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Feeling Sad after Diagnosis

36 replies

Bumblelion · 21/10/2004 12:23

Just need re-assurance that what I am feeling is "normal".

My DD is nearly 3 and has recently been diagnosed as having Sotos Syndrome although this has not been confirmed by DNA yet. Since the diagnosis I have felt fine about the diagnosis and have tried to find out as much information as possible. I have joined the Child Growth Foundation which deals with over- and under-growth in children, Sotos Syndrome being one of their groups.

On Saturday just gone, I went on a convention in London which I felt would be beneficial. I have to say that during the break I had to go outside and just broke down in tears. I am not in denial about the syndrome but I thought I would hear positive stories - one I heard that stuck in my mind was how "proud" a mother was that her daughter got out of nappies at night-time at the age of 21. That just devastated me - I know for the mum talking it was a proud moment but for me it was not something that I needed to hear.

Saying that, I met a lovely lady with a daughter the same age of mine and we are slowly building a friendship (as I met another girl of 19 who had Sotos who had grown up with a friend who also had Sotos Syndrome and this girl had found it very beneficial to have a friend that was going through the same emotions/difficulties as her).

I found the whole convention a bit over-whelming and a bit too much to take on board after only having a diagnosis for such a short period of time. On one hand I am glad I went, but on the other hand I felt that it hasn't done me a lot of good - I seem to have lost sight of S (my daughter) and her capabilities at this exact moment in time and am more caught up in the negative aspects of the diagnosis.

I feel that generally I am a happy person who just gets on with life and whatever it throw at me and I can't believe how "down" I have been feeling since Saturday and just keep getting upset. When I am with S I feel so positive but when I am talking about the diagnosis or about Saturday I just feel so upset and then I feel guilty that I am getting upset about S and that makes me feel a horrible mum.

I love her to bits and wouldn't change her for the world - she really is a happy outgoing confident friendly child (totally un-sotos like!) and is such fun to be with but I feel I shouldn't be getting upset and don't understand why I am.

The diagnosis has not changed S and who she will be come and what she might achieve in life.

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Aero · 21/10/2004 12:30

I'm afraid I don't know anything about Soto's as have not heard of it or experienced it, but didn't want to ignore your post. You have just had her dignosed and coming to terms with that will, I expect, take some time. Hopefully, in time when you look back on the convention, you will see it as a positive experience. The people who share your experience will, I'm sure be a great support for you.
You have a lovely little girl and it's clear how much you adore her - just take things one day at a time I guess - and enjoy her.

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cupcakes · 21/10/2004 12:40

Just wanted to send you hugs. It must be an awful lot to take on board and it is no wonder you are feeling like this. You are doing a great job in making yourself aware of things involved and I guess it will take time to absorb everything.

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heartinthecountry · 21/10/2004 13:26

Bumblelion - I am just dashing out but willpost a proper reply later. just wanted to say that I went through lots of similar emotions...

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Jimjams · 21/10/2004 13:36

Give yourself time bumblelion. I know when I joined some autism support groups online that one of the things that horrified me was the talk of nappies for much older children. And my friend talks about her portage worker telling her off for allowing her 3 year old dd to take her nappy off "because we don't want her to be doing that when she's 10 do we?" It hadn't even occurred to my friend that her dd would still be in nappies at 10 (she wasn't she was out of them at 6 or 7 - my ds1 was out of them at 5) There is something about nappy talk that is horribly depressing for the newly diagnosed though.

The thing is that the things that are horrifying now do become normality and then often funny- but it does take a while to get there.

Nick Hornby actually talks about this in his introduction to George and Sam. He syas that the point of the book is not only to inform but also to entertain and engross. He then goes onto say
"I'm not sure I would have found it so entertaining a few years ago, when my son was first diagnosed. Nowadays, I'm used to glancing out of the window on a freezing November night and seeing a naked boy bouncing on a trampoline in the dark. It makes me laugh (I don't just laugh by the way , before anyone contacts Social Services. I go outside and get him in too). Back then, when I didn't understand Danny so well, and didn't really want to think beyond the next few days, the naked trampolining would have alarmed and depressed me; it would have been yet another indication that my life as a parent was not one I had anticipated."

I really recognised this when I read it as I now spend half my time sniggering at autistic stuff - which a few years ago really would have horrified me. DS1's new LSA has an autistic son and we soent a good 10 minutes yesterday swopping stories and laughing about them.

You do get there, and you do get your child back although sometimes that whole "wheres my child gone in all this" does resurface. Having the statement reveiw tomorrow this week has been a week of talking about ds1 in the context of his autism and I have said to dh and a friend this week "he's lovely and i HATE having to discuss him as if he's just a problem- when at the end of the day he's my little boy". it's always a rollercoaster really

BTW the best thing about going to those sorts of things is that you can meet people - some will slowly become very very close friends- and will provide support for years to come (which you will reciprocate).

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Bumblelion · 21/10/2004 14:10

Thanks for all your kind comments - I suppose the hardest thing is that what I am feeling has no way affected my feelings for my daughter. Although I am sad at what "might be", I should appreciate that these are just "possibilities", just because she has a syndrome doesn't mean that it has to be all bad.

I saw a paediatriacian yesterday (a certain doctor that I had not seen before) and she asked why I had been referred to her - as I see another "development" doctor at the same hospital. I said I didn't know and she explained that the referral was "long-standing" and before I had seen the geneticist and before I had been given the diagnosis. The reason I was referred was because of DD's height and size (measured yesterday at 19.84 kg - roughly 2.5 stone) and 101.5 cm (although she was not standing up straight). It seems that my DD can have lots of interventions that don't bother her - scans, blood taken, etc. but she hates being weighed and measured.

I do not have to see this particular doctor again as I have now got a diagnosis and have meetings at an "integrated pathways" where all the consultants/specialists involved in S meet together to discuss what each is doing for her and how they can all help each other.

She then said that she was glad that I did still go and see her yesterday as, although she had read a lot about Sotos Syndrome, she had never seen a child with Sotos. Made me feel like S was a bit of a guinea pig.

Just because she has Sotos Syndrome, she is still S. I suppose I want people to see and get to know S and not the syndrome.

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mrsforgetful · 21/10/2004 14:22

i am sat here with tears in my eyes.

my boys have a different diagnosis....the the feelings you are having are as i was 5 years ago.

You will get stronger....and if you stick to us lot on mumsnet...we will hopefully give you 'good stories'....even though the illnessnes/syndromes are varied...the devastation at a diagnosis is universal.

you just think you have 'come to terms with it' and you get a 'slap round the face' as you did at that convention.

you will read on here that we all kind of go thriough a 'grieving' process....mourning for the 'child we thought we had....but have lost'....and at the other end of the process comes the realisatiion that the child is tghe SAME CHILD and all that has changed is the 'plans' you had for her .

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Bumblelion · 21/10/2004 14:27

That is exactly how I feel. She is still S and is still the same adorable, outgoing, friendly, sociable child that she was before I had the diagnosis. I need to keep sight of that.

Thanks for your kind words.

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Dingle · 21/10/2004 14:37

My heart goes out to you Bumblelion. I'm afraid I don't know anything about Sotos Syndrome, but I am sure over the years I will learn more.{grin] All I can say is it will take time. You have found out something about your dd, but that will not change her, she is still your little girl. It's the "label" that is frightening, the stories of what may be and the comparisons of others who have the same condition.
I feel myself to be very lucky, deep down I knew my dd had Down Syndrome before she was diagnosed only hours after her birth. I have never know her any different. I have wondered in the past at what part of her is actually her and what part of her is DS, it also took my a long time to see past the DS myself and see her for who she is.
She is an adorable little girl and I love her for who she is.
The convention may well have been too much too soon after her DX, love her as you did before her DX and try not to let it spoil your time.

That didn't come out as I wanted it to, but hopefully you will know what I mean.
hugs from Dingle.

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Dingle · 21/10/2004 14:43

OOh and MrsF, now I don't feel so bad in admitting that I had a few tears in my eyes and a lump in my throat. Although my dd is about the same age as your Bumblelion, it has made me re-live how I have felt in the past.
I alway said;the shock goes, the sadness comes and goes, but you are filled with strength & deternimation in it's place.

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Bumblelion · 21/10/2004 14:48

Dingle - I know I need to forget what I have found out about the syndrome (well not forget all of it but I think I have gone a bit into overdrive) and just carry on appreciating her for who and what she is (and I most heartedly do) but I also want other people not to see the syndrome - it is just a small part of what makes S the person she is. It doesn't need to be all negative and black clouds.

On one hand it is good to be prepared for the worst case scenario but on the other hand whatever life throws at S I will be there to support her and the worst case scenario just might not happen.

At the end of the day, whether she has got a syndrome or not, each child is an individual and has different capabilities/strengths/weaknesses and having Sotos doesn't change that.

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tamum · 21/10/2004 14:52

Bumblelion, your posts are just lovely. I don't want to intrude, and I do honestly appreciate what you're saying about "S first, syndrome second". I just wanted to add (in case the docs haven't said so) that there is a definite school of thought that Sotos symptoms tend to improve with age, not worsen. I'm sure you know way more about it than I do, but I just thought I'd mention it

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Bumblelion · 21/10/2004 15:01

Tamum - The doctors have not told me anything about the syndrome - everyone I have spoken to in the professional side haven't come across the syndrome and don't know anything about it.

I got all my information from the internet - when I first started reading about the syndrome I got the idea that it "caused over growth in children up to the age of 5 but in conjunction with the over-growth it also causes delayed development". This I felt summarised S - big for her age and a bit "behind". I presumed that at the age of 5 (or there abouts) the growth would slow down and the development would kick in - which it appears to have already to a certain degree BUT to hear personal stories that this hasn't happened quite devastated me.

I suppose it is just a learning curve and just because she has a certain genetic fault doesn't mean that it is all bad news.

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tamum · 21/10/2004 15:07

I guess it is hard when it's so rare, and maybe to some extent they are waiting for a definitive answer from the DNA before talking to you much about it? The sentence I was thinking of is this "In a review, Cole and Hughes (1990) emphasized that the handicaps in Sotos syndrome are fewer than previously believed and tend to improve with age" which is mildly reassuring, I guess, but I can understand that it doesn't count for much against personal experience. Maybe things will improve once you get these joint meetings? Good luck, anyway, and treasure your dd. She sounds gorgeous.

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Copper · 21/10/2004 15:16

Bumblelion
Lovely to see your name again, sorry you have to cope with this.

Do you think that maybe the people who go along to conventions tend to be the newly diagnosed and those who have longer term problems? Maybe the parents of children with SOTOS who have caught up with themselves in later childhood no longer feel any need to go to such events? So maybe there actually is majority of children who don't have long term problems?

As to S herself, she's the daughter who brought you such joy in hard times - you must think the world of her.

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Bumblelion · 21/10/2004 15:35

Trevor Cole was actually at the conference on Saturday, as were the two geneticists that gave me the visual diagnosis.

One lady that did a speech towards the end of the day talked about "Sotos Syndrome 25 years on" and it was her speech that I didn't find very positive.

I met another young lady who herself has Sotos but I would never have guessed from looking at/talking to her.

Where some children with Sotos syndrome have certain facial characteristics, this young lady didn't at all - she went to main stream school, college, drove a car - she was the type of person I wanted to meet with the syndrome as after speaking to her (right at the end of the day) I felt so much more positive.

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snmum · 21/10/2004 15:41

Actually Bumblelion, i just wanted to apologise because on your last thread i said rather insensitively that sotos was a "good" diagnosis to have, and I am so sorry I said that so flippantly without consideration to all the emotions you must be experiencing. Sorry.

Of course it must be a shock to you. I cant really speak from experience because as you know my daughter still doesnt have a formal diagnosis apart from "microcephaly" which feels bloody frightening on it's own i can tell you.

I hate the way genetic dr's and paed's analyse our children, but at the end of the day it's their job i suppose and they do that

God this post is so useless, just wanted to acknowledge that i think we all feel like this.

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Dingle · 21/10/2004 16:00

Oh Bumblelion, I do know what you mean about wanting others to see her before "the Syndrome" but personally I don't know that will happen very often with my dd. Down Syndrome is probably one of the more 'easily recognisable' conditions and I am always so aware of people passing by her and taking a second look, I want to stop them in their tracks and tell them all the positive things about her, ..."yes-she does have Downs but look-she can sign well over 100 words, she can do this,,, she can do that,,,isn't she lovely.." just being like any other mum, just being proud of HER.
I would like to say I have hardened to this, but deep down I probably haven't. (Although I was so annoyed at one woman the other day, her jaw almost dropped as she just stared at dd, so I made a point of staring back at her in this really condescending way and said in a very loud voice, "oh dear aren't some people so ignorant!" It was very out of character for me, but I felt really good about it afterwards.
We all cope in different ways, and I am sure that your dd is a very happy, lucky little girl to have you for her mum. HUGS

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lou33 · 21/10/2004 16:04

I think your reaction was perfectly normal bumblelion. It's one thing to have a dx, quite another to actually hear from people who have been down the path you are now travelling , and seeing the impact the dx has had on their lives. Looking too far ahead, I have decided is now a now a big no no, because there are too many what ifs lingering, and trying to answer them becomes overwhelmingly painful. Like you say, your dd is still your dd and your love for her is unchanged. But it is soooo easy to get caught up in the diagnosis and forget the real person underneath.

The docs thought dd1 had sotos when she was small, but it was valproate syndrome and ehlers-danlos syndrom instead.

Very best wishes to you x

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Bumblelion · 21/10/2004 16:25

Dingle - where you say that Down Syndrome is probably one of the more recognisable conditions, if you see a group of children with Sotos Syndrome they also have some similar facial characteristics - eyes that are down-slanting at the outside edge, high palate, overcrowded teeth, pointed chin, receding hairline, etc.

When I look at my DD I see a beautiful blond blue-eyed girl (who is a bit tall for her age) who is such fun to be around with and is such a "poppet" and it upsets me that other people might not see her in the same light. But then, that is their loss.

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snmum · 21/10/2004 16:30

Bumblelion, i think we ALL do that. To me my daughter is just the most gorgeous thing that ever walked the planet, and it is upsetting to think other people dont see her that way and she "looks" different

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Dingle · 21/10/2004 16:34

Ahh bless her Bumblelion, I'm sorry if I make you repeat yourself but when is she 3? What sort of issues are you going through now? What are her main problem areas?
I would love to see some pics of her at some time, it would be great to see her growing up along side my dd. (She is 3, going on 13, on Halloween!)
It has been said many times on here but the support on here I find invaluable, I felt I was so alone in dealing with all of this until, by chance, I came across MN. There is always someone here to listen, advise and give you the peace of mind, that you are definately not alone in the way you are feeling.

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dinosaur · 21/10/2004 16:52

Bumblelion just wanted to say hi and add my support.

My DS1 was diagnosed with high-functioning autism about a year and a half ago. Whilst getting the formal diagnosis was in many ways a relief (I had been concerned about him for a long time previously) it was still a shock and I felt everything swim around me as the paediatrician said the words "We think he is best characterised as being on the autistic spectrum".

What I would say is that coming to terms with a diagnosis is not something you do "once and for all" - instead it's an incremental process - you sort of accept it in stages. Sadly, even though I think in many ways I have accepted DS1's diagnosis, every so often something will happen gives me a jolt again. Most recently it was seeing him in his school assembly and realising just how "different" he looked to everyone else in his class! So don't be hard on yourself, it does take time, and mumsnet is so brilliant for the times when you feel you need a bit of support.

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Marina · 21/10/2004 17:00

I just wanted to say hello too Bumblelion. S sounds a lovely girl! I have no experience of an SN diagnosis but I so agree with Copper that support groups are often disproportionately filled with the newly affected and those who are experiencing long-term issues. That's my experience of them, anyway. Worth bearing in mind and a little bit of help I hope.

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Bunglie · 21/10/2004 17:05

Bumblelion.....Wow! what a great mum you sound like to your dd.

I do not know about this syndrome, but what I do read in your posting is that you have love, and lots of it for your dd. What more could she ask for in life than to know that her mum loves her and cares so much about her to put herself through all the emotions you are experiencing. You sound like a wonderful mum who is understandably going through a normal process that any mother with a child with SN goes through.

You may feel as if you are not coping as well as you should...but I think you are showing what a wonderful, loving and careing mum you are.

You have my admiration and my very best wishes and I am certain of one thing, your daughter is lucky to have you as her mum.

With much love to you and your familie Bunglie XX

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zebra · 21/10/2004 17:08

I was reading here about it. It doesn't sound "too bad" Bumblelion... but maybe you need to mourn the child you thought you had so you can do the best by the child you do have? Just a thought.

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