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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask for your thoughts? (SN related)

5 replies

TellMeItsNotme · 22/09/2018 16:23

My DD is 3.3. She is adorable, funny, cheeky and a madam at times. She is my absolute world and I love her more than anything.

She has some SN, and I am struggling to understand. They keep looking for a reason behind her problems but coming up with a blank. So I wondered if anyone on here had any ideas where I can go next? I know you're not medical professionals and I may never get answers but so far the medical professionals are still pushing for an explanation.

Diagnosises are:

  • Mild to Moderate Global Developmental Delay
  • Speech Delay at one point this was severe but is now moderate
  • Glue Ear - although she had grommets recently
  • Squinted Eyes that do not affect her vision
  • Asthma
  • Microcephaly
  • She was born with hip dysplasia but this is now resolved
  • She is described as on the lower side of average for height and is borderline underweight (9th Percentile for Height, 2nd for weight and below 0.4th for head circumference. She wears 12-18m clothes which are a little big on her and her feet are tiny and shoes look like clown shoes on her for a few months while she grows).

So far she's had

  • Microarray testing which showed nothing out of the ordinary
  • Over 100 regular blood tests for everything from thyroid issues and diabetes to blood disorders (there's one in my family). As well as the normal ones for hospital stays plus every time she's had an illness they've tested her again to see if she's got an autoimmune condition her white blood cells and liver function are normal. No growth conditions came up on blood tests.
  • Urine Tests again showed nothing out of the ordinary
  • She's had X-rays and ultrasounds of her legs, arms and torso which showed short stature but nothing worrying - her organs are proportionate to her body size even though they are a little small for her age
  • All non invasive tests show that she's average intelligence and her understanding is that of a 18m-2 year old

Where to go next? I don't want to do more invasive tests if they're going to be inconclusive or normal because it's not fair to her.

Any suggestions?

Sorry to post in AIBU, I am prepared to be told I UR for this, maybe I should just stop all tests for now?

OP posts:
bellabasset · 22/09/2018 16:44

Oh bless you, I am sure other mn's will have more helpful suggestions than I can make. Are you on your own or is her father there to support you?

You sound as though you are on a roundabout, perhaps give yourself a break for a few months and let her develop at her pace. Just enjoy her, all kids are individual and unique

TellMeItsNotme · 22/09/2018 16:46

Her dad and I aren't together and he rarely sees her never attends appointments and I'm not even sure whether could tell you all her diagnoses.

OP posts:
Sirzy · 22/09/2018 16:49

I think often their isn’t an answer. Ds is 8 and has a list of different diagnosis’s as long as your arm, and a few other things I suspect. They may be linked. They may not. But unless there is something that by pushing to find out would change things then my view is why bother? He is what he is and we deal with what is presented so I have stopped beating myself up looking for answers which probably don’t exist

AamdC · 22/09/2018 16:54

I agree with Sirzy , wr did get answera from the microarray ds has a chromosome deletion but it doesnt change anything and sometimes itbrings up more un answered questions

TellMeItsNotme · 22/09/2018 17:03

why bother?

I think part of it is me blaming myself and hoping an answer will alleviate that blame, but it may not.

OP posts:
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