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To be so sad and scared

69 replies

zivashighkick · 05/07/2017 20:27

I know this isn't really the right place for this but I'm desperate for some reassurance. My 8 month old ds has retained reflexes and isn't rolling or sitting. His development seems to have gone backwards over the last couple of months. We have been referred to paeds but I don't know how long the wait is.

Can anyone tell me that this is going to be okay? Is cerebral palsy the worst case scenario? Is there anyone out there whose child has cerebral palsy and is happy and flourishing?

Thank you for reading....I needed to get it out of my head!

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user1497480444 · 05/07/2017 20:32

  1. I know many happy flourishing children with cerebral palsy.

2. I have retained reflexes, and I am happy and flourishing.
3. I have known children who haven't rolled or sat by this age, and have gone on to catch up.

I know it sounds trite, but try not to worry. Maybe there is an issue, maybe there isn't, wait until you know what you are dealing with before you worry about it!

Best wishes

Lozzie12 · 05/07/2017 20:35

I think this is lovely advice. Babies develop at different rates and some seem to be falling behind and will then have a leap in development. If there is a problem your baby will have early input. Enjoy your baby and try not to worry. I hope the paediatric appointment goes well.


zivashighkick · 05/07/2017 20:36

Thank you. I am catastrophising! I think I've known for a while that something isn't right and I feel guilty for ignoring my instincts. Do you reflexes cause you bother day to day? Is there anything he would be asking me to do / not do if he could talk?

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user98765797837 · 05/07/2017 20:37

Have the doctors mentioned CP?

My cousin has CP, she was born really early and is now in her 20s. She went to a regular school, even moved like 4-5hrs away to go to uni. She has a job, a boyfriend and a social life probably better than mine. lol

I won't lie it hasn't been all roses, she's had operations and lots and lots of physio... but it was all taken one day at a time and she is happy and she is flourishing. x x


Maxandrubyrubyandmax · 05/07/2017 20:41

Oh bless you, if horrible when you think something might be wrong and you just play it over and over in your head imagining the next 30
Years. But (and I know this is so much easier said than done) stay away from google. But you sound like a lovely mum who will be able to make sure your DC gets all
Thehelp and care they need


zivashighkick · 05/07/2017 20:42

The drs haven't mentioned cp but the poor gp wasn't expecting my list of worries and I don't think he knew what to say! I have also convinced my self that it could be a brain tumour, Angelman's or lymphedema. )Cp is almost preferable. I just don't know if I am cut out for it. I'm an average mum, not a superhero mum.

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NeedMoreSleepOrSugar · 05/07/2017 20:44

Far easier said than done, but try not to worry.

I know several dc who weren't rolling or sitting at that age and are fine. Some had additional medical needs, others just took a little longer to do it.

I have a member of staff with cp. He works full time, has a great social life, entirely independent etc. He's of course had his challenges over the years, but it has a minimal effect on him now.


user1497480444 · 05/07/2017 20:45

Do you reflexes cause you bother day to day

I'm dyslexic and dyspraxic, so it affects me day to day, I wouldn't say it bothers me much though, no.


zivashighkick · 05/07/2017 20:48

User, that's reassuring. I'm being assessed for Aspergers myself so I understand that something can affect you but not bother you as such. I can handle a bit of neurodiversity but this is so out of my comfort zone.

Thank you for replies, it is helping me get some perspective and back away from google.

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blankface · 05/07/2017 20:59

Sorry, I know this isn't what you want to hear, but you need to stop catastrophising and let the professionals do their job.

With very young children, it's often too difficult to tell what's ordinary behaviour, what's permanent behaviour and what's definitely different to the norm behaviour. Children develop at different rates and have very disparate skills at his age, so there aren't a huge amount of benchmarks to be guided by.

Barring any immediate diagnoses that are determined not so much by observation but by things like blood-tests, you may well be told to wait and observe and see what the next 3 or 6 months bring, and you may be told this several times. Or the waiting list to see a professional for your first and subsequent appointment could be months.

I do know how frustrating it can be when you want answers and it seems no-one will commit to let you know anything, but it's because they want to be absolutely sure.

It will be frustrating, but you do need to be prepared not to be given any immediate diagnoses and you need to learn how to deal with the frustration of that, so it doesn't impact the time you spend with your lovely son.

Learn to love him for who he is and don't spend your time together comparing him to everyone else's child, he's your wonderful son and he will be however he will be, just as other children will be however they will be.

Your job as his Mum is to love him unconditionally - I'm sure you already do Smile Flowers


zivashighkick · 05/07/2017 21:07

Blankface, I suspect you are right. A diagnosis may not be quick. Its hard not to compare him as my dsis and next door neighbour have babies the same age. They are into everything and full of beans. My ds seems to just anxiously watch the world go by. He is wonderful in many ways though and I know that should be my focus. I just want him to have a brilliant life and not be held back by anything. I go back to work in a few months and he is due to go to nursery. I just can't imagine leaving him when he seems so vulnerable. I don't think I have what it takes to be a sahm though!

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OhWifey · 05/07/2017 21:13

Just wanted to pick up something you said upthread about just being an average mum, not a supermum. You will amaze yourself at how quickly you realise you're wrong about that.


UserThenLotsOfNumbers · 05/07/2017 21:14

If it reassure you my best friend has cerebral palsy.
He did well at school, has a great career, lovely house and many many friends.
He has mobility issues yes, but he's been able to do most things and enjoys life in general.


zivashighkick · 05/07/2017 21:25

Ohwifey, I really hope so. I'm currently 'leave the house with bra on display and baby sick down my back' mum so I would have a long way to go!

User, it really does reassure me. I've had stupid thoughts lime 'what if he wants to carry his new bride over the threshold but isn't strong enough' or 'what if he has a burning passion for rugby but can't play'. Its exactly as MaxandRuby said, I'm trying to picture the next 30 years!

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sallysparrow157 · 05/07/2017 21:30

Whatever it turns out to be (if it is anything of significance at all) the fact that you've sought help and support whilst he is still so young is fantastic. The developing brain is an amazing thing and, if they do find anything, getting whatever level of support he may need started at such a young age will really help him to reach his potential


blankface · 05/07/2017 22:06

"The drs haven't mentioned cp but the poor gp wasn't expecting my list of worries and I don't think he knew what to say! I have also convinced my self that it could be a brain tumour, Angelman's or lymphedema. )Cp is almost preferable."

Being as you have an Asperger's dx coming up, have you considered that IF your little one has anything at all, then he MAY have ASD? Surely, that and its co-morbids would be the first consideration before all the stuff you've terrified yourself with above?


zivashighkick · 05/07/2017 22:26

I think its very likely that he does have asd or similar (I suspect his dad, my dh has add). Could that be enough to delay development? I certainly have several of the traits of retained reflexes but I was apparently pretty average as a baby. I would love to think that could be the whole explanation.

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SquinkiesRule · 05/07/2017 22:28

Both my boys didn't roll by that age I think they were both so chubby, one never crawled at all (but got up and walked across the room just after 8 months, one didn't walk till he was 16months or so. Both are fine, no ASD or other diagnosis.
I had a foster baby who had retained reflexes, couldn't roll, crawl or sit at nearly 10 months, and one day just took off and seemed to get it all together in a few weeks, he saw a paed as they thought he had CP but paed said no. He's also fine, no issues, no ASD. Don't borrow trouble, wait till he gets seen and wait for the doctors to check him out.


zivashighkick · 05/07/2017 23:08

Squinkies, 'don't borrow trouble' is a great phrase. That might become my mantra for a while. Your post is so reassuring. I will persist with tummy time and hopefully one day he will just think "stuff this" and wander off!

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RandomMess · 05/07/2017 23:12

You do know there is treatment for retained reflexes don't you??? Had DD treated and started it myself.

I know of an excellent and inexpensive practitioner in Windsor if you're anywhere near there.


neverhadanymarblestolose · 05/07/2017 23:12

My 5 DD has retained STNR. She was late in sitting unaided (around 11 months), she commando rolled everywhere instead of crawling (didn't start the rolling until 10 months). Turns out she also has hypermobility in lots of her joints, which is why she was late in sitting, crawling and walking.

She is a NT 5 year old. Clumsier than the average child, but otherwise thriving in life.

Try to relax whilst you wait for the referral to come through (easier said than done I know). But worry is the thief of joy.


Storminateapot · 05/07/2017 23:24

One of my sons was very slow to develop and I stressed myself into shreds over him because I knew something wasn't right and it took me ages to get anyone to listen. I was right, he did have problems, but with early diagnosis and the right support (be ready to assert yourself and push hard for him) he is now 15 and achieving way more than we ever dreamed.

I don't know if this will help or not, but I'll post the link:


zivashighkick · 05/07/2017 23:24

I knew the wisdom of mumsnet would make everything seem more manageable. Random, is the treatment physio? That is all I could find online but all aimed at older children. Could you pm me the details? I'm not near Windsor but they might be able to point me in the right direction.

Never, I would be happy with clumsier than average. Did your dd ever seem to be unable to weight bear on her arms?

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zivashighkick · 05/07/2017 23:36

Storm, that poem is gorgeous and so descriptive. I need to get myself together and get assertive. I would have thought mum-instincts were woo nonsense until I experienced them!

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zivashighkick · 11/08/2017 21:01

I just wanted to come back and update this thread because I found lots like it with no conclusions when I was first worrying about my ds's development. Sadly I was right to be worried. My 9 month old has a diagnosis of leukodystrophy. We will have to wait a few weeks for a more specific diagnosis but it will be progressive and life limiting.

Any worried future mum's out there...if you have the instinct that something is wrong, it's very unlikely to be this but don't be afraid to hassle your gp for a referral.

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