Ebersolk

My daughter was originally put on risperdal and zoloft. I also did not agree w/the risperadal addition and the psychiatrist kept wanting to increase that and not the zoloft. I did ultimately switch psychiatrist who agreed to decrease the risperadal and increase zoloft. My daugther ended up getting a breast lump (side effect of risperadal) after only 6-8 weeks on it and we stopped it. This was 1 year prior to her PANDAS diagnosis. I would say trust your gut.

My daughter's western blot was negative and then when we did Igenix Lyme and co -infection panel. The Lyme was still CDC negative but he co infections were positive and when we went to a Lyme DR he dx her with lyme as well as the co-infections.

I am not sure where you live but you should definitely check into PANDAS/PANS and Lyme. My daughter treated for 1 year for regular then we learned it was Pandas and was linked to a strep infection and 2 years later learned it was LYME with co-infections. I do know that if you have strep that won't clear Lyme is often the culprit. My daughter's Western Blot was CDC negative but when we took the Igenix test for Lyme and co-infections and went to a Lyme doctor, she was diagnosed with Lyme. If you are near NJ, I would recommend Dr. Trifilletti or near CT, Dr. Bouboulis and near MD, Dr. Latimer. Dr. T and Dr. L are pediatric neurologist and Dr. B is an immunologist. I also know my niece who had a virus also had issues walking for awhile and when the virus went away she was better but it took awhile- so I definitely think your daughter has some type of immune system issue-whether caused by strep or some other virus/bacteria.

Does this mean that DuPont will be PANDAS friendly? Do you know what type of treatment for Pandas she offers?

Prior to our diagnosis, my daughter also always had really bad breath. Doctors had same responses as Philamom. It was only after the diagnosis and we began treatment (steroids and antibiotics), that the smell went away.

Can you pm me too? Thanks!

You need to make sure that any therapist is doing ERP. My daughter also went through school refusal. What you are describing above, sounds like "bad thought" ocd which my daughter has. My daughter used to think she would put up her middle finger (she was in third grade so it had no rational basis) and she was afraid she would swear. She also would think she would cheat on a test or that if she bumped into someone at school she did it on purpose or that she wanted to hurt herself. ERP deals with "exposing" them to their fears. So we worked up to actually having her put up her middle finger and to curse (sounds crazy right?). With the cheating, we would say maybe you did cheat on that test. or So what if she did. The ocd always wants to be 100% sure so we would say maybe you did, maybe you didn't. I learned you can't start at the top of thing they are the most afraid of (like putting them in school all day), but start out slow (like one class as described above- or if just making it into the parking lot or the door works and each day do a little bit more). We went through 2 psychiatrists and it was not until our 4th therapist, that we got the right one. I have heard great things about USF.

I am wondering if it had anything to do with the Tamiflu? I googled it and it said the most common side effect among pediatric patients is neuropsychiatric issues. I would probably try another high dose antibiotic. What about omnicef?

We have used Dr. Lori Kasmen at Anxiety and Agoraphobia Treatment Center in Bala Cynwd. Dr. Grayson who has written several books on OCD is at this center. Rates are $160 (but there may be other children's doctors who are lower). They submitted to our insurance for us for reimbursent as out of network provider. I know she treated my daughter and at least one other with Pandas/Pans. She is a great therapist. Kerry

Anyone have any suggestions for who to see in the North East for thyroid issues? We are currently treating with Dr. B and Dr. J but need to add in someone who can treat 13 year old for thyroid issues. We are near Philly but will travel.

Does anyone know of doctor who is pandas/lyme friendly near Philly to assist with thyroid issue? Thanks! Kerry

Does anyone know of a doctor to assist in the Philly area with a thyroid issue who is Pandas/Lyme Friendly?

I do not know of any Lyme doctor in Buffalo, sorry. Just wanted to chime in that you should try to pursue the Lyme as it appears from what is positive that the CDC would confirm Lyme as two of the positives are on double starred bands.

It is my understanding that Bartonella is a separate co-infection. You could get it from a tick bite but also it can be caused by at cat scratch, fleas or body lice. It is also called cat scratch fever. My daughter was diagnosed w/Bartonella and Ehrlichia on Igenix. She had some positives but was CDC negative for Lyme. I went to Lyme dr as well as Dr B and they both diagnosed her with Lyme as well. We are currently on omnicef, azith and bactrim and we recently started tindamax (the cyst buster). We only take the cyst buster on the weekends and it definitely is stirring up old OCD things we have not seen in awhile.

Is there any antihistimines that are better to use than others?

My daughter was diagnosed w/Pandas/Pans over 2 1/2 years ago. We had 2 negative Quest Lyme tests. We never did any co infection tests. In September 2011, her Igenix test showed the following: 31 IND, 39 IND, 41 +++, 83-93 IND (IGM) 31 ind, 41 +, 58 + (IGG) Bartonella + IGM 20, IGG 80 Ehrlichia + IGM 20 CDC would consider us to not have lyme. I went to lyme doctor who diagnosed us with Lyme. We are currently still treating for Lyme and her test results in May showed 41 kda + and 39 InD (IGM), all IGG negative. All co infections negative. Since we started treatment with the Lyme antibiotics,OCD/anxiety is slowly getting better. (It spikes when we are taking the cyst buster for 2-4 days and then goes back down). Did you do any co-infection test? I would still go to Lyme doctor and get evaluated. Kerry

Has anyone's kids had testing which revealed low thyroid and what did you need to do? My daughter's last blood test showed low thyroid and we are now going for a full thyroid panel.

Can anyone pm me information on Dr. Corson in PA for Lyme treatment?

Can someone assist with a suggestion for detox for kidneys and liver? My daughter had an elevated bun/creatine level. Thanks!

Can someone advise what detox they are using for kidneys and liver? My daughter had a raised bun/creatine level.

Where do you go to get the tests?

Dr. B considers her positive for Bartonella and Ehrlicchia (sp). She is 65 lbs and 4 ft 4 inches. She is on 300 mg of omnicef which is considered her maintenance dose. From reading all of the Lyme stuff, my guess is an LLMD would say she also is positive for Lyme. I agree with you about keeping on the Omnicef. I actually talked to Dr. B about that but left w/out that rx so I am going to email them to get them to call it into my pharmacy. I have enough to get me through next week and will only start the azith right now w/the omnicef. We have been doing culterelle only (2 times a day). My preference would be integrative but realize I may have to wait a while to get in with anyone so will take any and all recommendations you have. She is on a lose dose SSRI. Thanks so much!!! Kerry

My daughter was diagnosed with PANDAS 2 1/2 years ago. We now just got Lyme testing back from Igenex. It says Igenex and CDC negative but has the following: IGM 31 IND, 39 IND, 41 +++, 45 + and 83-93 IND. IGG 31- IND, 41 +, 58 + co infection B. Henselae (Bartonella) IGM 20, IGG 80 E. chaffeensis (ehrlichiosis) IGM 20 and IgG less 40. Which one is the more active? Any thoughts on the results? We currently treat w/Dr. B. I am looking for Lyme dr in PA/NY/CT/NJ/DE/MD. Dr. B has recommended a change and antibiotics but I am concerned about what else we need due to possible herxing. My daughter currently on omnicef for PANDAs but wants to move to 250 mg of azith and 500 of Bactim. My daughter is allergic to penicillin. Thanks! Kerry