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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 · 14/08/2017 05:12

You can swe that he wants to be off with his older brother and other children
His body won't let him though. He will side step very slowly across the sofa but his body fails him and starts to slouch and become tired and his feet turn outwards. you can see heach just wants to sit down.

He had a fantastic since of humour and laughs all day long at everything that is appropritly funnyou. he's so sociable

OP posts:

Original poster

ShowerGel9 · 14/08/2017 05:16

I don't want family or friends to see his.

Everyone thinks me and his dad are taking it in our stride and getting on with it.

But we're not. We're so sad and worried all the time. We havnt enjoyed him yet because we ate constantly looking at him worried and using all out energy to teach him things and feel relief is we see him do something new or 'clever'

OP posts:

Original poster

ShowerGel9 · 14/08/2017 05:19

I have had a good cry now and feeling a bit better.

I have friends who have children exactly (to the exact day) same age as my DS and friends wit has children younger then DS who are all reaching milestones. It's hard. Especially when I see them all walking.

Why us

OP posts:

chocolatesa · 14/08/2017 05:25

I'm so sorry to hear you are struggling, it must be very hard when you just want the best for your son. I'm not sure I can offer much help but I didn't want your post to go unanswered xxx

fannydaggerz · 14/08/2017 05:25

Hi I didn't want to read and run, can you contact your HV for support for yourself and your husband?

In regards to the walking, I didn't walk until I was much older (3.5) my mum was beside herself with worry. Hypermobility wasnt discussed back then (early 80s)

Sorry I'm not much help but please continue to use mumsnet to get your feelings out and hopefully someone with more knowledge than me will be along shortly.

Original poster

ShowerGel9 · 14/08/2017 05:30

Thankyou for replying.

I think it's time for me to maybe meet some other parents with chiluren with additional needs. I'm completely surrounded by people with children my DS age who are meeting milestones etc.

Even my job I'm surrounded by children DS exact age who are completely normal

OP posts:

emochild · 14/08/2017 05:35

Do you have a local sure start or children's centre that you can access?
If you don't want to let family in then you need somewhere to be able to just let off steam

Lots of parents of children with additional needs me included are excellent at putting up walls -it's a way of protecting ourselves. But it's ok and normal to go through the 'why us?' feelings, the anger and the hurt -they are all human emotions and no one with an ounce of decency will think less of you for feeling like that

Is there a plan in place for nursery at the moment?

sophielinda · 14/08/2017 05:40

I'm so sorry for you and DH are going through, it must be so difficult.

I'm not an expert in hyper mobility, but I know that children will adapt and improve, they just need your continued strength and support.

There are also support groups out there specialising in hyper mobility, see if this helps:

hypermobility.org/help-advice/local-groups/

Keep strong, you will find a way through this.

Original poster

ShowerGel9 · 14/08/2017 05:40

Hi.

Yeah he does go to nursery. It's actually brilliant at meeting his needs and he's happy there and I'm happy when he's there.

I can not let anyone know how hurt i am. I am an outwardly cool person who seems to be getting on with it and taking it all in my stride.

Time will tell. I have just had a wobble for some reason before. I couldn't sleep which isn't like me. even the night before his brain scan i slept!

I even feel stupid on here saying how I really feel. I hate attention and all this with my DS is really bloody drawing attention to us all everyday

OP posts:

Original poster

ShowerGel9 · 14/08/2017 05:42

Thanks Sophie
I will look more into that. I just had a quick look at here is a group very close to us

OP posts:

annie987 · 14/08/2017 05:51

Hi
My son has global developmental delay. He is a twin so it was very hard watching her achieve everything as expected and her really not.
He sounds very similar to your son.
He could not even lift his own head if on his tummy at age 1. He didn't sit until almost 2 and even then it was in a very unnatural position.
He had all the tests - neurology, genetics and nothing was conclusive; just hyoermobility and low muscle tone.
He finally walked at almost 3 following some pretty intense physio and piedro boots. He walked like a toddler for a long time and was very wobbly.
He didn't say a single word until well over 3 years old.

He is now 10 and you wouldn't really tell him apart from his peers.
He still wears Piedros and his gait is perhaps a little wooden if he's tired. He can run but will never be sporty and he tires physically quite easily.

He is one of the most articulate kids I know and talks for England.
Academically he is now above average. He struggles to hold a pencil and write due to the hypermobility so uses a laptop for everything at school.

I just wanted you to know there is hope and you're not alone.

Original poster

ShowerGel9 · 14/08/2017 05:59

Thankyou so much Annie.

I can imagine that 9 years or so ago that must have been hard for you when them tiny bells start to ring and then get louder. It's nice to hear that your son manages to the best of his abilities

Your son is deep down what i hope my son will turn out like. I would feel like I had won the lottery if my son can achieve the same as yours by age 10.

Here's to hoping and supporting him as much as we can.

Shamefully I don't do physio with him like I should. It hurts me to see him so weak and tired that I just don't do it. Sometimes his dad does it but he can't do all the exercises in his own. I just felt like the physio didnt help a dot and it was making DS upset and me worriedown seeing his weakness

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Mummyoflittledragon · 14/08/2017 06:01

. This all sounds very stressful. I hope your lovely ds will be able to move more freely soon. It sounds incredibly painful for him, poor mite. You sound like a lovely mum and despite his current disabilities, he's got something very special in you.

Mummyoflittledragon · 14/08/2017 06:02

Cross post. Please do the exercises. They are very important to him. Doing them is about him and not your feelings.

annie987 · 14/08/2017 06:05

Doing the physio is rubbish but the more you do the better he'll get.
We used to do something nice straight after as a bit of a reward - even if it was just snuggling up to watch a cartoon together.
At 2 and s half I would never have dreamed he'd achieve what he has now.

We had a fantastic early years teacher who came to the house once a week from 2 1/2 to work on his development (she was funded by the local authority). He also went to a special needs nursery 6 months earlier than he should have where he was assessed for a statement (now called an education, health and care plan) so it was in place before he started school.

Original poster

ShowerGel9 · 14/08/2017 06:06

that's what my husband says.

I will do them more. when he hadoes the brain scan in January I have never felt as worried in my life. the actual scan it's self and then waiting for results. When the results were clear I just kind of 'moved on' and thought he would do it. I could never be that worries again and I came in denial I suppose.

Then when we saw the peaditriocan again last week all that worry came wooshing back to the surface

OP posts:

annie987 · 14/08/2017 06:07

I did try some groups for kids with additional needs but always felt a bit out of place. Although the other mums were very kind, most of the children had significant special needs and we didn't seem to 'fit' either there or in mainstream groups.

Original poster

ShowerGel9 · 14/08/2017 06:07

we had a teacher like that! She discharged him two weeks ago because his play skills are good! 😊

OP posts:

annie987 · 14/08/2017 06:09

That's brilliant. A real positive step!

Original poster

ShowerGel9 · 14/08/2017 06:10

Annie you could be me. My DS looks when he is sat for example in a chair at a cafe that he could just 'get up and walk'. Strangers talk to him and ask him questions. They think he understands them but he doesn't have a clue what they are saying to him but he will communicate with them by passing them something or pointing at something random

OP posts:

annie987 · 14/08/2017 06:13

We found swimming helped to build his core strength too. He was just so floppy there was no hope of him standing let alone walking and swimming seemed to help.

OhtoblazeswithElvira · 14/08/2017 06:17

Hi OP, please do the exercises! A little friend of ours has only now started taking her first wobbly steps, at 2.4. She has been under a pediatrician since being very little due to mum having issues wih pregnancy that needed monitoring, then problems gaining weight so her delay was spotted early. Seeing her trying to pull herself up 6 or 12 months ago you would have thought she would never walk, her legs seemed made out of rubber. And yet they persevered with the exercises and she has started walking.

HurryUpAndWait · 14/08/2017 06:21

I'm not in a position to offer actual advice but remember that every child worries their parents. Those who meet their milestones, are top of the class, outstanding at sports or whatever else.

I've met absolutely inspirational children and families who do have AEN or other problems. I have no idea what the future holds for you and your son but I do know that some of the children I know very well (with severe mental and /or physical issues) have some of the most fulfilling lives.

I have been in a similar situation to you and understand the worry. Personally, I can tell you that it gets easier as you get more information. It's the lack of knowing that's hard. When you have news, you deal with it and manage as most other parents. Professionally (ex-SENCO), I can tell you that achievement, attainment and personal success is all relative. I'm sure you know this already but all parents need to be reminded sometimes; especially those who are stressed about their child.

Physio is important. When I had to give DD medicines 5 x 5 times a day) I was so upset. It would remind me of what was happening to her. Similarly to physio though, you just have to do it.

Redredredrose · 14/08/2017 06:23

I'm really sorry to hear about your son's issues. Have you been referred to the genetics team? That might be the next step. There's a support group you might want to join called SWAN - Syndromes Without A Name. It's for families with a child with an unknown disorder, either something very rare or just symptoms without a diagnosis. You join and then they let you access the Facebook group which is full of parents facing similar challenges, from worries over test results to sadness at seeing friends' children hit milestones. If you PM me, I can explain a bit more. My DS (33 months) has an extremely rare genetic condition and we're members of the group.

The special needs board here can also be very helpful.

Sirzy · 14/08/2017 06:34

Hopefully you start getting some answers and progress soon.

I agree with others that the physio needs to be part of your daily routine. Think of it like medication that has to be given regularly for it to work. Eventually doing it becomes second nature.

Don't worry about showing people how worried you are, let them know and accept any support you can get.

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