Anyone else with SMA have hydrocephalus or seizures?

[Guest guest]

Emma was diagnosed with ventriculomegaly (internal hydrocephalus) at

her 20-week ultrasound, and she had a V.P. shunt implanted two days

after she was born. She has not had any complications since then.

Emma had yet another ride in an ambulance a few days ago after having

her third seizure. After having her first two about a week apart

almost a year ago, we put her on Trileptal, an anti-seizure medicine.

She was seizure free for the entire time that she was on the

medicine. We started weaning her off of it about 4 1/2 weeks ago, and

she had her seizure about 5 days after her last dose.

She was diagnosed with SMA about 6 months ago (just before she turned

two,) but she has been exhibiting symptoms since before she turned

one - everyone was blaming her weakness on the hydrocephalus. We

wanted her off of the Trileptal because there was no visible cause

for the seizures (i.e. no epilepsy) and if there was a chance that

she had outgrown whatever was causing the seizures, it would be much

better for her to be off of the medicine. Trileptal (which is

considered the anti-seizure medicine with the fewest nasty side

effects) still weakens the entire body and causes many mild SMA-like

symptoms.

During the 4 weeks that we were weaning Emma off of it, we all

noticed that she was getting noticeably stronger. I am pissed because

now we have to put her back on it.

I apologize for the rant - but is anyone else going through this?

I remember asking the neurologist why we had to fight one major

medical battle after another, and how could there be so many horrible

coincidences. He guessed that the damage in her genes is at a

location that is causing all of these things. If that's true, I'd

imagine that someone else with SMA has other, similar problems - or

is Emma just this unlucky?

[Guest guest]

Thanks.

Yes, she was - Sept 2nd.

http://www.bristoldyno.com/emma/

>

>

> In a message dated 3/3/2006 10:35:59 PM Eastern Standard Time,

> bristold@... writes:

>

> If that's true, I'd

> imagine that someone else with SMA has other, similar problems -

or

> is Emma just this unlucky?

>

>

>

> I'm sorry I have no information on the subject - just wanted to

offer a

> virtual hug. Was Miss Emma a September baby too?

>

>

> Amy

> Wife to Will 11/3/95

> Mama to Olivia Isabelle 9/18/03 - she's two!

> http://www.babiesonline.com/babies/o/oliviathegreat/

> Phineas Maximilian 11/30/05 - he's here!

> http://babiesonline.com/babies/m/mama20305/

>

>

>

>

>

[Guest guest]

I can't help you with this question myself I just want to pass on a

message I tell everyone who is having troubles finding the answer

needed. Go to as many different doctors or clinics as you need don't

stick with 1 or 2 or 5 doctors if you are not getting anywhere. I went

through a 22 year battle trying to find out what was wrong with me (SMA

Type III). I kept taking the doctor's mis-diagnosis that I felt were

wrong and lived with it until I was told different. I went everywhere

Finlay the Mayo Clinic found out and it was a very simple find for

them.

My Wife and I are going through a similar process with our son now and

we are not giving up until we find the right doctor.

I am sure you are doing the same I just want to say keep fighting I

have found a lot of ignorant doctors out there so good luck and I hope

you find the help you need.

Terry

[Guest guest]

Not me ..... SMA type II - diagnosed in 1967, born 1964.

Angie

On Friday 03 March 2006 22:35, wrote:

> Emma was diagnosed with ventriculomegaly (internal hydrocephalus) at

> her 20-week ultrasound, and she had a V.P. shunt implanted two days

> after she was born. She has not had any complications since then.

>

> Emma had yet another ride in an ambulance a few days ago after having

> her third seizure. After having her first two about a week apart

> almost a year ago, we put her on Trileptal, an anti-seizure medicine.

> She was seizure free for the entire time that she was on the

> medicine. We started weaning her off of it about 4 1/2 weeks ago, and

> she had her seizure about 5 days after her last dose.

>

> She was diagnosed with SMA about 6 months ago (just before she turned

> two,) but she has been exhibiting symptoms since before she turned

> one - everyone was blaming her weakness on the hydrocephalus. We

> wanted her off of the Trileptal because there was no visible cause

> for the seizures (i.e. no epilepsy) and if there was a chance that

> she had outgrown whatever was causing the seizures, it would be much

> better for her to be off of the medicine. Trileptal (which is

> considered the anti-seizure medicine with the fewest nasty side

> effects) still weakens the entire body and causes many mild SMA-like

> symptoms.

>

> During the 4 weeks that we were weaning Emma off of it, we all

> noticed that she was getting noticeably stronger. I am pissed because

> now we have to put her back on it.

>

> I apologize for the rant - but is anyone else going through this?

>

> I remember asking the neurologist why we had to fight one major

> medical battle after another, and how could there be so many horrible

> coincidences. He guessed that the damage in her genes is at a

> location that is causing all of these things. If that's true, I'd

> imagine that someone else with SMA has other, similar problems - or

> is Emma just this unlucky?

>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>