Handhold please - waiting for DDs test results

[Newnews]

I’m really scared. DD is 6 months and has been doing strange movements that look like little seizures for a few weeks now. Initially went to doctors and got fobbed off but went back a week later as I knew something wasn’t right. Saw different doctor who agreed and arranged referral to paediatrics. Saw them on Monday and they immediately ordered an urgent EEG as they think she might have a form of epilepsy called West syndrome.

We had the test this afternoon and I am terrified. So anxious about getting the results. What makes it worse is that they said they will call me ASAP when the report is ready which “might be this afternoon or if not then Friday morning”. So I’ve waited anxiously all afternoon for a phone call but not got one so I’ve got to wait overnight and watch the clock in the morning. Im so scared for her. She’s lying next to me and she’s so perfect and lovely and I can’t bare the thought of her not being ok. My older daughter has (different, unrelated) medical issues and it feels so unfair. Would be grateful for a handhold, don’t think I’ll sleep much tonight.

I remember waiting for kids test results. Big hand hold from me. Try together up if you really cant switch off. I sometimes re do my night routine if I'm awake and stressed. Put some washing on, make a drink and watch some TV then go back up brush teeth and try again. What ever the results you will cope. You absolutely will saying it from.someone who had too much bad news on the kids in the past. But hopefully it wont come to that

Hand hold OP.
No matter the results, you've got this and you'll continue to be the great mum that you are to your beautiful DD x

Hoping for the best for you and dd

Sending you calm and healing thoughts

Another hand hold

I hope everything is ok.

x

Thank you all so much for your lovely messages. They are really helping. I have some support in RL, my DH is great but he’s also worried and also exhausted from dealing with our older dds difficulties which are not straightforward either. He also has an unwell parent at the moment which is hard for him.

I’ve managed to get some sleep which is good but dd wakes every 45 minutes which isn’t helping for obvious reasons. I always put it down to 4 month sleep regression etc but I only just realised today that it may be due to epilepsy. When she was doing her test today I think they saw seizure activity when she was asleep (the two physiologists said they can’t tell me anything, and I have to wait for the doctors report, but I could hear them talking to each other and I don’t think they realised that I know some of the technical terms they were using, and Im pretty sure they were saying it was happening while she was asleep). I think that’s what I’m finding hardest is that deep down I think I know the result, and I’m just waiting for our world to fall apart, and I’m just sat here and can’t do anything about it.

Hand hold here and lots of love coming your way. Everything crossed for good news in the morning.

Hope you manage to get some sleep and you find a way forward no matter what the problem

Sending love and peace x

Thinking of you and sending love.

Sending you strength 💪 even if you can't sleep try and rest as much as possible 💐💐

@Newnews So sorry you’re going through this OP big hand hold

I really hope you get positive news this morning. Hopefully they’ll find what is causing the seizures and be able to get to work on a treatment or management plan 🤞🏼

Well done you for pushing for another opinion and advocating so well for your baby ❤️

Big hand hold and virtual hug. You have done the right thing, have a beautiful daughter, there is literally nothing else you can do at the moment but be her mum. I hope and pray it is nothing to worry about or it can be easily remedied. The more serious it is the quicker they contact you so take heart that they would have been in touch by now if it was something to urgently worry about xx 💐

Handhold and hugs .
Know that you are an outstanding mum and your girl is very lucky to have you.
Take care

You're in my thoughts and sending positive vibes for the test results x

Sending 💐 and best wishes.

Morning- handhold extended. PPs are here with you....

Hopefully the routine of the morning with baby and older DD will help keep you going. And sweet tea, lots of sweet tea.

More peaceful thoughts and hand holding here. I hope you get news swiftly, even though that means facing what comes next.

Still here. Thinking of you and your little one.

Hand hold here too

I really feel for you. 2 years ago I had a similar wait for biopsy results for my DD and similarly felt I knew it was bad news. It was the bad news I expected but it was easier once it came - the waiting and the uncertainty were the worst part because I felt so helpless and I remember the feeling of being glued to my phone because I didn’t know when the hospital would call very very well. It’s just awful. But the wait will end, and then once you get the results you can start to plan and do whatever your DD needs
Hoping for good results and sending you love

Thinking of you. I know that wait between test and result, its agony.

The waiting is awful. The unknown...

Thank you all so much again. It has really helped. I still hadn’t heard anything by 10am and so I phoned the department who were meant to receive the results, they say they haven’t had anything so I tried calling the consultants secretary and basically I am just on an NHS wild goose chase whereby things are referred between different trusts and no one knows what’s going on. Ffs. I would like to think this means the findings are nothing serious but we had this with my DF a couple of years ago and it turned out that someone in admin had forgotten to pass something onto someone else.