marylandmom

If you have someone who has been helpful for your childs OCD and separation/social anxiety I would really appreciate the name. Feel free to PM me. We live in the suburbs outside DC Thanks

I would be up for it! I am in Maryland, just outside DC. Happy to drive to NoVa, too.

Hi I know Dr L did Westen blot for my dd8 and it was negative. I have always wondered if this might be lyme and we missed it. Are the test results you get from Igenex more thorough than the Western Blot?

Dd8 just recovering from tonsillectomy and two week dose of Augmentin. Mood was better then I had expected. Ended augmentin last Thursday and mood is starting to go downhill So I am wondering about YEAST. I know nothing. How would I know if this is a problem? How would I treat it? Is this causing all this nasty rage?

Fixit, where did you get this overlay ?

I would wait.........

Oh, I am so sorry to hear of your loss. That is so tragic for you and for all. Please let us know how you are coping as we will all be concerned.

dd8, diagnosed PANDAS this past fall, still has a pacifier. Yes, I know, I know, we are terrible parents........call the cops...... Does anyone have any advice on how to get rid of this darn thing? It has just always been the ONE thing that calmed her down. No doubt this is a sensory soothing thing for her. And that has provided A LOT of sanity in our household. Thus far we are not at any major orthodontic issues with it but I am sure that will change if this continues. We are day 11 post T&A so I have seen it a lot lately and I am just sick of it. Any advice?

Where in VA? We are in MD but 5 miles from DC and have someone we can recommend if you are close to DC

Thinking of you! This sounds so difficult but glad you all have started on the road with a PANDAS Dr. You are on the right path. I agree with JoanPandasMom and try to use this hospital visit to get some help/rest if you can.

Not to scare you but I would certainly make sure there was no chance it was viral or bacterial meningitis ( light sensitivity is a sure sign symptom). Worth a pediatrician visit tomorrow but if your child seems more ill this evening please make sure you call your Dr. If it is the PANDAS, yes, my dd8 had horrible sensitivity to light when in an exacerbation. Good luck:)

I has worked well for my dd8 . In fact, I requested it yesterday after her T&A in lieu of the amox. as I know she will take it and I know it has cleared strep for us the past few times she has had strep.

We have seen Dr L. She is fantastic. My dd8 is not good about medications. I would say if I were paying out of pocket ( as we did. and well worth it) to see Dr L I would want her to see my dd at her worst. I would be sure to stop ibuprofren, at least, 2 weeks prior to appt.

Is Pandas, a way forward posted on the forum? I am trying to google it.

Dcmom and VIckie, thanks for your replys!

oh, and I forgot ( I am tired!) that my dd8 told me at the end of the day today that her "leg was shaking and could not make it stop". Weird.

I posted yesterday about my dd8 rageful afternoon. We did a rapid ( at home) and it was negative last night. Got a phone call from nurse school....classmate was picked up early, taken to Dr., tested positive for strep. Nurse wanted to let me know. ( I was grateful, they are catching on, maybe). Picked my daughter up and ran into a different classmates mother. She said she kept her dd home today, she seemed "off" ( said her neck hurt). I gave her a rapid test to administer. Sure enough, positive, too!! Is this possible? Our daughter could be REACTING to strep in her classroom? To this extent? Seems so far fetched but I know it has been mentioned on the forum. We are scheduled for a tonsillectomy in 10 days. Now I am wondering if a steriod taper ( never done one) would serve better right now? Lots of rage again tonight. Oh, and NO, she does not act up at school, at all. Saves it all for home

DD 8 diagnosed with PANDAS in Sept/Oct after major exacerbation last summer. We were on a good path for a while but caught strep again in the beginning of November. 10 days of Omnicef seemed to clear things (strep-wise) but PANDAS symptioms have waxed and waned over the past few weeks. Today--THE RAGE!!!! Oh my. Pretty bad. She seems to have a clear running nose and I did do a rapid test--negative-here at home. Have a lot of you seen these rages come with viruses/colds? How long do you think your kids PANDAS exacerbations last? I have been charting her and we seem to have about 5-7 normal days and then a few BAD ones.....

We saw an ENT at G'town hospital yesterday. he was not he ENT a few people ( including a few forum mom's and Dr L-if she had returned my call) recommended. He was the recommendation of a few friends in the area for typical tubes/tonsillectomy/adenoidectomy, etc. I am glad the recommended him. I was very adamant that I would want this surgery ( and we are scheduled now) in a hospital setting....not a surgey center. The most impressive moment for me?? Well, telling no one on his staff that we were "PANDAS" but meeting him for the first 30 seconds and he asked "why we were there" to which I said" We have had strep A LOT over the past year and it has been followed by EXTREME anxiety, RAGE, pood handwriting, oh and did I mention severe anxiety?" To which he said, "Well, had she been seen for PANDAS symdrome?" AMEN. That was all he had to say to make me a believer. He said even if you "took the PANDAS out" of the equation my DD is meeting all the criteria for a typical tonsillectomy ( strep 5 times in a year AND he was very impressed that she had it over the summer-----so not just a aschool time reaction). So we are scheduled 12/17. Hopefully, we won't miss much school and feel better by Christmas. Oh, and did he think it would help PANDAS? "It might even things out". That is fine with me right now.

Dr L ( we are referring to the female neurologist in bethesda, MD, correct?) has a calming nature about it. She did not set my, easiyly set-off even NOT during an PANDAS exacerbation, dd8 off. Her waiting room is prety boring. So if you are going alone ( with child) I would suggest bringing some sort of reading or video game for your child. I have done two appts with her with my dd8 in tow---one was pretty much on time and one was over an hour late ( she's very thorough so just be patient, it will be worth it), alone. I would suggest having another adult with you to chat with Dr L. These are expensive ( and worth it) appts and there is a lot of info. I felt like I wished my DH had been there so we could re-cap later.

If you live in SE Virginia, would you consider driving to Bethesda, MD to see DR L? She WILL listen to you and take Cunningham test into GREAT consideration. Honestly, unless I were going to see one of these PANDAS specialist, who understand what all of the Cunningham results MAY ( it IS a study, afterall, not published data yet) mean I would not pay for it. It was a lot of money. And, for us, gave us the great "proof" to ourselves that we were not crazy to think "something" had happened. But, even our great Pediatrician would not have known what to do with Cunningham results. I would suggest seeing DR L or one of the others that people on this forum suggested before I forked over $400 to ensure you are in the right path.

Hi, I remember someone mentioning a chart where they kept a log of their kids behaviors. Perhaps done by Buster? Does anyone have this? I would love to use something like this.

Ahh, YES, thank you Mati's mom that is a good idea. I just need to convince her to take it. I do not know what it is with this kid but she really refuses medicine ( gee could it be the smell, texture, and taste sensitivities!? lol). I am going to try to get some into her tomorrow.

Last infection was last summer, early. By July we were in FULL blown exacerbtion. 14 days of omnicef ( cefdinir) did the trick. So today at routine check up for her younger sister I had my Ped. look in my pandas daughters throat ( she looked weird to me yesterday and today looked red, hot). SURE ENOUGH, strep. No major symptoms. Hopefully, got it early. Now what? Just wait and watch? Hope we don't go "there" again??? We got another 14 day dose of Omnicef ( Cefdinir).