#1
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I have twin boys who cannot weight bear - they don't have a diagnosis - they don't have any reflexes in their arms or legs. They are bright, chatty, happy and very friendly. I don't know anyone else who's children can't walk by the age of 2? The lack of diagnosis is a barrier to getting help because we cannot prove they are perminantly disabled. They had torticolis, hypotonia and have plagiocephaly. Thomas has issues with eating and they both have delay with fine motor skills and gross motor skills

I want to see if anyone else has a child who is similiar?

I feel really down today.

I am in the Norfolk area
#2
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I do!! My son is a little younger (15 months) but he also has undiagnosed global developmental delay complicated with epilepsy. His seizures have slowed but his delay is increasingly noticable against other children, he can roll from front to back but cannot sit up, crawl, stand, grab things, hold onto things or pick things up, he doesn't seem to have any motivation to do be interested in anything, except looking our the window.

I'm finding it really difficult not knowing what's wrong with our child, my family and work colleagues keep saying everything will be ok, but the doctors and therapists seem more concerned every time they see him, especially as his eye contact is very weak and he only ever wants to sucks his hands.

We saw neurologist a few weeks ago and she said many children never get diagnosed, but that genetics is developing so quickly that even if you don't have a diagnosis now, in 5 years time you might do. They can keep blood to test it when new tests are developed.

If only people had told me before we had a child how hard it can be - I might feel more prepared with where we are at now - there are good days and bad, tomorrow is saturday so it'd better be a better one!

Take care!

#3
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Me too, my son is 2 and a half and can roll at the speed of light but he can't sit up, crawl, stand or communicate and is about as bendy as a rubber band. He also has problems eating and reflux and we are not too sure what his understanding is like. He has severe GDD, multi cystic kidney amongst other bits and bob. When he was a baby he also had torticolis and does still have a fairly flat head but it has rounded out slightly.

It is heartbreaking when the difference between your child and other children the same age becomes more noticeable and there are going to be days when all you want to do is hide yourself away from the world and have a good cry, but that’s normal and I always think it's good to let it out every now and then.

My son’s problems are genetic and caused by an unbalanced translocation. His geneticist says that he is truly one of a kind and they don't know how he is going to develop. Have you asked your paediatrician about genetic testing?

I hope you get the support you need for your boys and if you ever need a chat your welcome to message me.

Once last thing on my list of ramblings. When people tell you "he will get there in the end (one that really grates on me), I just smile and say "yep he will, wherever there is"
#4
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so many people try and jolly us along - I hate the "they'll be okay" - I just hope the GOSH appointment comes through soon.

thank you for your kind replies - I wish you both well

kind reguards

Vicky
#5
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I remember the months of hell waiting for our little boy Euan to be diagnossed and his symptoms were so alarming.
He had developed Ricketts,His weight had fell of his red book chart,his growth had stagnated,he lost all his hair and always looked de-hydrated and had many other symptoms and he was a complete mystery to doctors and he had multiple tests and appointments and we were always made to feel by our health visitor that maybe it was us with the keep a food diary,give him high fat foods etc but nothing worked it was so frustrating getting no where.
The one test they could have used to diagnose earlier they had lost the test and didnt repeat it for months and then we got a diagnosis later on whereas if they had done that test we would have had answers Sad

Its a very dark place and we as parents did believe either it was something we were doing wrong or maybe it was such a simple explaination we never ever in the world ever dreamed we would be dealt a major life changing diagnosis we recieved and it rocked us to the core and still today it hurts.

Believe me you are not alone and im glad you have found the site as believe me many if not most of the parents here can relate to your feelings in some way.
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