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angels?

(13 Posts)
dsrplus8 Fri 24-Oct-08 16:31:11

my youngest has developmental delay, 3yrs and only a few words (repititon when prompted,salt)now consultants want to test 4 angelmans syndrome ,metabolic disorders ,and other conditions,is there a point to this ?am unsure as to let the blood tests go ahead, shes very happy child and only occasionly has meltdowns,would a label really help? have been told little more can b done. advice please?

feelingbitbetter Fri 24-Oct-08 16:51:56

Only you can decide really.
BUT
If it was me, not only would I want it, I would demand it. I would want to know all I can and what I probably expect in the future. In my opinion a label would help, developmental delay is a catch all statement, without any real meaning. I would want to know why.
Perhaps I feel so strongly as we may never know why my DS became so ill and I find the uncertainty about his future increadibly difficult. Right now, I would do anything for a diagnosis/prognosis other than wait and see for a few years!!!
But that's just me, I am a bit of a control freak grin.
If it's only blood tests (still horrible for her, I know) I'd have them.

feelingbitbetter Fri 24-Oct-08 16:56:10

Also, without being a scaremonger here, I would want to know if she would be susceptible to any serious health issues (I believe Angelmans has a risk of epilepsy), to learn all about them and be prepared as best as I could.

You may also have the tests and they all come back negative. At least you'll know you did what you could.

HelensMelons Fri 24-Oct-08 16:59:44

This is a very tricky one dsrplus8 - my ds2 has asd. Our Ed Psych has suggested that he may also have ADHD; when were discussing his progress at school, we asked how they were managing him given the suspected ADHD, etc. His Classroom Assistant also has a child with asd and I asked her about medication and she said that some children are medicated and some arent' but the words she used were "it's your personal choice".

I thought this was a great statement because it is about your own personal choice and it's nobody elses business - obviously in this case because medication for ADHD can be an emotive subject and you have your own personal feelings about your youngest child.

However, I understand your fears about labelling. I was very worried about this prior to and during diagnosis but I don't feel like that anymore. My ds2 is different from other children but because he has had a diagnosis, and, therefore a 'label' I have an explanation - an explanation for him, his siblings, family members, friends, or anyone else that he/we come into contact with. It has proved extremely positive.

This probably hasn't helped at all but good luck.

cory Fri 24-Oct-08 17:03:19

IMO you need to think ahead. If you come up against a bloody-minded headteacher, a useless Senco, a choice of schools where the only acceptable one for your dd is out of catchment- then you will definitely find a label helps. No label as often as not means no help.

vjg13 Fri 24-Oct-08 17:13:25

My daughter has GDD and we went for all the tests, Drs thought they would not find anything and they didn't.

I think it was worth it because it meant we could move on. We also had genetic testing as she was our first, also nothing.

It is easier to have it whilst she is little too.

dsrplus8 Fri 24-Oct-08 17:27:27

sadam just terrified of what they could find.to look at my dd ud never know anything was wrong,until she starts shreaking of course. she is really tiny, 83cm and weighs about 10kg.any this sound familliar?

feelingbitbetter Fri 24-Oct-08 17:32:36

Oh dsr, it is scary. There'd be something very wrong if you weren't utterly terrified sad.
Keep posting here tho, there are lots of Mum's with lot's of experience to help you.

mum24boyz Fri 24-Oct-08 17:41:33

ah my ds4 is only tiny aswell, still undergoing tests as he is diagnosed as GDD aswell. personally i dont belive in GDD. i think there is a reason for them to be delayed, wish they could find out what it is with my ds. so far tests all negative but i defo want a label for him yes. i agree about it being personal choice, but i also agree that in the future, that label may well be the difference between a little help, and the right help.

mumgoingcrazy Fri 24-Oct-08 18:39:23

My dd2 is currently ungoing tests for GDD as well, she's 16mo. For me, it will hopefully help predict when she might reach certain milestones and may even give us a glimpse into what the future holds for her. Nothing will change the fact that we love her so much and she will do whatever she does in her own time, but if by having these tests we can get a dx we will know for sure if she is currently getting the correct or enough treatment.

dsrplus8 Fri 24-Oct-08 19:09:11

i suppose it would give us an explanation 4 the rest of the kids, theres 8 off them ,and they dont really understand .ds2 is 8 and playing up something awful,keeps disapearing off out and not saying where hes going.reaction 2 whats going on with dd4.what can u do, its not fair if ive got to go to hospital with dd and he wants to go to the park.?.suggestions on teaching the tribe on learnining sign so they can talk 2 dd4?

mumgoingcrazy Fri 24-Oct-08 19:16:35

I don't know if this might be a bit young for your older children, but my eldest (3.5)has learnt some Makaton by watching the Something special DVD and the Singing Hands DVD. She picked it up really quick.

monstermansmum Sat 25-Oct-08 01:21:47

If there is a possibility that your dd has Angelman syndrome you are best to get an official dx as AS kids usually have hard to treat epilepsy and run a very high risk of being in non-convulsive status for long periods of time. (I do not want to scare you.) Getting a dx is not just about labeling a child-it allows you to find out about the condition and any related medical issues and also any behaviour issues and sp & L. Most AS kids do not talk (those with a deletion)there are some that use a few signs and their understanding is greater than their expression. They are great kids to be around. ASSERT-www.angelmanuk.org
Tel 0300 999 0102. Best wishes x

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