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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 06:37

Thanks everyone. your all really helpful.

We go away for a few days today so I will look into all the advise when we get back.

I will do more physio. I promise Smile

OP posts:
Original poster
ShowerGel9 · 14/08/2017 06:40

I have no idea if we have been referred to a genetics team. the peadatricions accent is very hard to understand. He mentioned something about neurologist and genetics.

OP posts:
Original poster
ShowerGel9 · 14/08/2017 06:41

I just dread wait for any letters or phone calls or voicemails.

OP posts:
eviethehamster · 14/08/2017 06:41

Agreeing with others that Physio isn't enough.
How does he communicate? What are his social skills like?
Global Developmental Delay means he's delayed in all areas (sorry to state the obvious). Early intervention is a key priority. Do you have SALT involved?

Sirzy · 14/08/2017 06:49

Also on a more practical note have you claimed DLA for him?

Do you have any sensory rooms nearby? Ds loves the local one to us not only for the lights and things but because it's a bit like soft play but much gentler and quieter so he can enjoy it. Moving around a safe environment like that might help build some muscle strength.

Original poster
ShowerGel9 · 14/08/2017 07:05

we have applied for DLA. we receive middle rate and the extra money is a godsend because we use it to take him everywhere.

Play centres
Days out
Baby Ballet
Footytots

He loves others. He is so socialable and finds hints funny in the correct context. for example Peppard pig making a funny noise. He then looks around to see ifull other people are laughing with him

Hes just burst out laughing now when I popped my head around his door to say good morning and startled him while he was lied in bed making noises

He says a few words:
Car
Roaarrr
Yayyy!!
Get down! ( in context)

He sees SALT and every other professional you can think of. even moving and handling

OP posts:
Original poster
ShowerGel9 · 14/08/2017 07:09

it feels so good to type all this out.

He dribbles a lot. around 5 large bibowl fulls a day. Peadateician won't prescribe him anything because he's so young and we are managing it with bibs.

We have taught him to wipe his mouth with his bib when he's veryou wet around his mouth. He dribbles all lol day long. It has no destruption to his feeding or taking however. Just annoying for me!

OP posts:
Sirzy · 14/08/2017 07:11

The dribbling will probably be linked to the poor muscle tone. Have things like blowing bubbles through a straw been mentioned?

Original poster
ShowerGel9 · 14/08/2017 07:26

Excellent idea. Bubbles have only ever been suggested to aid symbolic sounds. Eg Pop!

OP posts:
eviethehamster · 14/08/2017 07:28

The dribbling will also be linked to speech production. Does he echo you OP? Will be make an attempt to repeat other words?

Original poster
ShowerGel9 · 14/08/2017 07:39

no he doesn't copy any sounds I make. animals noises nothing.

every sound he makes are on his own terms. he might say a phrase 'Get down!" and not day but for weeks. Atm he's on 'Yayy! and 'Ca' ( car or train)

OP posts:
Neutrogena · 14/08/2017 08:06

OP - you need to stop caring so much what other people think of you. Get some counselling and start practising self love.

Redredredrose · 14/08/2017 08:13

Neutrogena did you meant to post in this thread?

notmaryberry · 14/08/2017 08:16

A lot of what you're describing sounds like my DD. She didn't walk or talk until she was 4 and the doctors never found what it was other than 'global delay'. She still has learning difficulties and struggles with physical stuff, but is in mainstream school and very happy. One thing that really helped her back then was learning makaton. Keep going, it will get easier! Don't compare him to other children, just be proud of his own achievements because I promise you, no parent was prouder than I was when my DD took her first step! (I cried like a baby)

Neutrogena · 14/08/2017 08:18

Yes rose. OP repeatedly says how much work it is to keep the deception up to . That is a source of worry for her as well as the child. She cannot fix her child so to speak, but can do something about her feelings to other peoples opinions.

Redredredrose · 14/08/2017 08:22

That's not how I read it - I'm not sure she's concerned about other people's opinions, I think she's finding it hard to show her emotions, which isn't the same thing.

Alanna1 · 14/08/2017 08:27

My daughter's hypermobile. We are religious about her exercises and do as much sport as possible with her. It hasn't always been easy (& my family, whilst helpful on other stuff, don't really get this). But roll on 6 - nearly 7 - years and it's amazing. Stick with the exercises!

Original poster
ShowerGel9 · 14/08/2017 08:44

I suppose I do care about what other people think of me- in life in general and his thrown into the mix means that I have to prove myself as strong and capable.

I don't want to be 'That person who talks about my childs additional needs' all the time. so I just don't talk about it much.

my friend was asking me the other day about what she should do about her child who is exactly the same age to the day about her ds toilet training because she didn't know what to do because he was struggling with it

I had no advice because my DS will not be ready in the near future. nowhere near Sad

OP posts:
PiratePanda · 14/08/2017 09:37

I don't know if this will be helpful, but my sister is an occupational therapist with children with cerebrsl palsy and multiple disabilities.

She says that if a child can sit up by the age of 2, generally speaking, with the right therapy they will be able to walk eventually.

So don't despair Flowers

WilliowGreen · 14/08/2017 09:42

Hi Showergel

I have hypermobility syndrome ( it is not called that now they have changed the name).
I think that a referral to a geneticist would be a good idea as there are lot of genetic conditions which involves hypermobility.
It sound like your little boy has good social skills which is really positive😀.
As a previous poster said swimming helps a lot if you have hypermobility as you can move around in the water with less difficulty than you would on the ground.
I would also look into getting him an orthotics appointment as it would be easier for him to stand if he had special shoes or boots. Some children with hypermobility also have standing frames which can help them to learn to stand. I don't know if this would be suitable in your case.
I think you also need to look after yourself and get some support. Meeting other parents who have disabled children could be helpful. Have a look at groups near you. You could also look at Contact a Family who can help you to meet a family whose child has the same diagnosis as your son.

WellThisIsShit · 14/08/2017 09:56

Willow has a lot of good practical advice (as do others too on here).

I think you need to focus a bit more on yourself and how you're dealing with everything - it sounds so hard and your feelings must be all over the place, so much to deal with.

I know what you mean about the too much attention thing. I'm disabled and find it so hard to be drawing a lot of attention by the way I look and using a chair etc. And the way my differences are discussed all the time by others. I don't want to be getting any attention from anyone, and yet I can't escape it because I need the help, and I need the engagement of health care professionals. I should be making more of an effort to get people involved, but I really struggle with all that.

I'd give anything to blend in and just slide on by without anyone noticing me! And never having to engage with hcps, going to a big standard appointment and getting a big standard result, ticking all the boxes, nothing interesting going on, see you in a year... sounds like heaven to me!

Sirzy · 14/08/2017 11:36

I think adjusting to how life is/is going to be, is the hardest part of it all in a lot ways.

The goose and carrot type threads in the SN boards are a good place to chat to people who understand

Witchitywoo · 14/08/2017 12:00

My DS had lots of mobility problems when little but there were 2 activities that helped him enormously with muscle tone: swimming and horse riding. We were told he'd never sit, stand, walk or talk. So the physio suggested the swimming and the horse riding from the age of about 3 and it really helped him. Playing in the water and walking around in it as it's so supportive. Riding, using a special supportive saddle, improves core muscle strength thus aiding mobility. Talk to your physio about it.

x2boys · 14/08/2017 12:12

Has he had a microarray blood test that checks wether there are any abnormalities on his chromosomes? Lots of children with developments delay including my child have rare chromosome disorders that affect their development that aside if you are on Facebook there is a group called my child has global development delay which you may find useful.

Original poster
ShowerGel9 · 04/02/2018 12:47

I know this thread is old but I'm updating it incase anyone else in the future reads it. Plus it's nice to type.

DS has just turned 3.

So. Since I last made his thread in August many bad and posative things have happened!

Firsty in October my son had the nasel flue vaccine. In the night he had a major high temperature and had a seizure. After the seizure he stopped breathing and I gave him CPR until ambulance arrived (luckily I slept with him that night as he had the high temp) To cut a very long story short he was ventilated at hospital and put in an induced coma for 24 hours when he woke up 'himself'. We don't know if the seizure was due to the flu vaccine. We don't know if he stopped breathing because of nurelogical problems? He came home and it's like it never happened...

He now can get into a lieing position on his front and back and can pull himself up from lieing to sitting.

He will slowly sidestep down the sofa.

He will army crawl about half a metre when in the mood and encouraged.

He's folowing instructions more and will make animal noises (on his own terms)

He is still VERY weak around his middle and can't walk alone.

He has a frame now which he gets strapped into and he will slowly move around the room/outdoors walking with his frame.

We see a peadiactric Neurologist NEXT WEEK!! (YAYYY) after waiting 12 months. He has intention tremors which I want to talk to her about and he will twitch is fingers sometimes involuntary which I want to discuss.

All in all he's made progress in 6 months. I never though he would be able to sit up from lieing totally flat on his own or get back up on his own from lieing on his front.

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