Is anyone else starting out on the road to a diagnosis? Fancy holding hands on the bumpy path?

[hazeyjane]

Ds (10 months) had 2 appointments in one today, a medical assessment and developmental assessment. He was referred at 7 months to the community paeds, due to developmental delays.

We are now booked in for some blood tests next week, and some physio, and have been referred to a SALT, for portage and to a special needs playgroup.

It is all so overwhelming, on the one hand I feel so much better, after months of waiting that I am able to do something. On the other hand I feel as though everyone is still scratching their heads over ds, and I just want someone to say, 'ah well Mrs Hazeyjane, your son has -- thats why he can't do these things, (well I don't, obviously I'd rather they said, 'ds will catch up and there is no issue, now be off with you'!)

I know that this is going to be a long process, is anyone else just starting out, or a little further down the road, for handholding, venting and advice?

to continue...
and sending your DS big get well vibes

Hello Lenin, how lovely to hear from you. I hope that you and your dp are getting bit of a break from it all.

I am fuming here, I phoned to arrange picking up ds's new piedro boots, and found out that we can't see his consultant until May! We haven't seen him since November, and we had to cancel Mon because of this effing sickness bug. Physio cancelled his appointment over half term because the physio was ill, so he won't see anyone until April (last appointment beginning of December), and I have just phoned Oxford to chase up the meeting with the geneticist (referral made in November) and been told no appointment has been made and we probably won't be seen until April.

And I am still syringing fluids into ds, and he is still unable to eat and pooing for England.

You're right about watching a violent dvd boxset, at the moment I am rotting ds and my brain by watching endless cbeebies.

V V Frustrating Hazey. Can you call the physio again and point out the amount of time between appts and see if someone will see you. The boots must be getting small and theres no point having them if they no longer fit the way they are supposed to. IN fact: they could be doing damage (I dunno but figure saying that might get you seen - at least by an underling) The rest is just grrr argh.

In terms of DVDs I must confess to watching 24, the Wire, Buffy (anything really really not for children), with sound down and subtitles on while DD faces the other way. Otherwise I go kerrrr -azy with all that cbeebies. I find watching violence and explosions cathartic at the moment

thankyou firsttimer, we have an appointment specifically for a boot fitting next week, but not with ds's physio, and just a 15 minute slot.

My fury unfortunately turned to glumness and then a sob in the toilets in Waitrose (I have a bad habit of sobbing in Waitrose!) I think the last few weeks of illness have got to me, and I just feel very frustrated about the fact that all the promised input is falling away, leaving everything to me, and I feel like I am failing ds.

Oh and I do exactly what you do, usually Buffy (big fan!) or x-files, but ds has just wanted to cuddle so it has been cbeebies or old black+white films.

I really hear you on this. I have poorly timed crying outbursts regularly these days. I think your son being ill plus having other children etc must be totally exhausting (we just have D and I cant really cope tbh) PLus the professionals are leaving you high and dry. I always feel as a mother the buck stops with me so when no one else is doing anything I am still sitting around worrying, reading up, gnawing away at this insoluble problem.
Is there some way of getting you some support? I have noticed various agencies, maybe charities etc that support families around here. I have no idea if they are any good or it helps but they are on my list of things to look into eventually. Even just some regular time off to process whats going on might be good...
It seems like hes been ill so long now and thats so hard esp when things are harder than average to begin with. I know time off right now might not work as he's not well but something for you, sometime soon...take care of yourself hazey.

PS on Buffy have you ever watched Becoming 1 (end of season 2) Just before the end the voiceover goes:
"Bottom line is even if you see 'em coming, you're not ready for the big moments. No one asks for their life to change, not really. But it does.....The big moments are gonna come, can't help that. It's what you do afterwards that counts. That's when you find out who you are."
I have cried like a baby to that over the last year. Big big buffy fan.

oh that is a good quote, firsttimer, i will have to dig that episode out of my boxset. I do miss buffy i am probably far too old to be such a big fan!

I struggle with the fact that ds is so clingy, to the extent that at his sn nursery, he barely lets his keyworker talk to him, let alone do any of the therapy that they have worked out for him. Some days I can't even put him down, it is separation anxiety to a ridiculous level. The other week they said they thought it would be a good idea for me to leave the room for a minute, and by the time I came back he was hyperventilating on the floor, and was inconsolable for the rest of the time we were there. He hates being touched by other people, especially his feet (shoe fittings are not fun), the only people who manage to hold him (without a meltdown) are me and dh. It is a killer, because a lot of the therapy sessions we have are spent with ds just screaming.

Can I also confess to an awful feeling of jealousy when my friend's ds (same age as my ds, chromosomal deletion just been diagnosed), started crawling up and down stairs and said his first word. I know it is shit of me and I really am so delighted for him and my friend, but this tiny part of me felt really sad that ds still can't crawl, and is so far away from any speech. I feel like an awful person for even thinking this.

Anyway, enough moaning (where would i be without this thread to moan on!) ds is finally eating and has stopped throwing up - yay!

I hope I haven't scared everyone else off with my awful moaning!

Hope everyone is planning a nice weekend.

Not scared off, please moan vent as much as you like. I was worried my dweeby buffy fan quotes had really put people off. Sorry everyone. Am also far too old for it but I find Buffy v helpful these days. PLus I love it.

It sounds v v tough hazey, esp that you cant really leave him with anyone else apart from your H. I ahve moments of feeling really low when friends children seem to do so easily what just isnt happening round here. I hate being jealous, seems like such a mean emotion amd I wish I didnt feel it as I do. But I think its only natural and sadly we are just human. I feel like there is this expectation (even from myself) that I am going to be this special super duper mummy now and I am not, I am still just me.

PS yay yay yay that he is better!!!

'M out of ideas mavis, but I am with you. I wish my numbed exhaustedness would lift.

I worried on the appraoch to Ds bday that I would cry on the day, whcih I really didnt want to do. I wanted to celebrate it. But I cried everyday for 2 weeks after.

goodnight

doh!

crap, it turns out ds is in all likelihood aspirating food, the feeding lady came over yesterday to show me the video of ds's swallow. Very strange to compare to a normal swallow. She said that what they could see meant that he almost certainly is aspirating food, which would be causing the chest problems, he may also be reflux aspirating, which can cause scarring on the lungs. there was talk of a gastrostomy tube being put in for a short while, to see whether he can improve his oral motor skills, and his muscle tone may develop, without the risk of aspiration pneumonia and longterm damage to the lungs. But it is all a bit grey, we have to speak to the paeds and weigh up the risks and benefits.

Sorry to hear you have been feeling gloomy, maviscruet, i must catch up on your blog.

hope everybody is well. lets try and have some good positive stuff this week!

oh crap hazey. Sorry to hear this.

Although maybe this will actually help... I dont know much about this (only Dr Google) but if some of your sons' problems are coming from this then this could really provide a solution to that part of his difficulties. Maybe even one that will bridge you over until he develops enough to do without the surgical assistance. It could be a good thing (?) I know you must be feeling low, and surgery will seem daunting. But...something that someone can actually fix for once? I know its still a long way to go before you get to the solution end of this equation but there may actually be one...
I hope you dont see this as me making light of things (and hope I am not being ignorant and insensitive) I imagine you are feeling low at the momnet, but this could be fixable and so ...good(ish) news??

Or surgery will be daunting

But I do feel that surgical interventions is something medicine is actually good at (compared to the less glam day to day therapeutic intervention we are usually dealing with wchih is often much less clear)

Hazey - i hope you are doing ok...

Hi all
I am slowly inching towards something I was dreading - namely the realisation that what we are receiving from the public purse may not be enough. I want ot go through this slowly and not start spending money becuase I am panicking about D but really think that additional interventions may be 'a good thing' and have enough additional impact to be worth the investment.

Does anyone else feel this creeping up on them? One thing I am noticing is that when I start asking about what else we should consider I get told what a good job I am doing. Now that is very nice and reassuring and tbh about 6 months ago I would have wept snotty gratitude all over anyone who told me I was 'doing good' at parenting.

Now I have moved on a bit. I know because of the extent of Ds delays this isn't because of what I am doing/not doing in the usual sense. Its not about whether I breastfed, how I weaned , if we play with her, talk to her, sing with her, read with her.

More subtly its about how we do those things and I need someone to teach me not praise me for the things I am doing that, yes are hard work, but that aren't working.

Hi Hazey, sorry to hear your news but perhaps it might be the door to solving a few problems. Easy to say I know.

Firsttimer, I too feel like you. It wasn't until I had DS2 I realised how much input I was giving to DS1 for so little developmental progress. For now I'm concentrating on just doing fun normal things with him as well as the projects set by portage. His physio has just said there isn't Amy exercises to help him progress and he just needs a lot more practise than most do I've started taking him to a gym club that runs preschool sessions- he loves it and is really encouraged to try new things. He's 3.5 now and attends a mainstream preschool 3 mornings a week which he loves. It's brought him on leaps and bounds as well as given me a chance to be less full on. He's due to start at a Child Development Centre nursery in September which I've Bern told it quite intensive. I figured he still so little we need to make time to have fun!

His paediatrician popped round to our house yesterday to tell me his genetics results (how's that for NHS service!) he has deletion on chromosome 6 that isn't on the list of known benign variations or on the list of known variations that cause problems. DH and I now have to have an array done to see if it is a benign inherited change or a de novo fault but a little googling and made me suspicious that this could well end up being a diagnosis. If so as he'd be the only one with this particular variation and so it would still leave us unsure of what the future might hold for him .

Gosh, sorry hanbee i hadn't seen your post.

getting some sort of result, must have been a huge bundle of mixed emotions. I know nothing about chromosome 6, have they said in what areas they think ds may be affected? I have a friend who received the news that her ds has a chromosomal anomaly that has never been seen before, she said it has left her feeling as uncertain as when there was no diagnosis, but she said the Unique website has been very helpful. have you a follow up appointment with the geneticist looming?

We have had no progress with regards to seeing anyone to talk about the videofluoroscopy results, ao i feel as though i am hanging in midair, ds has just got over his 3rd chest infection of the year. It feels strange having no appointments to go to!

Hi all I posted a while ago but lost the post
Hanbee I hope you are getting your head round it slowly. I dont really know what will help.
How are things going regarding the gastronomy tube hazey? Any ideas yet on whether its a good way for you to go.
I am easing back after an intense period of thinking through everything we are doing etc. I need to stop obsessing now and just see what progress we make. The nursery and HV are arranging a meeting of everyone involved in DDs care. I hope that will make me feel clearer about where things are at...
The functional learning programme has been going on for five weeks now. The first three were just with the book, now we have a therapist who works with us fortnightly to show us the techniques. H and I both feel there is some improvement. There has been more progress this past month than over the previous 2 months. But its hard to specify and when you invest time and money there is a huge bias towards thinking something works. But she seems more alert, more tuned into her hands and into doing things. Shes clapping again too. Its nice, she is just lovely.
The playgrounp sounds a-mazing missmavis.
I feel like I am having something like a breakdown, I cant thnk, I obsess about what to do, Im tired all the time. Ive started some st johns wort to try to take the edge off my feelings (I know from past experience that it works on me) but it will take a bit of time for that to build up. In the meantime I am flailing

Hi everyone

The result took me by surprise as I'd heard so often they show nothing and the paediatrician had primed me that often they don't ever find a cause for developmental problems. At moment as we don't have a clear "yes, that is the cause" I'm just not thinking about it. I've been very good at not thinking as I spent two years obsessing about it and it was too exhausting!

Firstimer, you sound like you're on that path and maybe need some help? Please don't take that the wring way; it's just it's sounds like everything is overwhelming you and that can be the beginnings of depression. Hope the St Johns Wort works. for you, my brother suffered from
Depression and still has anxiety issues. I know he found it helpful, he also talked to someone weekly at the charity Mind and did some Cognitive Behavioural Therapy that really helped him change his negative thought process.

Thanks Mavis, I had seen the blog and found the comments section particularly useful as it highlighted to me how different the outcome is for each individual. I do have a copy of the council booklet thanks, also here the council offer holiday activities not only for disabled children but for groups of siblings too. They're nearly all for school age children but look really good, it's called Aiming Higher I think. The preschool sounds fab, they should have ones like that everywhere!!

Anyway I'm off to munch my way through the chocolate fairycakes DS1 made at preschool today for mothers Day. Yum.