Marilyn..distances from medical help

[Guest guest]

Hi Marilyn. I can relate with your troubles regarding getting

medical help for your child! The town I live in is has 10,000 people

in and we are 4 hrs from any major center. We do have doctors, but

they are only General Practictioners. Great for broken bones and

minor illnesses...Completely over their heads when it comes to

Jarret's condition! I bring him in for an ear infection and end up

explaining what pachygyria/lissencephaly is!! I can't even get his

doc. to do a requisition form for VPA levels! I have to make a long

distance call to either the neuro or his ped. and for appointments,

his ped. comes in from Winnipeg every four months, which is nice but

Jarret has other services that call for us to go elsewhere.

Needless, to say we are on the road alot.

I am so glad that we decided to get a computer a few years ago,

otherwise I would be feeling very isolated and alone. Not to mention

the fact that I would have missed out on meeting some very special

people.

{{{hugs}}} to all the kiddos

Season's Greetings from Canada

> Jarret's mom who is currently with his respite worker so I'm

able to burn up the cyber wires

*********************

>

> > We didn't know that there was anything wrong

> > with Crystal, until she was 4

> > mos. old. She started presenting with Infantile

> > Spasms. Thank God, her

> > pediatrician immediately sent us to the

> > hospital. After obseving her

> > overnight, the hospital transferred her to

> > Medical Center's Regional

> > Children's Center. Unfortunately, the neuro

> > there was not very informed. She

> > had an MRI done in the 1st hospital she was

> > admitted into. He misread her

> > MRI . She had an EEG done at the 1st hospital.

> > The report from it stated

> > that hypsarrythmia was present. This is

> > indicative of Infantile Spasms. He

> > disregarded that EEG & report. He kept

> > repeating her EEGS every 2 weeks, &

> > insisted that she was having Myoclonus of

> > Infancy. This is a benign

> > condition that babies grow out of. He placed

> > her on phenobarbitol.

> > Phenobarbitol does not work on Infantile

> > Spasms. This did not stop her

> > seizures. It just dampened them down, so that

> > they were harder to detect.

> > She slept almost all of the time. She stopped

> > waking up to nurse. He took a

> > blood level, to determine if she was toxic on

> > the stuff, & then never called

> > me to tell me the results. She WAS toxic. I

> > called her pediatrician & he

> > looked at the results & told me so. He was

> > shocked that the neuro never

> > contacted me. At this point, he sent me to

> > Children's Hospital of

> > Philadelphia. Since it was out of state, I had

> > to go through the ER. They

> > correctly diagnosed her as having Infantile

> > Spasms. They did a second MRI on

> > her. They told me that she had Cerebral

> > Cortical Dysgenesis. Dr. Dobyns is

> > the one who looked at her films later on &

> > told me that she has Bilateral

> > Perisylvian PMG. CHOP took her off of

> > Phenobarbitol & put her on ACTH to

> > stop the Infantile Spasms. Within 5 days she

> > was seizure free. She stayed

> > that way until just before her 3rd birthday.

> > One morning, I found her semi-conscious on her

> > bedroom floor. My mom & I

> > rushed her to the ER. She lost consciousness

> > enroute. She stayed unconscious

> > for about 2 hours. They infused her with

> > glucose water, which helped to

> > revive her. Her neuro at the time ( we're

> > presently on neuro # 4 ) had

> > another EEG done on her. For the 1st time in 2

> > 1/2 years, it showed

> > extensive seizure activity. He started her on

> > lamictal. She broke out in a

> > rash within the 1st month. At that point I

> > changed neuros, because he wanted

> > to place her back on the lamictal once the rash

> > cleared up & I didn't !!! A

> > rash from lamictal can turn necrotic. A

> > necrotic rash can be fatal. I just

> > wasn't willing to put my daughter's life on the

> > line. The new neuro ( he's

> > the one that we're presently using ) started

> > her on Depakote. Her seizures

> > started to present as staring spells. Since

> > then, she's been on quite a few

> > seizure meds. She now has staring spells &

> > tonic seizures ( the falling

> > down ones I described to Suvi ). I don't think

> > the meds are doing much at

> > all to help her.

> > What kind of seizures is Jorden having ???

> > Phenobarbitol only works on

> > certain seizure types...

> >

> > I wish you all the best in finding the right

> > meds to help your son.

> >

> > Give him a great big {{{ HUG & KISS }}} for

> > us...

> >

> > Take care & be well...

> >

> > - mommy of my Angel Princess, Crystal

> > Aquielle - almost 5 years old -

> > BPP - Grade 3...

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

> >