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kcdc3

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Posts posted by kcdc3

  1. When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

     

    When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

     

    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.

  2. 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?

  3. 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.

  4. 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.

  5. If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

     

    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.

  6. Charlotte, NC

    James, Lee, MD Piedmont Neuropsychiatry, (he is the one who diagnosed it)

    James Nelson, MD Neurologist

     

    Chapel Hill

    Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo)

     

     

    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.

  7. 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.

     

    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.

  8. Are your children on Zithromax daily? I am going to switch from 1,000 mg. augmentin XR twice a day to Zithromax. My Pedi isn't sure of dose and we are not seeing a specialist until mid January. My son weighs 158 lbs. The 2,000 of augmentin hasn't helped. It has been 7 weeks.

     

    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.

  9. 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.

  10. 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.

  11. My 10 year old daughter just finished her 5th stint in the hospital for malnutrition. It all started at the end of August when she was sick with a sore throat and cold and then decided she no longer wanted to eat and began obessively weighing herself and jumping. When she was admitted to the hospital she was given a strep test with a positive result. They gave her 5 days of anitiobiotics and put her in an intense eating disorder program. This is a kid who has never cared about looks or weight - a funloving tomboy. She eventually began to eat and was sent home - only to have it happen again and again. At our wits end we tried a new team of doctors and a new hospital. She was insane with fear abour weight gain and had to be sedated because she was flipping out at the hospital about food - biting and scratching - I did not know this child!! She even had to have the tube down her nose because she refused to eat and her heart rate was so low and she had blue fingers and toes. She lost a total of 16 pouunds and did not need to lose a pound to begin with! This last team of doctors took the PANDAS possibility more seriuosly and began 2 weeks of antiobiotics and had all of us tested at home - even our dog. My 12 year old tested positive with no symptioms - she was a carrier. Both her and the dog went on antiobiotics because they were not able to say with certainty that he was not a carrier. She has been home for 2 weeks and is eating again and has put back on 10 lbs. I feel like our nightmare is finally ending but I fear it could come back if she gets infected again. I would love to hear from other parents whose kids have had an OCD PANDAS reaction around eating and weight gain. I would also love suggestions to help us know what to do if we supsect it is coming back. I don't have to tell any of you what ###### we have been through. Thank you so much!

     

    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.

  12. 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???

  13. 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!!

  14. My daughter just turned 3.

     

     

    Wow....really close to my two kids....I have two PANDAS boys..

     

    One (7) Cam score was 162

     

    Second son (10) Cam score 112

     

    Both were also in fairly good shape at time of draw.

     

    Younger son has more severe symptoms (ocd, tics, anxiety, etc)

     

    Older son only has tics

     

    How old is your daughter?

     

    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.

  15. Trg girl/kcdc3:

     

    Trg girl....Strep will make symptoms worse...so I'm assuming she's not on prophylactic abs? What ab (and dose and how much does she weigh) is she on right now?

    Would your doc let you do a 1-2 mo. trial of a strong high dose ab like augmentin or Azith?

     

    kcdc3...same question...is you dd on abs and which one?

     

    Where do you guys live? (did you already post this?) Maybe someone can rec. a doc.

     

    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.

  16. 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.

     

    The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so...

     

    But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired.

     

    So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia.

     

    Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation.

     

    Thanks in advance, all.

  17. 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?

  18. 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!

  19. 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.

  20. 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.

  21. I think there is a study out there showing where Tflu shortened the duration of flu symptoms by 1/2 a day. Also, they are supposedly refraining from using it, to keep the virus from becoming resistant (some docs, but some give it at first sign of sniffle supposedly). I'm not sure it had block buster capabilities to begin with. You can probably find a lot of that info fairly quickly. If you persue it, please share what you find.

     

     

    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.

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