Grayson has his second TAC meeting today, I am not as scared as the 1st time as I know what to expect now, but this time I feel myself going in angry.

Ashley (Darling husband) comes with me and he is a very strong person but I know they like to fob us off.

Grayson has not had Physio for 6 weeks (supposed to be every week) so I know that will be a hot topic as will the lack of SALT and wrong equipment being ordered by OT but there is another matter which came to light yesterday.

We received a letter from Grayson's Paed yesterday detailing our last review and in it she says Grayson has CP, not as a diagnosis but in general conversation, we have never been told this and to be honest I didn't think they diagnosed conditions like CP/Autism etc till they were 3, Grayson is only 16 months.

I don't really know why I am typing this post, think I just needed to say it.

I just hate having to go in and fight all the time, why do we have to demand the care when they should be automatically giving it and why do we have to ask things like the Cp question when it should have already been said to us.

Hope you are all having a good day.
Kara

goodluck sweetie, i am not entirely sure how diagnosing CP works but i do know someone who has a son who was diagnosed at 1yrs old, i think he had some sort of bleed in the brain though before he was born at 25 weeks and is still on oxygen now at 2. I'm also sure i heard somewhere the other day that is can be diagnosed via a brain scan......but i think that might be in cases like the above where there has been a bleed.

I think you deffinatly need to discuss it though, just to get your piece of mind and i would not be happy about the lack of services i can understand why your angry, aslong as you keep your cool you'll be fine

xx

i have never had cp formally diagnosed, in conversation with my sons consultant i mentioned that he had cp and the consultant asked oh have you been told? i explained that i knew he had cp because he was starved of oxygen at birth hypoxic brain insult, physio allways talked about high or increased muscle tone. his equipment and drugs also indicated to me he had cp. everytime i took him to a&e rather than go through the extensive list of conditions i just said he had cp and that was that (you get sick of repeating yourself). no one has ever questioned me since. on his pead passport it now says likely evolving cp! Alex has not had a MRI scan yet everytime it comes round he is unwell so i have delayed it until the summer, the hospital said that it would not have any bearing on the course of treatment Alex was having it was just to confirm what part of the brain was affected.

Hi - sorry to have to ask this - but what is a TAC meeting? How did it go - are you all okay? x

Hi All

Well it was quite a successfull meeting.

Susie - TAC is a Team Around the Child Review, short of it all the members of the medical prof. that deal with Grayson eg Physio, Paed, OT, SALT, Keyworker + More meet every 4 months (in our case) to discuss how Grayson is progressing and then right a Family Plan, similar to a contract on how they are going to support Grayson over the next pierod.

Lucy - Grayson also had a bleed on the brain prior to birth, I must say I was quite ignorant before Grayson was born, I knew of the conditions but not really how they worked, although now I think I am little walking talking childrens medical encyclopedia.

Lexie - Seems we are in the same position.

Basically Grayson has had MRI's which confirm a bleed which has now stopped, prior to birth. The cause of this is still unknown, so at present Grayson has CP, because there is nothing else that fits, the funny thing was when we asked yesterday, they said until they rule everything else out they can not put CP in writing - as I stated bit late you have already done that, but from there point of view Grayson is 99.9% to have CP as a condition but what has cause the bleed and the cists he has on the brain is still undiagnosed and there is a chance in the future they may find this out and then CP maybe altered, in a way its a little relief as saying CP to people is alot easier than listing a host of conditions and in terms of friends ringing me each month saying "is he all better now?" maybe they will be more understanding to CP not being an overnight cold.

I was stern but cool and I must say proud of myself to get all my points across about the lack of support, he now has weekly physio sessions until June booked and if this physio doesn't step up a new physio is waiting in the wings, they have reevaluated Graysons Medicines and some more test are being done.

In sept he goes to 2 nursery sessions a week and they said he is such a lovely child with such a sweet nature they are loving his progress with sensory dev. so that was lovely to hear.

Equipment issues are being addressed with the look to new equipment coming in 8/10 weeks, better than nothing.

They are seeing if they can help us with financial help for housing as we currently live with my sister with 2 rooms and its becoming very difficult to even move.

So all in all, I am pleased, is it enough ? No, but I am sure we all answer that cause they are our children and we want it all, disabled or not.

Once again thanks massively for all your support, this website is my saving grace at present.

Lucy/Daniel - I don't hope you mind but I have passed the www onto some of our local team, our Health visitor said this is the best forum she has ever seen and she is so leased I have you all to talk too.

Kara