Infantile reflexes

[Guest guest]

Grandma Carol says hi.

Traci you asked about our little red headed man, Torin, 18 mths.

His development is delayed but also out of normal timeline.

He could sit for long periods if he wanted. The first time he was

about 10 mths, he was sat in front of TV and watched a whole Baby

Einstine dvd, spell bound. His usual was to back arch and fall

backwards. He had no reflex to fall forward or to put his hands out

to save himself so he falls on his face. Even now he still just falls

and makes no attempt to save himself.

He learned to sit himself up about 14 mths and has now progressed to

position himself on all 4 as if to crawl but the right weak arm just

gives way. He can now sit on a seat and bend forward and pick

something up and sit back up. He can sometimes manage to pull to

stand and is slowly starting to move along the couch. Unfortunately

he usually forgets to move his feet quickly enough so falls. He

appears to be slowly getting his movements. it is as if he just

thinks slowly. His commando crawling is going well he loves to be

chased and tickled. His rolling is fast and he gets anywhere. I also

have addapted a baby walker to be tall enough for him to run around

in, but we do not tell the OT. I have also made he an outside walker

so he can run around the yard, he does not need to be on the ground

all the time, he has to wear boot or orthoses as his right foot is

not great he rolls it. We do not tell the OT about this either. He is

getting taller and stronger by the day.

He has never been floppy in reverse he has always been stiff and as

he back arches he could be hard to bend. To try to sit him you had to

push his stomach and bend him, it was very difficult. We had a corner

chair with a tray that was great and made him sit properly, supplied

on loan from the OT.

His profound deafness makes things even more difficult for my

daughter as you can not talk to him easily. He is a little deamon now

if he is in a mood the whole Cochlear implant gear is off and being

chewed. One of our biggest issues is his lack of sleeping. The EEG

showed miss firing in part of his brain so they put him on Tegrotol

to help with sleep. It did not help, and as he does not have seizures

it was stopped. He is now on Valergan at the dose they use as pre

med before opperations in hospital. He now sleeps sometimes.

The naturopath who talked about infantile reflexes, said the lack of

sleeping is due to a lack of serotin in the brain and so has given

him some creatine as a powder to help. I also think Torin gets

worried at night in his silent world when he is alone. if he sleeps

close to me I hold his hand, he sleeps. If he wakes he rolls close

and wraps himself around my arm. I wake with a stiff back and have

this Koala wrapped around me. I love it.

We have stopped the glyco nutriens for the moment to let all the

stuff from the Naturopath have ago. 3 poweders 3 liquid stuff in

drops at breakfast, 3 lots of drops at lunch. 3 powders 3 lots of

drops and the Valergan at bed time. It is a nightmare, but if it does

something who cares.

We all live in hope with Torin and all the Professionals seem very

optomistic for his eventual outcomes. The main thing is to pray that

the seizures stay away, the Botox get him to have more use in his

right hand, and the the Cochlear implants allow him to hear. All I

can say is thank God for government supported programs as all Torins

treatments are free. Australia is a great place to live.

Sorry everyone but it is great to talk about our little man to people

who have some idea about what we are going through. People just see

all his hearing equipment, as one little boy said " what is that junk

on his head " . Children are honest adults pretend not to stare. We

just see our funny loveable little monkey.

Grandma Carol, Torin 18 mths bilateral difuse PMG more on the Left,

hemiplagia, profoundly deaf. And much loved by a dotting Ma.