Wilma Jenks

I so appreciate your concern and kind words. It truly is comforting. I will keep you guys posted. I pray she gets some relief too. She is such an angel locked inside such torment. Stinks!

He confirms what Scott Smith told us. He said a severe case of PANDAS. He is going to try another abx. called ramiflex or somehting like that. Don't have the name in front of me. He gave us a Rx for the steroid burst, but we are hesitant becuase she gets so wild with so much. He is getting us ready for IVIG. Checking on insurance. He was kind and informative. He wants us to check for co-infections on the Ingenix test. I wonder why Dr. Beals did not have us do this. He is the Lyme expert. Just wondering...My gut tells me the IVIG is the way to go. This poor child has been so sick for soooo long.

Thanks. I am praying so hard for some more direction. I am a bit disappointed to know that he will be interrupted so much. Oh well, I will keep you posted. Thanks everyone.

My child was sick from day one. In retrospect I saw it the first day in hospital. She would not sleep and was agitated. Took her home and she slithered up my chest onto my shoulder at 5 days old. No joke. At 10 days old she developed a walnut sized lump under her ear. It got worse and worse. Never gets tired. Distorted thinking, agitated, impulsive. Super odd thoughts. Will get super mean if you tell her she is getting big. Never like babies and was very confused about it. Won't come near me, because she said I look really wierd. Not sure if its all PANDAS. Severe OCD and its getting worse. Wishing you the best. Oh, and tons of wax in one ear. I think u mentioned that too.

I am seeing Dr. B. on Monday. What can I expect on my first visti. How long is it? Does he look closely at our medical records? What is he demeanor??? Any advice is welcome??? Thanks so much...

So Sorry Quinny. Please just take one day at at time. I am glad ur speakin about it. It will get better now that you learned about the Lyme thing. Please keep us posted.

My child tested possitive for clostridia on the ONE TEST from Genova. We were then told to do a follow up MICROBIAL ORGANICS ACID TEST, to follow up and see if clostridia came back after treating with Vancomycen. Not sure how to read the test, and was wondering if anyone is good at this. I am going 2 schedule a phone consult with Scott Smith on Monday... but I hate waiting for answers. Can I post the results?

In Morris County. Do just the parents meet or is it for childen too. It is soooo hard 4 me to get away from my child.

I am in Northern Jersey, but would love to meet, if I am able.

did nothing here

wondering how you are today?

any discounts that u know of at the duble tree? we will b there the 19th oa april. man, this doctor is popular!

I am so sorry 4 your stress. This is wrong. Please whoever has done this STOP! We parents don't need more stress. THAT IS FOR SURE. Keep us posted Philly.

So your not sure that PANDAS is the diagnosis? Peglem... could u tell me some of your child's symptoms, if u don't mind. Is sleep REALLY bad?

We are there for you. It will get better. Keep searching. My 11 year old is going through exactly what you describe. Must be ######. I know its ###### to watch her go thought this. I am thinking of you...

Was the tauring activating at all. Most things make my girl so hyper.

We see Scott Smith and your child sounds like mine and far as the speeding up and racing goes. We ALSO saw major symptoms start at around 2. Did you say u did the Cam Kinase test? What was her number?

It seems that all of these PANDAS kids have normal EEG's. My child's EEG's were abnormal. She probably has more going on then just PANDAS, I guess. Isn't there any PANDAS kids that have abnormal EEG's?

If I cancel this trip... all ###### will break lose. And I am not kidding. I am afraid of her aggression to be honest. I always have to tell little white lies, like the trip was cancelled to do bad weather or something. I hate lying 2 my child. Never thought I would have 2 do it, but walk in my shoes and you will see why. I am sure some of u can relate.

FOR SURE TRY THE MELATONIN. Use to work her but now that OCD is out the roof, it stopped. Inositol helped my girl get to sleep although makes her mean during the day. Magnesium helped but made her confused during day. (My child is a tough case though) Right now she is on low dose of seroquel. It helps with sleep but she still tosses and turns. If I go higher her brain races more and she gets mean mean mean. I have not found the magic bullet yet. Night time is the worse these days. My body shakes just thinking about it. Good luck. and hang in there.

has anyone ever tried either of these for the ocd? the inositol seems to make my girl hyper and more agitated. i was wondering if i should try the 5htp to try to keep her stable b4 our appointment with dr. B. Can u give me your opinion?

OK, I am headed toward IVIG, but was wondering if it is dangerous for my child if it is really not PANDAS or perhaps its other types of infections. I am pretty sure its PANDAS and so is Scott Smith, but I guess you can never be 100% sure, right? Also...if your getting the IVIG for PANDAS, and there IS other infections, are they erradicated too, so to speak? Thanks for any advice u have.

Well.... He does not think its Lyme, but he is doing additional testing to rule it out further. He said if its PANDAS AND the IVIG does not work the first time,... it's likely it won't work at all.

she was tested and i brought the results to dr. beals in maryland. he said it did not enough possitive bands to be lymes, but he is doing an additional test anyway. i think its the "31" test. do u only get herxing with lymes? and not pandas?

Yes. I believe it is becoming an emergency. Her OCD is starting to go out of control. Scott Smith believes IVIG is the way to go. I have an appointment with Dr. B in Conneticut on April 18th. It use to be that she was very confused and agitated with SOME OCD showing, but now that we treated for Clostridia... she seems less confused and more normal, but the OCD is REALLY REALY bad. Before, she was stuck in front of a TV because she could not function. Now she is able 2 talk and communicte and tell me how severe her OCD is. She is up for hours brushing her teeth. Her gums are raw. She says the same sentence for two ours straight at night and I have to repeat it, but I never seem to get it right. She gets super agressive because I don't get it right. Melationin use to calm her. Not anymore. A low dose (12.5mg) seroquel helps a little, but if I go higher with this stuff, she throws things and REALLY flips. I also have a three day trip planned for Disney World on April 10th. Ugh...I did not see this coming.