Re: Sleep issues related to mito?--stacy

[Guest guest]

Thanks for your reply's. I have called our local Doc several times over the past couple months about this, and every time they tell me well she just cant comfort herself back to sleep...which wasn't my question in the first place, I wanted to know why she was waking up so much. And the thing that makes me the most mad is these are the same doctors who didn't take us seriously when we thought something was wrong with Aspyn, you would think that they would have learned to take me more seriously. I have called Dr. Whiteman to get his take on the situation.

Sorry I am just now answering this but I was away from the computer over the weekend. It seems like always has some sleep issues, but not quite the ones you are talking about. When he was about 18 months old the neurologist put him on pamelor which is a mild sleeping medicine and it worked well. He never got off of it though. I am sure it must be hard not to worry with everything that Gentry (did I tell you I LOVE that name?) does from the norm, but just try to remind yourself that all kids, even all typical siblings within a family have variables and differences.

I am glad you have Dr Whiteman on your team b/c I know you would take his opinion over any other doctors anytime.

I second your comment about these docs taking you more seriously. I know for me I think when different docs are giving me a hard time or intimidated by my medical knowlege...I want to say "I have taken care of a terminally ill child and I have earned my stripes!" But they still woulnd't get it.

hang in there girl!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!

[Guest guest]

,

We had very similiar episodes with Lucas whereby he was tossing and turning and not getting very restful sleep during the night. We first tried melatonin and it worked for awhile but now we have him on amitriptyline. He now finally rests comfortably and the whole family functions so much better because of it. It was prescribed by our palliative care doctor and I am so thankful he is on it. HTH, Loriann -mom to 3 boys & 12 yr old twins and Lucas 8.5 suspected mito and a slew of other issues. (A little tired myself right now after working)VisibleWorship@... wrote:

Thanks for your reply's. I have called our local Doc several times over the past couple months about this, and every time they tell me well she just cant comfort herself back to sleep...which wasn't my question in the first place, I wanted to know why she was waking up so much. And the thing that makes me the most mad is these are the same doctors who didn't take us seriously when we thought something was wrong with Aspyn, you would think that they would have learned to take me more seriously. I have called Dr. Whiteman to get his take on the situation.

Sorry I am just now answering this but I was away from the computer over the weekend. It seems like always has some sleep issues, but not quite the ones you are talking about. When he was about 18 months old the neurologist put him on pamelor which is a mild sleeping medicine and it worked well. He never got off of it though. I am sure it must be hard not to worry with everything that Gentry (did I tell you I LOVE that name?) does from the norm, but just try to remind yourself that all kids, even all typical siblings within a family have variables and differences.

I am glad you have Dr Whiteman on your team b/c I know you would take his opinion over any other doctors anytime.

I second your comment about these docs taking you more seriously. I know for me I think when different docs are giving me a hard time or intimidated by my medical knowlege...I want to say "I have taken care of a terminally ill child and I have earned my stripes!" But they still woulnd't get it.

hang in there girl!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!Please contact mito-owner with any problems or questions.