DD has been diagnosed with Hemiplegia

[Jenkeywoo]

We had our appointment at the child development centre today and DD (13 months) has been diagnosed with right-sided hemiplegia. In many ways it is a relief as we have known something was 'not right' for a long time. I wanted to say thanks for the support I received last week when I posted and especially to HK78 who pointed me in the direction of Hemihelp - having looked at the site I was fairly certain this sounded like DD so at least today I was kind of mentally prepared for the diagnosis. We have been told that is it very mild which is good but I still feel worried about when she will crawl and walk. I feel quite tired carrying her around all the time and my other daughter is only 2.6 so needs me too. I don't get how give each child what they need. DD2 takes up all my time and energy and then I end up getting cranky with DD1. aarg! feeling a bit overwhelmed right now as I have spent all evening filling in friends and relatives on the phone; and DD has just woken up crying for the 4th time this evening. I read in the booklet we were given that children with hemi can find it hard to get comfortable in bed and wake up a lot - is this me trying to find an excuse? DD sleeps so badly and we wish we could help her more as she is often tired and grumpy. Anyway, I'm rambling now so better get on. Any advice or experiences most appreciated, thanks.

don't really know what to say, hope that you feel better for having the diagnosis.

Sorry to hear that. Make sure they assign you a physio and OT. Walking isn't such a big deal but most kids with hemiplegia walk if its mild, its just watching those arms as she will favour the 'good' side.
My DD was diagnosed with quadraplegia at birth and it became apparent at 3 months how severe it was. She has no movment at all but at 3 she's now learned to roll to one side.So never say never!
Goodluck.

Hi Jenkeywoo

My son is 5 and has a severe right sided hemi. I know exactly how you are feeling right now!!. Our physio used to tell us to place ds1 on his affected side for sleeping, it was all to do with weight-bearing down his side to increase awareness. We ended up rolling up blankets to prop behind him and keep him in this position. He seemed to be comfy in this position. We were lucky with ds1 and his sleeping and he was a good sleeper. Not sure if children with hemi are particularly bad sleepers accross the board though.
Some advice for you is to join the message board on hemihelp (can't stay off the thing myself ). Its great for advice and first hand experience. Everyone is really friendly and I am always 'paging' the board for other parents advice and experience. They also have loads of literature you can print off and send for.
Feel free to e-mail me and I will be happy to help you in any way I can.

hi jenkeywoo
sorry you have had this news but know that it will come as some sort of a relief to you as well.
my dd has left side hemi, it used to be quite severe but now you wouldnt know she had it, now its her legs that are mainly affected.
have they said anything about getting peidro boots for her because they are very good and will help with her walking, our physio told us to help her use her left side, we used to stroke her arm with different fabrics and textures so she could get used to the feel of them and i try to get her to use her left arm when she,s eating although more often than not she will use her other arm.
hemi help website is brill i used to be on it all the time.

HTH
jen
xx

Thanks for the advice, it's nice to hear from people with older children with hemi. The hemihelp website is great and has also been very useful to be able to tell all the relatives to look at, the information is very accessible. I woke up this morning with a real sick feeling in the pit of my stomach and then I remembered. Why is it so different to have a diagnosis when I knew in my heart already?

Jenkeywoo

You are thinking logically and sometimes in the early stages it is the right way to think . It is always hard when your instincts are confirmed and your child receives a diagnosis and a name is given to his/her condition by the professionals. The important thing is that now your daughter can start to receive the correct help and support she is going to need.

Just remember, she is your little daughter, her own little person, and not the 'hemiplegia'.

I remember back at my ds1's diagnosis, I felt like I was forced to join a 'club' I didn't want to be a member of. You will go through all sorts of feelings, the 'blaming yourself', what if I did something for this to happen, I am being punished for something, but I can tell you that as time goes by and your daughter makes you laugh and as she reaches each little goalpost and achieves something new, you will beam with pride and the proud feelings and happy times smash apart all those bad feelings you are having now.

Your daughter is going to need her mummy to be strong and positive.......start as you mean to go on, be strong .