Momto2boys

I feel exactly the same way. It is so scary to think about otherwise. I was intending to take my son there last month and thank goodness I got a bad feeling about it! I had been seeking out other options to help my son make some progress and all I got was to be transferred from one department to another and one doctor to another until finally I was given an appt. only to recieve a letter a month later saying the doctor was changed again. It sent me a clear message that none of the doctors at BCH seemed to want to treat a PANDAS child. I cancelled what should have been a Sept. appt.

My youngest son had trouble taking liquid meds for a long time and would request that I use one of the syringe type medicine droppers that drug stores will give you for free. I would need to hold him firmly and then squirt it into the back corner of his mouth. "Injecting" it into his mouth allowed him to avoid tasting it and prevented it from being spit out (something he also did).

My son is scheduled for IVIG with Dr. B. on Monday and Tuesday. I only spoke with person that handles insurance to get this date after waiting weeks to hear of a date. I'm wondering if there is anything that we should be doing to prepare (besides drinking extra water) or are there any medications that are usually recommended or prescribed? I know the office probably thinks I'm a pain so before I call to ask all this I thought maybe I could find out what is typically done since so many people here get IVIG with Dr. B. Thanks for your help!

My DS12 was diagnosed with PANDAS in spring '10. We seem to be stuck in cycle where he is good for a month or two and then has a flair. He just can't seem to stay at a good place despite 2 prophylactic abx, allergy shots, singulair,and on and on for meds. The only thing that brings him out of flairs is prednisone which he has terrible side effects from but when the smoke clears he is at 95-100%. I have my son back. It is difficult to see that no matter what he doesn't stay at 95%, he sinks back down within a month or two. So the new rec is IVIG. I'm sick of false promises of 'this will be the magic bullet that fixes it all' so I want to hear the downsides, what didn't work, etc. I certainly also want to hear if you do think it is the magic bullet and proved to be so for your child. Thanks!

I'm in Rhode Island but would be up for dinner in SE Mass. If you happen to be doing it on Tuesday or Wednesday I could. There are no support groups around me and no other PANDAS/PANS parents so I'd love to have others to meet up with.

He weighs 94lbs and is on 250mg Augmentin Daily and 1000mg of Omnicef. The Augmentin has been standard over the last year but the Omnicef was just added in February. I will look into the xclear since he does have sinus infections often- that is what causes the flare ups. Also he is better than 2 years ago but about the same as one year ago so IVIG is still a question for me. I guess I want to know that I tried it all first.

Thanks! I will ask for all this. I'm printing your list now to take with us when we go in a week!

I don't know who've you already seen, but I would agree about seeing Dr. B. I think he is more aggressive (in treating) than many other docs, which is a good thing. If I were in your area I would see him. Also, I want to ditto the concerns about Singulair. Dr. Murphy (at the IOCDF) specifically recommended against it for PANDAS kids. Was trying to be politely quiet about it but we already see Dr. B. That is who has treated my son for the last year. Thanks for the info about Singulair. I wasn't aware of that and he has been on it since last spring which is really concerning. I will address this with Dr. B.

He had full testing done through Igenex with no sign of Lyme so that should rule that out. Or is there something more I should be looking into? Also, thanks for you reply.

Thanks for your reply, 1. Sadly we are with a pandas specialist 2. We have tons of testing- a whole gamut when we started with Dr. last year. Which tests will test for chronic infection? I will go back and go through his results so I can see if he has had those tests yet or if not I'll be able to ask at the next appt. 3. He has done poorly with the steroids- well gets better for a little bit but has tons of side effects that impact him as much or more than PANDAS. Honestly, I'm scared of IVIG and the doctor has not felt that son qualifies for it even though the doctor is known for using this. 4. He is doing allergy shots through specialist, is there something else we should be doing? The allergies are definitely a trigger for him. As far as the flare ups go...no real triggers- other than sniffles maybe but the idea was that he is taking so many meds to help put his autoimmune reaction to sleep so that he isn't getting sick all the time. It just isn't working and I'm really frustrated.

My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had. He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired. We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments. He is on: Augmentin 2x/day Omnicef 2x/day Singulair Intuniv (for ADHD) Loratidine (OTC allergy) Nasonex Vitamin D Omega 3 Probiotic Mucinex 2x/day Multivitamin Ginseng (recommended by GP for ADHD) Ginkgo (recommended by GP for ADHD) The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long. Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied). The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care. I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone.