Need Info - LONG

[Guest guest]

Second, she is having a side to side movement in her right eye. It moves side to side while her left eye will stay fixed looking at whatever she sees. Her right eye movement is NOT rapid and does not happen all the time. We don't have an appt with the eye doc until May 17 and we don't see neuro again until May 13. This is very new for her and is really worries me that maybe she is beginning to lose some vision. Any info/experience anyone has with this would be great.

I don't have much advice for you but I would call the neuro tomorrow and let them know what is going on...this along with the crawling screams brain to me and possibly even something non-mito. Dont' want to scare you and I am probably totally off-base here, but I thought of neuroblastoma or something...but its probably not that. However, its definitely a neuro issue that needs a phone call. They can squeeze you in if they need to. Kids are notorious for not doing things when they are in clinic so I would keep the video camera handy and tape it too.

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Hi all! I have a couple of questions and if they are silly please

let me know. Since I'm new to this I'm not sure when to worry and

when to say Oh that's just Sophie.

First, she started crawling crooked about a week ago. She had been

crawling straight before that. Her PT saw her yesterday and said she

is swinging her leg way out to widen her base. PT isn't sure why she

feels like she needs to widen her base though. She has Roseola right

now so I don't know if I can blame it on the virus since she started

with this before she got sick. Her balance is poor and she is very

resistant to bearing any weight on her legs. PT thinks maybe it's

because she has to whatever energy she has trying to fight the virus

and there just isn't anything left over.

Second, she is having a side to side movement in her right eye. It

moves side to side while her left eye will stay fixed looking at

whatever she sees. Her right eye movement is NOT rapid and does not

happen all the time. We don't have an appt with the eye doc until

May 17 and we don't see neuro again until May 13. This is very new

for her and is really worries me that maybe she is beginning to lose

some vision. Any info/experience anyone has with this would be great.

I have read several posts about the heart rates of kids with mito. I

know some seem to brady down and others seem tachy. What is the

normal HR and when should I worry. Sophie stays about 160 regardless

of activity. Even when she is sleeping soundly she is still about

160. She is only 11 months old so I don't know if this is normal for

her age or not.

Last thing and then I promise I will quit. We are going to Disney in

a couple of weeks and with all the posts about the kids getting to

hot I am concerned about not recognizing when she is getting

overheated. I won't have time to get a cooling vest etc. before our

trip so can anyone share tips with me about signs that she may be

getting into trouble?

Sorry this is so long. Any info or help would be great.

Meagan, Mom to Sophia 11 months Complex I, III, & IV deficiency

www.caringbridge.org/ky/sophiesong

[Guest guest]

It sounds like a high heart rate for sleeping especially. Usually this

rate is only seen during viruses during sleep although other issues can

cause this so you should mention it to your docs.

Since your daughter is having a viral attack currently I would be

curious as to how far before the virus her symptoms of leg weakness began.

With Mito our kids seem to show signs even before we know they are ill. My

girls get weaker and start acting strange several days prior to any viral

symptoms and I always begin thinking, " Here we go again. " It could be

stroke episode activity and so a neuro should be contacted as the others

have suggested. Hopefully some or all of the symptoms will pass after the

virus goes away. As for the eye issue I am at a loss other than to say

stroke episodes can cause eye issues along with the leg issues. Maybe the

left eye isn't working quite right and has paralysis and I am wondering if

the left leg is the one that seems to be affected. If so this would make

sense. You might want to watch the hand and arm on that side as well and

maybe even the cheek and mouth to see if you notice any drooping on the same

side. We saw the same crawling pattern in our two girls with the widened

leg. Hope some of this is helpful.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

Need Info - LONG

>

>

> Hi all! I have a couple of questions and if they are silly please

> let me know. Since I'm new to this I'm not sure when to worry and

> when to say Oh that's just Sophie.

>

> First, she started crawling crooked about a week ago. She had been

> crawling straight before that. Her PT saw her yesterday and said she

> is swinging her leg way out to widen her base. PT isn't sure why she

> feels like she needs to widen her base though. She has Roseola right

> now so I don't know if I can blame it on the virus since she started

> with this before she got sick. Her balance is poor and she is very

> resistant to bearing any weight on her legs. PT thinks maybe it's

> because she has to whatever energy she has trying to fight the virus

> and there just isn't anything left over.

>

> Second, she is having a side to side movement in her right eye. It

> moves side to side while her left eye will stay fixed looking at

> whatever she sees. Her right eye movement is NOT rapid and does not

> happen all the time. We don't have an appt with the eye doc until

> May 17 and we don't see neuro again until May 13. This is very new

> for her and is really worries me that maybe she is beginning to lose

> some vision. Any info/experience anyone has with this would be great.

>

> I have read several posts about the heart rates of kids with mito. I

> know some seem to brady down and others seem tachy. What is the

> normal HR and when should I worry. Sophie stays about 160 regardless

> of activity. Even when she is sleeping soundly she is still about

> 160. She is only 11 months old so I don't know if this is normal for

> her age or not.

>

> Last thing and then I promise I will quit. We are going to Disney in

> a couple of weeks and with all the posts about the kids getting to

> hot I am concerned about not recognizing when she is getting

> overheated. I won't have time to get a cooling vest etc. before our

> trip so can anyone share tips with me about signs that she may be

> getting into trouble?

>

> Sorry this is so long. Any info or help would be great.

>

> Meagan, Mom to Sophia 11 months Complex I, III, & IV deficiency

> www.caringbridge.org/ky/sophiesong

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>