#1
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hello, i am new here so i understand i may not get posts, but my son has hie gdd, gerd. he has had one child development meeting so far, see physio every four weeks and occupational thera[ist also.

We are awaiting his next meeting review. what is eveyones opinoin here, the physio says he has low tone upper body, be it he improved, she also says he has poss diplegic cp, but will not commit or elaborate as yet, may be mild as he stands only weith supported, and crawls now. does not talk at all, says dada, lala for his sister. and drools really bad most days. his feet turn out, ankles turn downward and in, when we try to walk him, and has no weight bear or stability at all. we just want a diagnosis, we worry just because he is not as severe as they predicted, push us aside and are resting on there luarels. We understand all toddlers are different, i am just getting fed up and nervous, can anyone relate to us

please do help.what should we do, when do they tend to diagnose, we feel it will help us try to cope better, and start trying to put things in place for our son

he just got assessed for his pedro boots



#2
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i think you should tell them how you feel and ask them to be honest and open with you. it may be that they have an idea but do not want to commit at a younger age, especially if he is not 'severe' as you say. It probably isnt the case that they want to brush you aside but more, if they diagnose too early they might diagnose wrong and you wouldnt want that. ask them what their opinions are and why they are delaying, i'm sure they'll tell you

xx
#3
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Hi my son is gdd . He is 3 years old and is about 2 years behind . They all come on in different ways .They told him he'd never crawl and he did . I'm still waiting 2 years and 5 months on finding out what is wrong with my son and i've been told I may never find out . They don't like to give you a diagnose when they are young unless they know 100% what is wrong . Lots of time they watch to see how they come on 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
#4
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(07-11-2011, 09:57 PM)mikey1981 Wrote: hello, i am new here so i understand i may not get posts, but my son has hie gdd, gerd. he has had one child development meeting so far, see physio every four weeks and occupational thera[ist also.

We are awaiting his next meeting review. what is eveyones opinoin here, the physio says he has low tone upper body, be it he improved, she also says he has poss diplegic cp, but will not commit or elaborate as yet, may be mild as he stands only weith supported, and crawls now. does not talk at all, says dada, lala for his sister. and drools really bad most days. his feet turn out, ankles turn downward and in, when we try to walk him, and has no weight bear or stability at all. we just want a diagnosis, we worry just because he is not as severe as they predicted, push us aside and are resting on there luarels. We understand all toddlers are different, i am just getting fed up and nervous, can anyone relate to us

please do help.what should we do, when do they tend to diagnose, we feel it will help us try to cope better, and start trying to put things in place for our son

he just got assessed for his pedro boots

Hi there, I'm new too. Our son was diagnosed at about 16 months with CP. Previous to that, after many MRI and CT scans we were told he firstly wasn't going to survive, then he was blind, deaf, would never have any tone and would be severly brain damaged for the rest of his life. Now, Kieran has 90% brain damage, but thank god, due to the brain injury happening at such a young age the brain re-routed itself and he has made remarkable progress. His neorosurgeon said he shouldn't have known anything about it, the stroke was so huge it should have taken him immediately. He now walks, though uses a wheelchair for distance, talks, he can hear and see and is becomming a very independent little boy. The reason they won't commit unless they are 100% certain is that telling a family a diagnosis can cause as much damage as the physical symptoms. The pain and distress our family has endured because of worry, on top of all the operations, other diagnosis, challenges and set-backs has been huge, because we got a diagnosis, that in any other child may have come true, but in our son's case didn't to the severity they said. You should definatley talk to your support worker, special needs nurse or consultant about your worries, but although I know I wanted diagnosis straight away, don't rush your mind into needing it. Diagnosis can answer many worries, but it can also create a million other questions. Try and chat through your concerns, but let the bairn develop a little more, things can change so quickly. If they diagnose now, then things get better, you may struggle terribly with the fall-out of all that distress. I don't know if that makes any sense, it is easy for me to talk now as I have been there, got the t-shirt. I know your distress is very real, but please don't let it control you, it will pay to stay strong at the moment. Write a diary of your worries and thoughts and ask for relevant support networks in your area. The stronger you can be the better, ask for what you need to help you and you family progress with this. Take care, all the best xxx

#5
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hello all who replied, you are all great, and i appreciate, and take on every advice and opinion. i guess i am just being an over protective daddy. my wee boy is a miracle, basically, the senior consultant echoed everything you said in the previuos reply, devastating, my world came apart. i have felt stressed lately, i almost lost my hous when my wife lost her job, as they would not accommodate her and my wee daughter who is 3 passed dotes on me so much. i think it just a build up. I think i would just like to get out everything, and have some kind of direction. the bigger he gets, and the more things sometimes things become apparent, it does get hard, but i am a strong person. just felt i needed to hear fom guys like yourself who maybe know how and what it feels like at times

i greatly appreciate all your help, and i hope your little children are well.

thanks x


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