Re: Therapies - message to all

[Guest guest]

I'm grandma to is with bilateral perisylvian PMG. She is turning 3 in July.

I am so frustrated as we seem to wait on endless list to start therapies. We had

to fight long and hard to get a referral and eventual diagnosis from our

peditrician. She just tried to tell us that her drooling was normal, her lack of

speech was nothing to be concerned about.... The left side weakness we saw was

invisible to a trained medical eye..... Grrr sorry for my rants.

My daughter while calling again to see where we were on the list was called

" dragon lady " by the medical staff for being persistent in pursuit of therapy.

I'm a special education teacher and so we do our best and providing our own

stimulation during our " wait time " . I would love a concise list of available

therapies so that we can begin pursuit outside the local medical profession. I

feel we are wasting precious time! I am curious has anybody used hyperbaric

chamber therapy? Please let's pull together and organize resources for our kids!

Tammy

> Hi all

>

> The recent discussions have been really useful. Jenna, my 7 month old daughter

has right sided PMG and is currently having a surgery assessment. She has severe

cortical visual impairement (nothing in the left eye, recently started to pick

up lights in the right), early signs of CP, global development delay and 15-20

seen seizures a day.

>

> We've started occupational and speach therpy and are due to begin speach and

physio in June with the NHS. I'm paying a private physio every 5 weeks and

hydrotherpy with physio for 20 mins every 2 weeks through a charity.

>

> I'll get the the reason for my message - We're due at the neurologists (Dr

Ferrie at the LGI) a week on Fri and i'm compiling a list of therapies i've read

about on here or on other sites. As there seem to be alot! Would you all be

interested in creating a document on here listing the therapies we've tried,

what for and how useful it was/is (maybe in one/two sentences).

>

> Whhat do yout think????

>

> Katy, mummy to Jenna :-)

>

>

[Guest guest]

Hi

My 10yr old also has bilateral perisylvian PMG. Where do you live? She was

diagnosed at 2. I got referrals for a speech therapist right away. She has had

speech twice a week since then. Why are you on waitlists for therapies? Have you

seen a neurologist? Our therapists have all been private.

Sent from my Verizon Wireless BlackBerry

Re: Therapies - message to all

I'm grandma to is with bilateral perisylvian PMG. She is turning 3 in July.

I am so frustrated as we seem to wait on endless list to start therapies. We had

to fight long and hard to get a referral and eventual diagnosis from our

peditrician. She just tried to tell us that her drooling was normal, her lack of

speech was nothing to be concerned about.... The left side weakness we saw was

invisible to a trained medical eye..... Grrr sorry for my rants.

My daughter while calling again to see where we were on the list was called

" dragon lady " by the medical staff for being persistent in pursuit of therapy.

I'm a special education teacher and so we do our best and providing our own

stimulation during our " wait time " . I would love a concise list of available

therapies so that we can begin pursuit outside the local medical profession. I

feel we are wasting precious time! I am curious has anybody used hyperbaric

chamber therapy? Please let's pull together and organize resources for our kids!

Tammy

> Hi all

>

> The recent discussions have been really useful. Jenna, my 7 month old daughter

has right sided PMG and is currently having a surgery assessment. She has severe

cortical visual impairement (nothing in the left eye, recently started to pick

up lights in the right), early signs of CP, global development delay and 15-20

seen seizures a day.

>

> We've started occupational and speach therpy and are due to begin speach and

physio in June with the NHS. I'm paying a private physio every 5 weeks and

hydrotherpy with physio for 20 mins every 2 weeks through a charity.

>

> I'll get the the reason for my message - We're due at the neurologists (Dr

Ferrie at the LGI) a week on Fri and i'm compiling a list of therapies i've read

about on here or on other sites. As there seem to be alot! Would you all be

interested in creating a document on here listing the therapies we've tried,

what for and how useful it was/is (maybe in one/two sentences).

>

> Whhat do yout think????

>

> Katy, mummy to Jenna :-)

>

>

[Guest guest]

Hi Tammy

If you don't mind me asking is your daughter sight impaired? and learnt sign

language?

Katy, mummy to Jenna :-)

>

> is & #39; diagnosis came at two, not because of the pediatrician but

because of a persistent mommy who eventually took her to the ER at a childrens

hospital in our area to get someone to acknowledge there was a problem. The

issue has been the system! We live in CA, USA and is has Medi-Cal, the State

run insurance. The only way to proceed is to get a referal from her primary doc

(the blind ped). Only after the report from the ER went back to her primary

Peditrician did we get the referral to the neuro (what we had been pushing for

all along) We have now seen the neurologist and been refered to the Charlie

Clinic a pediatric clinic specializing in care for children with acute

medical issues. Both the neurologist and the specialized clinic have refered her

for speech therapy, physical and OT. We have been calling and waiting for

appointments since since January of this year. And have just been told we are

" on the list " . The clinic has

> sent all her results to Dr. Dobyns in Seattle and we wait also be seen by

him. In the mean time we are doing our own home grown OT and PT with her and are

actually seeing progress. We have also using a combination of augmentative

communication systems. She has a sign language vocabulary of about 700 words and

uses her Itouch with a carrying case my daughter created and the Proloqu2go

language program that we bought out of pocket. Her neurologist is amazed by her.

Looking at her MRI he said she should have no Receptive language at all, as the

damage area lies smack dab in the middle of her language centers. Her latest

assessment by the school district placed her receptive skills at 7 years. The

neuro & #39;s best guess is that her brain is re-wiring around the damaged area.

We did start sign language at a very young age, 4-6 months old, possibly that

helped? Well, thanks for letting this G-Ma ramble on. But I do believe in being

proactive and would

> appreciate list of possible therapies and strategies for expediting

treatment. I appreciate all you dedicated parents who push for your children.

GOD has been preparing me for my role for the past 20 years teaching children

with severe/profound disabilities. We can make a difference!

> Tammy G-Ma

>

>

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