posted
I apologize in advance for the length of this post. I hope you'll read it anyway! My daughter, who is now 12 years old was dx'd autistic at @ 3 1/2 years old. This is not a very usedful dx- a catchall for something neurological NOS. After reading the posts on this forum, especially the one on school and accomodations, I'm thinking that autism doesn't really account for most of my child's problems. But, that label gave the medical community an excuse to not investigate problems, which were all attributed to autism. Let me try to explain her history a bit- Allie was definitely developmentally delayed since early on- but I didn't recognize what I now believe to have been choreiform movements during infancy and toddlerhood. She had many ear and sinus infections, but strep tests were not performed until 10 years of age (at my request). I heard about PANDAS on an autism forum and researched. Some of the characteristics seemed to fit so I asked my new pediatrician (who is great and willing to investigate) to do a strep test. She was not symptomatic (and anyways, does not cooperate very well for exams) but tested positive. She was given a course of Keflex, which greatly improved her behaviors and, we thought at the time, got rid of the strep. FF 5 months- extreme behavior problems in school(she is in a special school)with no apparent triggers. Decided to see if she was sick-positive for strep. Behaviors resolved with shot of penicillan. 2 weeks later, behaviors returned and so did the strep. Well, this went on for the next 6 months. We decided to try a tonsillectomy, which was done at the end of June, this year. But a few days off the antibiotics- the behaviors return with a new twist- now she has devoloped severe photophobia with apparent headaches that seem to trigger meltdowns. The doctor prescribed valium, which seems to help alot. (We have tried a whole range of psych drugs, with little effect or adverse effects) The behaviors I'm talking about are severe rages with aggressive behaviors and self injurious behaviors. In hindsight- I can see that these always increased when she was ill. Sadly, they were attributed to her autism and "of course she's going to be more irritable when she's ill." I don't know of a single other autistic kid who have these to the extent and duration of my daughter. I'm digressing a little. She is functionally nonverbal, but had developed some speech before all this began. Its all gone now. Also, she had developed some fine motor development (like @ 3 yr old level) which has also regressed. Its like when she tries to write, the pencil just flies across the page. When you do hand over hand with her, you can feel her directing the movement, but without the restraint of a helper it goes wild. If that doesn't make sense, please ask- Ill try to clarify. Gross motor skills are better, but she is in constant motion and has these quirky, rhythmic dancing outbursts, that try as i might, I can't imitate. She has an unsteady gate and purposeful movements often seem exaggerated, or like she's straining to keep them under control. The dancing outbursts seem to relieve stress and I'll actually ask her to do it- like when she's getting restless in a doctors waiting room or something. Something I left out. When the behaviors returned after the tonsillectomy, she was put on another course of antibiotics- which did not resolve the photophobia and headaches. So a batch of blood tests were run- normal except high ASO titers- That's after almost a year of constant antibiotics- not just a maintenence dose. So, does this sound like it could be sydenham's? Doctor's are only minimally familiar with SC and then, only in a clinical- what science has studied way, so I'd sure appreciate the input from people who actually live with it.
Posts: 22 | From: arizona | Registered: Oct 2006
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posted
Hello there, We had a similar experience with our little boy, with regard to the austistic label. He fell ill at a very young age, 2.5 years, after an adeniodectomy, which was performed because of extremely bad snoring problems. Prior to this illness he was extremely advanced for his age in all areas and spoke beautifully. His illness began with extremely disturbed behaviour, withdrawal and loss of concentration, followed by neurological symptoms, including slurred speech, follwed by the loss of ability to speak at all. He also became severely obsessive compulsive. He had every test under the sun and saw several specialists before eventually being diagnosed with SC by someone who told us he had seen it mistaken for autism several times in very young children. He is taking a very long time to recover. He was diagnosed exactly 2 years ago and has only just the last couple of months begun to recover an obvious amount of control over the muscles in his face, which were pretty much paralysed. He also had hypotonia, which has also come back to normal in the last year. A lot of people who have seen him in the last couple of years have thought his behaviour to be autistic-like in lots of ways. His strep levels were still above normal almost 2 years after the op and after more than a year of twice daily penicillan. So, to kind of answer your question, yes, in my experience anyway, autism can be mistaken for SC.
Posts: 91 | From: Australia | Registered: Jan 2005
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I think your experience could be a case for my term, "Post-streptococcal Auto-immune Neurological Disorder Spectrum" or PANDS. While they do not present as a clear textbook case of SC or PANDAS, there definitely is a strep auto-immune component to the symptoms.
Wenwill
Posts: 153 | From: Pennsylvania, USA | Registered: Jan 2005
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posted
Thanks to both of you for your replies. I wonder if we'll ever get rid of the strep. Her behavior the last couple of days has been "streppy". But, with the tonsillectomy, how do we check for it now? She never seems to have the typical symptoms, no fever. Its hard to tell if she has a sore throat because of her communication problems and oral motor isn't great. She doesn't eat as much. What kind of doctor would diagnose SC or PANDAS? I know PANDAS isn't technically a dx(recognized by insurance), but it seems like they could just call it atypical SC. How can she recover if she can't get rid of the strep? How do you prevent yeast overgrowth when your kids are constantly on antibiotics? I truly appreciate your feedback- You guys are amazing.
Posts: 22 | From: arizona | Registered: Oct 2006
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Sorry to hear about your daughter. I am 25 years old and have had Sydenham's Chorea for 18 months with symptoms resolving very slowly. I am on penicillin daily and have been since diagnosis with strep levels only coming within the normal range now. I have a strep sereology blood test done every 3 months or so to see where it is at. I think most people on the forum take penicillin daily. I have also been prescribed Nilstatin 500mg twice daily and probiotics to prevent yeast/candida infections due to the long term antiobiotic therapy. I hope this can help a little. Ivana Xo
-------------------- Ivana_C Posts: 41 | From: Sydney, Australia | Registered: Oct 2005
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Hello again, We see a paediatric neurologist but the guy who originally diagnosed my son was 'just' a GP. A very good one though, I think, and I am so thankful that we wandered his way, otherwise we would still be trailing about looking for answers, I am sure. I would not expect a quick or instant diagnosis if you do go to a neurologist though. I think SC is a bit like Emperor's New Clothes in that no one is brave enough to say that that's what it is - unless someone else has already said it! On the subject of what Wenwill has written, we have been given 4 different/similar diagnoses over the past two years - strep/rheumatic fever, PANDAS, post-streptococcal syndrome and SC. I don't really care what they call it any more, as long as everyone agrees it's caused by strep. We have also seen a child psychiatrist for help with meds.
Posts: 91 | From: Australia | Registered: Jan 2005
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posted
My daughter, now 11, developed SC after an adenoidectomy just as syltomes son did. Does anyone think the strep is contracted during these kinds of surgeries? Also, now that my daughter is approacing puberty and is taking twice daily amoxicillin, should I have her on something to prevent yeast infections? She eats yogurt, but I don't have her on probiotics. How do you administer those? Are they taken hours away from the antibiotics? My daughter had SC episode at age 8. How common are recurrent episodes of this disease? Lots of questions, I know!
Posts: 5 | Registered: Sep 2006
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Hi Wenstan, Probiotics will be effective if she takes them at least two hours after the antibiotic. They come as either powder or capsules. Easy to take or add to stuff. Re your question about the adenoidectomy, we don't know if the infection was a post-op thing or if it was strep that caused the adenoids to get enlarged and infected in the first place; hence the snoring. Who can say?? All the best to you and your daughter. Sylvia.
Posts: 91 | From: Australia | Registered: Jan 2005
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Thank you Sylvia! I will get her started on the probiotics right away. And best of luck to you and your son, as well! God Bless!
Posts: 5 | Registered: Sep 2006
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Hi Wenstan, I take 500mg Nilstat capsule in the morning with the antiobiotics and 500mg at night along with 2x Prodophilus. This prevents any yeast infections and upset tummy I was getting from the long term antibiotic. I find I get reoccurcences when I do too much - although I have never got rid of it there have been periods where the movements where a lot less. If I get the flu it also sets me right off! Ivana XoXo
-------------------- Ivana_C Posts: 41 | From: Sydney, Australia | Registered: Oct 2005
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