DD has been dx,d finally

[jenk1]

we saw the Paed this morning, he was as nice as pie, really seemed concerned told us that "i have extensively gone over dd,s notes since i last saw you, we did extensive blood tests and the results are in, she,s not allergic to all the things that we thought so start her on normal food,milk,dairy etc immediately, thats the good news.

The tests also showed that dd has hemiplegia in her left side, - i couldnt resist the remark is that cerebral palsy?

to which he replied yes, there are different types of CP and she has the low tone (you dont say)

So we now have a dx and he is referring her to the childrens hospital in manchester as she keeps having seizures/spasms and he said that he is requesting an MRI scan.

So at least i didnt have to argue with him, feel weird though, i thought id feel relieved but i dont and DS has been really bad today-but thats another thread if i can stay up ....

That's good news for you Jenk. Might not have been what you were expecting to hear but at least you now have the 'signpost' to move you in the right direction for apropriate help. Good luck with that.

Thanks karen, it is good news in a way because noe dd will get the help that she needs and we feel better knowing that people are now listening to us

Also he has given us Vallergan to help dd sleep as she wakes frequently during the night so we are allowed to give her that for 2 weeks and see if it makes a difference to her.

Feel more positive today, it does help getting a dx because thats the only way you can get help for your child in most cases, just got to get DS sorted out now

nobodies talking to me today

finally!!!!

but you already knew really didnt you?

here 7

hi jenk found you! you were right then, a mother always knows best. bet you smiled to yourself when he confirmed wot you already knew. are you going to start her IMMEDIATELY on dairy etc or hold back?i was told my ds wasnt allergic to dairy, gluten and tried a piece of bread and gave him major belly pains, he back on strict diet now, not putting him through that pain again for a while. glad that your paed has diagnosed correctly for CP.xx

p.s forgot to say that it must be sad for you hearing it confirmed and your poor dd and you of course.cant imagine wot it must be like to watch your child have seizures, very scary

Great news that you've finally got some answers but obviously too that your fears have been confirmed. xx

thanks copper and 7, it is sad that she is CP, but the up side is that its mild and that she WILL walk someday she will probably not be able to walk long distances-but who does these days anyway with transport readily available?

With regards to the diet, he said give her everything even doorstep milk, hes the allergy specialist so i suppose he knows what hes talking about but we have decided to introduce her very slowly.

Hi Jenk - I think even when you know something in your heart it is still hard to hear it confirmed out loud by a specialist. Not surprising you haven't immediately felt relieved.

Just another thing on the dietary front - if your dd is having seizures it might be a good idea to keep her off dairy. There isn't any hard scientific evidence that dairy causes seizures but it is recognised by some (BIBIC for eg) that it can have an effect and some anecdotal evidence. I personally know a little girl in the States for example who was having about 20 or so seizures (infantile spasms) a day - her mum took her off dairy and two weeks later she went down to 1 or 2 a day. Because of this we have never given our dd dairy products. I don't know for sure if it helps with seizure control but I'd rather err on the side of caution.

How old is your dd by the way? Sorry - I should know really as I am sure you have mentioned before

Sorry - should have explained that dd does have epilepsy and the same condition as the girl in the States.

DD is 21months but developmentally 10 months, she hasnt been on dairy for over a year so dont think this has anything to do with seizures, the Paed seemed to think it was to do with CP though.

I think she has intolerances to dairy and egg so im going to be very careful about what i introduce to her, thanks for the info by the way HITC its interesting to read.

hi jenk, forgot to say i work with a lad who has CP which badly effects both his legs, hes a lovely boy and manouveres around the secondary school really well, gets a bit wobbly when tired and i think he has to resort to a wheelchair on long day outs with his family. hes a very upbeat kid and gets on really with his peers and hasnt been bullied (nice to know for the future).he like your daughter is developmentally delayed, this only really shows in his reading age tho. hope this info gives you hope for when dd is older.xx

Sorry, just realised that what I said earlier is worded badly. I don't think there is any suggestion that dairy could cause seizures as such but that if a child has epilepsy then it might make seizures worse IYSWIM.

Anyway - I hope the MRI maybe gives you a few more answers.