PowPow

No. I will PM you.

Thank you to both of your for talking me down

We got a letter today that my child was being assigned a case manager. anyone (joybop?) want to decode this one for me? Is this the beginning of the end of our smooth coverage for all recent AE tx & medications? I am a little unsettled. But then again, I have been our own case manager for 5 years+ now and there is no way someone else, who has not been through this could do a better job. I am not typically that confident, but I know this is true! should I be suspicious?

http://news.pennmedicine.org/blog/2014/01/obscure-neurologic-diseases-discovered-at-penn-to-be-focus-of-new-center.html we saw neuros at CHOP in 2011- they certainly knew my daughter had AE (though did not ID the antibodies)- they mostly only looked for NMDA and few other antibodies. U Penn and CHOP are somehow connected, right? Maybe someone on here can use this information!

Excellent post- on all fronts!So glad to read this hopeful, positive post.

My daughter took lyrica (similar to gabapentin). It helped with severe nerve pain. The lyrica helped with a few doses. She had scratched through skin in effort to calm her nerve irritation. Why do they think he cannot stand or walk?

Double post

My daughter has anti-RNP antibodies (ana positive) I have a friend whose son had Addison's disease (anti adrenal) & then later, severe AE. She is on the forum and hopefuly will see this!

Get your doc to watch the grand round video!!It is meant for doctors anyway. Offer to pay him for an hour of his time to watch it! Excellent idea. Thank you. Tried to message you, but seems your mailbox is full? I cleaned it out- at least a little I am an e-hoarder.. I admit it.

Get your doc to watch the grand round video!!It is meant for doctors anyway. Offer to pay him for an hour of his time to watch it!

https://aealliance.org/clinical-care/grand-rounds/ This is the video. Autoimmune tx my daughtr is on: Monthly iv steroid, 1g/kg ivig Cellcept Plaquenil Baby Aspirin Augmentin (fron pans doc- previous to ae diagnosis. I think they recognize pandas, but they do not treat pandas, if you will. They are looking for (&i am grateful they found! ) lab or clinical evidence of autoimmunity. Pandas tx helped but nothing "held", like you wrote, agnes26. Thereare clear distinctive levels of severity among kids on this forum. I'm not downplaying any child suffering. But clearly there are some children that are so severely affected there is something else going on. I do believe that pandas is related to this. In fact I have four children affected. the most ssevereis the one who has the AE diagnosis. Another with clear cut pandas better after plasmapheresis and ivig. the other two have been treated with steroids and abx and are better. So, odds are, they are all affected by something similar. As far as triggers for onset or exacerbation, I suppose anything could trigger it. At this point, I am just glad she is getting better and are focusing on that. I no longer have the patience, time, money or mental energy to search for that needle in a haystack. I am very thankful for where she is now and moving forward with that.

Yes to flares, though my daughter was never "normal" once this began in 2008.

I think severity is a huge part. Also, responsiveness to autoimmune tx (steroid, pex, etc) That video is really very helpful. The minute I saw it, I knew it was my daughter. Watch it and see if it strikes a chord.

Yes. My daughter was found to have antiphospholipid syndrome and AE. No changes on mri. Tx for ae was changed her life Please go to Aealliance. Org Watch the video under the clinical tab, the Grand Round video You will get much information on blood markers and diagnosis/tx. Where do you live? There are at least two places on East coast.

A family member travels to nyc for cancer tx with an excellent oncologist. She was diagnosed with stage 4 liver and lung cancer almost 5 years ago! There was a 4-6month prediction at time of diagnosis. She was 38 or 39 @ time of diagnosis. I will pm name to you , qannie.

one more thing, croatianmum, Have you tried advil (ibuprofen) for him? regularly, consistently for a few days? any change?

Did you mean impermeability in the gut?

oh, soory - I reported Your post instead of writing an answer to You ..I apologize for that. My question was : I don't speak english so good to understeand everything - so can You maybe explein this bit better to me? My son had his ANA negative, IgG, and IgM levels are fine, but after 2 IVIG's he is not doing better at all so I'm thinking about pex. Is is worth doing it if his autoimmune tests are all negative? And when we tried steroids last year he had a terrible reakction to them - ticcing worse than ever.. So confused about all of this... CroatianMum, do you have a rheumatologist you can go to? Autoimmune testing is so much more than ANA and it is not just IGG, IGM levels-- those could be negative and there still be an identifiable problem. I really do not know if pex would be worth doing without definitive knowledge or at least an educated guess (for example, positive reaction to steroids) that an autoimmune process is at play. This may not help, since you or may not be able to understand the language well-enough-- but maybe watch this video and pause it and write down the tests it lists (there are written lists that will show up on screen)- Maybe some of these could be checked on your son? https://aealliance.org/clinical-care/grand-rounds/ I do not know how to advise you. What does Dr K say- after all the IVIG you have done?

PM'd you klj

hi, I was reading your post about cellcept, does your child just have strep or other chronic infections? my son has done 3 HD IVIG's and is getting much worse, severe tics/muscle spasms/jerking/barking noises, rages non stop and severe hyperkinetic activity and is miserable. steroids made him worse too, but I know he has autoimmune issues along with immune disorder low IGG/IgA/IgM etc... where did you get the PEX? we live in California and I cant find anyone that seems to help would love to hear more on your experiences, my son has been homebound and miserable bad for last year, but also last three years the worst, he is 13. thank you Emailing you now

PEX did help my very sick daughter, 3-4 months after her first IVIG seemed to do nothing. However, the relief it offered lasted only a few months. She repeated pex 3-4 months after the first pex. Unless your child has lab "proof" (I know it roils people when I write about "proof") of an autoimmune process- of which the Cunningham test is one of many, many possibilites- I would not pay the $27K. However, perhaps, $27 K is very doable for you. if it , go for it. As far as "proof"- sed rate, ANA, antibodies, SOMETHING showing this is an autoimmune process- if it is an infection, pex is not going to help. If it is something else, pex will not help. I am not negative on PEX at all-- I just know too many people who were not helped by it at all. Both of my daughters had it (and one had it twice). it was restorative for one child and a step in the right direction for another. We had highly positive Cunningham Tests, positive Sed Rate and positive ANA (anti-nuclear antibodies) . We had some clues (including a very strong positive reaction to high dose oral steroids) pointing out to us that autoimmunity was the causative factor in my daughters' severe symptoms. Has Dr L tried oral steroids? If so, did they help? The daughter who is now symptom free (Pex in Jan 2011) has very high IGM and IGG myco P. Our current treating doctors (who are treating my other daughter for autoimmune encephalitis- she is doing very well now) feel that the high myco p is a "ringer" for something else affecting these kids with neuro-psych issues- not necessarily an infection. feel free to PM me for anything else I can share

Aealliance.org watch the Grand Round video!!

Does/has your child take(n) CellCept? YES If Yes, dose: currently up to (max dose for her) 1500mg twice a day Current Age of Child: 15 Guesstimate of how long they've suffered: August 2008 Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies) Has the CellCept made a difference? Yes. Yes. Yes. If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms. Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved. Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework! Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.

Was the nurse confident in the placement of the iv? So they use the same spot? I am so sorry to hear this. I hope you get some answers.

I would strongly suggest you check with hslda.org The homeschool leagal defense organization (HSLDA) is a huge source of information and support. We have homeschooled, since day one (pre-pandas) & they are an excellent organization. Ironically, or maybe in hope for you, my daughter, who would not come out of her room either is now enrolled in private school! & she goes every day. We still homeschool the other kids.