CP Ataxia? Just need to chat....

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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scaredandconfused
Posts: 2
Joined: Sat May 05, 2012 12:20 pm

CP Ataxia? Just need to chat....

Postby scaredandconfused » Sat May 05, 2012 1:02 pm

Evening all,

First of all I'd like to say we have not had an official diagnosis yet and are currently awaiting physio, consultant and MRI appts, which are all happening at the end of this month. I just need to chat with someone about the whole situation and get it all clear in my own head. I really hope you don't mind.

My daughter is 16 months old but was born at 30 weeks due to twin to twin transfusion and following the inuterine death of her sister after laser ablation surgery. She was delivered by emergency c section.

When she was born, my daughter had no difficulty breathing, was placed on Cpap for around 30 minutes as a precaution but after that had no intervention at all. On her routine brain ultrasound they detected 2 'very small, insignificant and totally normal' bleeds onto her brain but both resolved quickly. She weighed 3lb 2oz and came home after 5 and a half weeks weighing 3lb 15.

Medically she was very well. Her milestones were always a little slow, smiling at around 5-6 months, sitting at 10 months and rolling over at around 13 months. She also didn't have the 'save reflex' until 13 months either.

She had very tight hips when she was born but this eased at around 4-5 months and although she still has hip scans every three months she has absolutely no physical abnormality.

However, in December 2011 she became unwell, following 3 trips to the gp and being told she just had a virus and that there was nothing they could do, she went blue and floppy and was rushed into hospital with acute bronchiolitis. She was unable to retain her own oxygen levels and was taken into HDU and put onto Vapotherm for three days. She recovered relatively well but has since only had 11 days without some sort of infection or fever (tonsilitis, severe thrush, ear and throat infection, non specific viral infections etc etc).

She is now 16 months and she doesn't crawl, cruise around or walk. She is unable to pull herself up into standing position and when she is lay down, cannot even nearly get into a sitting position. If she is sat she can get onto all fours but she cannot move her legs whilst in that position, particularly leaving her left leg underneath her when she eventually slides forward onto her tummy. When she is standing holding onto your hands, she has (literally in the last week or so) started to try to move her legs in a walking movement, but she has absolutely no balance whatsoever and her movements with her legs are not fluent at all. Up until the last week or so she simply could not move her feet at all, it was as if she just didn't understand that she could or should.

She has fantastic co ordination with her hands, can pass toys from one hand to the other, can put tiny little items into tiny little spaces etc etc. If anything possibly more advanced that her age. She has said several 'words' although I'm not sure how much of this is simply noise sounding like words and how much she is saying deliberately. She understands everything you say to her, for instance if I sing 'wind the bobbin up' she will do all the actions at the right time. She can chew and swallow without any problem.

The only other thing that she really struggles with is that she gets completely overwhelmed by particularly stimulating situations. This morning, we went along to our local sensory room and she simply could not handle it even though we were the only people in there. She will not go into a soft play area and seems to be particularly sensitive to noise too.

I just wondered what you guys thought of this and the Doctors current diagnosis (opinion) of CP?

Just want to say, I cannot fault the hospital, Paediatrician or in fact any other health professional that we have come into contact with, they have been amazing, but this diagnosis has kind of come out of the blue as I thought he had already ruled out CP!!!

Thank you in advance for reading this, I know that even if this is CP it is very mild but it is an unknown entity to me at the minute and I am not ashamed to say I am terrified... xxx

scaredandconfused
Posts: 2
Joined: Sat May 05, 2012 12:20 pm

Re: CP Ataxia? Just need to chat....

Postby scaredandconfused » Sat May 05, 2012 1:14 pm

Sorry, also wanted to add..

She has always slept a huge amount. The reason we were in hospital for so long was only due to the fact that she would not wake up for feeds and at 10 months old was still sleeping for 18-20 hours a day.

I took her to the GP when she was 10 months due to her sleeping so much and he was concerned as she was asleep every time we went into the surgery but when she did wake up, was not upset by the fact there was a strange man waking her. She had bloods done for Thyroid Function and this came back essentialy normal but her tsh levels were raised and this remains the same now. The consultant has explained this as her thyroid being fine but her pituatory gland having to work a little harder to keep her thyroid levels normal.

She also still has a large fontinelle (or soft spot). xx