Hrosenkrantz

On the first day of our recent IVIG, after our son was poked a third time, I was told he had "mystery veins" (great, another medical mystery in this kid) in which they looked beautiful from the outside, but then wouldn't thread. I guess this may be a by-product of anxiety

At the very least, you shld get a copy of your bloodwork. Can you call Najjar's office and just ask the front desk person to fax you the lab results?

<<I recently saw a discussion on a parent forum regarding PANDAS/PANS and autism: "Had an interesting day yesterday. Dr. Swedo herself undiagnosed my son with Pandas/Pans. She said kids with autism cannot have Pandas. She said a little OCD and then an increase in OCD with exposure to Strep do not qualify. She said the child has to be neurotypical before onset. My son has a lot of issues but was dx by 2 pandas specialists and she said they are wrong. She said PANDAS is being dx way too much by these doctors.">> This from the article -- i presume this was referring to a discussion on this forum? If so, i'd love to read that original thread... I've been thinking a lot about this question as my son was recently diagnosed with new disorder (not autism), even though three other PANDAS doctors insisted prior to this he has PANDAS? Were the other doctors wrong? Could he have both? In any case, as I wonder about the PANDAS/PANS question, one thing that validates it for me is that some of of my son's worst PANS symptoms -- some OCD, extreme raging, hallucinations, extreme verbal tics, have gone away with treatment and never returned (praying it stays that way) -- even as he still has more recovery to get back to the baseline he was at at 6 years old, before all this hit,

You had me at Matthew McConaughey....

I believe your rights are that you are entitled to any testing done on your child.

<Grimacing faces, agitation, temper tantrums. Baby talk, rage, karate chopping us. I know it's not his fault. We were doing SO well. I can only hope he wakes up tomorrow and this is all over with.>> Joybop, I feel your pain. I hope and pray today is better for your guys...

trinitiybella -- have you gotten a copy of your NYU bloodwork?

If it makes you feel better, my child flared when he lost a tooth in November. He lost a tooth the other night and no flare.

Hi -- FWIW -- when our son was suspected of Pandas in nov 2012, our ped prescribed a month of augmentin. She followed up with a 10 day run of cefindir. It was with the cefindir that we suddenly started getting reports that our son was back and we considered that our magic medicine. Unfortunately our doctor took our son off the cefindir after the 10 days (we didnt know another about PANDAS then) and he got sick again in March 2013. After a few months of various treatments, we tried cefindir again but it really wasn't effective...

Interesting post t_mom. By the way, your in box is full

Congrats joybop! Please keep us posted on what NIH recommends for your son...

My son was pretty free of his worst rages for more than a month, than the day a tooth fell out, he had a major rage. I took these notes from the emails people sent from the PANDAS conference: xxx mentioned that a flare can be brought in by a simple cold or virus, even if the child doesn't seem to contract it. Another cause of flares are loose teeth or teeth coming in. Any source of inflammation in the body can set off a flare. She said not to panic. These types if flares general last only 8 days and they will return to their baseline soon.

Lydiasmom -- like you, our son had some issues before PANS hit. He was actually just fine til he was about 4, when we discovered some speech issues and later attention issues. He fell off a cliff, so to speak, summer of 2012, and was later dxed with PANDAS. He does appear to have an ASD when he is in a PANS flare. Also, like you, we do experience urinary incontinence when he is in a PANS flare...

Why do most labs refuse to test stool?

me too -- im also interested in the story of anyone who says they are symptom-free (the holy grail!)

vern_dave -- I understand how difficult it is to see your child. who did have struggles before pandas, get hit with a new issue that causes so many setbacks. My son had some developmental issues before PANS, but with some supports he was doing well -- then PANS hit, and it was so, so hard to see him lose skills he had -- not just talking, but writing name, drawing pictures, and other basic skills.

I understand why you are stressed out. I was very worried before our first IVIG.

I had a similar thought as llm. I'm sure pursuing other infections is the last thing you want to do right now. But i had one doctor say to me after my son seemed to get worse after an ivig that it could be because we didn't eradicate an underlying infection...

When my son had an EEG recently, it took a week for the the doctor to call me and discuss the results. For me, getting an EEG is not the same as getting bloodwork, since I can just get a fax or copy of the bloodwork, but in the case of the EEG, the doctor needed to review it first. My son was seen by Dr. N in Sept, and he had bloodwork there. I know in our case, aggressive calling to discuss backfired, and I've tried since to restrain myself in calling doctors for information. I know that's nuts and we shouldn't be at their mercy, but for me, that's what's worked

llm -- how does one know if yeast is an issue? I can probably get to a doctor in the next couple of days to test for that.

Hi -- my seven year old son is experiencing extreme hyperactivity now. Exercise and diet not really helping. Are there any supplements that are really effective at addressing this? He's been on a low dose of risperdone for two months to address some extreme raging, but the rages are pretty much gone. I'd like to change his medicine from that to something like intuive to address the hyperactivity, but i'm unlikely to get to a doctor for the next several weeks and i'd like something to help during the holiday period. I've been told zinc supplements address attention. Any other thoughts? My husband wanted to try DMG, but we had bad luck with adderall last year, and his neuro said ADD meds are bad for these kids, so I'm hesitant on DMG. One thing is that my son really fights me on the medicines we give him (supplements over the years have always been a fight) so i'd like to reserve the effort for something that really works (we have focused our energies on abx and steroids; the risperdone he doesn't mind taking)...

Anybody want to post part two?

Is there any disgusting forbidden food he will take as a bribe. Getting my son to take his medicine has always been a trying challenge (not the risperdone though, he seems to take that without a fight).He has really slacked on abx in the past weeks. In our early steroids week, id load him in the car, drive to mcdonalds drive-through and get steaming hot pancakes, wave them in front of his face with one hand while i held the medicine in the other hand and made him take it. And he is supposed to be gluten free but i figured this took precedent.When he was fighting bloodwork the other day, i pulled a piece of minibagel from my purse and gave it to him so he'd compy

T anna -- in terms of what's left, my son has had keflex (not sure it did anything) and clindomycin

+1 to quannie's point. I read this entire thread and am well versed, having lived it during my son's three years in public school, with the legal definiation of what leads to services and the enormous financial pressures that schools are under, as referenced upthread. As a journalist, I'm trained to consider both sides of the story, always. But ultimately, it's really really sad that the child is getting lost in all this process and alphabet soup -- how is any of this ultimately serving the child?