Has anyone ever gone to a diagnostician (sp?)

[Only me]

We are getting so desperate about my dd. I think we are going to look into taking her to a diagnostic doctor. We have gone to her pediatrician, sleep specialist, neurologist, psychiatrist, therapist, endocrinologist and chiropractic neurologist and no one has been able to help with her insomnia.

 

The chiropractic neurologist tested her and found out that she is gluten intolerant but she has been GF for 2 months without any improvement. He says that it could take up to 8 months but my gut feeling is that it is more than just the gluten that is causing the problem. She has had numerous blood tests, MRI, etc. The endocrinologist says that her cortisol levels are peaking at the wrong time but didn't give us any advice. We have tried everything we can think of sleep meds, herbal remedies, supplements, creams, sleep CDs, exercise, diet and nothing will help her. Tonight she was in tears because she is so miserable. She just wants to sleep. Even when she is "sleeping" she doesn't feel like she is ever fully asleep. The sleep study showed this too. Twenty times an hour her brain would go back into alpha waves.

 

The sleep specialist just wants to prescribe more sleep meds. None of them worked and all had bad side effects. This is supposed to be one of the best sleep specialists in our area but she hasn't been able to help.

 

It's also strange because she also seems to still be having trouble with her head. She got a minor concussion (about a year after the insomnia started to get worse) so we know that the concussion didn't cause the insomnia. The chiropractic neurologist says that since the gluten caused inflammation in her brain the brain was already compromised and that is why the concussion caused her so many problems. Even though the CT was normal it still worries me because that area on her head seems to be so sensitive and the bump never went away. She was getting daily headaches back in August, September and October but they finally went away. A few weeks ago her head started hurting again in the same area and she has headaches again. Last night she hit her head again in the same area and the bump is more pronounced and she has a headache again today.

 

I'm seriously thinking about taking dd to someplace like Mayo but I'm not even sure if they would be able to help her. Where can I find a doctor like Dr. House? I really need someone who will just put all the puzzle pieces together.

[sunshine]

Wow. That is a huge burden on your heart. I am so sorry. I would take her to a well known children's hospital, where they only treat children. I am not sure which ones are the best but there is someplace. Don't give up just keep looking until you have an answer that you believe in.:grouphug::grouphug::grouphug:

[Paz]

This may be a start? This doctor is amazing and brilliant. He treats mostly Chronic Fatigue Syndrome but many of these patients have sleep disorders so he has experience with that. He treated my brother who had gone weeks without sleeping. Even if they are unable to see your dd, they may have some recommendations.

 

http://cheneyclinic.com/prospective-patients/become-a-patient

[Paz]

Here is also a link about how he treats sleep disturbances:

 

http://cheneyclinic.com/chronic-fatigue-syndrome/treatment

[Harriet Vane]

:grouphug:

[Jan in SC]

Johns Hopkins

 

Do you live near there?

[Perry]

I would go to Mayo if I were in your situation. I think the team approach they use would be very helpful.

 

I'd also make sure she's getting some exercise every day. If she isn't an exerciser, start easy, like walking 15 minutes per day.

[littlebug42]

I would do some research and find out where the best doctors reside for issues like this and get her there as soon as I could. I have had to do this for my daughter and I drive her 6 hours one way to her orthopedist because I was just tired of dealing with the local docs who did not know what they were doing when it came to her issues. I took her to one of the best doctors in the world for her condition and I do not regret a second of it. :grouphug:

[KidsHappen]

As you know, I really feel for your dd and I really wish I had some advice that would help. I have many health problems and I honestly feel that the insomnia is at the center of everything. I can tell that everything gets worse the less sleep I get. I am already at the maxiumum amount of sleep meds and I am still not sleeping through the night. I am tired all the time and I just don't have the energy to tackle the problem. I would try every possible route and do everything in your power to try and get some answers and relief for her. Wish both you and her the best of luck in resolving this. :grouphug:

[TravelingChris]

I am seconding the recommendation to Johns Hopkins. That was were our dd who has a very rare condition (about 170 cases worldwide ever) was tentatively diagnosed but even better treated and is better. SHe is seen at the Kennedy Krieger Institute but I also know another woman with a very rare eye condition that was diagnosed at another clinic of theirs. I further know that they have diagnostic people in many areas. We went there with no referral, just our self referral. They were wonderful.

[Denise in Florida]

:grouphug: Sending prayers.

[LibraryLover]

Time to see an interdisciplinary team at a top children's or other hospital. Johns Hopkins, whatever it takes. Enough with the piecemeal. (I say that gently). It's been too long.