kcdc3

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

My DD has been on 2 separate trials on abx. First, Amoxicillian. She cleared up within 5 days and was GREAT for about 5 days, then regressed. This month, she was put on Zith and did the exact same thing. She cleared up wonderfully- tics left, better more stable mood, able to "conquer" more OCD, then after 5 days, she regressed completely (everything came back except the tics.) Has anyone else experienced this?

Same here, I just typed it up in an email back to her.

Well, I'm not sure what you would call it, but her doc said that because of her Ferritin levels, that she has a "high liklihood" of having a "sleep disorder" - meaning that she is not necessarily having trouble getting to sleep or waking up during the night (neither of which she has trouble with), but that her brain is not actually cycling like it should during sleep and not putting her in a deep sleep wherin the brain has time to grow and develop. His theory is that partly due to this, she is waking up not rested and therefore, causing more compulsions on top of the PANDAS. He suggested Miropex or Requip - both prescription meds.

DD's doc thinks there is a strong liklihood of a sleep disorder as well as PANDAS. Has any of you tried any of the sleep disorder meds coupled with antibiotics and seen any improvement? Or have any of you tried just the sleep meds without the abx? Looking for some feedback on this theory. He noted that her Ferritin was at 20 and he would like to see it above 50. He said any level below 50 strongly suggested low brain iron, which strongly points to a sleep disorder.

Our dd was tested out of exacerbation and we came back at mid-high at 163. She had been on 30 days of antibiotics a few months prior, but was not on anything at the time of the blood draw. She went into an exacerbation about 3 days after the draw.

mom md... I just found out that Dr Nelson has moved to NE. Who are you working with now to continue treatment locally? I am still looking for a provider that would write script and administer IVIG. thanks. We are currently seeing Dr. Lee (per mom md) -he seems to be knowledgable and told me that if IVIG was necessary, he would "refer that out". Not sure what he means by that. He is willing to give antibiotics, but he seems to be very hard to get in touch with. After our appointment, I have tried to contact him several times and he takes a very long time to respond. For me, though, I just need the abx treatment for now so he is working out fine for the time being.

My daughter (age 12, 95 lbs) was switched a week and a half ago to Zithromax 400 mg per day. (I posted earlier today that she was on 500 mg per day, but just realized that was an error.) I saw improvement within 24 hours. Prior to Zithromax, she was on augmentin for 7 weeks with minimal change in symptoms. We have been on Zithromax for 7 days now and just yesterday, dd said that "it was weird" but that she kept getting "messages" that she didn't need to do some of her rituals. Quite possibly is this because her brain is now beginning to be able to "get" the messages that it was not able to get before?? We shall see.

We are on 250 mg per day - but just started last week. No sign of improvement yet, but I have read that it may take 20 days or more to see improvement. I'm still hopeful.

I agree -I'm thinking we might need a higher dose. We've only been on it a few days, and I certainly do not expect any improvement yet - but I'm treating with a doc who may or may not go another 30 days and want to make sure I get this right while I can. If I can just get the slightest improvement, he will be more likely to continue. My dd has been suffering with this for 3 -4 years, so not sure what to expect as to how long we might need to stay this course.

Finally doctor prescribed dd (age 10, 85 pounds) Zithromax. We are taking 250 mg per day. Can any of you relate to that dosing with any of your children about the same weight/age? Any results at that dose? I'm not sure what kind of dosing this is - is this high or low? I know that when we tried Amox we were at 500 mg per day. The doc that prescribed this is familiar with PANDAS, but not an expert.

Eating issues and fear of becoming overweight are at the very center of my dd's PANDAS. She is afraid of obese people (hyperventilates, avoidance, more tics) and is obsessed with her weight, what she eats, etc. It has completely taken her childhood away from her. We were given a diagnosis of OCD/anxiety and my dd was VERY resistant to therapy. She was placed on Zoloft, which made her much, much worse. We did not even know about PANDAS until Feb. of this year - she has been dealing with OCD behavior for 3 years, although not all the time was it the fear of becoming fat. This has just been the last and most scary wave of the "waxing and waning". After looking back at her medical records, we came to realize that her OCD behavior started after a strep infection 3 years ago. I have been fighting since Feb of this year to get a doctor to listen to me and to give me ABX. I think I've finally found a doc who is going to cooperate, but it has been tremendously painful and still is at the moment. So sad to see a 10 year old girl so obsessed about weight. I feel like we will be in a hospitalization situation if something doesn't happen soon. I think Dr. K mentions in some of his case studies that eating disorders can come with PANDAS.

My dd only had OCD for 3 years, but developed tics after her last strep in July of this year.

I know some of you are using Advil - how much are you doing per day? Once a day? Every 6 hours? Do symptoms calm over time or do you notice difference soon? Also - are you using Advil in combo with Abx or by itself?

So, if a child has this, would the strep (DNase)Titers be elevated, I wonder??

I think we all should send in a request to Oprah to do a show about this. Her guests could include Dr. K, Dr. L, Dr. T as well as Madeline Cunningham- maybe she could get more funding from it by raising awareness for research! I think that ALL the guests in the audience should be parents of children with PANDAS. She, of course, would have to move the show to an arena instead of the studio, but what a way to get the message out!!!!!! Anyone agree???

My doc has agreed to an antibiotic course with my dd. He has offered to put her on any antibiotic that I want to try. We tried Amox several months ago and had a noticeable change in her within 5 days, however, her siblings came down with strep the rest of the 30 days and she went down, also -although did not pick up the strep (she had already had it). My doc at the time would not renew the Amox prescription. Now, we have a different doc who is willing to give whatever we want. Here are my questions.... 1. Is Azith different from a Z pack?? (dd took a prophylactic Z pack when last exposed to strep and we didn't see any changes) 2. Does it matter where you live as to which antibiotics seem to work best? (I've read that somewhere and I live in NC) 3. I've read that Amox does not completely eradicate the strep - any comments on this? (my dd's AntiDNase is still elevated 4 months after strep infection, even with the 30 days of Amox). I guess I'm just confused as to what I want to try because of all the conflicting information out there. Please help!!

Sounds like my daughter, however, my daughter's symptoms started at age 6, possibly age 4. She is now 10. Her CAm score was 163. The others were very high normal with one in the middle, just like yours. When blood was taken, her OCD was mild, but she was experiencing tics. A few days later, she had a major burst of symptoms, and we found out that her best friend had strep. We had her tested, and her culture was negative. Anytime she is exposed to a virus, she has a symptomatic burst, whether or not she actually gets sick.

I live in NC and am having a TOUGH time finding a doc to give me the antibiotics. I am so tired of calling docs and asking the same questions. I find docs who "treat" PANDAS patients, but only throw drugs at them to mask the symptoms of tics. When I ask if they are open to antibiotic therapy, I always get a No. I really don't have the money to travel to DC to see Dr. Latimer, as I understand that she does not take insurance. I did get her ped to give her a 30 day dose of Amox. when she last had strep, but I don't think it was strong enough. She did get much better, but then tics appeared and she went down again. He will not prescribe any more antibiotics. Very frustrating.

My PANDAS daughter was on Zoloft (before she was diagnosed with PANDAS) and it made things MUCH worse. She also tried CBT and it did nothing for her.

Do any of you use any stimulant medication on your PANDAS child? My PANDAS daughter was presribed Ritalin by her primary care practicioner (who does not understand PANDAS). He presribed 5 mg twice a day. She already has tics, and I'm afraid they will get worse with Ritalin. Any thoughts?

My daughter (age 10) has been prescribed Ritalin for ADD. The dosage is 5 mg twice a day. I don't notice a difference and wanted to know if Ritalin is one of those that requires playing with the dosing. I don't even know what a typical dose is. We are new to the ADD world. Any input you can give would be great. Thanks!

I wonder if anyone else who has a child with tics as the main, could let us know if they also had high lyso (and hi cam k s well....we were 179, which I find surprising, since some here with way more debilitating OCD have had a lower score than us). Faith Faith: I'm the one who started this thread, but I'll repost so you won't have to scroll back, but just responding to your question above. My dd(10)'s Anti-L (320 - top of normal); Anti-T (1000 - top of normal); Dop 1 (2000 - top of normal); Dop 2 (8000 - middle of normal); CAM 163. DD's main symptom (and was main symptom at time of blood draw) is a vocal tic. The vocal tic accompanies compulsions as well as she has the vocal tic just sitting watching TV. I would say her OCD is mild right now with her tics being almost constant. Of course, we go from mild OCD to full blown OCD with any exposure to illness. Tics also increase in volume (and frequency) for a week or so after exposure to illness, then calm down to a soft vocal tic.

My dd's CAM was 163 - upper range. I just got her other titers back and the AntiL, AntiT and Dopamine 1 are all on the top (very top) of normal - Anti-Lysoganglioside 320, Anti-Tublin 1000, Dopamine 1 (2000). Dopamine 2 (8000) is in the middle of normal. Can someone help me understand what this means exactly? I would like to know how this contributes to PANDAS if anyone knows.

So far I have had no need for it here but my ped had mentioned that tamilfu should only be used in kids when really necessary because sometimes there could be big side effects... he said he only uses it if he thinks the benefits will outweight the possible side effects. He never said what the issues were though. The prescribed it to my son 1st day of symptoms. He was better within 24 hours. I tried to get it for my daughter, but since she was under the care of a different doctor, he would not give it to her. She came down with it a day later, and the urgent care doc gave it to her. She was also better within 24 hours, but the grunting tics had already started before the Tflu. They gave it to me as precaution and I never got flu.