Sirena

I'll pm you

So, we are right in the middle of this...we came to FL to do the Rothman program. We were underwhelmed and then realized that the doc was a fellow in training. Very nice, but we didn't travel all this way for that. We did give it a week and we did think that the staff docs were much better but they weren't really doing the treatment so we switched to Rogers. We've only done three therapy days but It's a much better fit. Our ds is in the 3 hour a day outpatient program. Insurance pays all except $20 a day copay. Also, they are sensitive to the pacing and how much the kids can handle.

Our ds7 had flaring post ivig --some symptoms improving but others worse. Our doc prescribed 3 days of Solumedrol IV which helped.

T&A really helped our son.

Hi Kristi, It is so crazy and difficult--and so hard for the whole family...we are 10 months in with a severe case and while it's better than a month ago, it's still so debilitating. Anyway, just a couple other thoughts...we've started antioxidants and I feel like it's helping--buts that's ancedotal. Also--how about ANA? Maybe there's a clue there. sirena

Our kiddo uses Legos, mine craft and screens to cope. In fact his neuro said it is typical and probably counterproductive to try to restrict while in a flare. When he is doing better, he drops the screens for his normal varied activities.

Us too! This crap makes life So so crazy and draining. While we feel fairly supported, it's still unbelievably exhausting. It takes so much energy to keep it together while kiddo is raging over whatever triggered him. I just learned about how severe chronic pain can strain the adrenal axis and cause a cascade of health issues. It would be interesting to see if the family stress shows up in parent hormone levels or even our kiddos for that matter.

Jennapow, Our DS7 (then 6) spiked a 104.5F fever one day after starting Augmentin. He was a mess but about 5 days later the fevers broke and it looks like an abscess broke free from one of his tonsils. That wasn't the end of it, but indicated deep tonsil infection. TSo maybe its a herx. reaction...Does he have an elevated temp? Have you tried a dose of ibuprophen to see if that helps with the behaviors? Ibuprophen isn't the cure, but it makes a huge difference and our kiddo probably wouldn't be able to attend school without it at this point.

EMST. I responded previously but for some reason it didn't post...Anyway, DS is just getting ibuprophen and his daily Azith currently (and probiotics, Vit D and fish oil). So, Idk. Wisdom Seeker, You got me thinking and I checked his sleeping habit but he seems to vary from one side to the other without a pattern. I appreciate the feedback about the "keeping it together at school" because I've been finding it hard to explain to others and I am feeling a bit resentful and guilty (as in is it my fault??) --even while I "know" intellectually that he is working very hard to keep it together at school. It helps immensely to know that this is common in our kiddos. Sirena

So we are now two weeks post IVIG and the craziness continues. DS7 has times when he's "all there" and other times--daily-- that he goes off the deep end and can't calm himself. He's very aggressive (hitting, punching, throwing) and his language is horrible. Drops the f-bomb, etc. He feels bad about it but still can't get a grip. There's often an association with a temp like 99.4F and one (left) )red ear. That is the same side where he had an infected tonsil (T&A in Sept). He's still on Azith and ibuprophen. I uprophen does seem to help. I'm wondering if he's still fighting some infection. Interestingly he holds it together in school (1st grade) but says its to much to have to do it at home too. He was considering sending his beloved elf on a shelf back to theNorth pole early this year bc the pressure was too much. I'm thinking we need to revisit other infection possibilities again. Any thoughts?

Another vote for Dr. L. You might also print off a copy of the diagnosis algorithm from the ppn and try to get another doc to run them. Send rate and crp are useful for indicating active inflammatory process which tends to get a doctor's attention. Also, you can request lidocaine cream to be placed on your kids arm for twenty minutes before the blood draw to minimize the discomfort. I was able to get a tube prescribe by our pediatrician and I carry it with me in case they don't have it handy at the lab.

Cellcept is pretty heavy duty. If the steroids are giving a puffy face, you may get some help by paying attention to diet and lowering salt intake (from my experience with Lupus). Also, if steroids help, often Aleve (Naproxen) also helps. Dosing aleve for kids is more difficult because pills are all 220mg, but you can get a liquid form ordered which allows correct dosing. I think I got it for our kiddo from Walgreens but I had to find out what size bottle it came in and then the doctor wrote for that size.

Suzanne, Perhaps your child can qualify for Medicaid based on medical disability from the Pandas. Medicaid policies should (must) cover the treatment under the EPSDT benefit. When the commercial policies exclude it as their policy, it is really hard to win coverage. One other avenue is if you happen to have a policy from a self indemnified group like a state employee--then you have recourse through the employer-benefits office. State insurance commissioners may also prove helpful--especially if the policy claims the treatment is "experimental or investigational as the basis of denial. You can point to more recent research that validates. Our commercial coverage denied it but DS's secondary Medicaid came to the rescue. It still took a month but first dose was just this Monday. Hang in there. You might also look for alternative grants for medical fu ding for kids. There's a few out there that --compared with fighting insurance--might be a better use of your time.

Thank you both for the tips. We are hoping things will go well tomorrow and help. Sirena

I was relieved and moved to tears today when I got notified that we (finally) got authorization for IVIg therapy through our son's secondary insurance (a Medicaid plan) after our primary commercial PPO denied coverage (based on their medical policy which deems IvIg investigational for PANDAS). I knew it should be covered by the Medicaid plan technically, but you all know how it is... My 45lb ds7 is scheduled for day one next Monday followed by a second day of infusion the following week at our children's hospital (outpatient). Any tips and advice? Thanks, Sirena

DS7 has a bad case of the creepy crawlies currently. He knows there are no bugs on his arms and legs but he "feels" like there are bugs crawling up and down them and it "freaks him out". We had lots of this when he first got sick but improved after T&A. Anybody else see this type of symptom??? Just checking... He also currently has an upper respiratory infection (snotty nose, puffy face, temp 99.4F, belly ache). He's on azith and ibuprophen and waiting for insurance clearance for IVIG. Thanks, Sirena

Perhaps Dr E -psychiatrist at AI Nemours might help.

What about a parasitic round worm infection (nematode)? Some have 6 week cycles and don't have obvious symptoms but would activate the immune system... One actually triggers an allergy to dust mites according to something I recently read.

Dr.L recently told us naproxen (Aleve) is even better than ibuprophen which I believe since I take it to manage my SLE symptoms., Fish oil is another easy to add inflammatory if your child is not already on it. I second the steroids idea. Maybe suggest a possible me drop dose pak.

If you can easily get a referral from your primary doctor, that would be a good way to go.

Hi Mama2alex, We are now two months post T&A and unfortunately, PANDAS symptoms are kicking up again. We are now working with his doctor to do IVIg-hopefully soon. I will say that things are still better than they were before the T&A (for example, so far we are able to all live in one home and don't have to keep our DS and DD in separate living situations for their own safety). But, of course we want to get full remission and don't want to let it get worse again. Our DD has an ear infection the last couple weeks (and we're getting her swabbed for strep again to be safe) and a virus has gone through the household, so perhaps there's an explanation for the exacerbation but its so crazy making to see him suffer so.

An rarel blood protein disease..

Or DS, who just turned 7, had a tonsillectomy one month ago as advised by Dr.L. Dr.H at GU did it and sent samples for DNA based identification. Based on the results, DS was given azith on top of the clindamycin he's been on. Just this week, our kiddo is back!! Such a blessing! I know we are fortunate bc this started for us in Mid-May so in the big scheme of things--we got pretty lucky figuring it out and getting the right help. We still have emotional and behavioral "fall out" to deal with -meaning some bad habits that were acquired--but I think that is all manageable if we can maintain the gains. So thanks to everyone on this board. Your support and hard won wisdom and advice has been our guiding light and absolutely Indispensible. I realize that this might not be the end of it all so I will continue to rely on your collective wisdom. Wishing you all strength, hope and perseverance. Sirena

Our family has had a good experience at Cedars Sinai in LA with a special protocol --although not for PANS/PANDAS.

Hi puppy dog, The quantity of prednisone and whether ther is a good taper seems to make a difference from my experience. Our ds was on pred this summer and it helped a bit, but ibuprophen seemed to regulate more. I wonder if medrol (predisolone) might be different. I've read it has better activity for neurological inflammation.