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Need advice. Very worried.


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Hi Everyone. I am wondering if pandas is what is going on with my son. A brief timeline:

End of June he had a bad sore throat with white patches, fever, & headache. The throat culture was negative. The dr was even surprised.

Since then he had two itchy rashes that started on his face. Dr wasn't sure what it was. Said maybe it was poison ivy and we treated it with prednisone because it was near his eyes.

The last time he had this rash was 11 days ago. He also got the flumist when I brought him in for the rash. THe next day he had stomach aches and was just crazy. He was very emotional. He would tell me various things hurt and then he would freak out and cry and tell me that they don't. He has always been alittle anxious and a bit ocd about different ailments but this was just crazy. He also began a facial motor tic. All this stuff freaked me out big time because I had no idea what was wrong with him. I called the dr about the tic and she wanted to test him for strep. That was also negative. He did his for about 3-4 days and then it was just headaches and light sensitivity. So I started freaking out about brain tumors. The dr and neurologist are telling me he's fine. A Lyme test was done and that was neg and his cbc count was normal.for the past few days he has no symptoms, he's acting normal. Sometimes I see him touch the forehead in the same spot the tic is. I think he may still have a slight headache but I'm not positive. He's acting 100% normal. He is diagnosed intellectually disabled so getting accurate info out of him is a challenge. He looks pale to me with darker than normal circles under his eyes. My husband said he looks normal. I'm panicking because I think he may have had strep back at the end of June. I just don't understand how tonsils covered in white stuff isn't strep. So I'm worried he has an infection in him that needs to be treated. I cried to the drs and demanded they do more blood work. So we just did the strep ones, cbc, and something that checks inflammation. I didn't get those results yet. Am I just crazy? I feel like I'm in a nightmare and can't wake up because I simply just can't stop worrying about him. Do any of you think I should be doing anything else for him at this time, like Motrin in case there is inflammation going on? I wish he didn't look pale. Oh and he does have a bit of strawberry tongue, the nurse didnt seem alarmed by it.The drs pretty much said they don't know if they would treat him if the strep came back high... It depends how high and that point it may be a question for infectious disease people. I wish I could just pay a dr online to just give him antibiotics "just in case". Thanks for listening.

Thanks for reading.

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Getting the Strep tests done is a good first step. There are three that test for strep - not sure if he got them all but if not you could look into the others (my son came back high/positive for all). Another two that kids get a lot with PANS are mycoplasma and coxsackie. If it is high he needs to be treated you just need to find the right doctor. There is also a "pattern" to PANDAS immune systems - not sure exactly what it is but my doctor checked. The symptoms can be so varied I think the bloodwork is the right thing to do. In most states (if not all) you can request the bloodwork yourself also. I have also found some pediatricians know a lot about PANDAS and some don't - so it is good to get the right doctor.

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So you did some more blood work for strep titers recently and those haven't come back yet? What kind of Lyme test was done and with which lab? Lyme is notoriously difficult to test for.

 

You can give ibuprofen (Motrin, advil) for inflammation, that may help a bit but it definitely sounds like an infection. I hope you get your test results back soon.

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Lyme was done through Quest. I am not sure exactly what they checked for. The recent CBC and strep labs haven't come back yet. How long do the strep labs usually take? When they come back I will ask more details about the Lyme too. I guess I should just call and get an appt with Dr. Bouboulis. The neurologist ordered an MRI to put my mind at ease. But he would have to be sedated. Do you guys think that's necessary at this point?

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stuff at dr. B's office can be off putting. Not sure why. just insist that you want to see dr B and try to make an apt with him for your child.

The logic with blood tests is to rule out that your PANDAS child is reacting to somone else's germs at home. You can also say that you all will get tested with your regular drs.

don't give up!

Edited by pr40
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I'm surprised that you even got that much of a response from Dr B's office. If people weren't so desperate for help, I suspect he wouldn't get any business because his staff is incredibly rude. My 8 yr old was literally starving, would go weeks a a time without taking a bite of food for fear of choking, and they wouldn't consider her as a priority patient- I was given a nasty retort, and put on a 5 month waiting list :( I realize that his office is busy, but I had enough stress in my life already, and really didn't need to deal with any nastiness! I'm going to pm you with info for a great CT doctor. Good luck!

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If you look in my siggie you will see a list of what infections my kiddo is positive for and these are not uncommon in PANDAS/PANS kids. My kiddo has never had elevated Anti-Dnase or ASO titers either since she is immune comprimised. Those numbers are helpful for some, but not the complete picture for othes.

 

Hope this helps some:

 

CONNECTICUT

  • Dr. Steven Karashik, PsyD, MS
    Psychologist
    203-633-4666
    Ridgefield, CT
  • Dr. Nancy O’Hara
    Pediatrician/Integrative medicine
    203-834-2813
    Wilton, CT
  • Dr. Gail Szakacs
    Internal Medicine/Integrative Medicine
    203-834-2813
    Wilton, CT
  • Dr. Roseann Capanna-Hodge, Ed.D., LPC, BCN, LLC
    Educational Psychologist and Neurofeedback Practitioner
    203-438-4848
    Ridgefield, CT
  • Dr. Tom Moorcroft, DO
    Osteopathic and Integrative Medicine
    860-438-7096
    Berlin, CT
  • Dr. James Leckman (Leading PANDAS Physician)
    Neison Harris Professor in the Yale Child Study Center Professor of Pediatrics & Psychiatry
    203-785-5880
    New Haven, CT

http://pandasnetwork.org/resources/providers/provider-list/#CONNECTICUT

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Mayzoo, Dr L is a knowledgeable and nice man, but unfortunately isn't very helpful in regard to treatment :( he is currently involved in research projects but doesn't see patients himself as far as I know, unless he's involved in a clinical trial. Also, his colleagues at Yale are not open to discussions on Pandas and Pans. They told me that they wouldn't dispute it, but wouldn't acknowledge it or treat it either. They told me that my daughter had an "anxiety disorder and ocd" and had no explanation to offer in regard to the fact that prior to mid October 2013 she was perfectly fine, and didn't have any of these issues. I wish I hadn't wasted so much time there, but I had nowhere else to turn at the time. They kept pushing SSRI's and subtly conveyed that they didn't agree with the abx treatment she was receiving, I am so happy that I resisted the lure of SSRI's for my 8 year old and her developing brain. She's doing much better now, and never had psych meds ;)

 

Dr. M is excellent, reachable, understanding and incredibly knowledgable. He also isn't an alarmist, and will tell you what tests are necessary and which ones can wait if you have financial concerns, and goes on the premiss that we treat symptoms and patients, not necessarily test results.

 

Dr. B's staff is rude, and regardless of his abilities, Just based on that alone I wouldn't go there unless I had no alternative. IMO staff speaks volumes about a physician.

 

Quest lab Lyme tests are very unreliable at best.

 

If your son was/is experiencing tics and/or neuro psych symptoms after an illness, I would seek treatment ASAP.

 

How old is he?

 

Best wishes....

Edited by beerae22
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