Get DS4's MRI results tomorrow - gulp!

[MegaLegs]

I am alomst totally convinced that they won't reveal anything but will be interested to see if the blood and urine tests provide a clue to what is causing his GDD.
Feeling quite excited about it in a weird way - might have some answers at last but I won't get my hopes up.

[emkana]

Oh the quest for answers - I know it well!

Wishing you all the best for tomorrow!

[MegaLegs]

Thanks emkana - did you cut his hair??

[alycat]

Good luck ML.

We were in yesterday and today having many scans inc MRI (got the heart MRI result before we left recovery!)

I hope you get helpful information.

[emkana]

Noooooooooooooooooooooooo

And dh has told MIL to stay away...

[alycat]

Emakana, just put pics of my Seb pre and post haircut on my profile (if you are at all interested!), although obviously not as cute as you Seb...

[emkana]

alycat! He's lovely!

[Biglips]

good luck for today x

[alycat]

Thinking of you today mega

Thanks Emkana, you keep that MIL away with those shears!

[mum24boyz]

how long did you have to wait for the results hun, i got my ds 3 and ds4 both going for mri on the same day next month as we have to travel, havent got a clue how long i am gonna have to wait, but i too am optimistic i might get some answers, though i have no idea what they show up. good luck for your results hun.

[MegaLegs]

All is well - sorry didn't get on here yesterday, so tired.

The MRI showed no brain damage. The only very small thing they noted was that his left ventricle is slightly smaller than his right but as there were no signs of scarring or damage around the ventricle it was just a natural quirk in his symmetry ( a bit like having one ear slightly bigger than the other - if the whole population was scanned there would lots of unsymmetrical venticles apparently) So anyway (ramble) the MRI showed a normal healthy brain.

The metabolic tests were all normal but the chromosome test results are not ready yet so we are still waiting to see what happens there.

The neuro was very positive - said he didn't need to see him again unless his development halted ( at the moment he is reaching the mile stones just 14 months behind his actual age).

So the wait continues but feeling v.relieved at the MRI results.

Glad about the hair emkana - is gorgeous - and your Seb alycat - what a blondie. Have put some new photos of my lot on - what a rabble!!



mum24 - he had the MRI and blood test on 3rd Aug so it wasn't too long to wait for results.

[MABS]

great Megalegs x

[mum24boyz]

so about 3 wks, i guess i will cope lol, glad everythings alright for your ds hun, i got 1 in the same kind of boat, reaching milestones just about 18mths behind what he should be, the other 1 is a whole diff ball game lol.

[alycat]

I'm glad the neuro was positive, you sound upbeat too.

After my DS's MRI on tues we found out he has a heart valve issue, not the same as your DS though.

How old is your DS4? I know not all cases are the same but we were told that as long as he did things in the usual order, albeit delayed it was fine.

On his first developmental assessment (at 20 mths) he was between 10-14 mths behind - average 50%. We have worked hard with him, Portage, Physio, hannen, Makaton and exposure to many diff experiences. At last developmental tests he was still 11 mths behind but at 34 months that is only 30% = he is closing the gap. He was 3 on Sunday.

Your boys are lovely, all blonds! What a lovely lifestly you have, do I remeber that you live in the SE?

Let us know how your blood tests get on, I've never had any info from any of ours!

[mum24boyz]

alycat, what is the problem with the heart valve, my 13yr old has pulminary valve stenosis, showed up in his routine 7mth check as a murmur which was followed up, but i was told they had suspected a hole in the heart, this was a better option. just means 1 of his valves hasnt grown with the rest of them, which puts him more at risk as he gets older, but he has never had any problems with it at all, he is a fine, healthy, although overweight 13yr old.

[alycat]

mum24

He has patent ductal arteriosis, basically the duct between aorta and pulmonary artery, which is open in utero (due to getting oxygen from placenta not lungs) should close at birth, but hasn't so he has blood leaking through where it shouldn't.

This makes him higher risk of endocardtis (bacterial infection of the heart) and he will have to take penicillins for the most mundane of reasons (eg going to the dentist) to help prevent this.

Nothing very serious, risk of surgery higher than risk of Endocarditis if drugs taken properly. Don't have to go back for 2 yrs. Just a surprise as not linked to his SN condition!

What about your DS, is surgery in future likely?

[mum24boyz]

no he's fine hun, he just has to have his heart listened to every yr etc, but it hasnt changed, but same scenario, has to have anti-b's even for having a tooth out and any ops he has to have, but they have said it doesnt warrant surgery unless it gets worse as he gets bigger, he's 13 now and a big 13 and thankfully it doesnt seem to have, that reminds me though, i should chase an appt up before he goes back to school. i think when you hear the words heart and problem in the same sentence thats it, i was gutted, but there is heart disease in my family and i lost my dad to heart disease, so it did scare the life out of me, but apparently its totally unlinked.