Newbie - Brain Injury and no dx!

[Scottie22]

Hiya
I'm new here and just wondering if anyone has a lo in the same boat as mine?? My dd was born starved of oxygen and had a neonatal stroke. She's now 2 and been monitored since birth - she's doing really well but does have some problems with her muscle tone. She does walk but she's still unsteady now at 2 and can't really run or get up stairs yet. I've never come across anyone in a similar position as we've never had a dx - were told it could become CP but before we were signed off we were told she doesn't have CP.
I feel we are in a bit of limbo and just hoped to meet anyone with similar situation or advice really!
Anyway - nice to meet you all x

Hi

Is your DD having physio?

Hi
Yes - the works - physio, OT and speech therapy. It's great we've never had to fight for any help for her at all!

You are very lucky with that.

So many others have had to fight and it isn't right.

hi and welcome

There is some thought that my ds had a prenatal stroke to were waitng on a mri scan.
One of the labels he carries atm is GDD amongs others.

Good to hear your getting the help

Yes - I'm still quite confused about it myself but I think it is because her tone fluctuates and there are times when it is ok. I can see stiffness in her limbs if she finds something physically difficult but otherwise she manages with things. I've never come across anyone else in a similar situation without a CP diagnosis though.
Thanks for your replies - this seems like a very useful forum!!

Hi Scottie, pleased to meet you! There are a lot of folks on here with some great support and advice.

my son also had something the doctors described as a stroke 8 hours after birth, and suffered some brain damage as a result. GDD, learning diff's & hypotonia. He has another dx though which also causes these so its hard to tell what's affecting what.

Maybe if you are getting access to all the help you need a dx isn't so important? keep up the physio etc, we found it a great help, and you'll need all their assistance if you need to get a statement of special needs for school later.

Hi,
My story is similar, my dd just turned two and they suspect she had arrhythmia in utero and thus was starved of oxygen at birth. Now she is not CP but they say she is borderline. She walked at 18 months, and has difficulty with fine motor skills. Also has glasses, language delays, probably future ADHD, possibly cognitive delays (...), GDD,etc.

I think the only good thing about our dc having this conditions from birth is that we did not have to run for services, at least in my case.

Welcome!

Thanks so much for your welcomes and replies!

Wasunderthirty - that is interesting about your dd also being borderline - what kind of fine motor difficulties does she have - do you mind me asking? We just had an OT assessment and dd is very hypermobile but also has to think a little harder about pincer grip and grasping things. She has difficulty with bilateral movement but all these things seem to be improving.

I think profs treat my dd as if she has CP even without the dx - for some docs/profs brain injury automatically means CP from what I've been told. Our Pediatrician was very cautious not to dx though and has now signed her off!

hi scottie22 my little girl had massive stroke 12-3 hours before she was born spent 2 weeks in intensive care they didnt know if she was gonna make it fru as she was fittin non stop for about a week aventually tho the meds started to work her outlook was not good we were told she probly wont walk talk or see and will hav epilepsy for the rest of her life because the amount of brain damage (shes lost the whole back part of her brain)
she is 2 1/2 now she is registered severly visauly impaired but she can see not great but she aint blind,shes talkin has speach delays but shes doin it,yes she has epilepsy and will hav all her life and will never b free from medication and she can walk not great but she can do it her cp is mildly to right side and yes most children with brain injury will hav cp but then it depends on wat doc u talk to sum of my little girls say she has it sum call it sumin else thing is its jus a name the fact that she is doin evrythin they said she probly wouldnt do jus amazes me shes always gonna have problems includin learnin difficultys.
i know this sounds funny but your the first person iv come across that has had a child go fru wat my child has and its gd to know im the the only 1 whos been there,if ever you wana chat please let me know xx gd luck wit ur little 1 and hope all goes well for you both xx

Hi Scottie 22, my daughter was starved of oxygen and had a fit the day after she was born. She has CP. Have you been offered a MRI scan as this was how my daughter was diagnosed? It sounds like she is doing really well by the way. If you want to know anything else please ask.

Hiya,
Thanks for your replies - I was previously Scottie22 and this is quite an old thread! DD is still undiagnosed although she did have an abnormal MRI pilates but our consultant said she didn't have CP What type of CP does your DD have?

DD struggles mostly with fine motor skills and I imagine writing will be hard for her as her motor control gets worse the harder she tries to do something. She also has low muscle tone in her trunk area but is doing a million times better than we ever thought!

sharonchey sounds like your DD has overcome so much and hope her epilepsy is under control now?

spastic diplegia, (both legs and left arm are involved, although the right leg is very mild). I suppose as they are treating the symptoms it doesn't matter that she hasn't got a formal diagnosis or would you prefer that she did? Has she started school yet?

Not sure how I feel about not having a dx - I just find it hard to explain her difficulties to people without too much waffling.

She'll be starting school next year and physio says she'll need School Action Plus although how much help this will give her I don't know?!

My daughter is on school action, the main areas where she needs help are PE and maths. I'm thinking that if you have a label it is easier to get help for example in the future (may not be relevant to you) if you need a statement it might be hard to get. I may be wrong and someone might come along and say otherwise.

LeonieDelt - thanks for your reply and wow, amazing to have no after effects from the injury! We've been told DD's trunk will always be weak and her muscle tone will always fluctuate - would love to have a crystal ball at this point in time though!

I think you are likely to be right about dx for help at school pilates. Will have to see what physio advises at our next appt.