Feeling down

[fio2]

Just had the post today and dd has got a review with the development paed in a couple of weeks. He hasnt seen her for about a year. I just feel like I have been put on that emotional rollercoaster again. Im scared what hes going to say and to be honest I dont want to go ( I will though) I just feel so frightened about the future. I feel if its bad news I wont be able to cope. I love her so much and I just wish it wasnt happening to her. I keep thinking shes got some kind of rare syndrome or something. Her head still seems on the small side and I dont think it has grown much. I just dont want to go through any more tests or poking or proding. Im sorry I sound incredibly selfish but some days it just seems to pile on top of me. Yesterday I was fine, today Im a mess. Sorry for going on just needed to write it down. Please dont think bad of me

Fio2 - how can anyone possible think badly of you? Your feeling are perfectly normal. I have no experience of having a child with special needs so I can not even begin to imagine how you feel. However I do know you are bound to have days where you feel like this - you are only human. From your posts you sound very strong and focused, not at all selfish. I don't really know what else to say except I have nothing but admiration for you.

oh Fio2 lots of cyberhugs coming over to you.I know what you mean, something yesterday kicked it all off for me again.I think you know what I mean. I have spent most of last night crying and I am crying now thinking how unfair life is for my ds.I try to think positive thoughts but today I just cant get a grip.All the bad memories are flooding back and I am now wondering about what the future holds.Sorry if I am depressing you furthur, I dont mean too.Life just slaps me in the face sometimes and it just gets on top of me. LOL and hugs to you.
PS Not much consolation but I think your dd is doing well seeing the paed once a year.

PS I dont think bad of you if you dont think bad of me

Why would we feel bad of you? We know exactly what you mean. I think we all hate these appointements. We have a yearly review coming up as well- I've just cancelled an appointement because it clashed with an appointment with the statementing officer. TBH when we were on holiday in france I felt like opting out and just home educating from France and never having to go through these crappy appointments again. An hours wait in a baking hot room to see either an undeling who knows nothing about autism or the barking mad peadiatrician who also doesn't seem to know very much about autism. No thanks! The appointements are always so disappointing as well aren't they (at least the NHS ones are). They don't listen to you or help.

I have a friend going through similar things to you atm. Her dd has a colleciton of diagnoses (adding new ones all the time). I know she's wondering whether it is some rare syndrome and the not knowing is really getting to her. Sometimes when ds1 does something that seems a bit different I worry as well, it is frightening. Tip about the future- don't think too far ahead! Concentrate on the very short term, otherwise it's depressing.

Hope you feel better soon xxxx

I can sympathise in a round-about way. I know it is one thing only having to see the specialist (or whoever) once a year, but what p*sses me off is that each time I have seen someone different and they just pick up on how delayed my youngest DD is, whereas if they actually had known her from when she was first referred they would see how much she has come on.

I think you feel what we all do Fio, so don't feel bad about yourself. It's very easy to build a bubble to live in when your daughter or son is just that, not special needs etc, I know because I do it all the time! When outside influences come into play it suddenly seems so hard and the reality kicks in, and then it has to be faced all over again. You obviously love your daughter and do everything you can for her, you are allowed to feel down every so often. I don't think anyone on Mumsnet would criticise you for feeling low.

Thank you for all your messages I am starting to feel a bit more rational again now. I dont know if I have mentioned this before but my sister died last year and last thursday it would have been her 23rd birthday. Although I went to her grave I didnt really feel 'anything' and felt like it was just a normal day. Then today when I got that appointment I think my emotions went into overdrive, I had a really good cry this morning and I dont think my emotional state was 'just' to do with dd's appointment but more to do with grieving for my sister. The appointment didnt help obviously as I hate them for the same reason Bumlelion does-I feel she has made 'good' progress but the paed always thinks differently, I suppose he has her best interests at heart.

Jimjams our appointments are always rushed, he is very experienced but he has little support staff-nothing is explained to us. dd has actually been tested for one rare disorder (at least) but they did a very quick u-turn when she stared walking before her 2nd birthday. It is nice to know I am not alone in my feelings, sometimes I feel like a right basketcase. Doormat I hope you are starting to feel a little better I really find it helpful to post on here and read everyones kind words and opinions.

Oh and Northener thank you for stroking my ego if you met me though you would realise that I am really quite paranoid and not that strong at all

thanks for your message lou, we must have posted at the same time

no one would think badly of any of you feeling like that. I find it helps to remember that I am entitled to feel how I do - I have a right to feel angry, annoyed, selfish even sometimes. As everyone else has said - we can all appreciate where you are coming from and how you are feeling.

Sorry to hear about your sister - that must have been hard for you. Sometimes as mums we are expected to be so strong and together that we don't allow ourselves to feel any other way.

I guess from a medical point of view they have to focus on what has or has not happened. But WE can celebrate the progress and achievements of our children because we know how hard they have worked to get as far as they have.

Hope you feel better soon ()

Fio, sorry you've been feeling bad and of course we don't think badly of you - you are always there being supportive of others on this site, I think you seem strong and positive too! It would be easier sometimes to not have to see any specialists, wouldn't it? Our paediatrician is very nice, but very gloomy always about the future. It is just so depressing how they focus on the negative. We're waiting for results of tests for something called Retts syndrome which wouldn't be a good outcome. They haven't told us anything about it, we've just read about in on the net, which is also pretty gloomy.

So sorry also to hear about your sister - as you say, all the different upsets probably get linked together. Hope you are feeling better today (( ))

Sorry you're feeling awful fio2 and very sorry about your sister. I hope next week is a bit better.

Fio - sorry been off for a few days - so sorry you felt down mate but pleased you told us so that people could be there for you with words of support. Don't ever apologise for coming on here to tell us you feel upset / angry or whatever, no apologies ever needed for that and yopu know it don't you. I jope you're feeling more positive today, big hug to you babes and check in again soon.
TC xx {{{{{{{}}}}}}}}}}

thanks eidsvold, caroline, www and Thomcat. I am feeling a bit more positive now.

Caroline5 Retts has been mentioned to us and I think the chromosome config has shown normal in our dds case but TBH they havent ruled it out. I do know someone with Retts, she was born the day before me ( our Mothers are friends-met on the maternity ward). She is very bad with it and wasnt diagnosed until she was 14 so alot of uncontrolled fitting had occured before that time as you can imagine When it was first mentioned in our dds case I burst out crying, I was and still am very concerned about it as Im sure you know. I am thinking about you Caroline and try not to worry about it too much some girls with Retts now go on and live alot better quality of life than years ago, but I am hoping your dd gets the all clear of course.

caroline5- if your dd does get diagnosed with Retts I know quite a few parents find the autism support groups helpful as a lot of the problems are the same. I know there are some people on the Aut-UK email list who have daughters with Retts.

Hope things are getting better fio2

My dh actually works on the Rett gene and chairs the scientific advisory board of the Rett Syndrome Research Foundation in the US (we're in the UK, he does it by visiting and conference calls) so I could put you in touch with people too if that would help. If there's anything you want to ask about the gene testing or anything fire away. The one thing worth stressing is that although it can be utterly horrible it is also very variable because the process of which X chromosome is being expressed (any girl with Rett syndrome will have one "normal" and one "Rett" X chromosome) is completely random. There are also some gene therapy studies (in animals at the moment) starting which everyone is quite hopeful about.
Hugs to you both, fio2 and Caroline5.

Oh God, I just read that back and realised I sound appallingly self-important. I didn't mean to, sorry

I don't think you sound self important tamum. Thought it was interesting. I have a very dim and distant memory of writing an essay about X-inactivation. Is there likely to ever be a way of forcing one particular X to inactivate?

Thanks jimjams, that's nice of you! It would be great to force X inactivation, wouldn't it? I know that some strains of mice do it automatically (Xce alleles of varying strengths, but this is probably not the thread for this kind of minutiae!). I guess the only problem would be that you might then uncover recessive mutations and be just as badly off. There may be some way of targeting methylation though? There are some very hopeful gene therapy tests for motor neuron disease at the moment getting the gene across the blood brain barrier, so this is probably the way it will go to start with.
Sorry to go off-topic fio2!

ohh I was just feeling so brilliant baout how far dd had come and the milestone of her first birthday until today!! We attended a 'your baby at 1' group at baby clinic today - mainly just for my interest and information. The other babies were crawling, understood no and just doing so much more than dd - mind oyu she managed to circumnavigate the room twice with her own unique crawl... the other mothers were telling their little ones to watch out for the baby - DD was the oldest one there..... so now I am feeling a little sorry for myself. Also had a hearing appt today and it did not go so well.... dd did not respond the way they wanted her to.... and have decided to give her one more chance or it is a look at her eears under general anaesthetic.......dd was far too interested in all these new people to look at and smile at than turn to the funny box thing which made strange noises...

sorry to sound so depressing... just had a long hot sad day.....

tamum dont think like that I think your message was very nice actually! I know there is alot of variation in Retts my PT told me about a woman with undiagnosed SN kids (a boy aswell) who turned out to have Retts girls and a boy but also to have Retts herself.

My dd walked before 2 which I know is unusual, has NO fits, has had NO regretion and more that dont match but cant think at the minute. The girl I know is very unlike my dd so I sort of ruled it out myself anyway and I am hoping in time the paed will rule it out aswell. I just think development disorders in girls may point in the Retts direction as it almost only affects girls.

Eidsvold Im sorry today hasnt gone well for you. But if my opinion counts I think your dd is doing amazingly well, to be getting around just after 1 is an incredible acheivement for her-especially after all the surgery she has had in the last year. You sound like a lovely mom and Im sure your dd is just as lovely as you

I'm just here to agree with Fio, Eidsvold .

I agree as well eidsvold, and remember our children have to work much harder to do all these things so it's a much greater achievement for them when they get there- savour it. And I think you're very brave to go to those things anyway. I avoid them all

Tamum- mice? You're revealing your time working at the same place as AGS Intersting though. perhaps we should start a thread on X inactivation and imprinting? Do you think anyone else would contribute? Maybe not.

Oh Edisvold - sorry you're feeling a bit low today. But look Lottie is older than your little angel - she's 19months and she has no idea about crawling. It's just not there with her. I know you can't help how you feel and comparing sometimes is just there, shoved in our faces, we don't want to but it's impossible not to. But baby Edisvold is doing really well, she really is. Sod what other snotty nosed kids are doing!!
I'm sorry to hear about the hearing test too. It might all be OK yet though, Lottie was more interested in the doctor and trying to reach out to her than anything they were tying to show her when she had her eyes tested. Her hearing test sounds v. different to yours, Lottie had to be asleep and they fitted electrodes to her, one on her forehead, and one behind each ear, then I had to put earphones over her and the whole thing took about 30mins, the minute she stirred and woke up we had to finish the test (can you imaging how hard it was to get her to sleep in the hospital!!!!)
Anyway - look - a big hug and just to say that it's all going to be ok, your little girl is beautiful and happy and great and has a fab way of getting round. I'd love it if Lottie could work out how to move from her one sitting position! We have to count our blessing babes and you have many to count I'm sure.
Lots of love and a hug {{{{{{{}}}}}}}

Aargh jimjams, did I mention mice? Sorry, and especially if it's given you post-traumatic stress You might be right about posting on an X inactivation thread; we might have to do it all oursleves with lots of aliases to make it look really popular.

Thanks fio2 {{{}}}. I didn't know how old your dd is, but she certainly doesn't sound as though she has Rett syndrome, does she?

It's OK tamum. Just fond memories of JBS.....