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feeling scared and isolated

tashanolantashanolan Member Posts: 2
edited June 2014 in Parents and carers
hi, i first noticed there was a problem with my baby when she was 3 months old, her legs didnt seen quite right, and being a mother of 5 children i was trying so hard not to compare my babies to each other, but this niggle in the back in my head kept telling me something wasnt quite right, i was finally taken seriously when my daughter was 14 months old and she was refered to a specialist and physio, my baby elicia is now touching 20 months, and on our last visit the specialist said that she was looking at my baby having spastic cerebral palsy, i was crushed, i had heard of it before but didnt know a lot about the condition, my specialist had said to me that elicia may never walk, i dont think that i heard a single thing she said after that point, but after reading up on cerebral palsy my whole daughters life seem to fall in to place, it answered so many unanswered questions i had about my daughters developement, now all i want is to know where and how i can help my baby, elicia now sits up very well, doesnt crawl or walk, speach is one word da da, just started finger foods because up untill now she choked on solid food, she rocks a lot to, elicia doesnt know when she is wet or hungry, my elicia with lots of encouragement is a fast learner so im keen to start any technique that will help her developement further, my docters are of the attitude that there is no rush because she isnt going to get any better! but surely that cant be true, i do know condition wont get worse but it can improve with help but just cant seem to now get drs/specialists to take my concerns seriously, maybe im being a worry guts but i cant just sit here and do nothing, there has to be something i can do to help her, please any personal experiences and advise very very welcome, thanks for reading my post, x

Replies

  • Ellie&#39smumEllie&#39smum Member Posts: 5
    Hi,

    My daughter is 2 1/2 yrs old and was diagnosed at 6 months after i asked to be seen by someone othere than my local health visitor. We are quite lucky, She's mildly affected and she has a brilliant NHS team behind her, however after reading your post i had to comment. The single thing you have to remember when dealing with people from the NHS is simply this, They do not know your child like you know them, they can walk away at the end of a day and don't have to deal with the day to day issues.

    Your child doesn't know they are different so don't start out treating them that way, my daughter has never been told she won't manage or that she can't do certain things and she's amazing her physio and her OT.

    Everything your child does is an achievement, you will have a gut feeling deep down about how to deal with helping her aim for these developmental steps, fallow that feeling and you can't go wrong, i promise you, it might feel hopeless but have faith in your daughter, she will amaze them with what she will be able to do.

    For her speech i would say take it back to very basic words and talk to her all day long, you might feel like an idiot to start with but it does help them, everything she plays with, everything she looks at tell her the words, keep it simple but keep trying. don't talk for her, if she points at something she wants then tell her the word as you give it to her, keep her interested in everything she's doing. We bought the 'my baby can read' dvd set, they helped our daughter (although sometimes it can be a bit American) but its helped, she's now on 3-4 word sentences since we started in spring this year.

    Our physio recommends row row your boat to help develop core muscles, and could make the rocking have some purpose.

    Walking will come with time, and sadly only when they are ready, i found that Ellie would pull herself up to the sofa if i placed a smartie on it for her to get, once she had the reward system sussed she was up and down all the time, but it takes a while to build the muscles up to be able to support them.

    And finally, i always find that if Ellie has a long nap during the day she copes much better, it might work for you once she's on her feet.

    I hope some of this has been some help, it sounds horrible and its taken me 2 yrs to come to terms with it but sadly its true, When it comes down to it its up to us to help our kids because we do know whats best, its not always easy and sometimes you have to swallow down the hurt and tears and just keep going, it's not always about getting to the achievement, its about how they get there

    x
  • renacahillrenacahill Member Posts: 145
    Hello. There is lots of help out there and early intervention is the key. Your daughter should have been picked up far earlier by the HV for her slow development so that you could have had services underway asap. Get your GP to refer as urgent. If not change GP! HV - get on to them. Now is the time to be kicking up a major fuss. Ring the hospital physio department, you probably wont get anywhere directly as it is the community paediatrician who deals with referrals to services, as they may advise. Really you must really start shouting in all directions for the help you need. SCOPE - should also have good advice. From our own point my grandson had a birth trauma so the physio, OT, paed, speech and language, dietition, were there from the start, along with hydrotherapy and now portage. There is so much to get your head around - it has taken us over a year to negotiate the system and we have not had to push for anything, which you must now do. BRAINWAVE have 3 centres around the country and use conventional techniques and which may kick start your therapy (just google it).
    The good news is that alicia can already sit. I read that children who can sit before they are 2 have the best chances of walking! Get this book 'Teaching motor skills to children with cerebral palsy' by siegelinde martin from Amazon - it is the best book for pictures, explanations etc.
    Take with a pinch of salt what the experts say, they alway paint the bleakest picture, there are some amazing things these children do. We have noticed progress every week, tiny little steps forward but they all add up eventually. Plenty of other people will have help and ideas, but you need services, especially physio, up and running in weeks not months. If you can afford private in the short term it is an idea, but they are expensive. Find out all you can about CP. The internet (when googled) paints the worse case scenario every time, and is very scary. You also need to meet parents in the same position as yourselves because it is they who give you the most hope and encouragement .
  • HextalHextal Member Posts: 9
    Hi there. I'm sorry to hear your story, but can relate. I'm new to this too, so i'm sure there will be people along offering more thorough advice. However, i've had exactly the same experience with the hospital staff telling me there is no rush and it is how it is - very helpful.

    Not sure whereabouts you are geographically, but the NHS tend to have a number of Child Development Centres (sometimes going by a different name) around the country, which i've managed to get a referal to (not without lots of shouting, mind). They offer a range of services, physio, occupational health etc etc. The hospital didn't bother mentioning it to me (i only found out by twaling the internet) so am assuming they may not have mention it to yourself.
    Hydrotherapy seems to work well, though can be a bit difficult to get hold of (for me at least, may be easier where you are). Mathilde, my daughter, reacts really well to being in warm water, almost like she is a different person physically. However, local swimming pools may be another idea. The water in the kids section is warmer than the adult section but still not up to hydrotherapy/bath temperatures, but with the aid of a wetsuit it's not so bad.

    My main advice would be to not be backward in coming forward, if you think they are being unhelpful tell them - i've started doing that recently and it's made a huge difference. I'm certainly not saying be rude but don't worry about being very very very direct. We've met a couple of useful people from the health service, but the majority are pretty much useless on the subject. The main thing that i've found is that they generally won't tell you anything unless you present it to them as a specific question/statement in the first instance and then ask them to confirm/deny that assertion. It took a 4 part question on my part before they actually confirmed my ascertion that, based on an early MRI scan, my daughter had CP, they were more than happy not to tell me.

    As I say, i'm sure there are people on here with comprehensive advice, but would definitely try to find your local CDC or equivilent and get a referal from your GP - (i've been informed by the CDC staff that referal from GP is faster than referal from hospital due to stricter turnaround times on external referals).
  • tashanolantashanolan Member Posts: 2
    hi, thank you all so very much for taking the time to help and offer advice to me, im not a very confrontational person by nature but it appears that i am going to have to start being firmer with theses doctors, i will certainly be purchasing the book mentioned and any others i can find too, i have spoken to elicias hospital pead specialist today but still no joy, they wont up physio more oftern than every six weeks till she turns 2 yrs old, niether will occupational therepy start till 2yrs old either,so im going to ask my health visitor if she cant give them a little nudge to up sessions, if not i will look into private sessions for elicia, once again, many many thanks to all, tash x
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