An introduction to the Prescott Family

[Guest guest]

Hi

I joined this group about a month ago, so thought I had better

introduce the family.

We have a 2 1/2 year old daughter, , who was initially diagnosed

at 6 months with Liss. After a recent, second MRI the diagnosis is

now bilateral fronto-parietal polymicrogyria. also has

microcephaly and moderate hearing loss in both ears.

is able to roll, and grab objects when she remembers to open her

hands. Her fine motor skills are improving. She has recently got very

good at grabbing her NG tube and pulling it out. A weekly occurrence

at the moment. is currently waiting for a PEG operation,

although she still takes most of her fluids and sometimes solids

orally. We mostly use the tube for her meds, or if she refuses to drink.

currently has carbamazepine for her seizures. She also has

clonazapam for seizures, but we mostly use that to help her get to

sleep when she gets wired.

also has lactulose for constipation, which has not been a problem

lately. She was also on Losec for reflux for over a year, until a pH

test showed she didn't have reflux at all.

currently goes to conductive education 3 times a week, and this

seems to help with her movement.

Also in the family is my wife 4 1/2 year old son , a cat

called Mike, and Polly and the labradors.

Up till now we have been on the Liss loop, and recognise some of the

common members names. Hi to you all.

Hi also to Tina in NZ.

, , and (BFPP)

[Guest guest]

Hi ,

Welcome to the group! I am so glad to hear that is in Conductive

Education. My daughter Alyssa is in Conductive Education also and it has done

wonders for her. She is going full time, 5 days per week, 9am-2pm at the

Conductive Learning Center in Grand Rapids, MI. From what I know this is the

only

school setting in the US and its run with the creators at the Peto Institute

in Hungry. Many families from all over the US mostly, but the world also,

come to CLC for four week sessions. The school has totally changed Alyssa over

the past 14 months since we started. I wish we would have found out about

it sooner. Alyssa is 4.5 now, so she started when she was 3.5. The school is

having parent and child classes now and its great to see babies and toddlers

getting this intervention at such a young age! They have classes for older

kids and see people privately too.

Our daughters have the same type of PMG, both have micro and Alyssa's

hearing loss reversed itself with close watch by an ENT, who put in tubes, and

took

out her tonsils and adenoids. Her allergist has been aggressive in treating

her allergies and her pediatrician has been aggressive with any colds she

gets so they do not progress to more. All of that affected her hearing since

she was constantly dealing with sinus and allergies in her early years. Once

we cleared all of that up her hearing was able to regenerate and tests close

to normal now. Alyssa's seizures are under control with Tegretol but they

have been mild since her first ones, grand mals, when she was three months old.

If she wouldn't have had those first seizures, or if they hadn't have been

that bad then I know she would be a totally different child than she is

today. I know realize that her doctors missed the signs and didn't listen to

me

either. If I could go back in time...

We are headed to EuroPeds for intense PT and SUIT therapy in a couple of

weeks, our first visit. I have heard lots of success stories from these types

of programs so we are going to try it out. I hope Alyssa benefits, as I think

she will, from the stretching and strengthening that is done in the program.

Take care,

and Alyssa

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