And now there are two (DCs with sns that is)

[NoHaudinMaWheest]

I know there are lots of you who have 2 or more DCs with Sns, but I am feeling fairly devastated by this which is why I haven't been around much recently.
Ds has pretty complicated sns but I have always felt 'at least Dd is fine'. Probably especially as both Dh and I have multiple health issues ourselves.
Dd is 12 now and over the last couple of years we have had:

1. Dyslexia. That was fine because I was aware that she was having problems and was glad that her teacher that year recognised them and had her assessed and diagnosed without any hassling from me at all.

1. Asthma. I have asthma myself so no great surprise and it is quite mild and the Ventolin works well.

1. Tinnitus. That was more worrying but once it was certain that her hearing was unaffected and the very good hearing therapist had given her effective strategies to deal with it, I reckoned it was something we could live with.

1. Acne. It didn't respond to standard treatment initially. So she was referred to a dermatologist with a view to starting isotretinoin (vitamin A) treatment. By the time we got the appointment the standard antibiotic treatment was making a difference but she still had large subcutaneous cyst and a lot of scarring on her back. So we started the isotretinoin as it seemed the best thing to do at the time. Almost immediately however she developed

1. Joint problems. Although they almost certainly started as reaction to the acne drugs they have continued in spite of stopping weeks ago. She is in a lot of pain and can't bear weight on her knees. As a result she is now using crutches. The paediatrician reckons that she had an idiosyncratic reaction to the isotretinoin but that it is likely that an emotional reaction to the difficult home situation is continuing the problem. She has started hydrotherapy (too early to tell if it will help) and anti-inflammatory painkillers (don't appear to make any difference at all).

I can't do anything to change her home situation really but if she is reacting to it I feel terrible for her. I think the paediatrician meant it to be reassuring that she didn't have juvenile arthritis or similar. Obviously I am not minimising the reality of that illness but it is a lot easier to deal with in terms of treatment. Where do I go with emotional problems leading to physical difficulties? The local CAMHS, as I know from bitter experience, being on the whole completely useless in such areas.

On top of that there are the practical implications. We now have a household where noone is fully mobile. Ds (16) has no physical limitations but due to AS and OCD is very limited on where he can go independently. I walk with a stick due to undiagnosed (and probably undiagnosable) neurological problems and can't go very far or very fast. I have never managed to learn to drive and could not do so now. Dh has complex eye problems and has been unable to drive for the past 5 years. At the end of last year, having exhausted all the treatment options, it became clear that he will never drive again.
We live close to the town centre so some things are fairly easy but the Dcs' school (chosen because it could meet Ds's needs and stuck with for Dd due to its excellent pastoral and SEN care) is right on the edge of town.

Sorry for the massive moan. I know it is all trivial compared with some people's situations but I had to get it off my chest.

I think you're allowed a moan. Your situation with your DD, where you still have no idea what's really going on is understandably worrying and stressful and your lives are complicated enough already.

There is no scale for too trivial or not. You have far more to deal with than we do, if you want perspective. We've had the boys' entire lives to get used to their need. Though often spoonless and sore I'm still mostly fully mobile (ask me again when I next fall on this ice) and DH is fine healthwise and we have a car so don't feel stuck in the house.

Thanks ouryve. Can I ask what is spoonless?

No help or useful advice here, but I hear you. I have always looked up to posters like yourself. Reading about your experiences gave us hope when there was none. I hope that things get better for you soon and you find a way through.

Thanks zzzzz. The taxi firm know us so well that when I ring up they say 'hello Mrs NoHaudin where are you going today?'

Dev I don't know about being looked up to. Mostly it's a matter of struggling through somehow.

Just wanted to say, as a mum to two ds's with SN, who doesn't post often, who lurks and gains strength can I second zzzzz, this too will pass. Honk, honk xx

Well, we have only had to do this for 3.5 years and I would have given up long ago if posters like yourself with older children were not around to show me that life doesn't end with a diagnosis, so in my eyes you are an inspiration.

As to struggling through, we all do. We wouldn't be here on this board otherwise, would we now

I am going to send you a positive hug because I dont know what else to say but want you to know I feel for you right now x

Bless her heart I am not sure where to go for emotional problems tbh as I am not a camhs favorite.

Maybe start up a weekly "feelings check" where you all sit around table and discuss how you are feeling and perhaps the family pow wow might relax the tensions and stresses a bit for her if she can get things off her chest? Like you wrote there sometimes is no way of altering home life to suit one person. Its hellish here at the moment. But just the fact that middle DD knows that she is able to "say her piece" and that she is at least being listened too helps a little. x

sending a honk... will pm later.

Thanks for the honks and support. Feeling a little more positive this morning. Met Ds's new social worker who seems young enthusiastic and on the ball. And I think I have organised myself a cleaner though who knows how I am going to pay for her.