Re: Medications for PMG kids

[Guest guest]

Hello there,

My daughter is under 3 meds.: Lamictal, Revotril and Depakine.

Hope the best for all,

Best Regards,

Lina Kurdi

> We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>

> Thanks!

> Catrina

>

>

>

>

> TODAY(Beta) • Powered by Yahoo!

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year.

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[Guest guest]

Forgot to add

Prilosec for reflux

Laxative

Sent from my iPad

> We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>

> Thanks!

> Catrina

>

>

>

>

> TODAY(Beta) • Powered by Yahoo!

> Those who missed out on Facebook riches

> Several people turned down chances to join the company and so won't cash in on

millions.

> Privacy Policy

[Guest guest]

9 year old Lindsey - Keppra, Valium and diastat ast needed.

 

Bonnie

>________________________________

>

>To: " polymicrogyria " <polymicrogyria >

>Sent: Saturday, March 10, 2012 4:13 PM

>Subject: Re: Medications for PMG kids

>

>

> 

>Seizure: phenobarbital, trileptal

>Spasms: topomax, B6

>

>Sent from my iPad

>

>

>

>> We need your help. If your child is on any medications or supplements, can

you please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>>

>> Thanks!

>> Catrina

>>

>>

>>

>>

>> TODAY(Beta) • Powered by Yahoo!

>> Those who missed out on Facebook riches

>> Several people turned down chances to join the company and so won't cash in

on millions.

>> Privacy Policy

>

>

[Guest guest]

LINDSEY 9 years old----KEPPRA - 1 ml in a.m. and 6 ml in p.m. no known side

effects other than a little grogginess in the beginning.   VALIUM is 2.5 ml at

bedtime for muscle spasticity and sleeping..

 

Bonnie

>________________________________

>

>To: " polymicrogyria " <polymicrogyria >

>Sent: Saturday, March 10, 2012 7:39 PM

>Subject: Re: Medications for PMG kids

>

>

> 

>9 year old Lindsey - Keppra, Valium and diastat ast needed.

>

> 

>Bonnie

>

>>________________________________

>>

>>To: " polymicrogyria " <polymicrogyria >

>>Sent: Saturday, March 10, 2012 4:13 PM

>>Subject: Re: Medications for PMG kids

>>

>>

>> 

>>Seizure: phenobarbital, trileptal

>>Spasms: topomax, B6

>>

>>Sent from my iPad

>>

>>

>>

>>> We need your help. If your child is on any medications or supplements, can

you please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>>>

>>> Thanks!

>>> Catrina

>>>

>>>

>>>

>>>

>>> TODAY(Beta) • Powered by Yahoo!

>>> Those who missed out on Facebook riches

>>> Several people turned down chances to join the company and so won't cash in

on millions.

>>> Privacy Policy

>>

>>

[Guest guest]

Trileptal. Melatonin. Robinul.

Thick-it

As needed valium.diastat.ativan

Sent from my Droid Charge on Verizon 4GLTE

- Re: Medications for PMG kids

>

>

> 

>Seizure: phenobarbital, trileptal

>Spasms: topomax, B6

>

>Sent from my iPad

>

>

>

>> We need your help. If your child is on any medications or supplements, can

you please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>>

>> Thanks!

>> Catrina

>>

>>

>>

>>

>> TODAY(Beta) • Powered by Yahoo!

>> Those who missed out on Facebook riches

>> Several people turned down chances to join the company and so won't cash in

on millions.

>> Privacy Policy

>

>

[Guest guest]

Also botox every 3 months

Sent from my Droid Charge on Verizon 4GLTE

- Medications for PMG kids

>

>

>

> We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>

> Thanks!

> Catrina

>

>

[Guest guest]

also Periactin (cyproheptadine) to boost his appetite. It worked and also

made him very tired while adjusting to the med. We were trying to avoid

getting him a g-tube which he needed in the end.

> **

>

>

> Also botox every 3 months

>

>

> Sent from my Droid Charge on Verizon 4GLTE

>

> - Medications for PMG kids

>

> >

> >

> >

> > We need your help. If your child is on any medications or supplements,

> can you please reply? We will use this information to build a Medications

> page at www.pmgawareness.org. Your information will be an invaluable help

> to all those who need information about medications and supplements for PMG.

> >

> > Thanks!

> > Catrina

> >

> >

[Guest guest]

My son is taking liquid Keppra, Lamictal, and Vimpat.

To: polymicrogyria

From: catrina1118@...

Date: Sat, 10 Mar 2012 21:18:42 +0000

Subject: Medications for PMG kids

We need your help. If your child is on any medications or supplements, can

you please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

They sure do, spoke to the neuro about it. With Siera her spasms quite often

start in her throat so afterwards she has alot of wind and it brings the acid

back up her throat, tonight she cried for an hour. I gave her liquid gaviscon

and it helped but she was so upset. Really worried about how many spasms she is

having, shes gone from having 4 or so a day to about 12 yesterday and again

today, the only change we have made is that she had gone down from 1ml of Pred

to 0.5mls daily as she is tapering off, its such a small dose I didn't think it

would be helping but maybe it was.

It breaks my heart to see her suffer like this, shes basiclly having them

hourly.

Hope Drake is doing ok.

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, 11 March 2012 2:25 PM

Subject: Re: Medications for PMG kids

 

Thanks. Now, I know why Drake is crying so much. Did not know the spasms

effect the reflux. Julissa

Sent from my iPad

> Would it also be helpful to day what the meds are for and any noticeable side

effects? i have just in case.

>

> Seizures - Epilim - can make her sleepy

> Clonazepam - for spasms - can make her sleepy

> Vigabactrim for spasms - can cause changes to vision, must be monitored while

on this drug.

> Scopoderm patches - used for excessive drooling/spit, 1/4 of a patch every 3

days, originally used for adults for motion sickness, work really well for the

drooling!

> Liquid Gaviscon - I find this really good as the regular spasms create reflux

and bring acid up her throat which is why she cries after them.. Giving her a

small amount she instantly stops crying as it lines her throat.

> Losec - for reflux

> Chloral Hydrate - used for sleeping, she falls asleep within 10mins of having

this.

>

> Hope this helps

>

> ________________________________

>

> To: polymicrogyria

> Sent: Sunday, 11 March 2012 10:18 AM

> Subject: Medications for PMG kids

>

>

>

> We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>

> Thanks!

> Catrina

>

>

[Guest guest]

Oh yes that reminds me too.

Midazalam  - emergency dose for spasms that just won't stop. Works instantly

but she normally sleeps an hour or two afterwards as makes her groggy.

Lactulose syrup - 10mls daily to keep her regular.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, 11 March 2012 2:39 PM

Subject: Re: Medications for PMG kids

 

9 year old Lindsey - Keppra, Valium and diastat ast needed.

 

Bonnie

>________________________________

>

>To: " polymicrogyria " <polymicrogyria >

>Sent: Saturday, March 10, 2012 4:13 PM

>Subject: Re: Medications for PMG kids

>

>

> 

>Seizure: phenobarbital, trileptal

>Spasms: topomax, B6

>

>Sent from my iPad

>

>

>

>> We need your help. If your child is on any medications or supplements, can

you please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

>>

>> Thanks!

>> Catrina

>>

>>

>>

>>

>> TODAY(Beta) • Powered by Yahoo!

>> Those who missed out on Facebook riches

>> Several people turned down chances to join the company and so won't cash in

on millions.

>> Privacy Policy

>

>

[Guest guest]

Hi Catrina....

For Seizures is on: Zonegran and Tranzene

For Emergency seizures: Rectal Diastat

For severe anxiety: Liquid Valium

For reflux: Pepcid and Prevacid

For spasms: Baclofen

For respiratory: Pulmicort, xopenex, and hypertonic Saline (all of these are

nebulized treatments)

He also has " The Vest " by Hilrom and its an important part of airway

clearance...he has 3 to 4 vest treatments a day.

He is fed 100% g tube and takes " Neocate, Jr. " unflavored formula for complete

nutrition.

Have a wonderful day!!!

Hasselberger

Mom to , age 14, bilateral diffuse PMG, 80%, caused by CMV virus

jhasselberger@...

raisingdanielhasselberger.blogspot.com

Have a great day....

________________________________

To: polymicrogyria

Sent: Sat, March 10, 2012 4:18:42 PM

Subject: Medications for PMG kids

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

What about listing the doctors that are helpful and comfortable with PMG? This

has been on of my worse battles.Diane

[Guest guest]

My daughter, 10months, is on:

Prevacid: acid reflux

Simply thick: for aspiration

Arbuterol inhaler: persistent cough & occasional wheezing

Sent from my iPad

> Hi Catrina....

>

> For Seizures is on: Zonegran and Tranzene

> For Emergency seizures: Rectal Diastat

> For severe anxiety: Liquid Valium

> For reflux: Pepcid and Prevacid

> For spasms: Baclofen

> For respiratory: Pulmicort, xopenex, and hypertonic Saline (all of these are

> nebulized treatments)

>

> He also has " The Vest " by Hilrom and its an important part of airway

> clearance...he has 3 to 4 vest treatments a day.

>

> He is fed 100% g tube and takes " Neocate, Jr. " unflavored formula for complete

> nutrition.

>

> Have a wonderful day!!!

>

> Hasselberger

> Mom to , age 14, bilateral diffuse PMG, 80%, caused by CMV virus

>

> jhasselberger@...

>

> raisingdanielhasselberger.blogspot.com

> Have a great day....

>

> ________________________________

>

> To: polymicrogyria

> Sent: Sat, March 10, 2012 4:18:42 PM

> Subject: Medications for PMG kids

>

> We need your help. If your child is on any medications or supplements, can you

> please reply? We will use this information to build a Medications page at

> www.pmgawareness.org. Your information will be an invaluable help to all those

> who need information about medications and supplements for PMG.

>

> Thanks!

> Catrina

>

>

[Guest guest]

Emm takes trazodone & clonidine for sleep. Not miracle combo but helps some.

~Jodi

> Thank you to all who contributed to our website's page for Medications related

to PMG.

>

> We had a lot of responses, and no surprise that most were related to seizures.

>

> I was surprised not to see any mentions for sleep and very few vitamins,

herbal supplements, or homeopathic supplements.

>

> It's not too late, though. If you want to add more, please feel free!

>

> Thank you all, again, for your support!

>

> Catrina

>

>

[Guest guest]

hi Catrina, i think i mentioned chloral hydrate for sleep, without this she

would not get any. Also Phenagan helps but only relaxes her as the chloral will

actually sedate her. In the end the spasms get her.

cheers

Kat

-original message-

Subject: Medications for PMG kids

Date: 12/03/2012 2:44 pm

Thank you to all who contributed to our website's page for Medications related

to PMG.

We had a lot of responses, and no surprise that most were related to seizures.

I was surprised not to see any mentions for sleep and very few vitamins, herbal

supplements, or homeopathic supplements.

It's not too late, though. If you want to add more, please feel free!

Thank you all, again, for your support!

Catrina

[Guest guest]

*Oh you are right! I thought that I had gotten an email about that but it

somehow got lost and I couldn't find it! Thanks for resending to me!*

*

*

*I'm getting ooooooooooooooolllllllllllldddd:)*

*

*

> **

>

>

> hi Catrina, i think i mentioned chloral hydrate for sleep, without this

> she would not get any. Also Phenagan helps but only relaxes her as the

> chloral will actually sedate her. In the end the spasms get her.

> cheers

> Kat

>

>

> -original message-

> Subject: Medications for PMG kids

>

> Date: 12/03/2012 2:44 pm

>

> Thank you to all who contributed to our website's page for Medications

> related to PMG.

>

> We had a lot of responses, and no surprise that most were related to

> seizures.

>

> I was surprised not to see any mentions for sleep and very few vitamins,

> herbal supplements, or homeopathic supplements.

>

> It's not too late, though. If you want to add more, please feel free!

>

> Thank you all, again, for your support!

>

> Catrina

>

>

>

[Guest guest]

Hi Everyone,

I haven't seen any seizures in my daughter, 2 yrs old, BFPP, but the other night

around 5am she woke and I gave her a bottle (this is our normal routine),

anyways she had a minute where she seemed like she was shivering. It was not

seizure like, (ie. convulsive) rather it seemed to be mostly her upper body that

had a shiver run through, that said she was still half asleep.

She usually wakes/stirs around 5 am and I take the opportunity to give her a

bottle, more to get calories into her. She falls right back to sleep

afterwards. Is is just that the shiver part seemed different from any other

time. Any thoughts?

Sent from my iPad

> *Oh you are right! I thought that I had gotten an email about that but it

> somehow got lost and I couldn't find it! Thanks for resending to me!*

> *

> *

> *I'm getting ooooooooooooooolllllllllllldddd:)*

> *

> *

>

>

>> **

>>

>>

>> hi Catrina, i think i mentioned chloral hydrate for sleep, without this

>> she would not get any. Also Phenagan helps but only relaxes her as the

>> chloral will actually sedate her. In the end the spasms get her.

>> cheers

>> Kat

>>

>>

>> -original message-

>> Subject: Medications for PMG kids

>>

>> Date: 12/03/2012 2:44 pm

>>

>> Thank you to all who contributed to our website's page for Medications

>> related to PMG.

>>

>> We had a lot of responses, and no surprise that most were related to

>> seizures.

>>

>> I was surprised not to see any mentions for sleep and very few vitamins,

>> herbal supplements, or homeopathic supplements.

>>

>> It's not too late, though. If you want to add more, please feel free!

>>

>> Thank you all, again, for your support!

>>

>> Catrina

>>

>>

>>

>

>

>

[Guest guest]

Lol thats ok i knw the feeling haha. Thanks for doing this!

-original message-

Subject: Re: Medications for PMG kids

Date: 12/03/2012 3:56 pm

*Oh you are right! I thought that I had gotten an email about that but it

somehow got lost and I couldn't find it! Thanks for resending to me!*

*

*

*I'm getting ooooooooooooooolllllllllllldddd:)*

*

*

> **

>

>

> hi Catrina, i think i mentioned chloral hydrate for sleep, without this

> she would not get any. Also Phenagan helps but only relaxes her as the

> chloral will actually sedate her. In the end the spasms get her.

> cheers

> Kat

>

>

> -original message-

> Subject: Medications for PMG kids

>

> Date: 12/03/2012 2:44 pm

>

> Thank you to all who contributed to our website's page for Medications

> related to PMG.

>

> We had a lot of responses, and no surprise that most were related to

> seizures.

>

> I was surprised not to see any mentions for sleep and very few vitamins,

> herbal supplements, or homeopathic supplements.

>

> It's not too late, though. If you want to add more, please feel free!

>

> Thank you all, again, for your support!

>

> Catrina

>

>

>

[Guest guest]

I've been reading that a lot of you give you kids a drug for Spasms. Is this

related to reflux? What is it exactly? My son has terrible reflux and gas at

night. He is on an adult does of the strongest reflux meds but swallows all

night and at least once a week wakes up screaming. We're not sure why and don't

know what to do for him. I used to think it was always gas but sometimes it is

not. What is Gaviscon?

Thanks!

To: polymicrogyria

From: cutekat@...

Date: Sun, 11 Mar 2012 11:48:15 +1300

Subject: Re: Medications for PMG kids

Would it also be helpful to day what the meds are for and any noticeable

side effects? i have just in case.

Seizures - Epilim - can make her sleepy

Clonazepam - for spasms - can make her sleepy

Vigabactrim for spasms - can cause changes to vision, must be monitored while on

this drug.

Scopoderm patches - used for excessive drooling/spit, 1/4 of a patch every 3

days, originally used for adults for motion sickness, work really well for the

drooling!

Liquid Gaviscon - I find this really good as the regular spasms create reflux

and bring acid up her throat which is why she cries after them. Giving her a

small amount she instantly stops crying as it lines her throat.

Losec - for reflux

Chloral Hydrate - used for sleeping, she falls asleep within 10mins of having

this.

Hope this helps

________________________________

To: polymicrogyria

Sent: Sunday, 11 March 2012 10:18 AM

Subject: Medications for PMG kids

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

Karla,

Try to use your mommy gut and not to worry so much. I know Nisha does the shiver

at odd time maybe it is a sensory thing. I don't think it's a seizure.

Diane mom Nisha lh seizures Unilat PMG

Sent from Samsung Conquerâ„¢ 4G

Karla Mortara wrote:

Hi Everyone,

I haven't seen any seizures in my daughter, 2 yrs old, BFPP, but the other night

around 5am she woke and I gave her a bottle (this is our normal routine),

anyways she had a minute where she seemed like she was shivering. It was not

seizure like, (ie. convulsive) rather it seemed to be mostly her upper body that

had a shiver run through, that said she was still half asleep.

She usually wakes/stirs around 5 am and I take the opportunity to give her a

bottle, more to get calories into her. She falls right back to sleep afterwards.

Is is just that the shiver part seemed different from any other time. Any

thoughts?

Sent from my iPad

> *Oh you are right! I thought that I had gotten an email about that but it

> somehow got lost and I couldn't find it! Thanks for resending to me!*

> *

> *

> *I'm getting ooooooooooooooolllllllllllldddd:)*

> *

> *

>

>

>> **

>>

>>

>> hi Catrina, i think i mentioned chloral hydrate for sleep, without this

>> she would not get any. Also Phenagan helps but only relaxes her as the

>> chloral will actually sedate her. In the end the spasms get her.

>> cheers

>> Kat

>>

>>

>> -original message-

>> Subject: Medications for PMG kids

>>

>> Date: 12/03/2012 2:44 pm

>>

>> Thank you to all who contributed to our website's page for Medications

>> related to PMG.

>>

>> We had a lot of responses, and no surprise that most were related to

>> seizures.

>>

>> I was surprised not to see any mentions for sleep and very few vitamins,

>> herbal supplements, or homeopathic supplements.

>>

>> It's not too late, though. If you want to add more, please feel free!

>>

>> Thank you all, again, for your support!

>>

>> Catrina

>>

>>

>>

>

>

>

[Guest guest]

Diane,

Thanks for the feedback, I think I just needed to feel some reassurance and pmg

support.

karla

Sent with Verizon Mobile Email

---Original Message---

From: polymicrogyria

Sent: 3/12/2012 10:18 am

To: polymicrogyria

Subject: Re: Medications for PMG kids

Karla, Try to use your mommy gut and not to worry so much. I know Nisha does the

shiver at odd time maybe it is a sensory thing. I don't think it's a seizure.

Diane mom Nisha lh seizures Unilat PMG Sent from Samsung Conquerâ„¢ 4G Karla

Mortara wrote: Hi Everyone, I haven't seen any seizures

in my daughter, 2 yrs old, BFPP, but the other night around 5am she woke and I

gave her a bottle (this is our normal routine), anyways she had a minute where

she seemed like she was shivering. It was not seizure like, (ie. convulsive)

rather it seemed to be mostly her upper body that had a shiver run through, that

said she was still half asleep. She usually wakes/stirs around 5 am and I take

the opportunity to give her a bottle, more to get calories into her. She falls

right back to sleep afterwards. Is is just that the shiver part seemed different

from any other time. Any thoughts? Sent from my iPad On Mar 11, 2012, at 10:56

PM, Catrina Byrge wrote: > *Oh you are right! I thought

that I had gotten an email about that but it > somehow got lost and I couldn't

find it! Thanks for resending to me!* > * > * > *I'm getting

ooooooooooooooolllllllllllldddd:)* > * > * > On Sun, Mar 11, 2012 at 10:39 PM,

wrote: > >> ** >> >> >> hi Catrina, i think i mentioned

chloral hydrate for sleep, without this >> she would not get any. Also Phenagan

helps but only relaxes her as the >> chloral will actually sedate her. In the

end the spasms get her. >> cheers >> Kat >> >> >> -original message- >>

Subject: Medications for PMG kids >> From: " briesgram "

>> Date: 12/03/2012 2:44 pm >> >> Thank you to all who

contributed to our website's page for Medications >> related to PMG. >> >> We

had a lot of responses, and no surprise that most were related to >> seizures.

>> >> I was surprised not to see any mentions for sleep and very few vitamins,

>> herbal supplements, or homeopathic supplements. >> >> It's not too late,

though. If you want to add more, please feel free! >> >> Thank you all, again,

for your support! >> >> Catrina >> >> >> > > > [Non-text portions of this

message have been removed] > > > > ------------------------------------ > >

[Guest guest]

Hi, have you also elevated his mattress slightly? You can just put books, etc.

under the head of it. Simple, but really helps.

Our daughter also seemed to be having gastric issues while the infantile spasms

were happening. Once we medicated her for the spasms (we used ACTH injections,

but since then more docs have come out in support of Vigabitrin), the gastric

stuff seemed better.

Have you had allergy testing, etc? Swallow study?

Best of luck,

Thea

Medications for PMG kids

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

Yes, we elevate his mattress, it does help. I'm just not sure what spasms are

and if that's what he is having. Do you mean seizures?

To: polymicrogyria

From: theasprague@...

Date: Mon, 12 Mar 2012 11:00:00 -0400

Subject: Re: Medications for PMG kids

Hi, have you also elevated his mattress slightly? You can just put books, etc.

under the head of it. Simple, but really helps.

Our daughter also seemed to be having gastric issues while the infantile spasms

were happening. Once we medicated her for the spasms (we used ACTH injections,

but since then more docs have come out in support of Vigabitrin), the gastric

stuff seemed better.

Have you had allergy testing, etc? Swallow study?

Best of luck,

Thea

Medications for PMG kids

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

Hi

The drugs for infantile spasms (type of seizures) are different from the meds

for reflux, but the spams do irritate her reflux and cause gastric issues. Siera

has bad reflux also and is also on an adult dose of losec. Liquid Gaviscon is

for heartburn, it helps ease the pain from the acid coming back up their throats

by lining the throat. We usually give it after bad spasms or before bed, it

helps alot.

Siera has also had ACTH treatment and then the spasms came back so she is also

on Vigabactrim and a lose dose of steriods, but we are still getting quite a

few, they have been very hard to control.

She also cries after swallowing sometimes, mainly when she has alot of saliva

which she gets after spasms. Doc doesn't think she is aspirating, said she has

trapped wind and also the Vigabactrim has made her consitpated which also

creates alot of wind. So maybe the screaming comes from that wind or the excess

saliva when swallowing. You could ask for a swallowing test to be done. Does

your son have excess saliva/drooling?

Hope this helps.

Kat

________________________________

To: polymicrogyria

Sent: Tuesday, 13 March 2012 1:26 AM

Subject: RE: Medications for PMG kids

I've been reading that a lot of you give you kids a drug for Spasms.  Is this

related to reflux?  What is it exactly?  My son has terrible reflux and gas at

night.  He is on an adult does of the strongest reflux meds but swallows all

night and at least once a week wakes up screaming.  We're not sure why and don't

know what to do for him.  I used to think it was always gas but sometimes it is

not.  What is Gaviscon?

Thanks!

To: polymicrogyria

From: cutekat@...

Date: Sun, 11 Mar 2012 11:48:15 +1300

Subject: Re: Medications for PMG kids

 

   

     

     

      Would it also be helpful to day what the meds are for and any noticeable

side effects? i have just in case.

Seizures - Epilim  - can make her sleepy

Clonazepam - for spasms - can make her sleepy

Vigabactrim for spasms - can cause changes to vision, must be monitored while on

this drug.

Scopoderm patches - used for excessive drooling/spit, 1/4 of a patch every 3

days, originally used for adults for motion sickness, work really well for the

drooling!

Liquid Gaviscon - I find this really good as the regular spasms create reflux

and bring acid up her throat which is why she cries after them. Giving her a

small amount she instantly stops crying as it lines her throat.

Losec - for reflux

Chloral Hydrate - used for sleeping, she falls asleep within 10mins of having

this.

Hope this helps

________________________________

To: polymicrogyria

Sent: Sunday, 11 March 2012 10:18 AM

Subject: Medications for PMG kids

 

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina

[Guest guest]

Yes, he had a swallow study done and did aspirate all thickness of liquid we

re-tested him this sept. after a year of swallow therapy and it didn't show any

aspiration. He drools buckets though. He definitely does have gas too. I'm

going to ask about the Gaviscon.

Thanks so much!

To: polymicrogyria

From: cutekat@...

Date: Tue, 13 Mar 2012 07:42:08 +1300

Subject: Re: Medications for PMG kids

Hi

The drugs for infantile spasms (type of seizures) are different from the meds

for reflux, but the spams do irritate her reflux and cause gastric issues. Siera

has bad reflux also and is also on an adult dose of losec. Liquid Gaviscon is

for heartburn, it helps ease the pain from the acid coming back up their throats

by lining the throat. We usually give it after bad spasms or before bed, it

helps alot.

Siera has also had ACTH treatment and then the spasms came back so she is also

on Vigabactrim and a lose dose of steriods, but we are still getting quite a

few, they have been very hard to control.

She also cries after swallowing sometimes, mainly when she has alot of saliva

which she gets after spasms. Doc doesn't think she is aspirating, said she has

trapped wind and also the Vigabactrim has made her consitpated which also

creates alot of wind. So maybe the screaming comes from that wind or the excess

saliva when swallowing. You could ask for a swallowing test to be done. Does

your son have excess saliva/drooling?

Hope this helps.

Kat

________________________________

To: polymicrogyria

Sent: Tuesday, 13 March 2012 1:26 AM

Subject: RE: Medications for PMG kids

I've been reading that a lot of you give you kids a drug for Spasms. Is this

related to reflux? What is it exactly? My son has terrible reflux and gas at

night. He is on an adult does of the strongest reflux meds but swallows all

night and at least once a week wakes up screaming. We're not sure why and don't

know what to do for him. I used to think it was always gas but sometimes it is

not. What is Gaviscon?

Thanks!

To: polymicrogyria

From: cutekat@...

Date: Sun, 11 Mar 2012 11:48:15 +1300

Subject: Re: Medications for PMG kids

Would it also be helpful to day what the meds are for and any noticeable

side effects? i have just in case.

Seizures - Epilim - can make her sleepy

Clonazepam - for spasms - can make her sleepy

Vigabactrim for spasms - can cause changes to vision, must be monitored while on

this drug.

Scopoderm patches - used for excessive drooling/spit, 1/4 of a patch every 3

days, originally used for adults for motion sickness, work really well for the

drooling!

Liquid Gaviscon - I find this really good as the regular spasms create reflux

and bring acid up her throat which is why she cries after them. Giving her a

small amount she instantly stops crying as it lines her throat.

Losec - for reflux

Chloral Hydrate - used for sleeping, she falls asleep within 10mins of having

this.

Hope this helps

________________________________

To: polymicrogyria

Sent: Sunday, 11 March 2012 10:18 AM

Subject: Medications for PMG kids

We need your help. If your child is on any medications or supplements, can you

please reply? We will use this information to build a Medications page at

www.pmgawareness.org. Your information will be an invaluable help to all those

who need information about medications and supplements for PMG.

Thanks!

Catrina