my name is kim and i have a 10 year old little boy he has alps and i just found out he has the gene for traps.let me start from the begening when he was probably 6 mounths he was always sick and a lot of the time he ran feaver for no resion and there was a rash a lot of the time.dering this time he hadtummy achs and he had pain in diferent parts of his body.with allof that sayed it took till he was 5 to get the alps diegnoses.we have been folowed bye the nih sence and this last september he had a bad epasode and were at the nihfor 7 weeks with highwight blood counts and he hada feaver for 28 days and it would go down but never a way.dereing this time our doc had the romatoligy docs came in and my doc had them talktome about it .with all that sayed today my doc at home gets a letter from the romitory doc and it sayed that he had the gene.so what im asking is what i should do, my doc here dont know what it is and the letter dosnt say what they want us to do,im going to call our nih doc next week.idont know ifi should call the doc that sent the letter.
i have a few questions :
1. were is the best sight to find info
2.on one of the sights i found they talked about the eyes what hapens with them he has a probablm with blinking realy fast but thats all.
3.when they have feavers at night are they ok in the day.
4.does the all the diferentplaces with pain have tobe sever .
5.what kinda rash what caricteristics are there .
any input would be gratly apreciated.i thankwhith what i haveread he has it but i just need some one to talk toabout it, thanks
kim
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Just found out my son has the gene
2 replies
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- Newest first
- By moesmom
- Posted January 13, 2009 at 8:48 am
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Hi Kim. It's Heather, Jeremiah's mom. Don't know if you remember me or not since it's been eons since I've contacted you (sorry about that). Any how, I know they have a separate research study going on for TRAPS (we have met several people at the Inn with either TRAPS or HIDS). Some one, maybe even Jean, from the ALPS team, might be able to help you with that and point you in that direction.
He still has ALPS, though, right?
Just asking because there's another boy from carepages that was initially diagnosed with ALPS then was Dx'd with something else (can't remember what it was now). Any how, I don't think I helped much, but wanted to pass on the crumb of info I did have for you. Take care.
- By dsc
- Posted January 12, 2009 at 5:04 pm
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the main thing is to keep bringing him to the n.i.h hoapital the staff are great and tne main thing i can tell you is when you are not sure how your son is take him to the doctor and make sure you have a copy of what alps is you can get a short version on the nih web site make a few copies ,
the things to watch for are temp,sick ,but again do not hesitate to take him to the doctor or to the hospital and you must and i repeat you must make sure he takes his medication very very important .
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