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MRI, cp, or hypermobility

(8 Posts)
madelynmum Sun 23-Apr-17 12:56:11

So my daughter was born not breathing (day before due date). She was in nicu only for a day then scbu for a week.
She was our first and didn't notice delays and how floppy she was ( was only until I had my second that we knew it wasn't right),
At 18 months we saw our first paed who diagnosed her with hypotonia and hypermobility he also booked her in for a emergency MRI!! However she had a reaction to sedation so never had it, and later a different paed who didn't know us said to not bother, it took 3 months to get physio And by this stage she was taking steps!
So they didn't want to know and said she was delayed and that's why. By her second birthday she was also diagnosed with global development delay. By her third birthday autism and speech disorder. (She has a delay but due to her making abnormal speech sounds it became a disorder).
She is 6 now and back with physio, she is very hypermobile and very "fatigued" and has very very week core muscle!
She can walk, run very slowely and jump. She is very uncoordinated. She is learning to walk faster. Her thighs get tight though. Although she is hypermobile her legs are straight if that makes sense. She is still delayed.
I feel it's worth a MRI! What do you think? Sorry to rant away. I suppose I just want answers

Rockinghorsehay Sun 23-Apr-17 13:03:44

It's a totally personal decision. With younger children, and maybe with your daughter because she is delayed, they would do it under general anaesthetic usually, so it's quite a big thing to go through unnecessarily, but if you need to have answers then it may be something you need to do. Our son has had several and they have been fine but didn't give us a very clear answer, so even with an MRI you might not get a clear picture of what is going on and what the cause of her delays are. It is really a family decision and completely personal to each child/family, unless the doctors say there is an urgent need for it and then of course it's different. I personally wanted an answer but have accepted now we might not get one.

madelynmum Sun 23-Apr-17 13:08:22

Thanks it's so difficult as she was so close to getting one, from the paed she had as a baby, it took days for them to work out why she had difficulty breathing at birth and why she was so floppy, it was never followed up and just blamed on a infection!
But he was one of the doctors their at the time who struggled to know what was wrong when born.
She was 2 at the time and said she would have to go to a different hospital.
Like u say we might not get answers but I suppose I wonder if something was there would she be offered more support (it's took 5 years to get physio involved, ever. That won't be weekly).

Itsnothingoriginal Tue 25-Apr-17 16:30:22

Agree it's a personal choice as an MRI doesn't always reflect the symptoms. Sounds like she had a similar start to my dd - born not breathing, we were initially told she had an infection and she spent a few weeks in NICU /SCBU. DD did however have a couple of seizures so was given an MRI at 2 weeks which showed some damage. She has low tone/balance issues and a diagnosis of 'very mild' CP. The CP dx has definitely helped to get support at school and services for her.

madelynmum Tue 25-Apr-17 17:15:42

Can I ask does it just effect your daughters whole body or just one side?
Thanks, she has had. No seizures but was tested for absent ones a while ago but was all clear. She has a statement already as so delayed. But the fight for the physical side has been awful. Over 5 years

Itsnothingoriginal Tue 25-Apr-17 20:23:07

My dd is affected mildly in all 4 limbs and trunk. Glad there were no seizures to worry about -,very stressful isn't it sad I really hope you are able to find more answers about your dd's physical delays. Although it was awful to hear that our dd's MRI wasn't clear, at least we knew what to potentially expect.

Tainbri Wed 26-Apr-17 15:54:19

Hi, my son has hemiplegic cerebral palsey (right sided) similar to what you're describing. We had MRI later (were offered one when he was a baby but declined) he has spinal hemiatrophy also aphasia, and general learning difficulties. The MRI really just confirmed in a picture and gave a label to what we knew but didn't change anything.

Tainbri Wed 26-Apr-17 15:56:33

Actually, I'll re word that. It didn't change what had happened, but having a proper diagnosis does give more weight to accessing services

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