MRI Scan & Skin Biopsy next week!!!!!

[butty]

Hi, it's a silly question and have mentioned it on thread a few months ago.
We now have the appointment for Dylans MRI Scan next week and also the biopsy for the chromosomes!!!
I am actually dreading the whole situation and also the fact that last time i had to wait 8 months for results of bloods and CT Scan!!!!
I don't want it hanging over my head, so what do i say to the pead????
When i last saw her in July she said that his chromasomes had come back inconclusive and that his frontal lobe is significantly underdeveloped, hence the MRI scan.( ithought that this was quite bad, am i right??)
WHAT ARE THEY LOOKING FOR???
Sorry, its just that i really dont know what the outcome will be and what this will mean for my little boy and his future. At the Mo he is classed as having Severe Global Development delay, pro pre perception and also hypotonia, although at first they DX him with low tone CP.
Sorry to rant, it's just that i sought of forgot about it all until now that the actual appointment is through!!!
Has any one else had these experiences???
Need to stop my mind going on overload!!!
Butty.xxx

sorry experiences or advice really appreciated, no one else to turn to!!!!!!
Butty.xxx

Hi Butty,

My dd had her MRI (under GA) a couple of weeks ago. In her case, they were looking for changes in her brain structure from when she was last scanned at 2mos old. We still have no diagnosis, but her symptoms are low tone CP and severe gdd - so the hope is that the scan results will maybe provide some answers. We're still waiting on the formal results.

Is there anything specific that you'd like to know about? I was really worried about the scan under GA, but dd was amazingly resilient and came around very quickly, and was back to normal within an hour and a half. Chonky x

thanks for your responses. Dylan has been under GA for his CT Scan, i am more worried about the out come of the MRI scan as the Neuroligist said that his Frontal Lobe was significantly under developed and i am fully aware that this is the main aspect of the speech organs and also contributes to the gross and fine motor skills. Dylan does not walk very well(only 6 steps) and he has a splint fitted. He does not speak at all apart from NO in a very wierd fashion.He will be 3 on new years day, and well i suppose its the fact that i will find out how bad the damage is and what will come of his speech if any. I don't know why they changed th Low tone CP DX as i thought with any brain damage causing delay and speech probs were down to CP or maybe the first pead who DXed him was wrong???
I think i am just worrying myself, but potentially, they sort of know my sons potentials in life on how well he will cope and also will he always need constant supervision and support???
Sorry to rant, i've been waiting for 2 years for a proper dx and now it is getting there i am scared for my son and his future!!!
Butty.xxx

if its any help bethron we are due for an mri with our dd whoi is 6 and it still scares me! its a horrible thing for any family to have to go through. Hope it all goes well

my dd has undiagnosed severe global delay aswell

Hi Thanks. Dylan has DXed Severe Global delay since 2 years old, but they are looking for something else to do with Chromosomes linked with possible mosaicism DS. I don't know why the MRI i suppose its to have a more in deph look at the underdevelopment of the frontal lobe that was picked up on the CT scan. I just hope they are not looking for anything else!!!!
Don't think i can cope with more problems than we have already!!!
I'm not selfish, i just want my son to have the best life possible!I will be there with him always, and i will always support him, I try to give him the best life at the mo but its far different from that of a Normal 3 year old. At this moment in time he is happy and content and thats more than i can hope for.
his problems are insignificant compared to others on here but at the end of the day, i think these probs will be with him for life.
Butty.xxx

Butty, I don't know anything about these specific problems, but i wanted to say sorry you are having to deal with all this. It must be very daunting and frustrating to be at this stage of diagnosis / non-diagnosis, and however distressing, i hope the results of the mri scan will give you some definite answers, and help you in the way you care for your little boy.
I hope it goes well.

Perhaps tell the staff how upsetting you find it all, and ask how soon they can give you the results?

Cheers Blu, i will make sure they know that i would prefer the results sooner rather than later adter the last 8 month wait of thinking that all was well in the brain department!!!!
I just hope that they do get a speddy appointment for me so that i can then get all the help required and carry on with things.
Butty.xxx

butty dont play down your problems. They are every much significant as other peoples. I know you said you feel like you cant cope with anymore things and thats how alot of us feel It is really hard so dont play it down as if you are being over the top.

Hope you get a speedy appopintment and it all goes well xx

thanks ladyfioOfTipton,

I just think taht with all the probs in the past with dylan that it has been a long time waiting and as i had to wait 8 months for the last results, maybe his problems arn't that bad, but then looking at the situ, obviously his problems are bad given his physical and mental disabilities.
My daughter has probable ADHD but the peads are fobbing me off coz of schools report of where she is now being quite naughty and disruptive.
I suppose i have waited that long for answers and had DX's changed, now the end is in sight i am getting scared!!!
Sorry to rant, just need to get it off my chest as not much support at home other than partner and that is when he can be arsed!!!!
Butty.xxx

I know how you feel, i feel scared too. i keep dreading that my dd's scan will show massive damage or something that will be progressive and it is all very very scarey/ the mri itself even scares me.

and partners, mine forgets when it is so i dont think he gives it much thought

God i know how you feel.
When i told my partner he would have to take chloe to school next thursday he replied he couldn't as he doesn't know where to take her!!!!!!!!
He said i will have to do it but i said that will be a problem considering i will have to set off at 6.30am to get to the hospital for his 8am appointment in preston!!!!
He is going to take her, but he is kicking up a stink.!!
I do everything with the kids, he never comes to appointments, and then when i have been he forgets to ask how they have gone!!!
I mean it's not like i dont hold down a job, do the cooking and all the cleaning and then sort the kids out, do the shopping Etc.... and he still moans!!!!
anyway, thats something else off my chest!!!!!!!! ha ha.
Butty.xxx

butty, good luck with this. DD (autistic) had an MRI scan but it didn't show anything conclusive. Sorry you are feeling so stressed at the moment. Thinking of youX

Cheers Jakbat.

I hope they dont find anything too bad with his MRI also.

Butty.xxx

It's a hard time for you, I remember when I desperately wanted answers but then realising you may be nearer to a conclusive 'diagnosis' or outline of your child's problems and what the future holds is hard, too! Who have you got to support YOU?

Hi Jakbat, i don't have many people supporting me.
My mum and her boyfriend are too busy with work commitments and i only have a few friends of whom i would rather have a drink with and forget about my home life if you get what i mean!!!
I go out maybe 2 or 3 nights a week to the local karaoke bar for my sanity as my partner will lookk after the kids if they are in bed.
I suppose i find it hard talking with others as i fear they will think that i am just groaning and moaning about things, and if i do mention it, they tend to feel sorry for dylan and myself, and i would rather not have their pitty.
Butty.xxx

That's great that you go out regularly. I know what you mean, it's difficult to talk to people about it, particularly if they have no experience of your sitaution. I think that's why mumsnet is so invaluable!

yeah, i tend to offload a lot of my problems and concerns on here in the hope of answers and general feedback and support of which over the past 8 months being on here i have found very valuble at times when the going is tough.
I enjoy my nights out as it gets me away and i also love singing. i used to be in a local band before i had the kids so it gives me a good feeling when people aplaud me and still listen to me singing, even if it is on karaoke!!!
Butty.xx

Sounds like perfect therapy, Butty!

Cheers Jakbat,
it is good therapy but it don't come that cheap, nor does my weight appreciate it!!!!!
I put any spare money i earn in commission into a kitty and blow it all on the kids, my nights out and fundays at the weekend when i grab the kids, get em in the car and just drive away to somewhere different although it is getting pretty hard to do out door things now coz of the weather!!!
Oh well, i'm sure i'll find something to do!
Butty.xxx

Dylan has come down with a really bad cold and his glue ear is worse than ever. The doc has given him some really strong penicillen but has said that i will have to ring hospital to let them know in case he isnt any better by tuesday as they wont put him under GA.
The appointment is on thursday, so i am hoping that he gets better as will have to wait ages for another appointment.
Butty.xxxx

well he has finally had all the tests needed done!!!
They put him under GA for an hour, they did MRI, Biopsy and 10 other blood tests!!!

The doc said i should hear in the next 2 weeks about the reults!!!!???? or will i???

I did however notice on the notes that i saw by accident that they were confirming their DX with these tests but i have not been told about a possible DX!!!!

What are they hiding and why havnt they told me their suspicions!!!!

Oh well, for the next 2 weeks, i will probably crack up waiting as i am now more paranoid then ever after seeing the notes!!!!

Butty.xx

Glad it's all done butty and good news with the results. Does sound like they have something in mind that they haven't brought up with you yet. Good luck with the EEG BethronX

i still think its to do with the chromosomes as that is what they were doing the biopsy for and also all the blood tests.
The scan was for the underdeveloped frontal lobe, or so they say!!!!
I just hope that they will make an appointment in the next few weeks so i can finally have some closure on the whole DX process and to also put a name to the problems!!! (if they can??)
There are so many different chromosome disorders, i wouldn't even know where to start looking!!!???

Anyway, thanks for your responses.

Butty.xxx