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.

(…and he had terminal cancer and died a month later). I’m cross and stressed.

My son had west syndrome when he was little. Generally lack of news from NHS is good news. If there has ever been anything urgent like his diagnosis, have always been rung and told there was a cancellation and could we come in that day. Ask about tuberous sclerosis if the doctor's don't mention it as that is what was causing our sons west syndrome. Do not Google it. It is very variable and most of the stuff online is from the severe end and will not give you a realistic view.

I could of written your post couple of years ago.
I noticed this with my son at 2 months unfortunately it took months before anyone would believe me and then only after speaking to a consultant (who we were seeing for a unrelated issue)
He was diagnosed as infant shudder syndrome, a benign seizure disorder.
No medical professionals seem to be aware of it when I mention it.
He is now 3 and still has them but a lot less frequently. Was told he would hopefully grow out of them but wasnt told by when.
Hope everything works out for you.

I've been thinking of you OP. I hope you managed to get some answers.

Any news OP?

@Newnews I’ve been thinking of you too OP! I hope you’ve got some answers

Thank you for thinking of us ❤️ After a very stressful day of chasing consultants and admin we have finally been told that she does not have West syndrome. I was so relieved I just cried. Unfortunately I had already fallen into the Google trap and was terrified of what might happen to her so although I know some children have west syndrome more mildly, as a pp said, almost everything id read sounded really bad. So I’m incredibly relieved she doesn’t have it.
However they do say she could potentially have a benign seizure disorder so we have to have a follow up but for now I am just so grateful.
Thank you all so much for your support it really helped when I couldn’t sleep in the middle of the night to read such kind words.

We went through the same thing with my DD and the EEG was clear. They didn't know what was causing it but she grew out of it about 6 months later and its never come back. She's now an elite athlete 😊

That's the most fantastic news. I'm so pleased for you.

♥️

So relieved for you, that’s good news!

Lovely to read good news! I hope they can now get to the bottom of things. Have a wonderful weekend.

I am relieved for you op.

I hope your daughter continues to get the care needed.

What a relief OP ❤️ Hopefully they manage to get to the bottom of things soon!

That’s good news, wishing you all the best