Re: Thanks for the welcome

[Guest guest]

Prom is how we chart nursing notes for Passive Range Of Motion. It's much

easier to write prom. You probably do this with your child too, I think you

mentioned he had high muscle tone.

Of all the responses I received, I think is the closet match to Mark.

We have not been told what area of the brain is involved wtih Mark. The parents

have not been told. I'm encouraging them to take Mark to see Dr. Dobyns in

Chicago. They just changed insurance so they have to get that straight first.

Then they are going to make an appointment. Mark is fortunate to have great

parents so I know they will do everything they can for him.

I do hope that seizure activitly is not going to continue with Mark. We've only

had those 2 incidents. When started seizing how often did you see

seizures?

Re: Thanks for the welcome

From: BenjaboyD@...

<< The hypertonia is very much improved now that he is getting his PROM on a

regular basis. >>

Carol,

Thanks for writing. What is PROM? I haven't heard this term before.

Joanne, mom to , 1 year, New York

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[Guest guest]

Hi Carol,

My name is and my daughter is 6 months old & weights 19lbs with

PMG. She started having seizures at 7 wks of age. She is currently on

Phenobar and Tegritol. When Kennedy was first born they told us she had

-Dieker syndrome and would live three months to less then two years,

and that she would never do anything. She coos, grasps toys, rolls on her

side and her vision is perfect. We had to go to Dobyns to get the correct

diagnosis. Tell Marks parents that both him and them are in my pray's.

Ohio

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[Guest guest]

, I will pass on this message to Mark's parents. I will be printing out

most of this email and taking it with me tomorrow night. I am anxious for Mark

to see Dr. Dobyns and they are working on it. Is your baby's picture listed?

I'm going to have to go look at these baby pics and try to get a mental image

when a baby is mentioned. It is so much easier when you have a face to put with

the name. I haven't sent Mark's picture because that would be breaking

confidentiality and I don't want to step over that line. I know his mom will

want it posted as soon as she is online. He is an adorable baby. Mark just

turned 7 months on the 3rd and he weighed 17lb 7oz last check.

He recently had a G.I. bleed so we are still treating him for that.

Which doctor do you think is best for pmg? I noticed some of you talking about

another doctor that starts with a G. Where is he located? I am reading the

book " What to do with your brain injured child " by Glenn Doman. Have you read

it?

Re: Thanks for the welcome

Hi Carol,

My name is and my daughter is 6 months old & weights 19lbs with

PMG. She started having seizures at 7 wks of age. She is currently on

Phenobar and Tegritol. When Kennedy was first born they told us she had

-Dieker syndrome and would live three months to less then two years,

and that she would never do anything. She coos, grasps toys, rolls on her

side and her vision is perfect. We had to go to Dobyns to get the correct

diagnosis. Tell Marks parents that both him and them are in my pray's.

Ohio

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[Guest guest]

<< When started seizing how often did you see seizures? >>

Carol,

When started seizing it just progressively got worse. I figured he

was having a minimum of 200 infantile spasms a day...plus he had facial

twitching constantly which the doctor also thought was seizure activity. He

quickly was lossing any development that he had. Needless to say,

controlling the seizures was very important. is a very different

child now-very responsive-making some slight progress. Only thing now that

we have weaned him from the ACTH he is hypersensitive to stimuli again

(auditory and visual) and will startle. The neuro doesn't consider this a

seizure because it's in response to stimuli. Personally, I don't think it's

a great sign.

Otherwise, has been quite healthy. He has had some minor colds that

didn't bother him a bit. He eats fairly well, has never had any respiratory

problems, and breastfeeds like a champ.

Joanne, New York

[Guest guest]

Carol,

I went to my " what the baby did when " book and checked on what Teddy and his

twin Hunter were doing at 7 months. Hunter was rolling across rooms and out

doorways into other rooms. Teddy was learning to lift his head up for short

periods of time. Yes, our children are developmentally delayed but they do

learn.

Regarding Albuteral, while on it Teddy's hands would tremor for minutes at a

time, now that he's off it he has been fine. I liked how it made him hungry

but I was worried about the drug interaction with Zantac, so he's off it for

now.

Teddy had an EEG and I don't remember them saying it was abnormal, I asked

Dr. Guerrini (a specialist I saw at the Texas convention) about it because

it mentioned that the spindles were of unusually high voltage and Dr.

Guerrini said that was typical for PMG children. It said though there was no

focal slowing or paroxysmal activity.

Regarding TV, many of the children enjoy watching the credits.

Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

He uses sign language, runs around, rides a big wheel,

has trouble chewing & swallowing solid foods,

has 1 identical twin (without PMG), 2 big brothers

and a busy Daddy. We live in CT.

Thanks for the welcome

I want to thank everyone for the warm welcome. I have 42 emails to read

through. I'm sorry I didn't respond to much during the week. I work 15

hour shifts and just collapse when I come home. I don't get very much

sleep and hardly any time to do the things I want to do, like read all that

email.

The baby I care for is a 7 month old boy named Mark. For obvious reasons, I

can't give more information than that. I am copying emails and taking the

information to Marks parents. They are very excited to learn of the support

network you have set up. The only problem is they don't have a computer

with a modem. They are working on it, so maybe they will be online soon. I

know you could help them a great deal. They so badly need to hear some of

the positives about your children. Mark was not expected to live a week.

He was left lying in the hospital and they parents said they felt like the

medical staff was just waiting for him to die. See, I can do a little

nurse bashing myself! You really don't have to worry about that with me.

There are good and bad in every profession.

Mark does not have a specific diagnosis other than PMG in general. We don't

know the extent of the damage, and I really don't think his doctor does

either. They said if he lives, he would be blind, never have teeth, walk,

crawl, interact, etc

The first week Mark was home from the hospital was a tough one. He had not

been held or handled at all in the hospital. He had severe hypertonia of

the lower extremities and his hands were already contractured into tight

little fists. The poor baby was not use to the human touch and was very

agitated when held. I took care of that as quickly as possible. After a

few 15 hour shifts of holding, rocking, singing, etc, Mark began to relax

and within the week, was relaxed and seemed to be use to being held. Now at

7 months, he loves it being cuddled and rocked. He doesn't even mind my bad

singing!

Mark does not have a hx of seizure activity, but...................he had 2

seizures about a month ago. One was on my shift and it was an irretractible

seizure. The parents like to think it was tremors from the albuterol, but I

was not able to stop it. It lasted about 45 seconds. It also happened to

the other nurse on the case. An EEG was done and the parents were told it

was unclusive because his EEG read abnormal, but that was to be expected

with pmg. If it were tremors, we would have been able to stop it by

holdling him. I just hope there is no more. His fontanel was bulging at

the beginning of the week, but is back to normal now.

Back to the things the doc said would never happen.......Mark has 3 teeth

and is cutting his 4th. The doc said he should be blind but I found him to

just shut down with too much stimuli. If I do his visual therapy through

the night, he always responds and is now responding at times during the day.

I turn out all the lights in the room, put him in a vibrating infant seat

(iittle help with the neb/cpt) and turn on the cartoon channel with no

sound. With all other stimuli removed, Mark will look at the tv for about

20 minutes at a time. He turns his head toward the lights. He definitely

can see, he just can't handle a lot of stimuli at once.

Today I held him facing me and he was trying to smile. We are just starting

to see a little interaction once in a while. He was looking right at my

face and I'm sure he was trying to smile. He just can't lift up those

chubby little cheeks yet. We are working on head control at this point, and

Mark will work very nicely with us. He is making subtle progress

I mentioned that his hands were contractured when he came home from the

hospital at 4 months, 3 days old. His hands are now loose and relaxed. The

hypertonia is very much improved now that he is getting his PROM on a

regular basis.

Mark also has bilateral hip dislocation, scoliosis, tachycardia, bradycardia

at times, a rt inguinal hernia. He is on a respirator and continuous pulse

oximetry.

I'm probably rambling here, I am exhausted but get to stay home tonight so I

didn't sleep at all today.

The parents were advised to visit Dr. Dobyns in Chicago so they were excited

when I took the information that one of you sent me about Dr. Dobyns and the

research he is doing.

I can't begin to tell you how much you have all helped this mother already.

Just with the few emails I printed and took her, she is very happy. Being a

rare disorder, she didn't think anybody could really understand what they

are going through. She is anxious to read about your experiences with your

kids and hopes to learn more about her own child.

Mark is a beautiful little boy. I wish I could put a picture of him up, but

that would be a big confidentiality issue. I know once the mom is online,

she will be happy to share Marks picture with you.

I really must get some sleep, but will try to go through all the email

before I do so. Thanks again to everyone for letting me in the group as

Marks nurse. I know this is where all the REAL information is at. I

hope to hear more from all of you.

Carol

[Guest guest]

Mark went to the doctor today. He is 19lb, 4oz and is 7 months old. I

appreciate your response. We work very hard with Mark to stimulate every area.

I will forward this message to the parents. They just joined the group and are

waiting for word from somebody. Hopefully they will be able to join in the

discussion soon.

I will forward this message to them.

thanks again

Carol

Re: Thanks for the welcome

Hi Carol,

My name is and my daughter is 6 months old & weights 19lbs with

PMG. She started having seizures at 7 wks of age. She is currently on

Phenobar and Tegritol. When Kennedy was first born they told us she had

-Dieker syndrome and would live three months to less then two years,

and that she would never do anything. She coos, grasps toys, rolls on her

side and her vision is perfect. We had to go to Dobyns to get the correct

diagnosis. Tell Marks parents that both him and them are in my pray's.

Ohio

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