Re: Sleep issues related to mito?

[Guest guest]

,

I have the exact same problem , I wake up contimually thru the night.

My neuro sent me for a sleep study ( i have mito ) and during the sleep study i woke up something like 114 times in a 8 hour period.

I am going back tonight for a CPAP titration.

Perhaps you could request a sleep study.

karen

[Guest guest]

I understand your concern about Gentry. Max is now 5 and the nights she has slept thru the night I can count on both hands and won't get up 10.

I got all kinds of answers from the medical community....anything from behavioral to she'll outgrow it. She never has outgrown it. At least once at night she needs food. We still give her Pediasure. It seemed her body was working and is still working as hard at night as it is during the day.

Now we know more. Recently she was diagnosed with central apnea, a disorder in which the brain does not send a signal to the body to breath. In addition, she has hypopneas (shallow breathing). Now of course we wonder if this is what has been going on all along. Her heart rate at night is working at an aerobic rate at times, other times it decels. She is now on a bipap with 02 and her sat levels are much more stable. Her heart on the other hand is still all over the map. then there is the issue of CO2 values.

I am not saying Gentry has the same problem. At the same time I suggest to follow your gut and not to be put off by anyone who just likes to write it off to an behaviral issue or anything of that sort. ( we have left a neuro for that attitude).

Hopefully the Mayo will provide some insight and have some suggestions.

regards

rosy

[Guest guest]

Rosy and ,

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.

Thanks again for all your help!!

Wayne, , Gentry and ~Our Angel Aspyn~www.aspynblock.com

Re: Sleep issues related to mito?

I understand your concern about Gentry. Max is now 5 and the nights she has slept thru the night I can count on both hands and won't get up 10.

I got all kinds of answers from the medical community....anything from behavioral to she'll outgrow it. She never has outgrown it. At least once at night she needs food. We still give her Pediasure. It seemed her body was working and is still working as hard at night as it is during the day.

Now we know more. Recently she was diagnosed with central apnea, a disorder in which the brain does not send a signal to the body to breath. In addition, she has hypopneas (shallow breathing). Now of course we wonder if this is what has been going on all along. Her heart rate at night is working at an aerobic rate at times, other times it decels. She is now on a bipap with 02 and her sat levels are much more stable. Her heart on the other hand is still all over the map. then there is the issue of CO2 values.

I am not saying Gentry has the same problem. At the same time I suggest to follow your gut and not to be put off by anyone who just likes to write it off to an behaviral issue or anything of that sort. ( we have left a neuro for that attitude).

Hopefully the Mayo will provide some insight and have some suggestions.

regards

rosyPlease contact mito-owner with any problems or questions.

[Guest guest]

, Just about anything you can think of "can be" mitochondria related. From sleep to urinating to thinking!

When there are multiple diagnosis in one individual, then one should think about mitochondrial disease.

From: and Wayne

To: mito

Sent: Monday, October 25, 2004 11:09 AM

Subject: Sleep issues related to mito?

Hello everyone, I hope you are all well!! I am writing because I have a concern about Gentry, she will be 1 on November 24th and she has some sleep issues, she wakes up during the night almost every hour, she is so tired and wants to sleep but she keeps waking up. Last week she had a bit of a cold and we gave her benadryl at night before she went to bed, she slept for almost the whole night, now last night was the first night since last Saturday that she went to bed without Benadryl and she woke up every 30 minutes. Does anyone have any suggestions? We go to Mayo at the end of November and will see Dr. Whiteman, as of now Gentry seems to be healthy, and all blood work has come back normal, I am just so petrified that this disease is just laying dormant waiting to show its ugly face. Thanks to all in advance for all that respond, I appreciate everything you guys do!!

By the way HAPPY BIRTHDAY ZIPPORAH...I hope you had a great first birthday!!!

All our Love,

Wayne, , Gentry and ~Angel Aspyn~ 11-14-01 to 7-15-02 www.aspynblock.com Please contact mito-owner with any problems or questions.