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Test results for my son tomorrow and Friday - how do I turn off my brain?

(16 Posts)
SinkGirl Wed 08-Aug-18 22:04:07

My beautiful little boy is almost 23 months. He’s had significant health issues from birth but had a new diagnosis in May that required further testing as they suspect a genetic condition affecting the brain.

Got consultant appointments tomorrow and Friday and will be getting results. Could be great news, could be pretty bad news. How do I shut off my brain so I can get some sleep and be functional tomorrow? I’m getting myself into such a state.

MamaRaisingBoys Wed 08-Aug-18 22:10:07

I have no advice I’m afraid, but I really hope it’s good news for your darling boy flowers

SinkGirl Wed 08-Aug-18 22:23:26

Thank you. I’ve been trying to hold it together for the last three months, not especially successfully, but the closer it’s got to these appointments the more anxious I get.

He had a big regression five months ago, could be related to the stuff we’ll find out about tomorrow, could be something like ASD and we are seeing someone about that in a few weeks. It’s all just really overwhelming.

Stillme1 Wed 08-Aug-18 22:26:00

Wishing you and wee lad a good result.

IamaBluebird Wed 08-Aug-18 23:16:28

Wishing you and your little boy all the best for tomorrow. bearflowers

Basketcasing Wed 08-Aug-18 23:18:51

Everything crossed for you Sinkgirl, I really hope you have great news

FunkyHeroCat Wed 08-Aug-18 23:47:15

I find that going to bed with my ipad and earphones and watching something good humoured but not too taxing like QI or The Last Leg works quite well - stops me lying awake and worrying about my kids every night!

I think the sound of laughter and chat calms me.

SinkGirl Thu 09-Aug-18 07:49:11

Thanks everyone. Had to turn my phone off last night, lots of tossing and turning but got a bit of sleep. Just have to get through to this afternoon now!

FabulouslyGlamorousFerret Thu 09-Aug-18 07:55:30

Good luck, try and keep busy until the appointment or you will drive yourself up the wall 💐

hendricksy Thu 09-Aug-18 08:16:46

I have been in your position , it is truly hideous .. we have had months and months of waiting for genetic testing and are still waiting for some .
I feel your pain and hope it's a good outcome .

Isadora2007 Thu 09-Aug-18 08:21:40

The only thing that helped me is being very matter of fact and thinking that the situation is what it is. Today and tomorrow make no difference at all- but the change will be my knowledge of it, whatever it is. And whatever it is you can and will cope, one step at a time.
And distraction is good. Be kind to yourself today and wishing you all the best. flowers

SinkGirl Thu 09-Aug-18 08:43:06

Thanks everyone. They haven’t done any genetic testing, just various hormone levels I think, but the MRI results should show if it’s what they think it is. I can imagine the wait for genetic tests are awful.

PitchBlackNight Thu 09-Aug-18 08:54:31

Good luck OP.

MamaRaisingBoys Fri 10-Aug-18 20:38:46

Hi op. How did it go?

I hope you’re doing well, whatever the results

SinkGirl Sat 11-Aug-18 12:03:31

Thanks for thinking of me.

We saw the paediatrician on Thursday and she said the MRI confirmed the eye diagnosis but was otherwise clear. So we were really relieved.

Then we saw the ophthalmologist yesterday who told us that there were some small patches of scarring in his brain, but he was very dismissive and said it probably wasn’t an issue. Took me a while to realise he was saying that DS has some brain damage. Obviously it’s not his area of expertise but we aren’t under a neurologist so I’m really not sure how much of a factor it is in his other issues.

We are seeing the developmental paediatrician in a couple of weeks so I will be asking them about it, and if they’re not sure will ask to see a neurologist as I think we need to understand exactly what they’ve found.

PitchBlackNight Sat 11-Aug-18 20:42:08

Ok, so sounds ok if a bit inconclusive. Hopefully it won't be too long to get the other appointments.

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