Please could I have a hand hold? Worries about DD

[Mytinymonster]

Baby DD has just been diagnosed with something that feels scary. It's rare but loads of children and adults seem to live very happy lives in many cases barely affected. It does need monitoring very regularly though in case it does get worse and need intervention. It seems like in many cases intervention is successful.

With that in mind I know we're very lucky but I am having trouble coping. I just feel like it's a terrible dream and all I want is to know she is ok and it will all be alright. Sometimes I feel fine and other times I just feel so sad I don't know what to do. I don't want to upset DD and I know I need to get some perspective here. It just feels like all the worries I had that seemed so unlikely have been confirmed but left us with so many more questions.

We have had other difficult news recently too and maybe I'm just overwhelmed.

Beautiful DD has just crawled over and climbed on me and started babbling to me like she's showing me she is ok. Someone tell me to snap out of it! 😊

I should mention that although often manageable it is something significant and very variable child to child

My ds has ME, since he was 20 months - and it's difficult not to be over protective ime.
Just try and stay calm and remember to enjoy your dd not just worry about her.

She's the same child she was last week and last month and the day before the diagnosis. The only difference is that you have some facts that can help her in the future. Give it a while for the diagnosis to sink in and be kind to yourself x

Thank you both. I'm sure I'll get my head around it soon. I'm a worrier anyway but the idea of major surgery and unknowns is horrible. I would do anything to be able to go through it myself instead

My DS was born with just 1 kidney. It was a shock to us when we found out and as a result I was monitored very closely during my pregnancy and was induced 2 weeks early. We didn't know what to expect and the lovely consultant took us through everything that would happen during the first 5 years of his life. We expected hospital visits and check ups to make sure everything was functioning properly. It was a worrying time.

In reality we were discharged from the consultant when he turned 2 as they were satisfied he was functioning normally. We've only ever had 1 scare from it and ended up at the doctors and it's actually one of those things I forget about. We do have to inform schools of his situation and any other care environment (childminder etc) and he can't take part in contact sport but apart from that he's a perfectly normal and healthy 5 yo.

My point is that it seems scary now and understandably so, but I'm sure you'll get lots of support from the hospital - take as much of it as you can so that you're completely prepared. See if there are other people who have had the same diagnosis that you can speak to and get additional support from.

I'm glad your DS is ok Liveatcityhall, that must have been a worrying time for you

I've woken up so sad again. I'm finding this really hard and don't know what to do. I just want her to be able to have a normal happy life and although she should there's so many unknowns. I just feel so sad and worried

Have you been googling? For medical conditions, please remember that Mumsnet and online discussions in general will be heavily biased towards worst case scenarios because the people with problems will be far more likely to seek advice. Most of the people living normal lives won't be posting about it online because they don't have anything much to say, so discussion boards are skewed towards the most problematic cases.

@tectonicplates you are so right, I've found that with other things

In this case actually online experiences are much more positive than the impression given by drs and facts etc so for once the good side of the internet

My Dd has a heart condition, he's had an operation already and has to be monitored regularly all throughout his life.
It is scary but you learn to live with it.
Don't forget medical science is coming on leaps and bounds all the time, what is major surgery now maybe just a pop in and go scenario in the future.

My son has had issues with his legs and feet all his life. We were told he would grow out of it, just let him get more exercise, then it was stop all exercise and now we know he has a degenerative condition in his legs, he's 9 and can do so little compared to others his age. However he has never changed in himself and I understand his anger so much more now, we weren't listening when he told us how much he hurt. I have so much guilt about all this. We followed medical advice at each stage and now his long term prognosis isn't good for his mobility. It's so very hard

What has she got wrong with her? I realise you probably don't want to say but someone else might have the same condition so could perhaps reassure you?

DS2 has something wrong with him which is quite rare and was diagnosed when he was 13 months old. I had envisaged years of cardiac appointments and open heart surgery to try and fix the problem. As it turned out he had a couple of appointments at Great Ormond Street, a few non invasive procedures and has been discharged from Cardiology. He lives a completely normal life, plays football and is never still.

Focus on the sentence in your post "loads of children and adults live happy lives, barely affected".

For a pp, I have a friend who discovered she had one kidney at a company medical aged 42. Her view, hadn't bothered her or affected her for 42 years so she carried on. She's been carrying on strong and is now a healthy 68 year old who still skis. 99% of us only ever need one kidney.

OP what is wrong with your little girl? Have you considered some therapy.

Ds was 3 months when he was diagnosed and I went deep into the worst case scenario with the help of dr google. I know people will advise you not too but I think that’s a little optimistic. I’d say do it during the day when you can be supported. Once you’ve been there you can then look for the many many more positive story’s about people who have the condition every day.
I found it invaluable to connect with other families. Depending on rareity that might have to be online. But maybe not. For example, ds has albinism, so there’s a very small number of people widely spread but there is a lots of groups for people with a visual impairment (which is a big part of albinism) so we are in contact with support a lot.
Hospital appointments are very daunting too, for the first hundred. I treat them now as a free half day/day of school. We go to the hospital see the dr then go for a hot chocolate and the cinema (for eg) .
Basically your new normal wasn’t what you expected but it will be normal really soon.
You’re still allowed to feel crap though.

My DS1 has a genetic disorder called NF1, similar to your girl in that severity varies hugely from person to person. It has comorbidity with lots of other conditions, some of which he has, some of which he hasn't.
I've made sure I've educated myself and everyone around us about the condition. I've joined support groups and done parenting classes. I have accessed as much support for him and us as possible.
But, I also try to treat him as normally as possible, he has two unaffected siblings and he doesn't get treated differently.