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a general support thread for parents who have children with LLI?

(9 Posts)
Titsalinabumsquash Mon 28-Dec-15 17:58:45

Is there one already or can this be one? My DS1 has Cystic Fibrosis with secondary bronchiectasis and I'm really struggling at present, a support group would be great, somewhere to let it all out with people who understand a bit.

MilkAndFenty Sun 03-Jan-16 16:54:10

Following! I'd love a thread like this too.
How are you holding up op?

Titsalinabumsquash Sun 03-Jan-16 17:12:29

I'm ok, I think I'm coming out of the funk I sometimes get into when DS has a downward turn, I have serious of intense worry and insomnia where I stay up wracking my brains for something we can change or do better to help him even though I know there isn't really anything we can do.

I've started a blog to offload onto which I find cathartic although I don't suppose it will get read much.

How's life for you at the moment?

MilkAndFenty Sun 03-Jan-16 19:23:52

Blog sounds good!
DS is still only 5months so very new to all this. DS1 is 3 and his behaviour has taken a downward turn which is even more challenging.
We were in hospital in London for 11 weeks after DS2 was born and Was separated from DS1.
We've been in and out of our local- averaging about once a week at the moment which DS1 finds hard every time.
In the meantime DS2s condition is quite unstable at the moment so we're waiting on a date for a gastostromy which will help enormously but I'm now stressing about it and feeling relieved about it at the same time.
Still just getting used to having 2 DC, let alone adding all the stresses of hospital visits, constant monitoring and all the other bits that go with a child that has additional needs.
Also constantly stressed about DS1 and his view on his brother- I really want them to bond and worry that DS1 will resent him for getting so much attention and the constant upheaval he creates when poorly.

Titsalinabumsquash Sun 03-Jan-16 19:40:36

Oh he's a tiny one. I bet it's a lot to take in, my DS wasn't diagnosed until he was nearly 3 and then it all just came like a tidal wave of information and medication and statistics!
Was your little one diagnosed with the heel prick, do you know which mutations he has? I'm typing this assuming he has cf too, or does he have something else?

If it is cf then it's great that you got a diagnosis early, that's key to long term health so I'm told.
I have 3 other children, 2 more DSs and a DD, it's hard juggling a lot of the time but luckily they adore their biggest brother so hopefully when they're all older they'll understand.

Do you have access to one of the bigger specialist centres? We have shared care with our local and then the Royal Brompton in London.

MilkAndFenty Sun 03-Jan-16 20:34:01

He has a differnt condition, also genetic.
He suffers from constant low blood sugars which puts him at risk of brain damage, coma and seizures. When he is hypo there are no other back up fuels for his brain and they all shut down, unlike someone who is diabetic who have other fuels their brain can rely on.
He has poor feeding and digestion and his medications have various nasty side effects.
We are under Great Ormand shared with our local.
I've met lots of kids and parents of kids with cf through gosh and at home.
Is there any chance of him going on a transplant list in the future?

Kanga59 Sun 03-Jan-16 23:16:57

milk and fenty, do you know where by or diagnosis is heading. my son is two next weekend and has mitochondrial disease and pdh deficiency. also at risk of hypos, under gosh, spent much time in hospital etc etc. he had development delay but hitting milestones eventually Still waiting for genetic diagnosis.

Kanga59 Sun 03-Jan-16 23:18:55

Also to mention he is on the ketogenic diet. We have seen massive neurological improvement since starting it. It provides alterative fuel for the brain called ketones. migt be worth looking into. thy don't like giving it to people though as expensive. I had to really fight for it

MilkAndFenty Sun 03-Jan-16 23:25:37

I've heard of that diet but never looked into it. What is it/how does it work?
DS has diagnosis of CHI. (Hyperinsulinism)
He is also delayed but hitting milestones eventually- we've been told that until he is two we can't be sure what damage will of been done and how it may/may not effect him.
What ward are you under at GOSH? If it's rainforest (endocrine) they are fantastic!

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