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Isolating myself and DS

(9 Posts)
Tinymrscollings Sat 21-Sep-13 09:01:30

Thanks zzzz. I'm in the SE sadly or I'd be there like a shot! DS is currently weaned from all meds apart from a vitamin b6 supplement. It's just a waiting game now to see if this was a one off problem or if it will creep back in another form. He had a lumbar puncture and we're awaiting the results of a final panel of genetic tests (9 months waiting and counting!) but our geneticist thinks it's unlikely to show anything as the stuff they're looking for would manifest in other ways too and he's really well. He's pretty delayed and a bit peculiar in ways I can't quite put into words - I know they're watching him like hawks for ASD traits.

zzzzz Fri 20-Sep-13 20:24:48

Dd was born healthy pink bonny. At 8 months she had her first seizure, she seized multiple times and we were in Hospital for 57 days before we found "her" drug. She couldn't recognise me I the thick of it, she "forgot" how to use her left side. We went for the eye tests and had a muscle biopsy for genetics. It took nearly 9 months to come off the cocktail of drugs that didn't work. We have come off the drug that works twice and both times she has seized again after about a year. She's six now and life is very good. After Christmas we will try coming off the drugs again.

If you live in the SouthWest please come to one of our meet ups. I would love to meet you. If not, I GET IT, and welcome.

I have 5 children, and one (of the others) has sn and is language disordered and very ASDish. I must do bedtime for all now but didn't want to miss the opportunity to say Hi.

What meds is he on?

capticorn1 Fri 20-Sep-13 11:47:58

Have sent you a message, but just wanted you to know that the feeling of grief is so true.

As for friends, they probably don't know how to deal with this and don't understand just how difficult your life is right now, however drifting apart from friends because of this just makes everything that little bit harder.

I really do feel for you.

Tinymrscollings Thu 19-Sep-13 20:43:01

Thanks, Firsttimer, i'll give it a try. Because he isn't 'sick' at the moment I think my friends have moved on but what others have said about it feeling like grief for the life he and we aren't going to have is bang on. I have so little in common with them now. When they worry about their kids picky eating or sleep I just want to yell at them, try spending a good part of every day wondering if the illness that's lurking in the background is going to take your baby from you, or rob him of all the progress he's made. I need friends who understand that fear and feeling of loss.

Firsttimer7259 Thu 19-Sep-13 18:08:30

You could be describing me when dd now 3.5 was that age. She also has a disability that only became apparent after she was 6 months old. I just wanted to say hang in there try not to panic because it does ( slowly) come back together again sometimes in truly unexpected ways. SN is the most effective way to weed out the crappier people in your life either because they avoid you or you realise you cant stand them after yet another horrid thoughtless stupid remark. It's alarming at first but I have found I have met some v wonderful people instead - it took time and I needed to get to a place where I wasn't in so much pain anymore.
I wouldn't worry about whether other sn mums will be welcoming or play mine is more disabled than yours. Suck it and see. Try different things and see who you meet, who you like and who likes you

Tinymrscollings Thu 19-Sep-13 16:28:30

Thanks, both. Maybe a SN playgroup is the way to go. Because DS doesn't have a severe physical disability (just hypotonic, hypermobile and delayed) or any hugely obvious learning disability i thought I might not be welcome at one? Other parents whose children have more profound problems might think I'm making a fuss about nothing or something. The thing about the second child came from his geneticist, sadly.

bigbluebus Thu 19-Sep-13 16:04:55

Are there any playgroups for children with SN that you could go to and meet other parents who are in the same boat.
I, too, found that I had very little in common with the other Mums that I had met when I was pregnant (with the exception of one who later revealed that she had an older sister with SN). Many of my friends now are people I met at the NHS run SN playgroup and their DCs have gone to the same SN school as DD. You certainly find out who your true friends are in a situation like this.
And who has told you that you can't have a 2nd child? Is that advice from a medical professional or some random comment from elsewhere?

magso Thu 19-Sep-13 15:26:41

Hang on in there. Someone with more relevant experience will come along soon.
I can empathise with the need to avoid other parents with similar age children without medical or developmental differences (its too painful), and also the difficulty in knowing what to say. I can only say that I found the early years much harder. There is a type of grief that your child has a harder life, illness or a disability, and like grief it takes time to process. Once ds was older and I less sensitive, I found a lovely group of mums with sn children, and although we all have different age children with different disabilities we can be supportive to one another.
it is not your fault that the specialists took a long time to get the treatment for your son right. It does take ages to work out how to get the systems to work best and sadly there are always delays.

Tinymrscollings Thu 19-Sep-13 10:45:42

Hi all, not posted here before but I'm worried I'm not doing the best for my DS and I. DS now 20 months was NT until 6 months old when he developed a horrible form of childhood epilepsy. It took us 4 months to get him diagnosed and treated and luckily for us he has been seizure free ever since but his development was affected and I suspect that he will bear the scars of that delay before treatment for the rest of his life. It has been a terrifying year and we are still under multiple consultants at GOS who are looking for an underlying cause for his seizures. I live with the awful fear of a relapse or a horrible underlying condition every day and the guilt that I should have tried harder, done more to get him diagnosed sooner. I did my best but I didn't know how to play the system properly (I do now smile) and I let it drag on until he regressed so badly that he was a 6 month old newborn. He now sits, stands and cruises. He's almost walking but completely non verbal and is showing markers for ASD.

I have given up a successful career as he has so many appointments I can't do 9-5 or travel. I have some freelance work but i miss the office. I have gradually isolated myself from all my 'baby friends' because I can't bear to see their children developing normally and hear about their everyday worries or see in their eyes that they're so glad this happened to us and not them. They are all going on to have second babies and we've been told we mustn't until DS has a diagnosis and possibly not even then. People say such unthinkingly hurtful things ("I had a friend whose little girl had epilepsy and she's fine so I'm sure he will be" - it's NOT the same). One friend had harmony tests for her second pg because she didn't want a baby that wasn't perfect, and told me that sad. Another said that DS's problems wouldn't happen with another baby because I'd 'be more careful with another pg' (didn't realise I was expecting DS until 11 weeks, he was unplanned but very much wanted once we knew). I don't think they realise that I love my DS in exactly the same way that they love their children.

I worry that I will end up entirely on my own with this - I just can't bear to be with anyone else. When it's just the two of us then it's fine but I can't bear to be with other parents just now. I used to be very sociable but I don't see anyone any more. I think DS and I make them uncomfortable, they realise how fragile it all is and that it could all go wrong in the blink of an eye. How do I cope with this? Are there things I can say or do that'll allow me to be with people again?

That was v long and v me-centred. I have a wonderful DH but he gets out and away every day and doesn't worry like I do.

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