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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Really worrying about DS

69 replies

ShowerGel9 · 14/08/2017 05:09

Long time lurker

Up in the middle of the night not being able to sleep worrying about my son.

Son is 2.7 months old
He can't walk.
He's so weak and has been diagnosed with a global delay.

Brain scan and bloods come back normal. Now he's been referred to see a Neurologist.

He is so beautiful, blond hair and blue eyes and now babbles all day long. he has around 4/5 words.

He can bumshuffel but can't walk or crawl or pull himself up. He has physio monthly and speech and language and has them special boots. Peadatricion said that he's hypermobile but was hoping that by now he would have made more progress with his physical skills. I'm so worried.

Being awake at this hour isn't like me. Peadatricion said that he could have just been 'born' hypermobile or that something secondary might have been the cause to his global delay. I asked what could be secondary and he said thats for the Neurologist to investigate.

Me and my husband are beside our self's with worry.

Could he be just hypermobile and this is simple causing the global delay? Is there more?

He doesn't move about alot Hereford he isn't exercising link other children and I'm worried about that.

Our other 6 years old DS is absolutely normal and walked at 10 months. he's great with his little brother

I just want him to walk but he's so weak in his joins. Ankless knees and hips that I don't know if he ever will. He hates being on his tummy as he is so weak.

Will he ever walk?
Is unhealthy because he doesn't exercise like running around like other children his age?

What the fucking hell is wrong with him. Me and his dad are only young and the last 2 years with all these appointmentsites have been a shock. I'm so scared.

OP posts:

Original poster

ShowerGel9 · 04/02/2018 12:50

Also he is still dribbling lots and needs bibs so I want to talk to her about that.

OP posts:

Original poster

ShowerGel9 · 04/02/2018 12:57

Ooh and he can bumshuffle alot faster now and he will bumshuffle around the room to explore whereas six month ago he was happy to stay in one spot

OP posts:

FrancisCrawford · 04/02/2018 13:01

This reply has been deleted

Message withdrawn at poster's request.

Blowitout · 04/02/2018 13:07

Thanks for the update. It is lovely to hear that he is making progress. The dribbling thing is probably par for the course and is another thing that can be worked on through exercise. Stay positive and best wishes!

Original poster

ShowerGel9 · 04/02/2018 13:40

I have had a lot of streas to deal with over the last few Months and ds sleeps in our bed as we are terrified about the seizure (he isn't epileptic as he has had electrode tests on his brain both awake and asleep).

My lips are chapped like you have never seen and they bleed and I think that is stress somehow working it's way out of my body.

OP posts:

notgivingin789 · 04/02/2018 13:46

Don’t want to alarm you but could it be Cerebral Palsy ? Anyway, I would do what the other PP’s have suggested. I would also look up something called “Conductive education”, typically designed for children with Cerebral Palsy or children who find walking difficult. The programme helps the necessary steps to walk.

Original poster

ShowerGel9 · 04/02/2018 13:52

I dont think that it's CP as he has had an MRI scan that's come back clear :)

OP posts:

sportyfool · 04/02/2018 13:53

Have you had genetic testing ? I have a similar son . The hyper mobility are symptoms rather than the reason for gdd . It will be genetic or Cp/ autism etc . My son walked at 2.11 but walked with a frame from 1.10 . He is now 6 .. happy if you want to pm me .

sportyfool · 04/02/2018 13:56

In terms of the physio , you must do it . You have to be cruel to be kind and I'm quite sure my son wouldn't be walking had I not insisted he used his frame . We both cried but we did it as I was adamant he would walk .
I presume you have all the specialists in place ?
Have you heard of Swan? There are lots of us with unexplained difficulties so there is no need to be alone .

Original poster

ShowerGel9 · 04/02/2018 14:04

I have no idea if he's been genetic testing. He had had blood tests which haversion come back clear..

He had one last week and I forgot what it was for..I remember

'Chromosonall something? '

This test was from the peadatricion

OP posts:

sportyfool · 04/02/2018 14:09

Have you spoken with your geneticist / paed about the 100,000 genome study?
The nhs micro array quite often comes back clear but it doesn't mean it isn't genetic . There can be tiny blips that can cause developmental problems .

sportyfool · 04/02/2018 14:11

I should have said the nhs micro array only does a general check . Did you have any issues ( however small ) in pregnancy ?

Original poster

ShowerGel9 · 04/02/2018 14:22

I had no problems in pregnancy apart from patylism (excessive saliva the WHOLE way through my pregnancy..think the aliens in the simpsons) and I didn't know about the gene project as I'm really thick and probably letting him down with how little knowledge I have about all this. He was two weeks early and actually hitting all his milestones until about 8 months...

OP posts:

notgivingin789 · 04/02/2018 14:24

OP be cautioned. Global developmental delay is not a “real” diagnosis. The doctors give this diagnosis when the child is delayed in all areas of their development and cannot figure out the reason why. Hence calling it GDD. His walking difficulties could be a symptom of something.

Original poster

ShowerGel9 · 04/02/2018 14:27

Yeah I understand that not giving. It's just all of have at the minute to explain to people what's going on with him.

OP posts:

sportyfool · 04/02/2018 14:31

I'm sure you aren't 'thick' but you maybe need to read up . I don't want to be too harsh but as pp said it's not a diagnosis and most children don't catch up . They will just become children with learning difficulties or disabled etc . There will be a reason and is most likely genetic but the science isn't quite there yet to give a diagnosis .
I don't dwell on why my son is like he is but have focused my attention on getting him the help he needs . He has had excellent schooling so far and I had his echp in my hand by the time he was 3.5... maybe focus on that ?

Notevilstepmother · 04/02/2018 14:32

Not much to say, but it’s great that he is exploring now and good luck with your appointment. Have some

Original poster

ShowerGel9 · 04/02/2018 14:40

I know that he might always be a child...and that's fine.

He neat died in October and I had to keep him alive by breathing into him and for him. He then was very poorly in hospital and I was 'wished luck' by one of the doctors who was going home because her shift was finished in A&E

You can never be down in the dumps when your around adults who have learning difficulties and behave like children...that is one positive!!

OP posts:

sportyfool · 04/02/2018 16:45

That's a great attitude , maybe I think too much but I worry greatly for my son . We started looking at schools when my son was 2 ish so maybe focus on that . Finding suitable schooling and getting support and statements are very difficult .

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