Cp

[chopper19]

We have just been told that DS2 has brain damage which has caused cerebral Palsey. At this stage doctors are staying it will only effect his legs. He is only 5 weeks old. How long until I should expect the legs to start stiffening up and possibly stop working altogether? Has anyone else had a similar diagonise yet their child walk?

[Bo0tifuL]

So sorry to hear your news... I dnt know much about it, but my cousin had CP and it was in his legs, they said hed never walk or do anything, by the age of 24 he was driving his own car which was made specially for him, and he was doing marathons to raise money for kids with CP. :)

[Prickle]

Hi there, you must be in a dark place right now, not knowing what the future holds, not knowing where to start on the long journey of treatments and therapies. I know I was there myself just over 3yrs ago. It all seemed so overwhelming.

Can I offer you some advice my husband gave me when I was sinking into a well of dispair. It's a life sentence not a death sentence. The diagnosis doesn't change our love for them or who they are.

No one can predict at this early age just how affected your child will be. But it is fantastic that you have such an early diagnosis so you can start really early with his therapy. Have you been linked with an Early Intervention Service (ECIS) yet? Once you get into one of them it will be so much easier knowing what to do. I don't know what state you're in, I'm in Vic and I am with Scope. They come to my home twice a month to do therapy with my girl and we also do hydrotherapy with them. There are a few different ECIS available in Vic. Yooralla, Noah's Ark, Scope and a couple of others I can't remember right now.

The best thing about them is you get a Case Manager who does all the leg work for you, they know who to contact, where to get funds and they have aids and equipment to borrow as well as they will help you with all the paperwork to apply for funding for your own equipment.

With my own daughter I didn't notice her legs stiffening until she was about 7mths old, it was hard to bicycle them. I also noticed her hands stayed fisted all the time. When she didn't reach her milestones was when I got concerned (at 8mths old). Initially I was told it was mild diplegia (only her legs) but as she grew they changed that to quadraplegia because of how much her arms and hands were affected and she is very weak in the trunk.

While I was on the waiting list for ECIS I took Leacie to a private Paediatrician and Physio therapist but it works out quite expensive that way.

There are differing forms of cerebral palsy, not all kids suffer spasticity (stiffness), some are floppy and some have jerky movements. With stiff muscles the message they get from the brain is constantly making them contract and because of this as they grow the stiffness seems to increase. It's really important to do stretches at least twice daily to try to avoid problems.

It's not a case of their legs stopping working all together, they are just weaker and they don't get the message from the brain to work as they should. My girl is classed as a Level 4 on the GMFCS (second most severe) which basically says she'll probably never walk independently, she's 4 now and can't stand independently but she can walk in a Hart Walker and lean against the lounge and shuffle her way around it. If I ask her to bend her leg it takes her a lot of concentration and a bit of time to get it to do what she wants it to do. She also tires easilly and cannot stand for long periods.

I have to say though, having a child with CP has opened a whole new world for me, people I would have never of had the pleasure to meet and a new understanding of people with disabilities. There is a wonderful poem called 'Welcome to Holland', can I suggest you google it and have a read, it really puts our journeys in perspective.

If you ever need someone to chat to I'm a good listener as well as talker, lol. There are some great mum's on here that know the journey well too.

Leanne :)

[mysticshores]

At one week I was told she may be clumsy .. At 9 months may have CP .... at 18 Months it was confirmed.. She is about to turn 3 and still can't walk or talk.. but my biggest regret was worrying about stuff. In the end it doesn't really matter. She is perfect and that's all that counts. Don't sweat the small stuff is my advice. Enjoy your baby .. it's not an illness only an injury... xxxx

[chopper19]

I would just like to thank everyone for their support and kind words. I was in a very dark place when they told us about the brain damage and the cp but after a week I decided I can only take each day as it comes. I know I can cope with this and I know it could be so much worse so I am very thankful for that.

Since DS2 is still in hospital (he was prem) we havent been referred to ECIS yet. I have asked the dr but he wont do that yet. I am hoping we wont be waiting long though as DS1 is apart of ECIS for his issues already.

Another quick question for you lovely ladies. What specialists do you see when your child has CP? My DS1 is a partial paraplegic and we have an armful of specialist for him so I have been thinking hopefully we can see some of the sameones for DS2.

[Prickle]

You poor love, so you already have a life of appointments and therapies. I suppose there is a benefit to that, at least you have a heads up for what to expect. Can I ask what causes DS1's partial paralisis? Spina bifida?

I'm sure you'd be able to see the same specialists if they were compatable. Our girl is pretty lucky, she only see's the Paediatrician, Orthopedic surgeon, Gait lab, Orthotics, a specialised dentist, she's just finished seeing the eye and hearing specialists (will only need checkups further down the track now as there's no issues with either of them).

I suppose it depends on what sorts of requirements your little man will have. I know some kids have a lot of issues and some don't have many. I thank the Lord constantly that Leacie falls into the latter catagory.

[chopper19]

DS1 is a partial paraplegic because the doctors who where treating him in hospital (prem 14 weeks early) attempted 11 lumber punches on him and damaged his spinal cord. He was perfect apart from being early until the lp.

DS2 has other issues then just the CP. He has some genetic thing going on which the specialist cant diagnose as well as a cleft palate and a recessed jaw. At least the jaw and palate can be fixed with surgery but I am really worried about the genetic thing. I really just pray that it hasnt effected him metally. Thats another time will tell thing.

So much for the perfect healthy baby. Do they even exist??? I know they do but thats not meant to happen for us I guess.

[Prickle]

OMG how tragic for DS1, I can't believe they tried to do that many LP's on him at such a young age. I don't understand their reasoning. I hope you have a case against them, at least to cover all his life long medical needs.

((hugs)) for you, I cannot even begin to imagine how hard emotionally and physically it is coping day to day with your two darling little boys. Life just seems so unfair sometimes, why some people seem to be blessed with it all and others struggle on and get hit with one thing after another.

Good luck with the genetic testing, I suppose that's going to be another terrible waiting game. I know when Leacie had all her tests done I had to wait 6mths for one lot of results (from a LP) only to be told they lost the specimen :banghead: