RE:- Question about mito

[Guest guest]

I am not sure what all information concerning strokes you want to know

but I can tell you some things and if you want more info, let me know. (MORE

SPECIFICS ON INFANTS WERE WRITTEN BELOW AFTER I REREAD YOUR QUESTION AND

REALIZED WHAT YOU REALLY WANTED TO KNOW!!!!)

Often, strokes occur during or within 2 weeks following a

virus/illness. In our case, the worse the infection-the worse the stroke

tends to be. What we see in our girls and is often the case when strokes

occur is a very bad migraine followed by many different possibilities that

indicate a stroke is taking place. Often, drossiness and lethargy accompany

the symptoms. You may see a drooping mouth to one side or the other,

drooling, slurred or thick tongued speech, swallowing problems, breathing

problems, disorientation may occur, memory lapses (forgetting things,

people, or places), a dragging leg or weakened arm or as bad as a paralysis

of a body part or whole side, inability to walk, stand, or even sit up

sometimes, etc. Some strokes are so little you may only notice a droopy

mouth, nevertheless it still may be a stroke. Another interesting thing you

may not know is that people can have a stroke that does NOT show up on MRI.

Some people may actually have very bad symptoms with little or no damaged

brain tissue and then the opposite, people with very little symptoms with

very large areas of damaged brain. The docs aren't sure why this occurs,

but they know that it does. There are also three different names for

strokes depending on the length of time it takes to recover or the length of

the symptoms. TIA (transient ischemic attacks) are symptoms/issues that

usually resolve within minutes to several hours, but not usually longer than

a day or two. These often are viewed as an indicator that the person will

have a larger stroke within the next two years following the TIA and people

are encouraged to seek help in order to diagnose the cause in order to try

to prevent future stroke. SLE (Stroke-like-episodes) are more lengthy and

the symptoms/issues tend to resolve within several days to a month or so.

Then the more frequently heard of one, strokes, tends to have much more long

lasting affects. You may regain everything, but much less likely. You may

regain much but have some lingering issues that never get totally better.

They say that people can make gains for up to a year following a stroke and

the remaining issues are usually there for the rest of your life.

AS FAR AS BABIES WITH STROKES... Zipporrah had one at 2 months and at 4

months, so I will try to help you some with what you might be able to

expect. First, it depends on how bad the stroke was and which side it

happened on. Due to the amazing brain's rewiring propensity, especially in

infants and small children, much can be regained.

Zipporrah was affected on her left side first at 2 months of age. She

was unable to move her left arm or leg much for over three weeks and then

slowly began to regain use of them. She developed a lot of sensory issue

problems and was unable to learn how to calm herself without nursing

(latching on at least). She had a lot of left-sided neglect and tracking

problems. She developed swallowing, sucking problems and her mouth pulled

to the left. She would not play when placed on her left side, but only

stared. When placed on the right, she would kick and play and coo. She

forgot how to roll over and needed to relearn many things. After about two

months she was beginning to cross over mid-line again with her left arm/hand

(reach past her tummy to the other side) and began to regain much of her

movement. The drooping cheek/mouth remains still, the swallowing/feeding

issues remain, and some muscle weakness also remain. Her tracking became

much better and many of the left-sided neglect issues resolved. She still

has a lot of sensory issues as well.

Then at 4 months she was hit with another stroke on her right side. It

seemed much smaller than the other one yet we knew it was occuring as the

was in great pain, holding her head, screaming, drooling, her suck was very

weak, and her mouth pulled to the right. Over the next few days we could

tell her right leg and arm were also affected. She would not cross over

midline, her left hand became her favorite, she totally forgot how to reach

out for toys, had muscle weakness in her right leg, forgot how to roll over

AGAIN, was very confused and disoriented, lethargic, sensory problems

increased, and her feeding/swallowing issues became worse again. Again

within about 2 months we saw many improvements. The G-tube was placed

around this time as well and we feel the increased nutrician also helped

greatly. She became energetic for the first time in many months, she began

crossing midline again, relearned to roll over, regained much strength and

began to make new gains. She still prefers her left hand (10 months old

tomorrow) and has problems planting her feet solidly on the ground. She

will be getting her SMO (leg braces) next Wednesday to help her stand

properly and hopefully encourage her to start learning how to walk. She

still battles a lot of sensory issues that affect much more than I realized

until lately. Of course, the feeding issues remain, and on and on.

SORRY THIS IS SO LONG! As for your child, the progress he will make is

very individual. He may regain tons or may have many issues that remain.

There are no set patterns to the rehab. Therapy will definitely increase

the potential of recovering things and absolutely important. Tell me more

about his symptoms and I may be able to help more specifically in the areas

you are wondering about. When did he have the stroke? Which side? What do

you see as his affected issues?

Darla: mommy to:

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

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

issues...

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

asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible

seizures, dumping syndrome...

Luke, Leah, Rachael, Isaac, Tirzah, Kezia, and Marquis (some with Mito

signs)

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>Reply-To: Mito

>To: Mito

>Subject: Question about mito

>Date: Fri, 20 Aug 2004 02:47:37 -0000

>

>

>I am wondering if any of you have experianced a rash? Logan has this

>reash at first the Dr.s thought it was fifths disease then they

>thought he was having a reaction to his meds but that turned out to

>be wrong. It seems to be when he starts going down and having his

>bad times he starts with a rash and wants to be held all the

>time ,his seizures get worse . It is almost like a fore warning sign

>of what is too come. Have any of you experianced anything like this

>or dealt with a rash?

> Also to all the parents that babies have strokes ,can you tell me

>what to expect and how this will affect Logan . I noticed it does

>affect one side of his body. But what other things ,signs ,or any

>info ,on strokes do you guys have.

> Thank - You

> Jennie proud mito mom of Logan 2 yrs old

>

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

>