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Finally a diagnosis! Now what?


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Hi,I am new to PANDAS and to a Fourm. Her is my story. 4/10 + strep. amoxil 10 days no big deal. 2 weeks later my DD knee swells over night. Ok see pedi put her on Keflex 2 weeks. Go for blood work ASO titer in the thousands. X ray neg. MRI neg. 4 weeks later knee still swollen and she turns into another child. My sweet girl is a emotional mess. We see Infectious Disease in June and she is diagnosed with Post Streotoccal Reactive Arthritis and PANDAS. Ok good we have a diagnosis. We did the full cardiac work up evey thing was fine there. We were told to give her Pen V K 250 twice a day for 6 months and then follow up. Ok so she is still emotional we blame not feeling well on it. Well then the PANDAS reall went into effect. Tics started she couldn't be away from me she moans like in pain,she can't stand the light at times, cant wear clothes that feel tight. the list goes on. We were able to see Psyc and he put her on 20 mg of celexa. In the mean time she is feeling worse so the ID doctor said when she feels like she is getting sick we up the Pen V K to 2 tabs 3 times a day for 10 days then go back to the regular dose. ok she improves. we have a great 3 weeks. still tics and moody but not as bad. Then all down hill again. Saw Neuro and they e

were not much help. Now its October and still at square one. Her knee did get better but she stll gets joint pain. We are seeing a Rheumatologist in November. WOw thats alot. so my question is does it sound like we are on the right path? Everyday when we wake up we have no idea what kind of day it will be. We walk on egg shells trying not to set her off. Need advice. Also should she be classified in school? she was a A student and her grades are going down. Fourth grade 9 years old. Also cant seem to make any friends since starting school. she is a difficult child to begin with. any info would be graet. I live in NJ so if you know of any good doctors i am all ears.

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Hello - Welcome. Wow! You've hit all the major PANDAS symptoms in one shot!! Yes - you are on the right track. Now you have to get your child to a PANDAS doc. Have you looked for underlying infections - esp mycoplasma and lyme in addition to the strep? Read through the forum and you will learn a great deal here. Welcome - we are sorry you have to be here but glad you found us.

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Hi

 

Sorry you have to be here. But welcome. And so good you have the diagnosis. In some ways (although it's probably arguable), that's one of the biggest battles.

 

See one of the docs below. I would also question the Celexa. SSRIs have been known to make things worse in PANDAS kids.

 

Kara

 

 

(856) 983-6675

Dr. Rosario Trifiletti, MD

246 N. Franklin Turnipke

Ramsey, NJ 07446

 

(201) 236-3876

rtif@neurokidsr.us

 

 

 

Dr. Denis Bouboulis

106 Noroton Ave.

Darien, CT. 06820

(203)655-9904

 

125 Strawberry Hill Ave.

Suite 101

Stamford, CT 06902

 

(203) 323-7744

http://www.advanced-allergy.com/

 

Dr. Elizabeth Latimer, MD

6420 Rockledge Drive

Suite 4920

Bethesda, MD 20817

 

 

 

 

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Oh my goodness your story is similar to mine (my topic is post-strep syndrome). Fyi, pnVK did not work for us. My son has fevers, major anxiety, swollen foot and elbow now so we finally saw our old PCP yesterday. He believes my my ds has PANDAS and had Rheumatic fever. He put my ds on Keflex 4 times daily right now. stronger antibiotics are better. Today my ds gets MRI but like you I think it will show nothing. Read my topic and if you want to pm me further I would gladly help.

 

So sorry to hear what you are going through.

Kim

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Welcome. If your doctor is willing to listen, ask him to switch the penicillin. Did you see improvement in behaviors/tics while on the Keflex? Ask if you can swicth to a higher dose Augmentin or Zithromax. Those are the 2 antibiotics that seem to help kids on here. Some have sucess with Keflex as well, but switching back to that depends if you saw any improvement the first time.

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Hi, I'm so sorry your family is going though this! I know it is all very confusing in the beginning, and you will get different advice from different people based on their experiences - all wanting to help you, but it adds to the confusion.

 

Anyway, here's my two cents. Because of the swollen knee and continuing joint pain on top of the psychiatric symptoms, I would find a Lyme-literate doctor and have them run labs for Lyme Disease and coinfections. Most of them will also look for chronic viruses, mold exposure, allergies, immune status, etc - anything that might be contributing to her illness. Its not necessarily as simple as "just strep" and so you need to rule out all these other things to make sure you are treating her with the right antibiotics/medications.

 

A number of parents on this forum, who originally believed their children had "just PANDAS" have now found that their kids (and some of the parents) have Lyme/coinfections. If you look into this now, you reduce the risk of wasting precious time with the wrong antibiotics.

 

If you go this route, make sure you go to an ILADS-trained doctor. You can get a referral to doctors in your area through the International Lyme and Associated Diseases Society (www.ilads.org). If you are interested in reading about Lyme and coinfections, a good book is "Cure Unnown" by Pamela Weintraub.

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She has been tested fot Lyme a few times and it is always neg. Maybe I will give Dr.T a try.

 

A negative Lyme test does not rule out Lyme, as the tests are so unreliable. Lyme Disease is a clinical diagnosis and needs to be made by a knowledgeable, experienced Lyme-literate MD.

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WElcome! Listen to these 3 podcasts (Dr. Latimer, Dr. Trifiletti, Dr. K.). http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348 I would start with the Dr. Latimer interview if you are short on time. You can even upload them into your ipod.

 

And a link to FAQ's

http://www.latitudes.org/forums/index.php?showtopic=6266

 

I consider anyone in the northeast with PANDAS to be relatively "lucky" since 3 of the "fav" docs on this forum are there: Dr. B, Dr. T., and Dr. Latimer!

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