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Advice for 5 month old

HextalHextal Member Posts: 9
Hi guys, just looking for a bit of advice/guidance.

My daughter was born 5 months ago and due to complications with the delivery was dead for 10 mins before being resuscitated, as such the lack of oxygen to her brain resulted in damage to the left and right occipital lobe.

Once home she made steady progress, though her physical development was very slow. However, around 4 weeks ago she started regressing, moving arms legs, head much less.

On asking for help/guidance in terms of exercises etc we were informed by the doctor that there wasn't a huge amount to be done and the few basic things we were doing would likely be fine. We were told that a referal would take up to 6 months but that we may be able to get in with the county team in 2-3 months.

I'm not bothered about pointing fingers at this stage but do want to ensure that we are doing all that we can for her with or without the help of the NHS (who seem to have thrown in the towel already). They have suggested that there is no real urgency to getting her viewed and proper physio / exercises implemented, which I find very hard to believe.

Essentially, it appears that she is still able to make all of her previous movements, just that she requires help in the form of support of her feet with my fingers to allow her to kick or putting her in the bath. Almost as if her muscles aren't currently growing in line with her weight gain. We have been spending very large amounts of time focusing on exercising her limbs over the past few weeks and she seems to be progressing again (still very slowly and still behind where she was). I've built a fairly rudementary hydrotherapy (in the loosest possible terms) tank from a large builders tub and shower head (we don't currently have a bath).

Essentially, I have no frame of reference as to what exercises to do, how long for, whether what we are doing is too much or too little, whether exercising her in water for 30min periods is good/bad etc.

Any advice or pointers would be very appreciated.

Cheers

Replies

  • mafalamafala Member Posts: 72 Listener
    Considering that your daughter had to be resuscitated I'm surprised you're not receiving any more support from a physiotherapist. You should have a team of professionals looking after your daughter's needs. Is she still with a hospital consultant or paediatrician? You should be receiving some input from a physiotherapist and occupational therapist to work on your daughter's to help her meet her milestones. Even if it's just for one session and someone could give you some exercises to do. There is nothing worse than wanting to do something and not being able to. My son didn't get physiotherapy until he was 8 months old, but we had a couple of sessions with a hospital physio.


    If you need some input sooner rather than later, I can highly recommend The Foundation for Paediatric Osteopathy www.fpo.org.uk. It's a charity that relies solely on donations and they have a lot of experience treating children with cerebral palsy and other conditions. You should still persevere with getting the NHS services that your daughter needs, but the FPO is a good place to go if you need to do something now. Treatment is very gentle and the babies love it. Mums can also get treatment up to 6 months after given birth. It's a lovely place.
  • ElibarebumElibarebum Member Posts: 11
    Hi hextal, my son (elliot) was born in much the same way and was starved of oxygen for an unknown amount of time. He has basal ganglia damage which affects his movements.
    I'm sorry you have been let down by the NHS, when they should be doing all they can to support you and your daugher.
    Your daughter may not have regressed (as that is not typical of CP) but her type may be evolving.
    forexample Elliot was diagnosed as being spastic quad when he was 7 months old, since then his muscles have continually been loosening, and it has been suggested to us that he is infact athetoid with some tighness in his legs(TBH he is a bit of a puzzle)
    has anyone suggested what kind of difficulty your daughted may have? is her hearing/sight ok?
    If not introduce her to many different textures as you can.
    reguarding physio exercise; Tummy time is the best exercise you can do, it strengthens the trunk and neck muscles and builds up balance.
    Keep stretching her limbs (your physio should have shown you how to do this)
    The hydro sounds great when in the water we do some 'swooshing' movements which involves holding around the chest area and letting the legs loose and gently move from side to side to get some side flexion.
    If you can try to get her to take some weight through her arms, as this also loosens them up.
    I hope that helps and is enough to be getting on with, at 5 months I would aim for about 1/2 hour to 1 hour of physio a day.
    Take care x
  • HextalHextal Member Posts: 9
    Guys

    Cheers for help. I've been making enquiries and found that there is an NHS child development centre near us, so contacted them directly (as the official route appeared to be patchy at best). They couldn't have been more helpful, told me ways to speed up the process, are sending me out a pack etc etc. Also managed to locate a proper NHS hydrotherapy centre nearby, again very helpful.

    Just makes me angry that the hospital have been so poor on the subject, and didn't think to mention these things, even when asked the specific question as to extra services/advice/hydrotherapy availability. Particularly upsetting when I look at everything my daughter has managed to survive so far on top of the initial ordeal (kidneys, heart,lungs not working, massive bleed in her head, pneumonia, seizures, and so on), to have her get through all of these things just so that the doctors can drag their heels and suggest that there is no rush as there is not much that can be done.

    Have also managed to get appointment with one of the hospital directors to get an update on the progress of the internal investigation that they have been conducting into the whole issue.

    Will definitely be getting the book too.
  • renacahillrenacahill Member Posts: 145
    Hi. You should be getting far more help than you are. With her difficult birth I'm surprised you havent been having physio and OT since then, just for positioning and stretching exercises. Hydrotherapy is wonderful and 30 minutes once or twice a day sounds brilliant. This book is brilliant and explains so much so clearly, I always recommend it:-
    http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_2?s=books&ie=UTF8&qid=1287141333&sr=1-2. (cut and paste)

    Start pushing and shouting for the help you need, waiting several months is not an option, early intervention is everything.
    Good luck
    Kate
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