Re: Mara

[Guest guest]

Hi,

I am Ashlie's mom and grandma to Mara who is 3 yrs. old with

polymicrogyria (BPNH). Mara has just been diagnosed with dystonia, (after 3

years they've given it a name!!!) and the doctor perscribed Baclofen (sp?).

Ashlie has to cut a 20 mg. tablet into 4 pieces and give Mara 3 doses per

day (1/4 pill per dose) which would be 15 mgs. She has to increase this

dosage every week until she is taking 3 tablets per day, I think, and this

would be a total of 60 mgs. per day. They scared us by telling us that

sometimes it can cause seizures in children who are prone to them. Mara

does not have seizures and we certainly don't want get them started.

Because of her brain disorder, we certainly think she is prone to them but

by God's Grace she has been spared them so far. We had gone to this doctor

in hopes of getting botox shots for Mara to help her with her walking

therapy. She had botox shots in both legs when she was about 1 1/2 yrs.

old. and it really helped her stiffness. They want to do the Baclofen and

then do the shots in July.

Can I please ask for some feed back on this. Ashlie is holding off of the

med. until she talks to her therapist and a few others.

Thanks in advance for all your help.

Boise

[Guest guest]

Our daughter, (10), has had Botox for a number of years. She has

never had any seizures. She's been on a low dose of Baclofen for about

6 months with no ill effects. Just this past week, she had surgery to

lengthen tendons in her ankles and right thigh. While they were in

there, they also gave her Botox and Phenol (which is like a super-Botox

and lasts up to 2 years). You might ask about that. I believe it has

to be administered under anesthesia, though. Hope this helps.

Larry

> Hi,

> I am Ashlie's mom and grandma to Mara who is 3 yrs. old with

> polymicrogyria (BPNH). Mara has just been diagnosed with dystonia,

> (after 3

> years they've given it a name!!!) and the doctor perscribed Baclofen

> (sp?).

> Ashlie has to cut a 20 mg. tablet into 4 pieces and give Mara 3 doses

> per

> day (1/4 pill per dose) which would be 15 mgs. She has to increase

> this

> dosage every week until she is taking 3 tablets per day, I think, and

> this

> would be a total of 60 mgs. per day. They scared us by telling us that

> sometimes it can cause seizures in children who are prone to them.

> Mara

> does not have seizures and we certainly don't want get them started.

> Because of her brain disorder, we certainly think she is prone to them

> but

> by God's Grace she has been spared them so far. We had gone to this

> doctor

> in hopes of getting botox shots for Mara to help her with her walking

> therapy. She had botox shots in both legs when she was about 1 1/2

> yrs.

> old. and it really helped her stiffness. They want to do the Baclofen

> and

> then do the shots in July.

> Can I please ask for some feed back on this. Ashlie is holding off

> of the

> med. until she talks to her therapist and a few others.

> Thanks in advance for all your help.

>

> Boise

>

>

>

[Guest guest]

Hello,

I am grandma to Mara who is 3 1/2 years old with PMG (BPNH), also

Microcephalic. I used to write more often but have only been able to lurk

and read for the past few years. Mara is doing well. Her constipation is

under control with Miralax, her ears cleared up finally after having ear

infections and tubes for the first 2 years of life, she has a g-tube now and

has for a year, just had it changed from a micro-vasive to a mic-key, no

longer eats by mouth, she is seizure free praise God, her vision is not good

and is very limited but she can see close up, we are scheduled for an ABR in

January to check her hearing, she takes Baclofen for hypertonia in her lower

legs, also has had botox shots in lower legs 3 times now and has braces,

doesn't walk but wants to, can sit up but doesn't like to except in her

chair, she has pretty good upper body control, doesn't crawl but wants to,

has a stander, gait trainer, goes to school 4 days a week from 12:00 to 3:00

and gets therapy at school (PT, OT and Speech) once a week. Mara is tall

and weighs 45 pounds. She doesn't speak, but makes sounds and noises. She

hears but we don't know how well but she responds to our voices and loves

music and cartoons. I am sure you won't be surprised to know that she is

the absolute love of our lives. Everyone who meets Mara falls in love with

her. She has taught us all what life is really all about. We've learned

much from our little angel and she teaches us more each day.

I have a few questions for the group, you all have helped us so much in

the past. We have a seating clinic this coming Wednesday for a new

wheelchair for Mara. She has a " Kid-Cart " which is just about to crater it

is falling apart so badly!! We would like to have suggestions as to what

brand or type we should ask for and what to refuse? Is there anything we

should be careful of in ordering, etc?

The other question is that they said Mara is probably to big (weighs too

much ) now to have Chloral Hydrate to be put to sleep when she has her ABR

in January. I read something about Propofol (I think Christie Lane - Sam)

had it for an ABR. Could you give me more info. as Mara doesn't do well

with anesthesia and cries for hours when she wakes up. I think she is

having trouble breathing when she wakes up and it scares her, but I am just

the grandma and the drs. don't think that's it. Anyway, any info. on this

subj. would be appreciated.

My daughter Ashlie is going to a conference in Kansas City, Mo. for

parents of children with special needs on Wednesday Nov. 17. Is anyone out

there going? Just curious. It sounds like a really neat one day conference

with some interesting guest speakers. If anyone is in our area and

interested, I have the info.

Sorry this is so long but didn't feel as though I could ask questions

without at least an update on Mara.

Thank you all so very much, you are such a blessing to many.

Boise, grandma to Mara, mom to Ashlie who is pregnant (5 months) and

going through genetics testing and going to a high risk doctor in Columbia,

Mo.

P. S We go Friday for the 3-D sonogram to check the baby and all the blood

work has come back with no problems. This baby has a different dad than

Mara and the risk of having another child with Mara's genetic disorder is

supposed to be 0, as they told Ashlie that it was the combination of her and

her X-husband's genes that caused Mara's problems. Please pray for our new

baby. Thanks!!

[Guest guest]

Hi Dianna,

Is Barkovick who is in S.F. an expert on PMG? Just wondering.

Also, We will ask Mara's GI doctor about the procedure of cleaning her out .

I think this might be a good idea as she sometimes has these hard clogs come out

and she is always loose since she takes Miralax everyday. It makes us wonder

where these hard things come from...kinda gross but..maybe some kind of

obstruction?!

Thanks for your help. Will keep you informed about the outcome of all the

appts.

Boise

Message: 4

Date: Thu, 3 Nov 2005 15:42:55 -0500

Subject: Re: re:

No, I sent his MRI's to Barkovich in San Francisco.

re: the emotional seizure thing

[Guest guest]

Dear ,

You have the same attitude as my daughter and I have, that the doctors are not

always right and we still have to come up with our own diagnosis most of the

time!! They always tend to blame it on reflux with Mara too, but we know

better. We know when she acts like she has been lately, it IS a forwarning of

something more serious.

Also , thanks for the info. about the abdominal ultrasound, this will

help a lot as when we have gone to the emergency room thinking Mara may have an

obstruction, they always think we're crazy because her stool is so loose because

she is on Miralax everyday. But when my daughter ups her Miralax, she passes

these hard clods that have to come from somewhere, probably deep in the bowel as

Ethan has had in the past.. This will help when this ever happens again.

Boise

Message: 6

Date: Thu, 03 Nov 2005 23:07:07 -0000

Subject: Re: Digest Number 2061

,

Ethan is always having changes in his health He is very

sensitive to pain. He tends to have a lot of ear infections and

definitely has episodes like this during them. However, he has also

had a lot of unexplained GI issues, and the doctors always want to

blame the episodes on reflux or some other issue like that. It has

been suggested that he could have bowel cramps or twisting, that he

could be constipated (though he always has diarrhea), that his tummy

could be too full (he is g-tube fed by pump), etc. We have noticed

that it happens more frequently before we discover some health

issue, almost like a forewarning. I'll have to watch it more

carefully now, though, and let you know.

Thanks,

Message: 7

Date: Thu, 03 Nov 2005 23:10:39 -0000

Subject: Re: the emotional seizure thing

,

Hate to butt in here, but an x-ray isn't foolproof. My Ethan had an

intussuseption (beginning of a bowel obstruction) that didn't show

on x-ray and during that time he was having diarrhea. However, they

then did an abdominal ultrasound and found it (it was deep in the

bowels). Each kid is different, and I think that being constipated

is not always the only indicator or a clog. Our surgeon suggested

that maybe the BM Ethan was having was past the obstruction and

therefore could still come out.

Just a thought,

[Guest guest]

Yes, Barkovich is an expert on PMG! we have a neurology appt. on Tues. with his

reg. neurologist. We'll see what is said.

Dianna

re: the emotional seizure thing

[Guest guest]

Dear groups,

Just wanted to update you as I promised I would do for those of you who were

so kind to answer with suggestions.

Mara had her appt. with the urologist yesterday. Her sonogram was good, no

problems with kidneys. He did say he thought she was having bladder spasms so

he put her on Detrol La and told Ashlie to cath her more often if she needs to

be. She is now cathing her every 4 hours during the day. He is taking her off

the furodantin (Macrodantin) which was a med. she was on as a precaution to keep

her from getting bladder infections and said that if she gets an infection now,

he will give her something to infuse into the bladder after she caths her at

night and it will remain in the bladder all night. Maybe the bladder spasms

were causing the crying every day, I don't know. We have appts. with the neuro

(on Wed.) and her ENT (on Thurs.) so we'll continue to try to figure it all out.

Will keep you all informed as we go along. Any suggestions would be

appreciated.

Thanks,

Boise, grandma to Mara and mom to Ashlie who will be 25 yrs. old tomorrow,

Nov. 6th.