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I'm scared

(16 Posts)
cakeinmyfacehole Sat 16-Apr-16 18:42:32

I just want to write this down really. My 13 week old ds is in hospital and having lots of tests. He's not growing/putting weight on. We had thought he had an allergy that was restricting his nutrient intake but it looks like it might be a brain issue.

The doctors are booking MRI scan and all sorts of other tests and have commented on his muscle tone (I don't know the terms but it's not as good on his left side, slightly), inability to fix and focus (again, he does it a bit but not as much as they expect), issues with sucking (he can but its not brilliant) and his clenched fists. Dr. Google tells me we might be dealing with a palsy or something brain related.

I'll wait and see what the doctors say, and of course will do all the research I can once we know more but in the meantime... It's bloody terrifying.

He is so beautiful and little. His brother and his parents adore him and my heart is breaking at the thought of there being restrictions on his life. I know whatever happens there will oodles of positives. But right now I am just scared for him.

Looly71 Sat 16-Apr-16 18:44:29

My thoughts are with you and your family. Please don't google it will only worry you unnecessarily. Hope all works out for you flowersflowers

KnitFastDieWarm Sat 16-Apr-16 18:51:55

I just want to offer a hand hold flowers whatever the outcome, he sounds like he has a loving family who will support and adore him.

ImperialBlether Sat 16-Apr-16 18:53:38

Oh you must be so worried. I agree with Looly - please don't Google it otherwise you'll just be even more worried. I hope everything goes well for you and your family and your lovely baby.


Haudyerwheesht Sat 16-Apr-16 19:05:40

Don't google!

Ds was in hospital a fair bit when he was a newborn and I googled incessantly and worried myself completely unnecessarily because I wanted to be 'prepared'. Silly but tempting I know.

cakeinmyfacehole Sat 16-Apr-16 19:28:19

Thank you all. Ok, wifi switched off and no more googling. I've just eaten some biscuits in the bath and had a good cry. Onwards.

You hand holding is hugely appreciated

MoreGilmoreGirls Sat 16-Apr-16 19:32:07

So sorry you are going through this. Hugs and more hand holding from me. I hope your gorgeous little boy is

daisydalrymple Sat 16-Apr-16 19:43:55

Oh I'm so sorry to read your post cake, it must be terrifying to have your little baby in hospital like that. Your post absolutely shines with your love for him, and that will keep you going until you hear from the doctors. I hope you get some positive news soon.

Try and look after yourself as best you can in the meantime. How old is ds1? Is he old enough to understand baby brother is poorly right now? Shoulder to lean on when you need it here xx

OnwardsAndUpwardsYo Sat 16-Apr-16 21:19:08

Aw it's a worry. My first born had multiple tests including a 6 month wait for gene testing when she didn't put on weight. In our case, it was just that she was small/is still small. She's healthy though, has an exceedingly high metabolism and doing very well at school. I hope the same for your little one too. Don't google, please. Sending thoughts your way.

Miloarmadillo1 Sun 17-Apr-16 08:41:39

Sending you a hug. My DD has a rare form of infant onset epilepsy that resulted in some brain damage. We had a similar experience of being plunged into a very scary world of unpleasant possibilities whilst sitting on a neurology ward absolutely terrified. Just take it one step and one test at a time. Once you have a better idea what is going on there are amazing support groups out there that will help you come to terms with and move beyond any challenges your baby might face. Life can still be good.

Kariana Sun 17-Apr-16 21:25:29

So sorry you are going through this. It must be hugely worrying and I hope everything works out. flowers

TheoriginalLEM Sun 17-Apr-16 21:29:29

sending my support. scary for you all. lets hope you get some answes soon

PetersonPeterson Sun 17-Apr-16 21:30:24

We have been there. It's absolutely terrifying. Our child did end up having a serious condition. We love him so much and you get over the awfulness of finding out that something is wrong, if indeed there is something wrong, although life changes in ways you don't think. You will survive and you will love your son more fiercely than you can ever imagine. I hope that it turns out there is nothing wrong, but I wish you all the very best and send lots of strength your way. Find other people in a similar situation and you will be ok. Big hugs.

backtowork2015 Sun 17-Apr-16 22:33:36

Just hold on til you get some definite info, so many findings can point towards CP and have a much more manageable diagnosis. My ds was investigated for poor tone and possible sight impairment and he simply required physio for torticollis. I won't tell you not to Google, I couldnt not even when it just scared meflowers

cakeinmyfacehole Tue 19-Apr-16 09:19:27

Thank you all so so much. We are still in hospital having lots of tests and still no results (I've been warned it could take a long long time to work out what's wrong).

We have good days and days when I find it really hard to keep my shit together whilst looking at him so little and sleeping peacefully in his hospital bed (& I'm missing DS1 who has been amazing).

But I'm going to re-read your lovely messages when I need a chin up moment.

schween Fri 02-Sep-16 08:58:21

Hi, how is your lo now? I'm going through this with my 5.5 month old boy and am pretty terrified right now.

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