More answers :) To LYNN from HK list

[Guest guest]

Tell me more about Jericho's symptoms. Asenath has stroke=like-episodes, TIA's, and strokes. I have been told by the doctors that the biggest difference between the three is how long issues remain. Real strokes have lasting damage, for instance, Asenath has permanent damage to her legs and left arm, paralysis in her face/mouth. These symptoms can resolve slowly over a year but whatever is there a year after the stroke happens is usually permanent. TIA's (Transient Ischemic Attacks) are very short and can be symptoms that last from minutes to several hours and rarely last for more than a couple days. They usually indicate that an upcoming stroke will occur within 3 years if treatment isn't sought. Stroke-like-episodes are the "in-between" ones. The symptoms last usually for a day to a couple of weeks and then resolve for the most part. It can be hard to know what is happening at the time but we have pretty good indicators to follow for Asenath's real strokes. She usually has a virus, then takes a nap, and then wakes with a horrible migraine that indicates a stroke and then we start to see the issues that are involved. TIA's can be quite strange because the child can appear quite bad at first and then suddenly be better. Memory problems- Asenath has this issue due to 2 strokes in her speech cognitive area. She has recall problems and other cognitive issues related to the strokes. We are just learning how much she actually deals with by asking her questions while reading books and seeing her really struggle to answer basic questions. We get speech/cognitive therapy twice a week for 1 hour each day. We will also be adding more therapy geared toward the cognitive issues soon after she is on the brain injury waiver (which starts in January!). Muscle biopsy- The actual procedure is pretty easy and is usually done on the upper thigh in a child. we had a skin biopsy at the same time which will help rule out the AH and other issues. The thing you have to worry about is the anesthesia. In Mito children it can sometimes be dangerous. For instance, Asenath can not use the gas anesthesia as it becomes very difficult for her to wake back up. Some children have breathing problems, seizures, or other problems with anesthesia so it is important to use surgeons who are aware of the Mito issues related to anesthesia. Asenath had her mic-key button (g-tube) placed at the same time and I thoroughly recommend that you do the same if you have a muscle biopsy and need to have a g-tube placed as well. Do it together so you can eliminate another operation! This group is very experienced with the biopsy and g-tube issues and the archives are filled with information on them as well. MRS- I can't remember quite what the initials stand for but know the M and the R and the same as in MRI and MRA (Magnetic Resonating) The S I am unsure about. All I know is that is can show something that may indicate Mito. If you type in MRS in your search the web area it will probably help you on it. Sorry... Pay for Medical Bills- Well, our insurance Blue Cross Blue Shield has really helped us. They pay between 80-90% of most visits and 100% of our hospital room payments. They cover most of our medications as well. We have a case manager who has been a gem through them. We do however have quite a bit of bills to still pay out of pocket. We built up over $8000 worth of bills these past two years for her out of pocket. Yes, we are a little tight financially but are managing. Starting January Asenath will be on the brain injury waiver and this will really help for future costs. Are you on any waivers? If not look into them. Quite a few people on this list have the ill and handicapped waiver. Hope this helped. Keep asking away! Darla: mommy to Asenath Re: To LYNN again from HK list > Stroke-like-episodes usually are temporary and the worst of it lastsfor a short time but can have lasting affects for longer periods. Thanks! This is helpful. This sounds different from what Jerichoexperiences.> They gave me a doctor fresh from the residency program and I didn'tseem to believe anything was wrong with me so he ignored everypositive test and treated me very rudely saying I was faking it.I can relate to that!!! Thankfully everyone is taking Jericho's stuffseriously now. But the turn-about was so fast and so extreme - from"this doesn't happen, therefore it isn't happening" all the way to"you should just accept never knowing and never having any treatment,and we don't want to do any tests because they would be a waste oftime for something so rare as this", and then to "it's probablyprogressive" and everyone seeming to leap to the g-tube andcommunication cards and stuff. Like they are giving up or something. It's been a wild ride. I think the truth lies somewhere between theextremes. He definitely has something, and maybe it's progressive(okay, probably is) - but I feel like there is a LOT they can still doin the meantime, to address the dysphagia and memory problems. I knowthey do more with adults, such as cognitive therapy for memory problems. > Carnitine deficiency and metabolic acidosis Yes they are done bysimple blood tests. I think Jericho had blood tests for those but they were normal Although I understand that sometimes things only show up with a biopsy.I have to ask - just how difficult is a muscle biopsy? I have beenhoping that Jericho will not have to have one. My husband is stronglyopposed, if the condition it will find isn't treatable. I worry onewill be needed to see if it's something treatable, or to differentiatebetween mito and MS (or whatever else).> MRA To make you feel better, I didn't know one even existed beforeAsenath had one! Lol! Thanks! :-)> There is also a MRS that is used to see some types of Mito also. Another new term! :-) What is an MRS?> Asenath had one in August with her MRI/MRA but it didn't revealanything. A brain biopsy is the best determiner of vasculitis butalso very dangerous and usually not warranted Asenath's specialistssaid so I was surprised to hear they did that with you MIL. I think they did an angiogram for her too, but decided that in orderto be *sure*, they needed to do the brain biopsy - but maybe I'mremembering that wrong.... I do remember it took her months to betaken seriously in the first place - she was first told that theextremely headaches were depression, if you can believe that. Oncethey started taking it seriously, it was another while before theydecided what was probably going on.> Alternating hemiplegia I can't remember too much about thiscondition except that it didn't explain Asenath's whole picture. Itdidn't explain her blood tests, and I was told, her failure tothrive/eating issues. You may be accurate on the swallowing issues. I am not sure.That is probably true, that it wouldn't explain the whole picture. And the vast majority of AH kids have normal mito results. I alsohaven't heard of failure to thrive being a problem, or g-tubes, withAH kids.> I hope you are able to find good treatment in Utah. I knowthat the doctors here in Iowa just didn't understand Asenath's issuesand totally did not consider Mito as a possibility or vasculitis. That is how Jericho's current ped neuro is - very frustrating. But Ifound a couple of other neuro's and we will see what they say abouthis case. Utah has a medical center that draws people from a large surroundingarea - but if you look, the area around Utah is sparsely populated. Even so though, the children's hospital has been ranked among the top10 in the country. The MS neuro Jericho saw is on an advisory board(or something like that) for the National MS Society, and the head ofthe MS clinic here. And the new ped neuro he will see in January is aworld authority on alternating hemiplegia and is also very involved (Ithink) in mito and other disorders. It will be very discouraging ifwe don't get any answers or directions to go in, from these two doctors.> We tried several doctors before finding our Mayo doctors and boy arethey worth traveling to see. We are only 3 hours away from themthough so it isn't that bad of a drive. Best of luck finding gooddoctors and finding the answers you seek. :)My husband, and my son's SLP, are both convinced we will eventuallyhave to travel out of state to get a diagnosis. I'm really hopingthat we don't have to. It will require flying, and staying somewhere,and trying to figure out how to pay the medical costs, since it willbe out-of-network.Speaking of which - how did you pay the medical costs for Asenath togo to the Mayo Clinic? I know we could get help with flying andaccomodations, but the medical costs are a big concern.I also worry that we will fly out and end up getting the same sort ofquick once-over we get here at times, and not learn anything. On theother hand, I worry about taking a 4yo 1,000-2,000 miles just to bepoked many times and to wait in boring waiting rooms.LynnePlease contact mito-owner with any problems or questions.

[Guest guest]

> Tell me more about Jericho's symptoms. Asenath has stroke=like-episodes,

TIA's, and strokes. I have been told by the doctors

that the biggest difference between the three is how long issues remain.

Well, usually they start somewhat gradually. But sometimes very suddenly. In

the spring, Jericho started limping quite suddenly one

day, and also had swallowing trouble start the same day, and his speech

articulation became unintelligible. The speech mostly

resolved after a day or two, I think. But the swallowing and limping problems

lasted a couple of weeks. He had more swallowing

trouble in May too, I think.

Usually though, the problems start as they did this fall. He started limping,

with falls periodically. After awhile his speech got worse -

I think that part may have been sudden. At the same time, he started having

mild swallowing trouble. We were able to get him to

stop wheezing just by switching to nectar consistency drinks, and no

chips/popcorn/etc.

After a couple of weeks, we tried some thin fluids to see how he handled it and

he seemed fine. So we switched back, thinking the

episode was over.

Within a few days though, he was wheezing again, so we went back to nectar

consistency - but this time it wasn't enough. We

moved up to almost honey, which improved things, and then honey consistency, and

finally, to half-way between honey and pudding.

That finally resolved the problems he was having (coughing with drinks,

wheezing, etc).

Another thing that had changed at the same time things got worse, was that he

started wiping his face constantly, in certain places.

First it was just his left eye, then he added more and more as time went on -

the left corner of his mouth, the left side of his nose, his

left cheek. Within a day or two he was wiping his face literally hundreds of

times a day. That lasted about a week before it started to

improve.

The nature of his swallowing trouble seemed to change at the same time. He

would be fine until he actually swallowed something,

and then he would start coughing. Whereas before it seemed like stuff was

dripping down his throat before he was ready (coordination

problem) - and also going into his nose - after it changed, the coordination

inside his mouth seemed fine, but something was

happening once he swallowed. It wasn't going in his nose anymore either. It

seemed like he only had trouble once the drinks were

actually in his throat. He also had many times when he would seem to swallow

fine at first, but start coughing 10-30 minutes later.

That coughing would last an 30-60 minutes or so, and would usually have some

wheezing after an hour or two.

One thing that is odd this time around is that he has had 4 periods where he

seemed to improve, but then got worse again. Usually it

seems more straightforward. I think, anyway - maybe I'm wrong about that, maybe

I just wasn't looking at it this way before. We

never had good control over the dysphagia before, as we have had off/on this

time.

On the 18th, he saw a ped neuro who noticed that Jericho was walking with his

right foot turning in. I haven't been paying much

attention to his foot the last couple of months, to be honest - I figured it

would just be depressing. The times I have checked,

sometimes he is having trouble and sometimes he isn't. That morning, he had

tripped and nearly fallen while walking to his bus. But

the odd thing is that his foot was fine the next day. (It was also odd that it

was turning in SO consistently when the neuro saw him -

usually it is more haphazard - like it's floppy or uncoordinated, not simply

toe-ing in.)

> Real strokes have lasting damage, for instance, Asenath has permanent damage

to her legs and left arm, paralysis in her

face/mouth. These symptoms can resolve slowly over a year but whatever is there

a year after the stroke happens is usually

permanent.

That seems similar to Jericho's initial loss of articulation. It took 7 months

before he made any progress at all, and then it was very

slow from there on.

Although, he made *amazing* progress - beginning on one specific day in February

this year (about 3 years after losing the artic in the

first place). That was very odd - it totally baffled his SLP, even while she

was ecstatic about it. He had great fatigue from December

to February. His speech had gradually regressed from Nov to Jan, before sort of

levelling off. It was a big regression - not normal, and

not something the SLP was used to seeing in a child (she had a lot of

experience, too). The fatigue resolved quite suddenly on a

Thursday (2nd or 3rd Thursday in Feb), and within a couple of days, his speech

became much clearer too.

His speech is usually affected somewhat when he has fatigue like that. Then

again, his speech and swallowing are the things most

likely to be affected at any given time.

Anyway - in general, the symptoms start on a given day and then worsen over a

couple of days - sometimes longer. Then they start

to improve, but it always takes much longer to improve than it did to get that

way in the first place.

As for symptoms, he has had:

articulation

nystagmus

severe eye pain

limping

loss of fine motor - he had one day when he was unable to use his right thumb as

opposable,

which was odd - right hand is usually much more affected than left, but

rarely left

is more affected

tremors in his hands, especially the right hand

strange, involuntary movements of his right arm and leg (dystonia?)

- that only happened several times over the course of a week or two, never

before or since

severe leg pain (only during times of limping, and once immediately after losing

bladder control)

loss of bowel and bladder control - but only intermittent and only for a week or

two at a time

- this just started this summer, in April or May - it's not normal

preschooler accidents, either

word retrieval problems - this started all of a sudden, improved after a week,

but returned

a week or two later, and kept coming and going for awhile - this also just

started this

summer, in July

> TIA's (Transient Ischemic Attacks) are very short and can be symptoms that

last from minutes to several hours and rarely last for

more than a couple days. They usually indicate that an upcoming stroke will

occur within 3 years if treatment isn't sought.

Stroke-like-episodes are the " in-between " ones.

You know, my husband's father died of a stroke at 23yo (my husband was only 3yo

when his father died). And Jericho tested positive

for Factor V Leiden. So part of me wonders if this stuff should be looked into

more. Except, Jericho's MRI shows no sign of ongoing

strokes.

> Memory problems- Asenath has this issue due to 2 strokes in her speech

cognitive area. She has recall problems and other

cognitive issues related to the strokes. We are just learning how much she

actually deals with by asking her questions while reading

books and seeing her really struggle to answer basic questions. We get

speech/cognitive therapy twice a week for 1 hour each day.

We will also be adding more therapy geared toward the cognitive issues soon

after she is on the brain injury waiver (which starts in

January!).

You are able to get the brain injury waiver??? In Utah, any progressive disease

is automatically disqualified from getting the brain

injury waiver. MS is specifically disqualified. I'm not sure about mito.

In Utah, as near as I can tell, Jericho would have to require a trach or a

central line in order to qualify for a waiver. The only other way

to get Medicaid is to be poverty-level.

I would LOVE to get cognitive therapy for Jericho!!! All I've been able to get

so far is one SLP who will make communication cards for

him - which I'm having a tough time with the idea of that. Another SLP basicly

said nothing would help (except cues like first letter

sound, etc - but those don't work even when we DO know what he is trying to say

- and the word retrieval is mostly a problem when

we DON " T know what he wants to say).

> For instance, Asenath can not use the gas anesthesia as it becomes very

difficult for her to wake back up. Some children have

breathing problems, seizures, or other problems with anesthesia so it is

important to use surgeons who are aware of the Mito issues

related to anesthesia.

Jericho hasn't had gas anasthesia yet, only IV (nembutal, I think). He hasn't

had any problems so far. Although the doctor for his last

MRI wanted to be extra careful with him.

> MRS- I can't remember quite what the initials stand for but know the M

and the R and the same as in MRI and MRA (Magnetic

Resonating) The S I am unsure about. All I know is that is can show something

that may indicate Mito. If you type in MRS in your

search the web area it will probably help you on it. Sorry...

That's okay! :-) I will look it up.

> Starting January Asenath will be on the brain injury waiver and this will

really help for future costs. Are you on any waivers? If

not look into them. Quite a few people on this list have the ill and

handicapped waiver.

No, but I'm going to talk to a social worker soon, and get more info. Maybe

they know more than I've been able to dig up.

I did find out that Jericho qualifies for case management services, so I'm going

to look into that, too.

Lynne

[Guest guest]

> Tell me more about Jericho's symptoms. Asenath has stroke=like-episodes,

TIA's, and strokes. I have been told by the doctors

that the biggest difference between the three is how long issues remain.

Well, usually they start somewhat gradually. But sometimes very suddenly. In

the spring, Jericho started limping quite suddenly one

day, and also had swallowing trouble start the same day, and his speech

articulation became unintelligible. The speech mostly

resolved after a day or two, I think. But the swallowing and limping problems

lasted a couple of weeks. He had more swallowing

trouble in May too, I think.

Usually though, the problems start as they did this fall. He started limping,

with falls periodically. After awhile his speech got worse -

I think that part may have been sudden. At the same time, he started having

mild swallowing trouble. We were able to get him to

stop wheezing just by switching to nectar consistency drinks, and no

chips/popcorn/etc.

After a couple of weeks, we tried some thin fluids to see how he handled it and

he seemed fine. So we switched back, thinking the

episode was over.

Within a few days though, he was wheezing again, so we went back to nectar

consistency - but this time it wasn't enough. We

moved up to almost honey, which improved things, and then honey consistency, and

finally, to half-way between honey and pudding.

That finally resolved the problems he was having (coughing with drinks,

wheezing, etc).

Another thing that had changed at the same time things got worse, was that he

started wiping his face constantly, in certain places.

First it was just his left eye, then he added more and more as time went on -

the left corner of his mouth, the left side of his nose, his

left cheek. Within a day or two he was wiping his face literally hundreds of

times a day. That lasted about a week before it started to

improve.

The nature of his swallowing trouble seemed to change at the same time. He

would be fine until he actually swallowed something,

and then he would start coughing. Whereas before it seemed like stuff was

dripping down his throat before he was ready (coordination

problem) - and also going into his nose - after it changed, the coordination

inside his mouth seemed fine, but something was

happening once he swallowed. It wasn't going in his nose anymore either. It

seemed like he only had trouble once the drinks were

actually in his throat. He also had many times when he would seem to swallow

fine at first, but start coughing 10-30 minutes later.

That coughing would last an 30-60 minutes or so, and would usually have some

wheezing after an hour or two.

One thing that is odd this time around is that he has had 4 periods where he

seemed to improve, but then got worse again. Usually it

seems more straightforward. I think, anyway - maybe I'm wrong about that, maybe

I just wasn't looking at it this way before. We

never had good control over the dysphagia before, as we have had off/on this

time.

On the 18th, he saw a ped neuro who noticed that Jericho was walking with his

right foot turning in. I haven't been paying much

attention to his foot the last couple of months, to be honest - I figured it

would just be depressing. The times I have checked,

sometimes he is having trouble and sometimes he isn't. That morning, he had

tripped and nearly fallen while walking to his bus. But

the odd thing is that his foot was fine the next day. (It was also odd that it

was turning in SO consistently when the neuro saw him -

usually it is more haphazard - like it's floppy or uncoordinated, not simply

toe-ing in.)

> Real strokes have lasting damage, for instance, Asenath has permanent damage

to her legs and left arm, paralysis in her

face/mouth. These symptoms can resolve slowly over a year but whatever is there

a year after the stroke happens is usually

permanent.

That seems similar to Jericho's initial loss of articulation. It took 7 months

before he made any progress at all, and then it was very

slow from there on.

Although, he made *amazing* progress - beginning on one specific day in February

this year (about 3 years after losing the artic in the

first place). That was very odd - it totally baffled his SLP, even while she

was ecstatic about it. He had great fatigue from December

to February. His speech had gradually regressed from Nov to Jan, before sort of

levelling off. It was a big regression - not normal, and

not something the SLP was used to seeing in a child (she had a lot of

experience, too). The fatigue resolved quite suddenly on a

Thursday (2nd or 3rd Thursday in Feb), and within a couple of days, his speech

became much clearer too.

His speech is usually affected somewhat when he has fatigue like that. Then

again, his speech and swallowing are the things most

likely to be affected at any given time.

Anyway - in general, the symptoms start on a given day and then worsen over a

couple of days - sometimes longer. Then they start

to improve, but it always takes much longer to improve than it did to get that

way in the first place.

As for symptoms, he has had:

articulation

nystagmus

severe eye pain

limping

loss of fine motor - he had one day when he was unable to use his right thumb as

opposable,

which was odd - right hand is usually much more affected than left, but

rarely left

is more affected

tremors in his hands, especially the right hand

strange, involuntary movements of his right arm and leg (dystonia?)

- that only happened several times over the course of a week or two, never

before or since

severe leg pain (only during times of limping, and once immediately after losing

bladder control)

loss of bowel and bladder control - but only intermittent and only for a week or

two at a time

- this just started this summer, in April or May - it's not normal

preschooler accidents, either

word retrieval problems - this started all of a sudden, improved after a week,

but returned

a week or two later, and kept coming and going for awhile - this also just

started this

summer, in July

> TIA's (Transient Ischemic Attacks) are very short and can be symptoms that

last from minutes to several hours and rarely last for

more than a couple days. They usually indicate that an upcoming stroke will

occur within 3 years if treatment isn't sought.

Stroke-like-episodes are the " in-between " ones.

You know, my husband's father died of a stroke at 23yo (my husband was only 3yo

when his father died). And Jericho tested positive

for Factor V Leiden. So part of me wonders if this stuff should be looked into

more. Except, Jericho's MRI shows no sign of ongoing

strokes.

> Memory problems- Asenath has this issue due to 2 strokes in her speech

cognitive area. She has recall problems and other

cognitive issues related to the strokes. We are just learning how much she

actually deals with by asking her questions while reading

books and seeing her really struggle to answer basic questions. We get

speech/cognitive therapy twice a week for 1 hour each day.

We will also be adding more therapy geared toward the cognitive issues soon

after she is on the brain injury waiver (which starts in

January!).

You are able to get the brain injury waiver??? In Utah, any progressive disease

is automatically disqualified from getting the brain

injury waiver. MS is specifically disqualified. I'm not sure about mito.

In Utah, as near as I can tell, Jericho would have to require a trach or a

central line in order to qualify for a waiver. The only other way

to get Medicaid is to be poverty-level.

I would LOVE to get cognitive therapy for Jericho!!! All I've been able to get

so far is one SLP who will make communication cards for

him - which I'm having a tough time with the idea of that. Another SLP basicly

said nothing would help (except cues like first letter

sound, etc - but those don't work even when we DO know what he is trying to say

- and the word retrieval is mostly a problem when

we DON " T know what he wants to say).

> For instance, Asenath can not use the gas anesthesia as it becomes very

difficult for her to wake back up. Some children have

breathing problems, seizures, or other problems with anesthesia so it is

important to use surgeons who are aware of the Mito issues

related to anesthesia.

Jericho hasn't had gas anasthesia yet, only IV (nembutal, I think). He hasn't

had any problems so far. Although the doctor for his last

MRI wanted to be extra careful with him.

> MRS- I can't remember quite what the initials stand for but know the M

and the R and the same as in MRI and MRA (Magnetic

Resonating) The S I am unsure about. All I know is that is can show something

that may indicate Mito. If you type in MRS in your

search the web area it will probably help you on it. Sorry...

That's okay! :-) I will look it up.

> Starting January Asenath will be on the brain injury waiver and this will

really help for future costs. Are you on any waivers? If

not look into them. Quite a few people on this list have the ill and

handicapped waiver.

No, but I'm going to talk to a social worker soon, and get more info. Maybe

they know more than I've been able to dig up.

I did find out that Jericho qualifies for case management services, so I'm going

to look into that, too.

Lynne

[Guest guest]

> Tell me more about Jericho's symptoms. Asenath has stroke=like-episodes,

TIA's, and strokes. I have been told by the doctors

that the biggest difference between the three is how long issues remain.

Well, usually they start somewhat gradually. But sometimes very suddenly. In

the spring, Jericho started limping quite suddenly one

day, and also had swallowing trouble start the same day, and his speech

articulation became unintelligible. The speech mostly

resolved after a day or two, I think. But the swallowing and limping problems

lasted a couple of weeks. He had more swallowing

trouble in May too, I think.

Usually though, the problems start as they did this fall. He started limping,

with falls periodically. After awhile his speech got worse -

I think that part may have been sudden. At the same time, he started having

mild swallowing trouble. We were able to get him to

stop wheezing just by switching to nectar consistency drinks, and no

chips/popcorn/etc.

After a couple of weeks, we tried some thin fluids to see how he handled it and

he seemed fine. So we switched back, thinking the

episode was over.

Within a few days though, he was wheezing again, so we went back to nectar

consistency - but this time it wasn't enough. We

moved up to almost honey, which improved things, and then honey consistency, and

finally, to half-way between honey and pudding.

That finally resolved the problems he was having (coughing with drinks,

wheezing, etc).

Another thing that had changed at the same time things got worse, was that he

started wiping his face constantly, in certain places.

First it was just his left eye, then he added more and more as time went on -

the left corner of his mouth, the left side of his nose, his

left cheek. Within a day or two he was wiping his face literally hundreds of

times a day. That lasted about a week before it started to

improve.

The nature of his swallowing trouble seemed to change at the same time. He

would be fine until he actually swallowed something,

and then he would start coughing. Whereas before it seemed like stuff was

dripping down his throat before he was ready (coordination

problem) - and also going into his nose - after it changed, the coordination

inside his mouth seemed fine, but something was

happening once he swallowed. It wasn't going in his nose anymore either. It

seemed like he only had trouble once the drinks were

actually in his throat. He also had many times when he would seem to swallow

fine at first, but start coughing 10-30 minutes later.

That coughing would last an 30-60 minutes or so, and would usually have some

wheezing after an hour or two.

One thing that is odd this time around is that he has had 4 periods where he

seemed to improve, but then got worse again. Usually it

seems more straightforward. I think, anyway - maybe I'm wrong about that, maybe

I just wasn't looking at it this way before. We

never had good control over the dysphagia before, as we have had off/on this

time.

On the 18th, he saw a ped neuro who noticed that Jericho was walking with his

right foot turning in. I haven't been paying much

attention to his foot the last couple of months, to be honest - I figured it

would just be depressing. The times I have checked,

sometimes he is having trouble and sometimes he isn't. That morning, he had

tripped and nearly fallen while walking to his bus. But

the odd thing is that his foot was fine the next day. (It was also odd that it

was turning in SO consistently when the neuro saw him -

usually it is more haphazard - like it's floppy or uncoordinated, not simply

toe-ing in.)

> Real strokes have lasting damage, for instance, Asenath has permanent damage

to her legs and left arm, paralysis in her

face/mouth. These symptoms can resolve slowly over a year but whatever is there

a year after the stroke happens is usually

permanent.

That seems similar to Jericho's initial loss of articulation. It took 7 months

before he made any progress at all, and then it was very

slow from there on.

Although, he made *amazing* progress - beginning on one specific day in February

this year (about 3 years after losing the artic in the

first place). That was very odd - it totally baffled his SLP, even while she

was ecstatic about it. He had great fatigue from December

to February. His speech had gradually regressed from Nov to Jan, before sort of

levelling off. It was a big regression - not normal, and

not something the SLP was used to seeing in a child (she had a lot of

experience, too). The fatigue resolved quite suddenly on a

Thursday (2nd or 3rd Thursday in Feb), and within a couple of days, his speech

became much clearer too.

His speech is usually affected somewhat when he has fatigue like that. Then

again, his speech and swallowing are the things most

likely to be affected at any given time.

Anyway - in general, the symptoms start on a given day and then worsen over a

couple of days - sometimes longer. Then they start

to improve, but it always takes much longer to improve than it did to get that

way in the first place.

As for symptoms, he has had:

articulation

nystagmus

severe eye pain

limping

loss of fine motor - he had one day when he was unable to use his right thumb as

opposable,

which was odd - right hand is usually much more affected than left, but

rarely left

is more affected

tremors in his hands, especially the right hand

strange, involuntary movements of his right arm and leg (dystonia?)

- that only happened several times over the course of a week or two, never

before or since

severe leg pain (only during times of limping, and once immediately after losing

bladder control)

loss of bowel and bladder control - but only intermittent and only for a week or

two at a time

- this just started this summer, in April or May - it's not normal

preschooler accidents, either

word retrieval problems - this started all of a sudden, improved after a week,

but returned

a week or two later, and kept coming and going for awhile - this also just

started this

summer, in July

> TIA's (Transient Ischemic Attacks) are very short and can be symptoms that

last from minutes to several hours and rarely last for

more than a couple days. They usually indicate that an upcoming stroke will

occur within 3 years if treatment isn't sought.

Stroke-like-episodes are the " in-between " ones.

You know, my husband's father died of a stroke at 23yo (my husband was only 3yo

when his father died). And Jericho tested positive

for Factor V Leiden. So part of me wonders if this stuff should be looked into

more. Except, Jericho's MRI shows no sign of ongoing

strokes.

> Memory problems- Asenath has this issue due to 2 strokes in her speech

cognitive area. She has recall problems and other

cognitive issues related to the strokes. We are just learning how much she

actually deals with by asking her questions while reading

books and seeing her really struggle to answer basic questions. We get

speech/cognitive therapy twice a week for 1 hour each day.

We will also be adding more therapy geared toward the cognitive issues soon

after she is on the brain injury waiver (which starts in

January!).

You are able to get the brain injury waiver??? In Utah, any progressive disease

is automatically disqualified from getting the brain

injury waiver. MS is specifically disqualified. I'm not sure about mito.

In Utah, as near as I can tell, Jericho would have to require a trach or a

central line in order to qualify for a waiver. The only other way

to get Medicaid is to be poverty-level.

I would LOVE to get cognitive therapy for Jericho!!! All I've been able to get

so far is one SLP who will make communication cards for

him - which I'm having a tough time with the idea of that. Another SLP basicly

said nothing would help (except cues like first letter

sound, etc - but those don't work even when we DO know what he is trying to say

- and the word retrieval is mostly a problem when

we DON " T know what he wants to say).

> For instance, Asenath can not use the gas anesthesia as it becomes very

difficult for her to wake back up. Some children have

breathing problems, seizures, or other problems with anesthesia so it is

important to use surgeons who are aware of the Mito issues

related to anesthesia.

Jericho hasn't had gas anasthesia yet, only IV (nembutal, I think). He hasn't

had any problems so far. Although the doctor for his last

MRI wanted to be extra careful with him.

> MRS- I can't remember quite what the initials stand for but know the M

and the R and the same as in MRI and MRA (Magnetic

Resonating) The S I am unsure about. All I know is that is can show something

that may indicate Mito. If you type in MRS in your

search the web area it will probably help you on it. Sorry...

That's okay! :-) I will look it up.

> Starting January Asenath will be on the brain injury waiver and this will

really help for future costs. Are you on any waivers? If

not look into them. Quite a few people on this list have the ill and

handicapped waiver.

No, but I'm going to talk to a social worker soon, and get more info. Maybe

they know more than I've been able to dig up.

I did find out that Jericho qualifies for case management services, so I'm going

to look into that, too.

Lynne

[Guest guest]

Darla,

MRS is Magnetic Resonance Spectroscopy. This test is an MRI using different computer software whereby the chemicals are measured in the brain. Lucas had one done several years ago and it showed lactic acid in his brain that correlated with the areas of delayed myelination. The myelin being the coating on the nerves in the brain. This in turn causes his cortical visual impairment (CVI). This was described to me as like plugging in a tv set with uncoated wires. Sometimes the signals get through and sometimes they don't. CVI is described as visually being able to see but not always processing what they can see.

Darla, I also enjoyed your pictures what a great looking family.

Loriann (mother of 3: Lucas 7yrs suspected mito and and 11yr old twins)