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Discussion Starter · #1 ·
Okay guys I will be posting to two BB's but in this section in particular. As most of you know Eden was placed in hospital on Aug 6th for the last two years they were telling me she was hypoglcemic now they are saying they don't know what is wrong with her they had a nuero consult in and now we are waiting on a heart specialist. She is passing out two and three times a day. She sleeps most of the time. She has no stamena any more. No energy to run around. When she does run for more than ten minutes she has to come in and sleep for a couple of hours. she never wants to go out and play. She has a new bike that she won in June and has yet to go out and ride it. It was suggest to the doctor that maybe she has chronic fatigue syndrome but they are leaving that till last to see becasue they doctor has never heard of fainting with this syndrome before and she says it is rare in chilren. I told her that ibs is rampant in my family and this syndrome tends to run along with ibs althought eden is not ibs yet thank god. I said I was going to post to ask for help and she said any suggestions would not go astray alought her medical resident is connivced that chronic fatigue and ibs is in peoples heads. The question is do any of you have childrren with this and do any of you faint with this. When Eden gets tired and wants to sleep and does not go when she needs to she gets phyiscally sick this is something else we have noticed. Is this something you suffer from. It is urgent I get responses. I am in the medical library at the hoapital and have to depend on the BB for responses the computer will not allow me to check my email so please post to the board. Up until three months ago I had a active nine year old now all she does is sleep and she is sick help. This has been slowly happing over two years.Denise
 

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Denise, I am sorry you are going through this right now. There is nothing worse than the feeling of helplessness when it comes to your child. I was going to suggest taking her to John Hopkins, but I see you live in Canada. About the time I was going through puberty, I did have fainting spells in church. I don't recall having fatigue back then though. I have trouble being out in the heat for too long now though, as I get exhaustion easily and feel my heart is racing. I also have had the feeling of , dizziness and like I might black out upon arising, especially after the squating posistion. This has been since being pregnant for me, and the fatigue since then as well. Makes me think it is hormonal in nature, but haven't found anything there yet. I have heard in Europe some of their hormonal levels acceptable scales are different than ours and they treat what we would consider borderline. Someone recently posted something on POTS syndrome here and its possible to connection with CFS/FMS, and you might look into that (I am thinking it was Nina or starcatcher).I will pray that you and your doctors find some answers soon Denise. If you think they might be missing something, please seek a second opinion outside the facility presently treating her. It might be well worth it.M.
 

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Discussion Starter · #3 ·
Thanks moldie;The only problem is that because we are a small island we only have one childrens hospital here and I don't have the money to take here to the mainland it would involve close to 3 or 4 thousand dollars in total. I will look up that syndrome.denise
 
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Hi Denise, I hope this is not too late! I haven't been on the BB for awhile. I have CFS and I get blackouts, I do not get all the way to fainting, but it CAN happen with CFS. It is called Orthostatic Intollerance. I, like Moldie, have to be carefull coming out of a crouched position. When I am very fatigued I can even get the spins while laying in bed. I also get really sick if I don't stop and rest. My initial syptoms feel like I have the flu. If I push when that starts, I'll have hell to pay. I'll be in bed for days and that always comes with killer headaches. I sure hope this tidbit is helpful. Hugs for you and Eden.
I pray things are looking up DD
 
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Have you had the child tested for Mitral Valve Syndrome? Heart murmur? Ask them to use a Holter monitor. Do panic attacks run in your family? Marfan's Syndrome? Good luck and best wishesJudi
 

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I am so sorry about your daughter. My little granddaughter who will be 9 in December is also named Eden. I will be praying for you and your family and especially litle Eden. Our God is still the God of miracles. God Bless !
 

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Hey denise, did they ever find out what was wrong with Eden? I've had some times when I wasn't on the BB much, so I don't know if I missed it... I hope she is doing OK, and I'm curious as to whether they found out what was wrong.
 
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