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In the beginning of Dec. 2011, my 3 year old DD was diagnosed with Rheumatic Fever. three week before the diagnosis, we had taken her to the dr. due to what we thought was pink eye (she had no fever, no complaints of pain, eating & drinking normally). The doctor noted a red, pus filled throat (did not do a strep swab), and prescribed amoxicillin for seven days. On the last day of antibiotics, my daughter came home and was not using her hand. She told me she fell on a car at daycare while playing - within two hours, her wrist was red, hot, swollen - I took her to er thinking she may have fractured it. They did xrays - no fracture. Sent home - on the way home, she refused to use her legs, no bending her elbows. By the time we got home (10 minutes later), her stomach, back and armpits were covered in welts. Back to the er - told allergic reaction. The red, hot, swollen joints migrated, and she had extreme skin sensitivity. Fever started and lasted 8 days, severe lethargy. ASOT came back 400, CRP was 96, ESR 25. Diagnosis RF - given proph. pen v BID until 18 years of age to protect her heart.

 

Come January, hallucinations, clumsiness, regressive behavior (poop throwing, tantrums, no impulse control, baby talk), and raging and clinical defiance. Pediatrician discusses chorea - monitoring continues....

 

Things slowwwwwly improve and by end of March 2012, we are having more good days than bad in a week. Then over spring break, she is extra tired and has serious black bags under her eyes for three days - she complains of chest pain while playing. Thinking it was her heart, we go to dr. While waiting she spikes a fever and we are sent to er (most dr.'s here don't know what to do with her as they have never seen RF). Her blood O2 is very low, given oxygen, advil, bloodwork. Told it looks like a virus, no worries.

 

 

Within hours of the fever starting, she lost it. Any gain we made over the past three months disappeared. She became aggressive, defiant, safety issues emerge (running into traffic). Confesses profusely, and worried about germs (which she has never done before). In her bad times, her pupils are dilated and her body is warm (though will not register a fever, just obviously warm). ESR (which was down a bit) goes back up to 16, CRP normal. They redid the ASOT (which had gone down to 200 at end of Jan), but we are waiting for results.

Her kidney function is impaired (creatinine and BUN above normal).

 

I am at my wit's end - the doctors who see her infer that "her behavior is okay" - they see her for a total of 15 minutes in the room! I offered for them to come to my house if he really wants to see her in her "natural" environment. How could she have gone so far backwards? I thought the pen v was to keep this from happening? Where is my daughter? (we had hints of her in March)

 

My question to anyone - chorea vs. pandas? Does anyone here have any experience or information? If I hear "this is just so rare" one more time, I think I might scream!!!

 

Thanks in advance for anything - I have thoroughly gone through this site and there is a great level of depth and experience here, which is reassuring as it seems we are in shooting in the dark right now.

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Hi, JunkyardJean (cool user name!):

 

Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS.

 

Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthritis, glomerulonephritis, etc.) are part of a spectrum of related disorders. This is what several PANDAS specialists told us over the past 5 years. Our son didn't fit neatly into one diagnosis and seemed to fall somewhere between SC and PANDAS. Some researchers even suspect that SC and PANDAS are just different manifestations of the same basic disease, not completely distinct disorders.

 

From our own painful experience, though, I'd suggest the following.

 

  • Don't worry too much about the exact diagnosis, but pursue treatment aggressively until you dd is back to baseline. When our ds was originally diagnosed with SC, we made the mistake of just accepting his symptoms and waiting for a miracle to occur because the medical literature said that SC was "self-limited," meaning that it would (supposedly) spontaneously resolve in 9 months to 2 years. While we waited for that miracle, our ds got sicker and the autoimmune attack on his brain continued. MAJOR lesson learned on our part!
  • Don't spend too much time trying to find a knowledgeable, sympathetic local doc (if you don't already have one you trust). It's certainly a big advantage to have a local doc like this... but we wasted far too much time searching for local support after our original diagnosing doc passed away. If local docs aren't willing / able to help, find an expert, even if that means traveling out of state, and continue the search for a local doc afterward. The expert's diagnosis may even aid you in convincing a local doc to help.
  • I know this is all terrifying and overwhelming right now... but the Rheumatic Fever diagnosis (even if it's not the complete answer) might actually be an advantage in getting treatment for your dd. The official medical "standard of care" for RF is long-term abx prophylaxis until adulthood. For those of us who wound up with a PANDAS diagnosis, we often had to beg and plead endlessly - or go from doc to doc - to try to get abx for our kids. For our ds, the long-term abx (augmentin XR in our case) have been crucial to avoiding further exacerbations and allowing him to heal.

 

Is your dd still on the abx? Which one, and what dose? Many on this forum have had to try a series of abx (and doses) before finding the one (or combo) that did the trick for their child. For our ds, prophylactic doses didn't cut it - he needed a full treatment dose, long-term, to make progress.

 

BTW - our ds was originally put on amoxicillin, too. It might have kept things from getting worse but wasn't sufficient to let him get better. We needed the augmentin XR for that. Amoxicillin and penicillin seem to have a pretty high failure rate for kids on this forum.

 

Hang in there. With proper treatment, your dd will get better. PANDAS/PANS is becoming more accepted, getting more press, and treatment options are expanding. There is much cause for optimism for all our kids!

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Hi, JunkyardJean (cool user name!):

 

Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS.

 

Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthritis, glomerulonephritis, etc.) are part of a spectrum of related disorders. This is what several PANDAS specialists told us over the past 5 years. Our son didn't fit neatly into one diagnosis and seemed to fall somewhere between SC and PANDAS. Some researchers even suspect that SC and PANDAS are just different manifestations of the same basic disease, not completely distinct disorders.

 

From our own painful experience, though, I'd suggest the following.

 

  • Don't worry too much about the exact diagnosis, but pursue treatment aggressively until you dd is back to baseline. When our ds was originally diagnosed with SC, we made the mistake of just accepting his symptoms and waiting for a miracle to occur because the medical literature said that SC was "self-limited," meaning that it would (supposedly) spontaneously resolve in 9 months to 2 years. While we waited for that miracle, our ds got sicker and the autoimmune attack on his brain continued. MAJOR lesson learned on our part!
  • Don't spend too much time trying to find a knowledgeable, sympathetic local doc (if you don't already have one you trust). It's certainly a big advantage to have a local doc like this... but we wasted far too much time searching for local support after our original diagnosing doc passed away. If local docs aren't willing / able to help, find an expert, even if that means traveling out of state, and continue the search for a local doc afterward. The expert's diagnosis may even aid you in convincing a local doc to help.
  • I know this is all terrifying and overwhelming right now... but the Rheumatic Fever diagnosis (even if it's not the complete answer) might actually be an advantage in getting treatment for your dd. The official medical "standard of care" for RF is long-term abx prophylaxis until adulthood. For those of us who wound up with a PANDAS diagnosis, we often had to beg and plead endlessly - or go from doc to doc - to try to get abx for our kids. For our ds, the long-term abx (augmentin XR in our case) have been crucial to avoiding further exacerbations and allowing him to heal.

 

Is your dd still on the abx? Which one, and what dose? Many on this forum have had to try a series of abx (and doses) before finding the one (or combo) that did the trick for their child. For our ds, prophylactic doses didn't cut it - he needed a full treatment dose, long-term, to make progress.

 

BTW - our ds was originally put on amoxicillin, too. It might have kept things from getting worse but wasn't sufficient to let him get better. We needed the augmentin XR for that. Amoxicillin and penicillin seem to have a pretty high failure rate for kids on this forum.

 

Hang in there. With proper treatment, your dd will get better. PANDAS/PANS is becoming more accepted, getting more press, and treatment options are expanding. There is much cause for optimism for all our kids!

 

Very well said. The only thing I would add is that the official standard of care for ARF is also IVIG and/or PEX, but if PANDAS is diagnosed, it will be more difficult to get that. I would suggest you see Dr. L. if you can get in to see her, if you can't find a local doc to take it to the next level (again, don't spend to much time doing that, and in the meantime, get the appointment for Dr. L.) She is a neurologist, and knows all the standards of care for all these horrible disorders. Once you have the appointment with her, you might be able to get on a cancellation list (I don't know if she's doing that now, but it's possible,) or call in every day and see if anyone has cancelled (that's if you can get there in a day's notice.)

 

I'm glad you found our forum, because all these parents have been there, and we feel your pain.

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Thanks so much for sharing your wisdom - I live in Manitoba, Canada in a rural area and it has been hard to find medical people to help. I thought it was just the "ruralness", but after spending hours on this forum reading posts going way back, it sounds like the medical community at large is struggling to agree to terms...

 

My dd is on penicillin V BID until she is 18 to help safeguard her heart & kidneys. They told us that only strep would be dangerous to her (and the pen v would be a strong protection), but after what we experienced over spring break (which does not look like it was strep infection), I am almost terrified to let her out of the house. The world now looks full of germs - and if we are going to have complete backwards spiral each time she is sick with anything, maybe a bubble is in order :)

 

I did not know that the standard of care for ARF was IVIG - the docs keep telling us this will resolve itself and wait it out - they seem to only be concerned with her heart and kidneys (with some inference that my parenting can be picked up a bit - really?????). I am not convinced that this is going resolve on its own anymore - the behavior changes happen too fast, and too severe. Thank you Worried Dad for sharing your advice on "waiting it out" - your story sounded all too familiar....

 

We are meeting with a Naturopathic doctor on monday to hear her report and treatment plan, then we see our family dr on Tuesday, then the ped on Wed. It's time for my mama bear to come out some more and do some serious advocacy to see if I can get anywhere.

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Jean --

 

Perhaps it would assist your advocacy if you had some peer-reviewed papers in hand, as well, if you haven't provided them with that back-up already. On the pinned threads here, there are tons of links to papers by some of the leading practitioners and researchers. Many of us here have gathered an imposing binder-full of stuff to back up our concerns and questions, just in the event they are more likely to trust us parents less than a fancy medical journal article. <_<

 

If you need some help gathering info, feel free to PM me; I have an impressive PDF library, if I do say so, myself! :D

 

All the best!

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Hi, JunkyardJean (cool user name!):

 

Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS.

 

Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthritis, glomerulonephritis, etc.) are part of a spectrum of related disorders. This is what several PANDAS specialists told us over the past 5 years. Our son didn't fit neatly into one diagnosis and seemed to fall somewhere between SC and PANDAS. Some researchers even suspect that SC and PANDAS are just different manifestations of the same basic disease, not completely distinct disorders.

 

From our own painful experience, though, I'd suggest the following.

 

  • Don't worry too much about the exact diagnosis, but pursue treatment aggressively until you dd is back to baseline. When our ds was originally diagnosed with SC, we made the mistake of just accepting his symptoms and waiting for a miracle to occur because the medical literature said that SC was "self-limited," meaning that it would (supposedly) spontaneously resolve in 9 months to 2 years. While we waited for that miracle, our ds got sicker and the autoimmune attack on his brain continued. MAJOR lesson learned on our part!
  • Don't spend too much time trying to find a knowledgeable, sympathetic local doc (if you don't already have one you trust). It's certainly a big advantage to have a local doc like this... but we wasted far too much time searching for local support after our original diagnosing doc passed away. If local docs aren't willing / able to help, find an expert, even if that means traveling out of state, and continue the search for a local doc afterward. The expert's diagnosis may even aid you in convincing a local doc to help.
  • I know this is all terrifying and overwhelming right now... but the Rheumatic Fever diagnosis (even if it's not the complete answer) might actually be an advantage in getting treatment for your dd. The official medical "standard of care" for RF is long-term abx prophylaxis until adulthood. For those of us who wound up with a PANDAS diagnosis, we often had to beg and plead endlessly - or go from doc to doc - to try to get abx for our kids. For our ds, the long-term abx (augmentin XR in our case) have been crucial to avoiding further exacerbations and allowing him to heal.

 

Is your dd still on the abx? Which one, and what dose? Many on this forum have had to try a series of abx (and doses) before finding the one (or combo) that did the trick for their child. For our ds, prophylactic doses didn't cut it - he needed a full treatment dose, long-term, to make progress.

 

BTW - our ds was originally put on amoxicillin, too. It might have kept things from getting worse but wasn't sufficient to let him get better. We needed the augmentin XR for that. Amoxicillin and penicillin seem to have a pretty high failure rate for kids on this forum.

 

Hang in there. With proper treatment, your dd will get better. PANDAS/PANS is becoming more accepted, getting more press, and treatment options are expanding. There is much cause for optimism for all our kids!

 

Very well said. The only thing I would add is that the official standard of care for ARF is also IVIG and/or PEX, but if PANDAS is diagnosed, it will be more difficult to get that. I would suggest you see Dr. L. if you can get in to see her, if you can't find a local doc to take it to the next level (again, don't spend to much time doing that, and in the meantime, get the appointment for Dr. L.) She is a neurologist, and knows all the standards of care for all these horrible disorders. Once you have the appointment with her, you might be able to get on a cancellation list (I don't know if she's doing that now, but it's possible,) or call in every day and see if anyone has cancelled (that's if you can get there in a day's notice.)

 

I'm glad you found our forum, because all these parents have been there, and we feel your pain.

 

I just noted in your next post that she is now "just barely" 4. I would call the NIH, and see if she can get into the study. If she qualifies, they pay all expenses, and do all the tests, etc. Alternatively, being in Canada, will they do IVIG or PEX, given the fact that it is ARF? Do you think your dr might consult with the NIH or someone who specializes in ARF? What most of us have found is that the abx just reaches a point where it doesn't do the entire job anymore, and she may need more than that (like IVIG or PEX.)

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We had RF and PANDAS - two kids, different manifestations. We have taken the road less travelled possibly. As my youngest who developed PANDAS seemed to become extreem after antibiotics we have decided to go with diet(GAPS) and stay away from antibiotics and are now using vitaminC(whatever dose required with bowel tolerance) to manage all ongoing infections. We are getting better and hanging tight with this protocol.

 

Our pediatrician was completely out to lunch-also canada. Will eventually get back to someone so we can at least get some testing and support along the way. Our best support has been our GP and naturopath.

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Has she had cardiology work up?? Echocardiogram to check heart valves and what not. If not, with complaints of chest pain and being tired etc- she definitely needs one. Complaints of chest pain in child so young is most unusual.With BUN and Creat being elevated- I would insist on Nephrology work up. RF requires coordination of many specialists in child so young to prevent potential, serious, life long complications.

 

Videotape behavior so docs can see what you are going through. Multiple short snippets of tantrums, meltdowns, confessing behavior- anything that gives multiple different neuro psych symptoms that need to be put together for whole picture of what you are dealing with.

 

My thoughts are with you- this is a medical illness with neuropsych symptoms- docs need to treat the medical disease to get to the neuropsych issues. I don't know what the naturopathic MD's do in Canada?? While, they may be able to give some good supplemental advice- I would not entirely abandon conventional medicine, at this point. Sounds as if you need larger medical center with greater specialties and more knowledge of SC/ARF than your rural area is able to provide??? Have they considered course of IV antibiotics- that may be one option to arrest this in its tracks?

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They have done several heart tracings of rhythyms and listen to no end - because nothing is indicated there, they have not done ultrasound (although I may be asking more forcefully on Wed). The kidney blookwork just came back last week so I have not had a chance to speak to either doc on their thoughts there (her specific gravity in urine sample is also very, very low - she's peeing non stop. thankfully, no protein in urine).

 

We saw the naturopathic doctor for initial interview/assessment last week, and report of findings today. Based on labs I brought, plus ones she did, Naturopath says dd is in serious trouble, especially kidneys. She is SUPER wonderful and connected extremely well with dd, which is a huge bonus. She is willing to do team work with family doc & ped, if they are game as well. We started an "intensive, intensive" schedule of constitional hydrotherapy, plus slowwwwwly implementing diet changes as to not overwhelm her body (she loved the banana/spinach/flax smoothie today boy!!). The focus is on her gut, and getting her immune response to relax and hopefully not cause any more damage to any organs. We are still continuing with the pen v.

 

 

We see family doc tomorrow, then ped on Wed - I will be letting them know she is now on board (I'm not sure how they will feel about it though...). Hopefully we can continue to grow on this burst of good energy we were able to receive with Naturopath - it was nice to finally hear a professional say "there's something we can try" (no guarantee to cure, but something to try). Up until now, we get a lot of blank looks.....and even statements on how there is nothing they can do - RF just has to run its course and whatever damage is done is done.

 

For me, at least in my surface psychology, I feel better that we are at least trying something????? I also sent Dr. K an email, just to see what insight he may have offer.

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They have done several heart tracings of rhythyms and listen to no end - because nothing is indicated there, they have not done ultrasound (although I may be asking more forcefully on Wed). The kidney blookwork just came back last week so I have not had a chance to speak to either doc on their thoughts there (her specific gravity in urine sample is also very, very low - she's peeing non stop. thankfully, no protein in urine).

 

We saw the naturopathic doctor for initial interview/assessment last week, and report of findings today. Based on labs I brought, plus ones she did, Naturopath says dd is in serious trouble, especially kidneys. She is SUPER wonderful and connected extremely well with dd, which is a huge bonus. She is willing to do team work with family doc & ped, if they are game as well. We started an "intensive, intensive" schedule of constitional hydrotherapy, plus slowwwwwly implementing diet changes as to not overwhelm her body (she loved the banana/spinach/flax smoothie today boy!!). The focus is on her gut, and getting her immune response to relax and hopefully not cause any more damage to any organs. We are still continuing with the pen v.

 

 

We see family doc tomorrow, then ped on Wed - I will be letting them know she is now on board (I'm not sure how they will feel about it though...). Hopefully we can continue to grow on this burst of good energy we were able to receive with Naturopath - it was nice to finally hear a professional say "there's something we can try" (no guarantee to cure, but something to try). Up until now, we get a lot of blank looks.....and even statements on how there is nothing they can do - RF just has to run its course and whatever damage is done is done.

 

For me, at least in my surface psychology, I feel better that we are at least trying something????? I also sent Dr. K an email, just to see what insight he may have offer.

 

Sounds as if you are on the right path and still in diagnostic mode for appropriate treatment. Yes, I would insist on Echo and appropriate kidney follow up. Those organs are the ones most sensitive to to effects of RF complications, as well as, the brain giving the neuropsych symptoms.

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