PowPow

My 14yo has significant memory problems. She forgets important information she has been told. She says things and sends emails,.both of which she will forget within a few hours. This has been an issue since she slowly recovered from her most severe exacerbations, which lasted months. I am not sure this part and parcel of PANDAS, encephalitis (which fits her presentation, frankly), or some other issue. She feels it has ben worsening, and I agree.

Thanks for posting this, Vickie. I would love to meet Dr Insel in person and thank him someday. I know he cannot solve all the PANS mysteries, but just reading his posts about it give this weary parent some peace and hope.

How old is your son? Would he qualify for the study? If your son will not go to school, you have big problems! I speak from experience. If I had a kid who qualified for the NIH IVIG study, I would do it! If the doc you are se ing now is not sure about PANDAS, try to get to a PANDAS doc. Your son sounds like he is really suffering. Math difficulties are not rare at all for PANDAS kids. What abx is he on and dose? Maybe it is not enough? Please look into the study.

Just another ditto here! If he is at the stage where he is willing to try therapy to learn some coping skills for OCD and sensory difficulties, by all.means, do not let this time go by. It will not cure PANDAS, but it will sure help him. I will "third " the USF/DrStorch recommendation

Do you have a pandas doc? Your description is very much like one of my kids, now 14, started at 10. Lyme was a factor, but there were also major psychiatric symptoms that lyme treatment did not help. Pandas treatment of steroids, pex and ivig helped. I am not telling you to ignore lyme,( I am ducking from the flying tomatoes being hurled at my post), but can you give some details? What, if anything, have you tried to treat pandas yet?

My 14 yo had lyme also diagnosed with pandas/pans/ whatever you Want to call it! I think Trazadone was not helpful and possibly harmful to her also. She does very poorly with ssri's also. however,lyrical, given for severe nerve pain , did allow her to sleep. Just wanted to add another concurring opinion. Best if luck to you and her.

Sorry to hijack, but why no tylenol with vaccines? For babies- What is the reasoning again? Congrats on that grandbaby! Are they culturing the site?

Hey SMARTY! (my favorite forum name:) is there somewhere online I can hear this? Thanks.

Thanks for the insight, LLM. I think you are correct. This is a big ship to turn around. I think it is starting to lean in the right direction & I am excited!

Sensory and school issues were the first symptoms for one of my pandas daughters. 6months and another strep later, full-blown OCD moved in. pandas tx(abx, steroids pex&ivig) helped immensely with all of it.

Our integrative medicine doc /llmd (who was great!! ) wanted vitamin d levels WAY higher than the recommended levels.i think it was beneficial (over a several week/month observation). She had my child on 50000 units three times a week for weeeks. The pharmacist triple checked the script it was so high. Not that I can explain with any intelligence now, but vit d is critical in many inflammatory conditions. I would give it a shot. Are you working with a good DAN or integrative doc? They can be so helpful with this kind of thing.

I think this is the episode that was posted about: extreme affliction 3/17 kids with tourettes--- hope to see it!

how can we do one of these on the East Coast?

my daughters both had this very, very bad for a long time. It faded for both children after pex, like many of their symptoms. I feel for you and your child, it is a very scary and frustrating problem.

try PANDAS Virginia on facebook- they have met a few times in Springfield. I think they are meeting in Rockville MD in may Also there is a group that meets in Potomac Mills area. I can pm you the facilitators email if you like.

do you have to go off all other meds to do homeopathy?

in case she does not respond- look for posts by eljomom I think she can relate

to add to eljomom's post : another helpful thing would be how long since IVIG !

PMing you

It it really hard to answer- My daughter took a ton (literally like over 50 a day!) at the height of it- all from an LLMD who was great. And, to be quite frank- she was at her best during that period of time. I have no idea what worked and what didn't. Some that I do think definitely helped (well maybe?) were methylated b12 (sublingual) given for acute OCD, anxiety, rages and maybe NAC. Now, one of our biggest issues is inability ot ake medicine (due to OCD) so she is taking nothing. She says that "when she gets better" (meaning OCD improves) she will go back to that doctor to get on all the supplements that will "repair her & fix it all" Those are her words (she is 14). She agrees and recognizes that the supplements were helpful. I will be honest, though. I have the utmost respect for those on here who coordinate their child's supplementation. It is complicated to get it right (timing, co-administration, etc.) I do not think I could figure this out on my own! If things are oging well for you son, maybe you can decided which is least likely to help and then go off it for a few days and see. It is scary to rock the boat, I know!

. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Just because the immune system is no longer activated by an infection doesn't mean that all auto-antibodies produced by the infection are gone. You hit the nail right on the head, Lauren K!! Thanks for putting this in such clear words So what do you think we can do about this? Stick with treatment for auto-antibodies? That where we have the most success- IV steroids, pex-- I have a child in each category-- one who is "chronic" as eljomom said and one who "got better" (mostly

so glad to hear you have already seen improvement! I hope it keeps up. I cannot comment on the lab work, sorry. we saw great improvement after one week post plasmapheresis for one child and about 4-5 weeks after for another child. great, great news, missjo! just remember : watch trending week by week not day by day (some of the most sanity-retaining PANDAS advice I have been given; courtesy of T.mom)- do not get discouraged if things slip a little...

Not sure if this is what you are looking for, but it is an excellent resource, in my opinion. Practical Advice for PANDAS Again, may not help in your situation, but I think it gives a great overview. It is also not "too scientific", is short enough to read quick and being from the IOCDF- is has some credibility behind it!

I am (and my husband, also) the trigger for a great amount of the OCD around here! It is a nightmare. I am so, so tired of it. I cannot say how to conquer it, but honestly, once a week therapy seems more like maintenance to me and not treatment-level. This is from experience. Once a week is not cutting it here. Contact the IOCDF and see if you can find an intensive outpatient program. we are heading that way very soon with one of our daughters. If your child is willing, jump on it. I think therapy is very necessary to treatment- whether it is "learned behavior", habit or caused by brain changes from the PANDAS-- it does not matter, the OCD is there and it needs to GO! best wishes and contact the IOCDF- maybe there is something remotely close to your home.

They might draw blood on the first day (blood typing and maybe a few others) You leave and return Tues morning. We stayed at the Holiday Inn Georgetown. It is only a few blocks away. there is a hotel connected to the hospital that might be available. No premeds were given. The treatment lasts 3-4 hours or so a day - depending on size of kid and a few other variables. My kids felt fine. There is a difference of opinion in returning to school- though the hem/onc docs were not the ones with the diff of opinion. It seems to be among PANDAS parents! From what was explained to me, you are NOT immunosuppressed post pex- like you are with steroids or other things. If strep or colds or whatever set your kid off, I would avoid it, I guess- but I do not think it is dangerous or anything to go back. I will PM you, too