Developmentally delayed baby with a possible neurological condition

(5 Posts)
Leza1 Thu 19-Nov-20 17:38:02

Our little girl was diagnosed with epilepsy at 3 months and is now 9 months. They are struggling to get her seizures under control and she is on the fourth lot of medications- at the moment she is on clobazam (Which makes her very sleepy and floppy) and epilim. She is developmentally delayed - by 6 months she could almost sit, was very strong during tummy time, alert, smiley etc but never used her hands appropriately. Since starting on clobazam she is like a different baby - can barely hold her head up let alone sit or do tummy time, no longer smiles very often, is tired, zoned out etc and still doesn’t reach out for things,. We put it all down the medication but after a couple of months we started to see some improvement but she has regressed again . The consultant has said that she thinks it is likely thar there is a neurological/genetic condition that is causing the epilepsy and the developmental delays. As we are yet to find out what the condition is (and apparently may never know ) they cannot give a prognosis or indeed confirm if she will even be able to walk and talk. So far the MRI/EEG and Microarray are clear. We are waiting on the epilepsy gene panel test. It is such a shock to hear that your perfect baby could have potentially life changing complications for the rest of her life and I feel so overwhelmed and lost. I am hoping for some words of encouragement from you amazing mum’s who have been through this. I would also love to hear from someone whose life is so much happier than they first imagined when given the news about their own child. Sorry for the essay.

OP’s posts: |
Donhill Thu 19-Nov-20 23:16:01

I’m so sorry you are going through such a worrying time. My only experience is my ds, who was very ill for the first year of his life with a genetic condition we didn’t know about until after his birth, and he was in hospital for months. He is fine now, but my experience is that when the drs don’t know what the problem is they say all the worst stuff, look at everything and then list everything even slightly wrong, and it all sounds terrifying and it’s only once you have a diagnosis that you and they can start to work out what the real issues are, and what are actually more just unknowns that eventually resolve. But it’s so worrying. Did you know there is a special needs section of MN and it might be worth posting there as I’m sure there will be people who have been where you are. The genetic condition my ds has also has a Facebook support group and we often have members whose children have a version of my ds’s condition, or don’t have the condition but have related issues - I know you don’t have a diagnosis yet, but you might still get some support or advice from an epilepsy support group. So sorry you are going through this and I hope you get some positive news soon.

Leza1 Sat 21-Nov-20 12:59:24

@Donhill - Thank you so much for taking the time to respond. I am so pleased that your little one is doing so well now. You have given me a glimmer of hope - thank you xx

OP’s posts: |
MumTumGum Mon 23-Nov-20 21:46:22

Really sorry to hear what you're going through - sounds hard.
Dunno if it's any help but there are some great epilepsy charities out there - might be other parents going though the same stuff. Epilepsy Action have a helpline and online support groups, as does the Brain and Spine Foundation.

www.epilepsy.org.uk/
www.epilepsysociety.org.uk/
www.thedaisygarland.org.uk/
www.matthewsfriends.org/ (about the ketogenic diet)
www.brainandspine.org.uk/

Take care of yourself. You've a lot to cope with, sounds like you're doing amazing x

k2331 Tue 24-Nov-20 20:31:01

Hi. I don't have experience with seizures but my (almost) 15 month old was diagnosed with a genetic disorder when he was just under 10 months old. It was assumed he maybe had cerebral palsy but after the MRI came back clear they did a blood test to check for genetic problems. It's definitely worth having that done.
I was a wreck and was so so so worried about him and his future but actually having a diagnosis has helped lots. I'm not going to lie there are still some dark days but in general I feel better. Knowledge is power so just knowing the reasons behind why he is delayed/the way he is has really helped.
I know how hard and worrying it is but please try to cut yourself some slack. If I could go back in time I would tell myself to stop worrying so much and just wait and see. It is scary to think that your child may not have the life you originally thought but the truth is you don't actually know that yet so try as hard as you can to not get into that frame of mind.
You're doing great and you're doing all you can.
My little boy has also gone through these regression phases and I would panic BUT they have all been temporary so I find myself panicking less each time.
You've got this!! Xx

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