myotonic dystrophy

Reading your further posts R&R I can understand how very difficult this is for you and all your family. I know nothing about the condition but just having a quick research and reading your posts it must be so distressing for you.

Sometimes it is easier for people not to discuss things, like your DIL, it is just their way of dealing with things. I think you are doing the best you can, reassure them that you will always be there to help if needed.

Everyone on here will listen and be there for you. Just come back when you need someone to talk to.

My prayers and love are with you

This is a terrible shock but you must not lose hope. There is tremendous work being done on Muscular Dystrophy, of which myotonic is one form, at the moment. Lots of gene therapy research is offering real hope for the future. Also you do not say which form of myotonic dystrophy your daughter has - one kind is less severe than the other and mobility is retained for many years.
You need to find out as much as you can about Myotonic Dystrophy as well as receiving support and I suggest you contact The Myotonic Dystrophy Support Group which has a central helpline and network of regional links supported by professional advisers. Please give them a try.
I know you are feeling devastated at the moment and probably feel that life will never be the same, that you will never laugh, enjoy food, again, but gradually acceptance will come and you will. It is a hard path. My son had Duchenne Muscular Dystrophy and one of the things you do learn is to enjoy every day as it comes and be glad they are still with you. I do hope that your daughter has the milder form and many more years. And the GD as well. One day a cure is going to be found and it's getting closer. My very best wishes to you at this difficult time.

harrigran I think so too - have just bought them a new table they asked for - and I bought the pram - DIL told me she was so pleased to be able to pick a new pram of her choice as her previous pram had been passed on...it is those little things that can help. And somehow not being too heavy about it...very difficult balance and lavenderzenyou're right and thank you..
Thanks 25Avalon. Both my DIL and GDD who has the congenital form has the #1 (not the lesser #2 variety, unfortunately) . The worse one. They affect different genes. I emailed the UK support group months ago and sent them money for membership and they never replied. Eventually, I received a 'form written' letter and membership card. So not over-impressed with their support. They didn't reply to my letter. I can see that if there was a local group and I had a child with the condition in my care I could go along to events...but that is not the case. And the child is not in my city, which I don't think has a local group. I can't tell son and DIL to take her to a group...they are just not ready for it - maybe never will be. What I can do is send the group money and keep in touch and get their newsletters which are mainly about group meetings...I find the group in San Francisco very informative. Although some of the forums I am in hate their new name 'Myotonic'. It makes the people with the condition feel objectified and 'other'. But the charity argues that the easily remembered name enables them to raise millions for research...at charity balls...(14 million raised at one in November) It's a weird world which we sometimes have to play along with. I think the muscular dystrophy group very good.
I am so sorry to hear about your son. You were in the front line I am very much in the background - over an hour away...not responsible for the daily care. But of course I worry about it. Worry about the future. I think there is/was a 30% chance of baby dying in first year which hospital feel confident she won't do. But when I hold her her chest rumbles as she breathes. She feels so fragile. Really whatever keeps my son and DIL going I will do. They, I think will approach problems as they happen...not before. Oh dear.

Very sorry to hear that it is the worst kind of Mytonic Dystrophy and that you have not had the support that you need. The Muscular Dystrophy Group here in the Uk are very good and do cover Mytonic Dystrophy as well. They keep you up to date with all the research that is going on which gives real hope. With my son we had a Family Care officer who helped us with house adaption, education etc and we also had a specialist consultant.
I know where your ds and dil are coming from - just take one day at a time. When there is a mountain to climb don't look at the top, just proceed with small steps. If you look at the very worse you will be overwhelmed and unable to appreciate what you have now. Gradually acceptance will come but there may also be anger, disappointment, and despair - this is all part of the natural process of how we adapt and cope. I found fund raising to be a useful way of channelling my negative thoughts to achieve something positive.
I do hope your gd survives this first year. She sounds a little fighter. You will learn a lot from her. Bless you all.

25Avalon thank you thank you thank you thank you. That is just what I need to hear. You know this morning my DIL posted on FB how she was feeding her baby in bed and listening to another daughter sing the twelve days of christmas and she was feeling very happy. And you know baby is a litttle fighter. When she had the nasal feeding tube she kept pulling it out...which is what my son thought and I thought I expect it is accidental...but following her lead he started giving some of her feed orally until the hospital hesitantly said fine a little, they did a bit more and within a week she was totally orally fed and no more nasal tube and she started it. and she was out of breathing apparatus after both lungs had collapsed in a few weeks. She has such a mountain to climb. But there is a lot of hope and I so respect your experience. And it has helped writing it all down and that someone heard.

One final word - don't you ever give up on your gd. I kept a pair of football boots which I knew my ds would probably never wear but to have thrown them out would have meant I had given up hope. You must never give up hope and as she grows up you be very proud of that little girl.

I know little about this bit couldn't ignore it. God bless.

Thanks Tigertooth. Yesterday I spoke to my son and he said that they were having the eldest tested. The worst that could happen is that she is found to have the condition which would mean she would get support from the school. It seems the school don't think they need help because my DIL didn't turn up for a meeting that she argued was at the wrong time...what they don't realise is the depth of stuff she is dealing with. Also as she has the condition this interferes with mental processing, focussing and socialization. loads of mountains. The fact is he is the only one in family of five that they know doesn't have the condition. So hard. The school don't know about the premature baby with CDM1, they dont know that DIL has adult-onset DM1 or the possibility that the eldest has child-onset DM1. They have said they have done their best and parents not willing to cooperate! The middle child of 5 is so far without symptoms and let's hope she has escaped it. (50/50 chance of the mutation of the gene being passed on). I hope my son tells the school, he had to stop talking to me on the phone after a few minutes as DIL interrupted to say she wanted him to trim her hair...I don't think she likes him talking to me.