Re:Heidi (from Darla) regression, autonomic symptoms

[Guest guest]

I am so sorry! My heart breaks as I read your daughter's issues. So

many sound like my girls'. I would love to talk with you on the phone if

you want. You can call me anytime at or write me at

honeybear50317@... and give me your phone number and I will call you. I

know it really helps to talk to someone who has been through it before.

It sounds like the staring issues are probable seizure activity. The

unresponsiveness and lethargy along with times of confusion agitation, and

normal glimpses are MAJOR cues to this. Does she also display hyperactivity

during times of alertness? This is common with petit mals. If your

daughter is having other types of seizures it is more than reasonable to

assume petit mals are involved as well. Asenath has dealt with them

especially near strokes. Petit mals are seen as staring episodes. If the

episode started at the beginning of September, then you can expect her to be

still just starting to come out of it. It sounds like she probably had a

right-sided stroke even though it is not showing up on scans. MANY strokes

do NOT show up on scans! And not to worry you, but she can have permanent

damage without it showing on the scans. Our daughter's are perfect examples

of that. The right sided strokes tend to affect things like speech and

cognitive/processing issues. Zipporrah had real trouble trying to pick up

things and to even process HOW to reach for item she wanted for a couple of

months before things started to get better. I can't tell you what to

expect because every child is different and every stroke is different.

Sometimes they get things back quickly and sometimes they get things back

very slowly. The best advice I can give you is to push for PT, OT, and SP

as quickly as possible if you don't already have it as the first few months

following these episodes is the optimal time frame to regain skills. You

can regain things up to one year following an episode. Anything left after

that time is usually permanent.

Unfortunately strokes can have devastating effects on the autonomic

areas. It sounds like she may also be dealing with tracheomalacia or other

form of throat malacia as the dropping of sats, especially when the head

falls forward, is a major warning symptom of this. Malacia can improve so

hopefully she will regain more muscle tone there, BUT I highly recommend she

see an ENT (ear, nose, throat specialist) as tracheomalacia can be very

dangerous sometimes and can cause inability to breath. Reflexes can

definitely be affected by strokes and will probably improve over time some.

The gagging is another symptom of possible swallow issues along with

possible muscle tone issues of the mouth, tongue, cheeks, and swallow

passages. Zipporrah, again, deals with these. Even the bowel changes are

norms to see with stroking. Hopefully some of these issues with start to

show improvement. I know it is very hard to see her struggle and not know

how much damage will remain. Every time my girls are hit hard I wonder. It

can be very hard to see, especially when they are so young and don't

understand what is happening and WE can't know what all is happening in them

as they can't explain.

The UTI probably set this all off. My girls' strokes always begin with

some form of viral/bacterial attack. There are tons of things more I could

say and if you want to talk, let me know or call me, ok?!

Darla: mommy to

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

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

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

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

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

regression, autonomic symptoms

>

> Hi All

> has really been misbehaving lately. She had a UTI at the

> beginning of Sept, became unresponsive, and is still not yet back to

> baseline. She has responded somewhat to increased IV fluid and is

> now getting close to 2 liters a day IV in TPN and additional

> boluses. She is now awake but seems to have lost most of her play

> skills, communication, and social awareness. Her right sided

> weakness is more pronounced and she has more athetoid movements than

> she used to. Her hands can't seem to pick anything up, and she's

> even having a hard time getting her binky into her mouth. She had an

> MRI today and the preliminary read is NORMAL. I'm thrilled that

> there was no permanent damage but I'm afraid to get my hopes up that

> everything will be fine. Darla, can you give me some pointers?

>

> Autonomic symptoms have been completely out of control. She's

> desatting at night and when she falls asleep and her head drops and

> closes her airway. Low BP's have been setting off seizures.

> Reflexes have been coming and going, and her level of consciousness

> has been altered (unresponsive, then really lethargic without

> protective reflexes like gag reflex, then really confused and

> agitated, then awake but staring, then little glimmers of herself,

> then back to staring, etc.) Blood sugars have been a bit wild. Gut

> is alternating between complete shut down to dumping and pooping out

> meds without absorbing them.

>

> I've been in frequent contact with Dr. Korson and he raised Co Q10

> and made changes to her TPN with the GI doc. Neuro has been

> updated. It seems like everyone feels that this is the course of the

> disease and we just have to ride it out. Does anyone else have any

> suggestions?

>

> It's heartbreaking seeing her so affected. She had age appropriate

> skills (besides gross motor) 6 months ago and now she's doing very

> little. How long has it taken other children to come back from a

> crash like this?

>

> Thanks

> Heidi, 's Mom, 2 next week

>

>

>

>

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

>