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Request medical records


JMTho
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Hi all,

We have only considered PANDAS as a possibility for our ds (10) for the past 5 months; however, he has been sick with repeated strep and/or sinus infections for almost 3 years. We believed that the first strep infection had happened in 3rd grade (age 8). However, now that we are trying to explain to MDs when symptoms began and then when everything exploded, it occurred to me that requesting/having his entire medical chart (ER, clinic, lab tests, surgical/procedure reports) would help me develop a more accurate timeline of events.

 

Wow, were we surprised when it arrived! First strep tests were done at 9 months!! He'd had URI followed by 3 weeks of poor eating and intermittent vomiting. Strep was negative at that point, but they did treat with antibiotics for suspected sinus infection and he recovered. First confirmed strep was 1st grade! It was in first grade that we recall asking the classroom teacher about possible ADHD... he was so scattered and sometimes hyper. We had also noticed very poor drawing and writing in 1st and 2nd grades- had spoken to teachers about it at conferences. He was also consumed by separation anxiety and I almost quit volunteering at school because it was so awful when I had to leave! Thinking his first strep was in 3rd grade (and the explosion of horrible behaviors and rages), we didn't realize that the first behavioral issues had begun 2 years earlier.

 

Secondly, when we realized HIS first strep had happened so young, (and when we learned about other s/s of PANDAS), we suddenly recalled taking our older son (now 12) to the ER around age 4-5 for severe abdominal pain (mesenteric lymphadenitis on ultrasound- strep positive culture), and also the frequent urination at bedtime for over a month (lasting for 2 hours/night- every 3 minutes.) finally were referred to a urologist. He had also slept on our floor for months because of night terrors and separation issues (we bought "dreamcatchers" to catch the bad dreams... we had lavender "magical" air spray to chase the bad dreams away). He had compulsive shoe tying during sporting events (couldn't run the length of the basketball court without stopping in the middle to tie- (they didn't make velcro shoes for his size by 3rd grade, or we'd have tried that!), which made us smile and shake our heads (our cute, odd little guy), but didn't occur to us to be worried. We have 3 books on Asperger's Syndrome on our shelves, as we were noticing that he has mild social issues (cannot read body language, emotional feedback from others, hyperfocus (to the point of problems at times), rigid personality, and very concrete thinking. We used the advice in those books to help teach flexibility and social cues, but never sought professional help. More importantly, we had forgotten much of this and/or had never thought they were related in any way.

 

Hindsight is 20/20. So, as I'm reading posts from so many new families, my advice to you is formally request copies of all old medical records and begin to keep a file (or, if you are like us... a file DRAWER... the file is so large). Ask for a copy of every lab test, every procedure as they are done (usually they can mail it to you), and then yearly request medical records from the clinic/md offices (ie. MD notes). You will have to fill out release forms, and there may be a charge if the file is large (for copying and shipping), but it is worth it and will allow you to put together a more meaningful history/timeline. I now look back at all the clinic visits for my youngest son, in which they dismissed his illnesses as "viral" and wonder how many might have been missed strep. Those "viral rashes" that might have been missed scarlet fever. He has never presented with a reddened throat nor swollen glands, and only rarely a sore throat, so they have often only done swabs for GI symptoms (severe vomiting) at our request... only to find positive strep cultures. Once we recognized the pattern of symptoms as strep, we have always asked for culture; often, they did so only to satisfy the concerned parents, saying "I really don't think think this is strep" only to call us sheepishly with the positive results. Looking back at the clinic notes, it is possible that there were many missed strep infections, as his presentation is so typical each time and there were many visits with the typical s/s, but no strep test had been done. So... there is certainly a possibility of untreated strep infections when we now look back at this.

 

I wonder how many of us have had repeated, undiagnosed, untreated infections prior to the "sudden onset/exacerbation" that currently defines PANDAS?? Maybe the defining episode is not the first, but the first recognized as strep? I wonder if recognizing and treating the FIRST strep infection would prevent or decrease the severity of the cascade of events that takes us down this horrible path? See below (treating populationcohorts)

 

http://www.ispub.com/journal/the_internet_...atic_fever.html

 

Anyway, I have so appreciated listening and learning from everyone on this forum... sometimes we have felt so very alone through all of this, just knowing you are out there has been such a comfort; hopefully this can help someone just starting down this path...

 

jt

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Hi all,

We have only considered PANDAS as a possibility for our ds (10) for the past 5 months; however, he has been sick with repeated strep and/or sinus infections for almost 3 years. We believed that the first strep infection had happened in 3rd grade (age 8). However, now that we are trying to explain to MDs when symptoms began and then when everything exploded, it occurred to me that requesting/having his entire medical chart (ER, clinic, lab tests, surgical/procedure reports) would help me develop a more accurate timeline of events.

 

Wow, were we surprised when it arrived! First strep tests were done at 9 months!! He'd had URI followed by 3 weeks of poor eating and intermittent vomiting. Strep was negative at that point, but they did treat with antibiotics for suspected sinus infection and he recovered. First confirmed strep was 1st grade! It was in first grade that we recall asking the classroom teacher about possible ADHD... he was so scattered and sometimes hyper. We had also noticed very poor drawing and writing in 1st and 2nd grades- had spoken to teachers about it at conferences. He was also consumed by separation anxiety and I almost quit volunteering at school because it was so awful when I had to leave! Thinking his first strep was in 3rd grade (and the explosion of horrible behaviors and rages), we didn't realize that the first behavioral issues had begun 2 years earlier.

 

Secondly, when we realized HIS first strep had happened so young, (and when we learned about other s/s of PANDAS), we suddenly recalled taking our older son (now 12) to the ER around age 4-5 for severe abdominal pain (mesenteric lymphadenitis on ultrasound- strep positive culture), and also the frequent urination at bedtime for over a month (lasting for 2 hours/night- every 3 minutes.) finally were referred to a urologist. He had also slept on our floor for months because of night terrors and separation issues (we bought "dreamcatchers" to catch the bad dreams... we had lavender "magical" air spray to chase the bad dreams away). He had compulsive shoe tying during sporting events (couldn't run the length of the basketball court without stopping in the middle to tie- (they didn't make velcro shoes for his size by 3rd grade, or we'd have tried that!), which made us smile and shake our heads (our cute, odd little guy), but didn't occur to us to be worried. We have 3 books on Asperger's Syndrome on our shelves, as we were noticing that he has mild social issues (cannot read body language, emotional feedback from others, hyperfocus (to the point of problems at times), rigid personality, and very concrete thinking. We used the advice in those books to help teach flexibility and social cues, but never sought professional help. More importantly, we had forgotten much of this and/or had never thought they were related in any way.

 

Hindsight is 20/20. So, as I'm reading posts from so many new families, my advice to you is formally request copies of all old medical records and begin to keep a file (or, if you are like us... a file DRAWER... the file is so large). Ask for a copy of every lab test, every procedure as they are done (usually they can mail it to you), and then yearly request medical records from the clinic/md offices (ie. MD notes). You will have to fill out release forms, and there may be a charge if the file is large (for copying and shipping), but it is worth it and will allow you to put together a more meaningful history/timeline. I now look back at all the clinic visits for my youngest son, in which they dismissed his illnesses as "viral" and wonder how many might have been missed strep. Those "viral rashes" that might have been missed scarlet fever. He has never presented with a reddened throat nor swollen glands, and only rarely a sore throat, so they have often only done swabs for GI symptoms (severe vomiting) at our request... only to find positive strep cultures. Once we recognized the pattern of symptoms as strep, we have always asked for culture; often, they did so only to satisfy the concerned parents, saying "I really don't think think this is strep" only to call us sheepishly with the positive results. Looking back at the clinic notes, it is possible that there were many missed strep infections, as his presentation is so typical each time and there were many visits with the typical s/s, but no strep test had been done. So... there is certainly a possibility of untreated strep infections when we now look back at this.

 

I wonder how many of us have had repeated, undiagnosed, untreated infections prior to the "sudden onset/exacerbation" that currently defines PANDAS?? Maybe the defining episode is not the first, but the first recognized as strep? I wonder if recognizing and treating the FIRST strep infection would prevent or decrease the severity of the cascade of events that takes us down this horrible path? See below (treating populationcohorts)

 

http://www.ispub.com/journal/the_internet_...atic_fever.html

 

Anyway, I have so appreciated listening and learning from everyone on this forum... sometimes we have felt so very alone through all of this, just knowing you are out there has been such a comfort; hopefully this can help someone just starting down this path...

 

jt

 

 

Thanks for the info. This is a really good idea! My son is only 3 1/2 and his file is already much larger then mine at 36. Poor little thing!

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We did the same thing when we got our sons file. We didn't realize the length and amount of the past history , I think you get used to a norm with your child and then don't realize how different that is from "normal" until its in front of you. Very good suggestion, we do this now! It would have helped us out a lot to have been doing it the whole time!

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Just another bit of advice, any time your child has any bloodwork or other test, always ask for a copy of the results so you have it in case you need to consult with someone else.

 

I have a nice file of my son's health records from his ped too......only problem is nobody can read the handwriting..... :)

 

 

Faith

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I actually did the same last week, and was also surprised to notice that things started a lot earlier than I ever knew. I thought our PANDAS journey had started in Feb. 09 with a bad flu (later I realized my other son had had strep a week prior to all of us getting "the flu", so it probably was flu plus strep!).

I realized looking at the records that early in 2006 all of the following events took place in very close succesion

1) heart murmur first noted during yearly well-visit

2) we took him in for eye-blinking (it had actually started months prior to us bringing him in, but it would come on go)

3) swollen wrist (this also had been happening off and on until we finally were able to get him into the pediatrician while it was swollen)

I do believe all this was strep related, and it still makes me mad that the pediatrician dismissed it all.

At that point there weren't any market neurological/behavioral issues, although reading a recent post I can remember him being very sensitive to noise and covering his ears.

 

Yes, hindsight is always 20/20! I knew then what I know now... That's why it's so important to spread the word, so others will catch this earlier than we did.

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Just another bit of advice, any time your child has any bloodwork or other test, always ask for a copy of the results so you have it in case you need to consult with someone else.

 

I have a nice file of my son's health records from his ped too......only problem is nobody can read the handwriting..... :D

 

 

Faith

 

 

Faith,

When you ask for a copy of you child's labs - are you asking when they are doing them and asking the lab to send you a copy? This seems like such a simple thing- send me a copy, but the other day they gave me this HUGE runaround about getting a copy of the labs they were drawing. So now I have to go through the rigamaroll of going in later, signing their form then waiting for them to get around to sending them - pathetic ( I'm still waiting on one dr's office records and I mailed their request form in 3 months ago) I can't believe they won't just let me do it right on the spot.

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