Assesment appt finally through

[jambothesnowman]

Hi All

Just needing a bit of advice and pointers if you can assist me please.

One of my sons has his assesment within the next few weeks, appt arrived on xmas eve.

He will be 2 in 2 weeks time and is a twin. He is a floppy boy for example, if you pick him up to carry jim cuddle him etc he flops like a new born would, he does not hold himself up like he has no strength.

He is very very clumsy when he walks he falls down all the time with or without shoes and also drags one of his legs too.

Spoke with a friend of mine who has attended assesments with her own son and she feels he has low muscle tone- thank god she's the nurse and not me

She has helped us a lot and calmed me down a bit as i was so stressed by all this.

Also when my son has an awful habit too, he needs to have thing on his neck????? If hubby leaves his belt on the floor ds3 will have it round his neck walking about-well falling about.

What I need to know is what questions we will be asked at the assesment. We do know we will be seen by paeds, physio, salt too. also see dietician on 13/1/06 as he is way underweight.

I have also posted before and a few mnetters have also pointed too dyspraxia.

Any advise and pointers will be much appreciated please

Keep a diary, and make a list of all your sons problems and oddities, keep it claer and simple. This can be given to the peads, physio's etc, not only does it save you having to repeat your self, but it also means you are less likely to get home and think "damm I forget to tell them XXXXXX".

Good Luck.

Hi jambo your ds sounds like my dd, she is 20months and not yet walking.

She too drags her leg behind her when she crawls, we have been told that she has development delay and infantile benign hypotonia but this isnt a diagnosis-it is a symptom of something else-what we dont yet know.

Let us know how you get on

HTH

Thank you for your replies will deffo update you.

BUMP

Jambo - can't help with any of the assessment stuff, but just to let you know that my 13 month old has a real thing about the back of her neck. She drapes all sorts of things around it - tights, wool, jumpers, belts etc. I think it just feels nice! I just make sure that there is nothing too long for her to wrap around in case she chokes!

thanks littleifsh.

dt2 has so much going on with his health i was probably just overreacting

so stressed with it all, and frightened too

It's quite understandable that you are feeling frightened and stressed. Tensing's idea about keeping a diary of anything you might want to mention is a great idea as it will help you to focus on what you want to ask and tell about your ds at the appointment.

Let us know how you get on.

Have started writing down bulletpoints for the appt as a reminder

will update

When important appts come up it is a good idea to keep a diary. I did it for DS's Transition Review recently. Just an A5 notepad by the phone in the kitchen. I think it made a massive impact on the professionals and I sent it to all of them. It wasn't every day, just when things happened so it was quite negative but seemed to be very effective, several of them commented on how "powerful" it was. It ran to about 10 A4 sheets so a bit of photocopying but well worth it.

had a call this morning to tell me that the appt for 1pm today is now cancelled as doctor is sick

we have waited since october and now it is here it is cancelled

god i want to cry

had 1st physio appt today with the wee fellow.

confirmed he deffo has low muscle tone and joint hypermobility.

she also advised i push for cdc appt too which i have done and he will be seen there on 16th feb

she was lovely and good with dt2

just wanted an honest and frank answer about what we are dealing with but none given today

she has also reffered hom to ??????)sorry cant remember the dept name) but the people that will give him special shoes or insoles to try and ease his walking

.

OK dt2 seen orthotist on friday and was measured for his boots. They will be ready in 5 weeks

TOMORROW we have his assesment at CDC which now I am feeling a bit nervous of.

Taking a friend with me who has experience in ther CDC and she will keep me right and tell them things I probably will forget- thats with me having it written down too

Fingers crossed we get some answers tomorrow

today's the day and I feel all nervous.

2pm seems so far away right now

Hope it goes well. I always get nervous at these type of appointments but everything is usually fine and staff pretty understanding.
Take some notes to promt yourself, just in case your mind goes blank.(Always happens to me)

Good luck with the appointment. We're about halfway through the process now, we've got one more multi-disciplinary session to go to, a medical and then the results. It's such a stressful process

well assesment went well, thank god I took a friend with me I came out head like mince and she needed to explain it all to me.

DT2 was put on special needs register today but we have no diagnosis. Recalled again in 6 months meantime, salt are coming out next week, ot on 6th march and pre school teacher too

Busy with all the appointments just now want to know what we are facing

Glad it went ok Jambuttie.

my head is like mince tonight after todays appt, i soooo wanted them to tell me what was happening or ther thougts but not to be