenues. I am very happy for you. For those of you who have not-- I am very afraid you could missing the proverbial "forest for the trees". We were. Our daughter has a life now and has had it for quite a while. Please print this and take to your family doctor, local neuro- whoever! I know at least one main PANDAS doctor is now testing for these things, at least in severe cases. http://journals.lww.com/co-rheumatology/Citation/2014/09000/Pediatric_inflammatory_brain_diseases__a.13.aspx This is the abstract. The full text is linked to the "parents of kids with PANDAS/Pitands" facebook page- but I may be able to send it to you, if you are interested.