#11
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thanks, josh has a check up with the pediatric consultant tom. so i am going to push for these tests. he doesnt tolerate any food like chicken, bitty foods, lumpy, he just gags, and chokes i dont know if it is with him having a chest infection, but they keep saying it is not that. He is not even crawling properly yet, or sitting posturally like he should do. they have not mentioned anything about low muscle tone, but they know he doe not have high muscle tone, but this is all new to us.

can anyone tell us ,do you think we should apply for dla.

thanks for everyones help, as we have been finding it hard recently.
#12
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what age is your son ? My son only learnt to crawl few months ago which they told me he never would . Ask about his muscle tone . It is hard road and its even harder when you'd like to know what is going on . I've been going with my son since he was 9 months old and they still not sure what is going on . I applied for DLA for my son and got high rate , when you see the team tomorrow ask them everything that you'd like to know . I find writing questions before i go are handy because when you go in you forget , good luck for tomorrow
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#13
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HELLO EVERYONE, I WAS FORMERLY UNDER MIKEY81, BUT COMPUTER GOT HACKED. SO NOW THIS.

JOSH PHYSIO AND PAEDIATRIC CONSULTANT HAVE NOW NOTED HE HAS BOTH LOW AND HIGH MUSCLE TONE IN BOTH HIS LEGS, AND HIS ABDOMEN AREA/CORE, I TAKE IT THIS MEANS CEREBRAL PALSY . I ALSO HAD TO ASK FOR A FULL SPELLING NAME OF WHAT HE HAS ( ANOXIC / HYPOXIC ENCAPHELOPY.

HE HAS NOW BEEN GIVEN LOSEC/OMEPERAZOLE DOMPERIDONE, AND A STERIOD FOR HIS BREATHING ALSO.

THE TONE HAS NOT BEEN APPARENT UNTIL NOW, I ASSUME THIS CAN HAPPEN. HE HAS ALSO GOT REFLUX HE SAID AND PHYSIO SAID BECAUSE HE BOKES AND GAGS ON CERTAIN FOOD HE WILL HAVE POOR WEAK SWOLLOW AND MUSCLE TONE IN HIS MOUTH.

SORRY FOR THE DELAY. MY WIFE HAS NOT TAKEN TO THIS NEWS TO GRAET, I TOO HAVE BEEN BIT DOWN.

THANKS FOR ALL INPUT, I NOW HAVE THESE DLA FORMS TO FILL IN FOR NEXT WEDNESDAY. IT NIGHTMARE, PEOPLE KEEP SAYING HE WONT GET IT AS HE IS TOO YOUNG.
#14
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hello everyone, formerly know as the name in this posy mikey81, however, my computer got hacked, had to change for security reasons for my job etc.

josh had his pediatric physio and consultant. It was discovered that josh does in fact have some high muscle tone in his legs, and low tone in his abdominal wall.

he also seems to have reflux, and excess salavation as i expected. Josh does not seem to tolerate any food with bits or too lumpy, physio says this is low mouth tone and poor swollow.

Josh was given prescribed ( losec, Domperidone, and steriods inhaler. His chest xry was clear can this mean it is in fact his esophageal reflux.

i have now got to face these dla forms like a bible, i do have someone to help, however, i was told he might not qualify as he to young.

please i have not been a great place this weekend and now with the daunting forms can anyone relate to this.

thanks and sorry for the delays
#15
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Hi my son got DLA just after he was 1 , i sent the forms in at 10months so it does take awhile , dont listen to anyone else . The losec is great , my son been on it since 9 months but still can be sick but as your son sits up more it will ease. It is hard to get your head round , i've walked out on doctors at times when things get hard . It will take time to get your head round it all . DLA can be given out for children from they are 3 months old . My son is still on mashed up food and he is 2 and 7 months and sometimes he wont eat it either , just try him with small bits , get him a chewy tube they are good at getting there muscle working in there mouth . I wish you's all the best and when your feeling low come on and moan , everyone feels like this at times x
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012


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