Cerebral Palsy
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3 months old and waiting for diagnosis

NRINRI Member Posts: 6
edited September 2014 in Cerebral Palsy
Waiting for a diagnosis.

My second daughter was born in february this year after suffering some stress in the last hour of labour (don't even get me started on negligence and CTG readings!)

She has at present 2 definite periventricular cysts on her brain and is waiting for an MRI scan at the end of June.

I am 98% certain she has CP, when I compare her development to that of her older sister I know she is way behind

She is 14 weeks now and she cannot hold her head unaided, she favours the right side of her body, she seems to keep sticking her tongue in and out an awful lot, she is VERY dribbly and she has periods of being really quite stiff and quite floppy. She hates being left alone and seems to need constant reassurance.

I am desperate for the paedeatrician to actually diagnose her so we can get on with helping her, asking for physio etc but while we wait we just get more and more worried.

At what age should you expect a diagnosis? Especially based on the info I've given!!

Replies

  • NRINRI Member Posts: 6
    Thanks for the reply

    Am I right in thinking that those with CP often have bladder dysfunction?

    My baby girl pee's an awful lot and also gets quite badly constipated!
  • drbruneldrbrunel Member Posts: 16 Connected
    Its difficult to say...Generally, most doctors will wait for as long as possible (Up to 2 years) to make the diagnosis due to the fact that the babies brain is very much plastic and can repair itself to a certain degree with the appropriate help and therapy..

    Just because a baby is behind does not mean that he/she has CP...Although with these symptoms and the history it should definately be enough to push for Physio and OT support...The medical history should be enough to push for pre-ventative therapy and you wont need the diagnosis to get the help

    My adivse to you would be to put your put down and demand these services as you are completely entitled to them. Its crucial to "get in there" as early as possible between say 0-3 years old as this is the time that the majority of difference can be made..

    Good luck and keen the faith in your baby and enjoy your baby...They are a lot tougher than we are
  • renacahillrenacahill Member Posts: 145
    Hi. I do agree that the paeds won't diagnose for definite at this young age but what they should be doing is providing physio and OT support. My daughter also had a disasterous birth (placental abruption) and my grandson (2.9) was born needing resuscitating. All very traumatic. His early MRI showed damage to the basal ganglia which controls motor control.

    Luckily they provided a physio straight away to advise on handling, exercises, stimulation. These must be tailored to the individual baby so it would be very little use me sharing the tips we had but what I can also emphasis is the 'early intervention' approach. Contact Scope direct and they will start you on the road.

    CP seems to 'evolve' in some children and they can present very differently as tiny babies and by the time they are 2-3 they are completely different. What most of them do though is surprise everyone with their resiliance and the progress they make. DGS had a diagnosis at 9 months of spastic quad. which should mean by now that he is rigid in all four limbs and would be looking at muscle relaxant drugs and botox injections. Instead he fluctuates between an ironing board and a jellyfish. His sitting is improving and his overall movements are becoming more controlled and he takes several steps in his walker. We have a long way to go but believe that babies brains can rewire itself and work past the damaged area (this is called neuroplasticity).

    On a personal level I believe babies who have had birth injuries have high levels of irritability in their brains caused by the lack of oxygen and are hypersensitive to noise etc hence they need constant physical reassurance and if possible a quieter environment than normally developing babies. Observe your daughter regarding the noise situation and you may find this alone helps. This irritability is one of the most difficult parts but my daughter managed this with carrying him around in a sling all day and co sleeping. He is still a terrible sleeper (not unusual in CP) with frequent waking and jerking himself awake a lot.

    I personally dont believe in any baby being left to 'cry it out' in the hope they will learn a good sleep pattern, and even less so for a brain injured one, my daughter feels the same and comforted her baby as much as possible (my grandsons cries when not comforted were not normal 'tired baby' cries, they were ones of sheer terror :-( Of course different parents may feel differently, but its just how we feel regarding the constant reassurance issue.

    Babies can improve with therapy dramatically so start shouting for it now and dont be fobbed off. as drbrunel says they can and do surprise us, but we have to work very hard to achieve it.
  • drbruneldrbrunel Member Posts: 16 Connected
    I would say no....

    Babies generally can get quite constipated and there are a vareity of things that may contribute to this...its not necessarily being hydrated or dehydrated.....

    When my boy was in NICU he would pee quite a lot and sometimes go for days on end without going for a number 2.

    Different babies, different habits, different ways...
  • edwards49edwards49 Member Posts: 4
    I had complications just before Max was born and he was transferred to Wolverhampton Neonatal unit whilst I had to stay in Stafford Hospital due to having a Emergancy C section! It was while he was there that they did a scan on his brain...apparently all their babies in neonatal had them done twice a week as routine...they found some shadowing on the left of his brain and recommended it be repeated at Stafford. They did when he was a week and a half and they said no change so repeated at 6 weeks. Following this they sent us to BCH for an MRI...diagnosed as having hemipligic CP at 5 months! Told it would effect right side mobility (yes it has) and unsure if intellect would be affected (it certainly has not!!!).

    Whilst all the scans were being done and a month before we got our diagnosis my health visitor referred Max to our local child development centre (CDC) where he was assessed and they got a physio assigned to us by the time the diagnosis came through. I can't faultthe CDC as they have been excellent. Max now sees Physio and OT there and is doing really well.
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