Secretions and Retching (lovely, eh?)

[Guest guest]

I hadn't heard of the Botox but we have discussed the meds to decrease

secretions. Our ENT was hesitant about Robonol (not sure how it's spelled)

because although it would decrease secretions it would also make them thicker

and therefore even harder to clear. Have any of you found that to be true?

I'm also curious if other kids with pmg have retching problems. Calvin had the

Nissen surgery and g-tube placed and about a week later he started to retch

uncontrollably and by the third week he'd broken thru the Nissen fundoplication.

He is now on a J-tube to decrease the retching and takes Neurontin (which is for

epilepsy but the side effect is it controls retching) and it keeps it under

control. We haven't redone the Nissen because we're afraid we'd end up with the

same result again.

I have found some research showing that kids with neurological impairments can

have severe retching problems after having the Nissen done. Have any of you

experienced this as well? If so how do you manage the retching?

Kara Dedert

________________________________

To: polymicrogyria

Sent: Monday, October 31, 2011 11:36 AM

Subject: Re: BFPP/BPP?

 

Do kids who aspriate frequently ever get Botox injections in their salivary

glands, or take the medications for excessive drooling? It might help. I know

kids who have CP who wind up doing this for similar reasons.

Thea

( :

Re: BFPP/BPP?

I didn't realize that pneumonia was a complication of PMG and wonder how

they would be related - anyone know? Our daughter had a severe bout of

pneumonia at 4 years of age but thankfully recovered and hasn't had

another one since.

>

> Thanks you guys. Catrina, I haven't looked at that article in a long time.

> So between that and what said it makes sense, I guess. Since he has

> the malformation all around that's the main diagnosis or the way to

> give it

> a name.

> And , you're right. We try to focus on all the great things Luke can

> do that we didn't think he'd be able to do. I like to read about his pmg,

> though, just to stay as informed as possible. I haven't kept as close

> of an

> eye on stuff about the perisylvian area because I thought that didn't

> affect

> us. Now I will.

> Thanks, Ladies!!

> On Oct 28, 2011 7:29 PM, " Catrina Byrge " <catrina1118@...

> <mailto:catrina1118%40gmail.com>>; wrote:

>

> > Hi Mel,

> >

> > I thought I would share an article from NIH which has the most

> information

> > that I have seen in one place. There's a lot of medical jargon as it

> is a

> > scholarly article but there is a breakdown of the types and even some

> > diagrams of what each type sort of looks like, etc. I think there is

> a lot

> > of overlap so I'm sure it makes it harder to say definitively.

> >

> > Hope this helps:

> >

> > http://www.ncbi.nlm.nih.gov/books/NBK1329/

> >

> > Catrina -Brie's Gram

> >

> > On Fri, Oct 28, 2011 at 1:16 PM, mel.rush@...

> <mailto:mel.rush%40ymail.com>; <melrush75@...

> <mailto:melrush75%40gmail.com>;

> > >wrote:

> >

> > > **

> > >

> > >

> > > I have a question. My 19 month old son was diagnosed w/ Bilateral

> > > Frontoparietal PMG when I was pregnant. We had an MRI today

> because his

> > head

> > > size is continuing to increase rapidly. While we were looking over the

> > MRI

> > > with the surgeon - I noticed on the notes on his MRI that it said that

> > the

> > > perisylvian areas are affected as well. I assumed that since he was

> > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name

> of his

> > > malformation that the perisylvian areas weren't affected. It probably

> > > doesn't really matter in the grand scheme of things but I wanted

> to see

> > if

> > > anyone can shed some light on this before I talk to our neuro. Is

> there a

> > > difference between BFPP and BPP? From the research I've done - it

> doesn't

> > > look like it changes his diagnosis at all...I'm just curious.

> > > Thanks for any help you can give me!

> > >

> > >

> > >

> >

> >

> >