Here some suggested organisations that offer expert advice on SN.
Got results from dd MRI scan :-((11 Posts)
I'm not quite sure what I'm asking but think I just need someone to tell me she's going to be ok.
DD who's 14 months old has delayed development. She's only been sitting unaided for 1 month. She can't roll, crawl, pull herself up or stand. We have been seeing a physio since 6 month old as well as portage (since jan) she's doing well but it obviously very behind other children the same age. Today we went to see a new consultant and he showed us the MRI scan results that she had done the other week. He pointed out that there is a bit of damage to her brain but as he doesn't have the full report yet he doesn't know what they have put the damage down as. I've been paranoid and upset ever since DH just keeps going "it could be worse" which yes it could I know that and I know there are a lot of people worse of but it doesn't stop me feeling awful. Doc said it could of been caused during the labour (I have a bad back and pushed for a c section but was told to stop being stupid and give birth normally I did but was induced and the labour lasted forever and I couldn't push too hard as my back was killing with every push she was dragged out with forceps in the end had to have breaths and was rushed to neonatal unit where she had phumonia, phew sorry lots of information there!)
Anyway I do jabber on a lot.
Has anyone been through this? Does brain damage mean she's going to struggle her whole life? The consultant said that it will be impossible to tell as every child develops differently but I guess it doesn't stop me being scared for the future. I love her so much and she's an amazing beautiful and clever little girl she can say lots of words is always jabbering on (like me) and tends to laugh at herself quite a lot. She is happy to just sit there and play with balls and stacking cups. I know I should enjoy her as she is and I do but I'm petrified about the future. Am I just being stupid? I am also feeling guilty that our claim for DLA was approved.
Sorry for the post and hope it was ok to post it
Bumping this for you.
I have no advice, but it sounds as though your gorgeous girl has much more language than ds has and he's 19 months.
Ds had a similarly tricky start in life - decided breathing was overrated, had poor tone and ended up in ICU after a couple of fits. he was diagnosed mild encephalopathy.
I was terrified at what the future might hold and spent the first few weeks of his life in tears. I posted on here in the very early days and got lots of support - as I did before his first consultant appointment at 3 mo.
The consensus then seemed to be that some degree of brain damage does not necessarily mean that your child is going to struggle with everything. I was also told that physio was key so it sounds as though you're doing everything to support her.
I'm sure more useful people than me will be a long in a minute though!
Too early to say. Though the problems you've said relate to various gross motor issues, the chatting and playing sound promising.
Dc can have shocking MRIs and brilliant function, or be severely disabled with a normal or near-normal scan. And don't feel guilty about the DLA. Put it away in case you need to hire people to fight for her education later.
Thank you for replying. The doctor did mention about children having bad scans and no problems etc I guess it all depends on how she manages. We have set up an account for the DLA and are saving the money in their. Do we have to tell them about the brain damage or not? It says we have to tell them about any change but is this a change? She's our first and I have no idea about bringing a child up let alone one with special needs x
It's not a change to care needs, so save it for the renewal.
They're mainly interested in cures or deteriorations really (and only if that is going to change your band up or down low-middle-high)
You don't need to know how to bring up a dc, nor about SN. You'll be fine. She's just your dd, no different to how she was last week... and you already know way more about her than anyone else on the planet does,
so for anything more, you can learn 'on the job'
Beany - Mine is quite delayed too. We had an MRI at 2.5 yrs and it was normal. So it can be both ways. I would try and get another consultant to read it if possible
Beany, my ds is nearly 3 and delayed in all areas, but especially speech. His MRI was normal, all tests have come back normal, but his paed think there is a genetic cause for his delays.
I bumped into a friend this morning with her little boy, he was born very premature and had brain damage, which shows on an MRI. Very few people know that he has brain damage, and he has no obvious problems - speech, gross and fine motor skills, all on track.
One of the horrible things about where you are, is the not knowing, how things will be and why they are the way they are. It has become easier with ds as he has grown, and developed, it has and still does take a lot of work, and I still worry about what is going to be around the next corner, and have a need to find out the cause of his problems. But it is easier now, and you have to learn as you go along, and work out what is best for your dd, and it is a steep learning curve, but you will do it.
Plus there is mumsnet special needs, where you can come and moan about how hard it is, and celebrate every tiny but huge milestone and laugh about things you never thought you would find funny, and get advice from a very knowledgable bunch of parents. And someone will always 'get it'.
Come and join us on the cerebral palsy support thread.
Brain damage is one of those things where it is completely impossible to determine ability outcome. You just have to keep on at it - no crystal balls available.
The 'good' thing is, brain damage is static - it doesn't get worse. And children's brains have an amazing amount of plasticity and build new pathways to get tasks done. This is why doing as much as you can now is essential. The early years are your best chance to build those new pathways.
Dd2 is 9 1/2. She has a similar schedule to your dd in terms of sitting (over a year old) but had more complex issues with speech.
Later on, the brain damage becomes such a small part of them, but in the beginning it is overwhelming. Dd2 has always been in mainstream school. Goes to brownies, swimming lessons, ballet, and skis black runs. (She wants to ski in the Paralympics and be a lawyer).
Did he give you words relating to the area of damage? Or type? When you get the report, post them on here. There will be some of us that call snap, I'm sure.
Most importantly, be kind to yourself. Even if you were expecting it, dx can be a shock.
We were told physio would be the most important person on her life for the early years (absolutely right) and I also called the sn hv and asked if there had been a mistake with the dla. It seemed ridiculous that my dd2 had been awarded hr. not a mistake.
Thank you so much for making me feel better. I couldn't sleep last night everything was going through my mind I just lay there watching dd (she's in our room in a bed as she seemed petrified of her cot) thinking how can she have brain damage? I didn't take in any other info from him after he mentioned that. He was really good though and tried to explain everything to us in none jargon terms I think if DH hadn't been there I would of broke down crying luckily he's a fantastic dad and husband and kind of took charge.
Our physio is fantastic I think she really seems to understand dd and shows us exercises to help her. Dd is pretty bad with strangers she won't let anyone touch her or hold her only me DH and my parents and our 11 year old nephew for some reason anyone else she screams like she's being murdered.
I feel guilty about everything she's been through but I know I couldn't of changed anything.
He said once he gets the full report he will type it up for us and send it too us so hopefully someone will be able to help me understand it.
I feel like I have to justify to people all the time why she's delayed and then they tell my how little bobby or Jane walked at 10 months I just laugh and say poor u. Why should I be the poor bugger? I think it's great I can leave her and go for a wee how many mums to 14 months old can say that?
Thank you everyone x
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