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Results of mri scan getting nervous

17 replies

meea · 24/08/2004 17:51

I am expecting a phone call from my sons consultant tomorrow when i should get the results of DS scan.I know that this seems really silly but i am not sure that I want to know.If it confirms what we suspect which is mild cp Not sure if it will make things easier.On the other hand if it shows nothing what happens then where do we go from there .I am so exhausted due to his terrible sleeep that i can't think straight.My son has been has been refused melatonin for his sleep due to financial constaints does any one think that a diagnosis would change that decision.
Our Hv is useless his portage worker hasn't been since the 1st of july due to holidays.
I guess what i'm saying is HELP do we as parents have to totally loose it before some one listens.

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Debsbabe · 24/08/2004 18:53

HI Meea

Good luck at the consultants tomorrow honey i hope it is all good news for you. I hope they can figure something to sort out your sons sleep problems soon.

Love and virtual higs Debbie and Cameron xxxx

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Fio2 · 24/08/2004 19:02

How old is he meea? We went through all this with our daughter, my heart goes out to you, it is very very hard {{{{{}}}}}}

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mieow · 24/08/2004 19:14

Hi Meea have been through 5 MRI scans, 2 with DS, 2 with DD1 and one with DD2, Ds and DD1 have both got mild/modarate CP, DD2 had a scan at 1 week old coz I demanded it.
I found it a huge relief with DS that there was damage and that was causing the problem, as it took 2 years to get a diagnosis, but with DD1 I was in shock for a few days and was very tearful, I think it was because I hadn't expected it to happpen again.
I think that both reactions were normal, and whatever happens tomorrow, remember that he is still your lovely DS who you love, a label doesn't change that (((((hugs)))))

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mieow · 24/08/2004 19:17

oh and the reason they had 2 scans was because after about 2 years the consulant here thought that it maybe a progessive disorder and ordered another MRI, which showed no progession

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meea · 24/08/2004 19:29

He is 2 and yes he is gorgeous guess i'm having a bad day. lack of sleep doesn't help my mood very much.

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006 · 24/08/2004 19:44

This reply has been deleted

Message withdrawn at poster's request.

lou33 · 24/08/2004 21:31

Hi Meea, my son is 3 1/2, he's my baby and he has moderate/severe cp. The thing about cp, which makes it so weird, is that an mri can show masses of brain damage , yet the child have hardly any signs of cp, or, as in our case, have a small amount of damage, yet cause many problems. In fact the initial repost couldn't see any damage at all, so it was sent off for a second opinion to GOSH, who confirmed the damage. I felt exactly the same, not really wanting to know, but I think I already did(I had suspicions that were brushed away since ds was 7 m old), and it did help ds , if not me and dh, because his problems had an official name, and suddenly we could have various treatments and therapies that hadn't been offered before. It has helped with nursery, and will help for school, as he was easily statemented. It's completely natural to feel emotional about it, this is your baby, you love him and have want the best out of life for him, but irrespective of the result, he will be the same little boy you knew before you walked into the doctor's office.

Good luck

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heartinthecountry · 24/08/2004 21:51

meea - I think the advice and support given here already re: the MRI says it all. I just wanted to add my own virtual hugs {{ {}}} and empathy. I've been there.

Unfortunately I think the reality is sometimes parents do have to lose it before any one listens. This is a really really stressful time for you and you need support. I'm getting the impression you feel like you need someone/something to help see you through this. If your HV is crap, go to your GP. If they are crap, think about contacting SS. There are people out there who can help in all sorts of ways. You talk about being exhausted - do you get much (any) respite?

It's not much, but if it helps, keep posting here - no matter how down you feel, or how hopeful. There are lots of mums here who have been exactly where you are and can help with all sorts of advice or just hugs.

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meea · 25/08/2004 10:48

Thanks for everyones support yes my health visitor is crap my sons gp is crap and only works one day a week at our practise so you can imagine what getting an appointment is like.
We don't get any respite although he have started paying for him to go to a private nursery with dd2.Which we can't really afford but hey we have to keep sane don't we.I am sat here waiting for the phone to ring and knowing val she probably won't ring at all.She is a lovely wonderful caring person but she is so busy.We havn't had any contact with social services what kind of help can they offer.I have always been nervous of getting involved with them.

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chonky · 25/08/2004 13:02

Hi Meea. I went through this with my dd a couple of months ago, so I just wanted to send some more virtual hugs to you.
Have you thought about Homestart? I know very little about it except for the fact that I asked my GP for a referral & he couldn't even manage that (I ended up with a referral to the NCT, which I'm already a member of & they're hardly in a position to give any respite). I will try again, when I can summon up the energy!

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Fio2 · 25/08/2004 13:06

meea are you claiming DLA (disability Living Allowance) and if you arent working or earning less than 79 a week you can also claim Carers allowance.

i know what you mean about social services, I have avoided tham at all costs and only accepted a chair off them as it was through the OT. I am seriously considering getting homestart to asess though as I think if things carry on like this I am going to lose my marbles. Know exactly where you are coming from!

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Fio2 · 25/08/2004 13:07

CHONKY YOU JUST RING HOMESTART YOURSELF AND oops caps ask them

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heartinthecountry · 25/08/2004 13:50

Meea - I really avoided SS as well but have recently contacted them. It really depends on where you live as to what help they can give/how helpful they are. I know you may find it is more stressful trying to get something out of them than not bothering (ask Jimjams!).

But, in theory they can provide respite care, usually in the form of direct payments so you can employ a carer for your child. How much money they give you depends on your case. I would have thought this is one place where a diagnosis may help. It is fairly flexible I think so you could for example pay someone to look after your ds while you spend time with your other children, or get someone to look after other kids while you spend more time with ds. I can probably find more info if you are interested.. or davros is the resident expert.

Homestart is a really good idea too. Don't think you could leave them with your kids but they might look after them while you pop upstairs for a kip!

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chonky · 25/08/2004 17:43

Thanks Fio2 - have found their number and given them a call.

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Dingle · 25/08/2004 23:27

If Homestrart isn't going to happen please try Crossroads- I had both visiting in the early days. I chose to keep Crossroads going as it is "Caring for the Carers" and will not stop when dd reaches 5. Crossroad say on their leaflet"....we introduce a care attendant who visits the home to take over or assist .....This allows the carer to go out and have a much needed break...."
I haven't been very sucessful at links so here is the website- www.crossroads.org.uk
They are only in certain areas.
Good luck and hopefully it will be some use to somebody!

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meea · 26/08/2004 11:57

She didn't ring and things just keep getting better.I got round to having a chat with nursery about my sons portage workers visit in July.Only to be told that she had said that she didn't think that Matthew should be being seen at Ryegate and shouldn't be getting all the help he is currently getting.I can't tell you how cross this makes me.I just want to scream and tell them all to go away and leave us alone.Why do they say one thing to your face and another behind your back .Surely if his consultant thinks that he needs these services then she should know.
She also said that she felt that they were looking to hard to try to find something wrong with him.What on earth am I mean't to say to her when she next comes.AHHHHHHHHHHHHHHHHH

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meea · 26/08/2004 12:12

I rang them his scan is clear shows no damage aparently they don't ring if it doesn't show anything.Not sure if this is good new or bad news where do we go from here?????????.

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