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hi everyone,have anyone here who had a child that has been diagnosed after going to see NIH program,or does someone have a story for my how this goes over there!my doughter is getting worse and i need to find a diagnose asap.
I must have missed your other post about your daughter. Your not alone in the search for answers to what is going on with your child. There are many who are going through the same thing. We have an e-mail support group, come and talk with us. There is so much information sharing going on.
http://health.groups.yahoo.com/group/undiagnosed_syndromes/
Such as the New Undiagnosed Diseases Program, which is at the NIH. We will be going to this program just not sure when. http://rarediseases.info.nih.gov/undiagnosis
You may also find this website of interest.
www.undiagnosed-us.org
Amy Clugston
amyclugston@undiagnosed-usa.org
SWAN USA
I know how frustrating it can be not to have a "name" for the illness that your child suffers from - it took us almost 6 years - but then when I voiced this concern to Dr. Kastner at the NIH he reminded me that to label her with something that wasn't right would be more detremental to her health than to just treat the symptoms for now and obtain the correct diagnosis - even if we never did - it would be better than giving her illness a "name" only to be wrong because there are diseases outthere that have not yet to be discovered and our children may be the answer for themselves and so many others. I'm sorry for rambling - I just know your pain and frustration first hand...Take Care.
If your doctors cannot diagnose your child they should send her to some major research facility where they would have a team of specialist to examine her in an effort to pin point something they could hopefully treat. Number one research facility would probably be the Mayo Clinic Mayo Clinic in Arizona, Florida, Minnesota. Minnesota has I believe the largest and most medically staffed facility. You can check on this or ask your doctors about the Mayo Clinic. Ask your doctor what and where they would suggest..... There are many other University research centers around the U.S. Maybe you have one close to you that your doctors could send you to. Tell your doctors that this is what you want them to help you do..... They will understand.
Don't allow your doctors to drag anything out where the health and welfare of your child is concerned. If her symptoms are getting worse in spite of their treatments they should refer you to another physician or facility of physicians and logically some place where major research is being done. Most major state Universities have medical research programs. One of these is where you need to be getting your daughter examined. Don't waste precious time if you are not currently getting the help you need and answers you would like to have. Trust your doctors as long as you are getting answers and positive results from treatments they prescribe.
May God bless and be with your daughter and you to guide you through this...
Nikki,
For us it's not just a name that we are looking for rather an understanding of what is going on. My daughter has so many pieces to her all of which don't make any sense. And in some cases the answers are out there just the people with the answers aren't the ones we are seeing. It is hard not understanding what is going on with a child. When we are only able to help in some degree but are missing some very important information that may help us help them.
Amy
I apologize, I didn't mean for it to sound like you wanted only a name. Yes, an understanding is needed too - a reason. I have looked at Gabby's illness and life as a "puzzle" (my husband's analogy actually) and when something clicks in or someone finally agrees with us about something he will say "well, there's another puzzle to the big picture - maybe it will come entirely into view one day". In my personal opinion there are many children out there that could help our children too...but so many doctors, especially in small towns (such as ours) that when they can't explain something it's automatically a "virus". They had such a difficult time believing that our child would have a rare disease - I remember how frustrating it was - still is. She does not fit the genetic criteria for behcet's at all. But we are the parents that refuse to take no for an answer and still persist. Nobody knows our children better than we do - I believe we are all blessed with maternal instincts and we need to listen to them. I know over the course of her life thus far I have offended many medical professionals and have researched much on my own. There are still MANY unanswered questions to us too - and many frustrations with the NIH and their physicians. My husband reminds me that they are still a government run facility. lol Take care and God Bless...
ragna
NIH is not that unique response for alls rare deceseas.....me are reject that some one because that are completed.......only can suggest you be faith..and pray.....sure are another places to go..i really understand you..but contiunusly the life proub us....only figth....
God Bless you
Ragna:
thanks for your beauty answer...i am pray for you also.....do you try cuba?, i consult there and until dont answer me how many cost me one treatment....if you want know....cubamagica@cubamagica.com, if you need i can translated for you any do you want.
God Bless you, and happy holidays.........enjoy that days in family and try to forget the troubles...difficult thing..i know....but live the moments.....
Kinds regards
Andrea
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