Re: - Sleep issues related to mito?

[Guest guest]

Nice to hear from you, but rather it be for better reasons!

Concerning sleep issues, Zipporrah hits this issue on the nail. She wakes

constantly and I am still not quite sure what all the reasons are but I have

a few ideas with her. Maybe they will help and maybe not...

1. Migraines or other pain related issues,

2. Sensory issues (Zipporrah always needs to be surrounded tightly by

something to stay comfortable, she tries to sleep in the crack of the bed

rather than the surface, numbness, tingling, and other sensory feelings also

affect her)

3. Breathing related issues; apnea, shallow breathing (Zipporrah sleeps

arched back to open her airways further; she has tracheomalacia and a

tracheal indentation from the subclavian artery leaning against it.)

4. Heart rate issues, as someone else stated also affect Zipporrah. When it

drops real low, she will suddenly bolt up kicking and screaming as if in a

panic and then her heart rate shoots up to close to 200 bpm.

5. Restless leg syndrome (caused often by low iron levels) causes them to be

very restless as parts of their body jerk. It doesn't have to be only in

the legs. Zipporrah's entire right side jerks through most of the night and

I don't see how she could NOT wake up because of it.

6. Hunger issues or blood sugar issues (We don't have this issue very often

at night like we used to before her G-tube, but before then Zipporrah would

often wake within 1-2 hours after her last feeding real upset and starving

with sweaty palms and feet and shaky. She was diagnosed with gastric

dumping syndrome which causes the sweaty, clammy issues. Hypoglycemia used

to be Asenath's big issue for waking during the night (along with many of

the above issues). The body can really make a person feel awful and nausea

is common in hypoglycemic attacks.

Sleep related problems getting through the different sleep cycles into the

deep restful sleep cycle. I am not too knowledgeable about this one, but do

know one cycle brings you close to waking often and then causes you to go

into a deep sleep. If the body doesn't work properly, it will cause you to

wake too fully rather than cause you to go into the deeper state of sleep.

7. Viral issues, ear infections, teething, etc.

I am sure there are tons of explanations. Some related to Mito and

some not. With you past experience with Mito I am sure it is very hard not

to worry for your daughter. I know it is also frustrating trying to explain

to doctors the issues you see only to hear them think you are an overly

paranoid mother because of the past experiences. At first, Dr. Whiteman

thought I was overreacting. Then after seeing her, he knew I wasn't. But

still, often we see things in our children that they can't. There is a lot

of trust that is involved with the doctor, patient relationship. I think

way too many docs just don't listen well enough or prejudge before hearing

everything. Don't ever feel badly for trying to be heard. That is our job

as mothers! I do not know why Gentry is not sleeping well, but if it

becoming as much of an issue as it seems to be, keep talking to the docs

till they listen. I would suggest a sleep study, but if she is like my

girls, that night will be a great one and not reveal much. Try videotaping

her restlessness if you can. People have told me to do this over and over,

except we don't own one.

I am glad to hear her labs have been good. Zipporrah's haven't been,

and of course, she has been quite bad. If you have been reading our posts,

you will know she has been quite bad lately and really worrying us. Her

biggest issues lately seem to be fatigue/exhaustion and SLE's. I hope

Gentry will keep doing well and start sleeping well.

Thanks for saying happy birthday to Zipporrah. Isn't it amazing how

the girls are both that old! By the way, we go to Mayo November 14-18 so

if you go up early or around that time, let me know. We will try to be at

the RMH.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

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