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?

Thanks am trying but its hard, just want to know how to help him.

OMG i phoned my HV to discuss things with her and to find out if there are any support groups in the area for both me and my DS. SHE HAS LEFT...im so annoyed that she left and atm we have no allocated HV.

Off to clinic today to speak to them as they are suppose to be calling but I want and need them to know i am not just a voice on the phone i am a mummy worried about her DS. Sigh why cant things be easier :(

Didnt go well at all saw 2 HV and neither of them knew anything about my son and his case hadnt been transfered he was just left in the drawer.

I felt patronised when one of them said she could arrange to come to my house to discuss betime routines.
I have done all the techniques and they all worked fine and DS has slept through until at the age of 3 we decided getting rid of his cot was a good idea. We did it slowly and made his bed his space...but OMG he has hated his bed and since then he has been a poor sleeper often finding comfort in our bed.

She did tell me DS doesnt have Autism because he looked at her in the eye so thats 100% definate (pfft).
There is also a year long waiting list for SALT. I mean come on there are children out there that need help today not next year.

The more i start to really get involved into whats happening with my DS the more sad and angry i am starting to feel.

If our DC have undiagnosed syndromes what help can they get? Will they simply be shoved in a corner with no one to fight their battles for them.

One thing i know for sure DS has a curved pinky finger (every consultant thinks this is relevant), small head circumference, developmental delays in all areas (some significantly worse than others), now all i have to do is get all the DRs to link them together and get us a diagnosis.

I do think its relevant to do some sort of diary (blog in your case) to monitor DS progress so i will start a diary. Thank you.

Sorry about the essay. This site is turning into my saviour lol

Yes we have a geneticist and he has had all his blood work done for it and its in storage, apparently genetics is an under funded department at the hospital and there is a years waiting list for the tests. Will find out the name tomorrow.
I will look for the FB page now. Thanks for that your a star. We must get to bed too have a long day tomorrow.

Just hoping they dont take more blood my poor DS has had his fair share of needles already.

Hi rosie sorry its so frustrating and I hope the appt today goes well. HVs are a very mixed bunch, shame yours are crappy. The waiting times you have are really long. I wonder if you are doing more advanced tests? Or if these are just regional variations? Our genetic stuff took about 3 months and that was the longest turn around time we had.
crazycat I am gonna have to remember its you. Whats your blog? [curious emoticon]...Am thinking of starting one myself as an outlet for all this and also basically a nosey parker...I love seeing more about people on here. This thread is becoming a real thing/place in my life. Can you message me the link or however you do these things?

There is a tenner off the functional learning book I am using on amazon here www.amazon.co.uk/Every-Child-Can-Learn-Developmental/dp/1412947952

Yes crazycat I would like to read also.

And thanks Firsttimer, nerves have kicked in and once again I feel DS is getting all my energy and attention whilst DD just has to put up with it. She had to miss school because of the appointment and being let down by the person suppose to be collecting her. But today of course she is sick and we have to go to this appointment as we have already rearranged it once.

I just hope she understands why we need to go. Got her 3DS ready and her books and going to take blankets etc for the car. I feel like i am letting her down.

hello all, yes i would be interested in your blog too, crazycat (yours too if you do one, firsttimer).

your waiting times do sound horrendous, rosie, have you got a SALT advice line? when i rang our local one, i ended up with an appointment the following week. As far as genetics go, our wait for the initial tests was very quick, but only because of the worry that ds may have sma. We are still waiting to see a geneticist and to have a finer microarray done - plan for today is to chase appointment!

We ended up in hospital last night as ds had a temp of 41 that wouldn't come down, they did a chest xray which showed a patch on his lung which has appeared on all his previous xrays (although no-one had noticed this until yesterday!). Another thing to ask his consultant about on the 20th.

They gave us the choice of staying or treating at home, as long as we came in if temp got stuck, his breathing became laboured or he starts vomiting. I would normally have stayed in, but for the fact that dd2 started to freak out - they had been so good all evening (we had picked them up from school on way to hospital), dh had taken them out for tea and they had played in the playroom on the ward, but dd2 was getting increasingly agitated that I wouldn't be coming home. It was gone 9 by the tie we got home and they weren't in bed until 10, I feel awful for the way it impacts on them, dd1 was asking why ds has to go to hospital all the time.

Anyway dh has taken the day off so that I can spend the day cuddling ds (i have a cold too - feels sorry forself emoticon!) and we can be ready to go back to hospital if we need to. Fingers crossed the meds kick in and we can stay at home.

Oh no sounds like you had a horrendous day. Lets hope his temp stays down.

Hope todat is a better day.

Oh hazey that sounds dreadful. Have a good mopey day and hope you all feel better soon.

ds is loads better this morning, after an awful night (temp 41, sick twice). The hospital are phoning later, but I think he has turned a corner.

I read your blog last night, maviscruet, it rang lots of bells with me, you write very well and with such honesty. i wouldn't wish these worries on anyone, but it is good to read the thoughts of someone going through similar stuff and realise that i am not the only one.

thank goodness for this thread.

ugh, ds ill again, think we are going back to hospital.

just got a letter through from ds's consultant requesting another 11 blood samples, including liver function, i can't bear the thought of another blood test.

poor you hazey, been watching your other thread. Can any one help you look after your girls or with anythng else with all this going on? Poor wee man as well. I hope whatever it is get better v v soon

Ouch your poor little one. am just off to read the blog.
I have a meeting with school tomorrow with special needs coordinater and HV is coming out on Tuesday to discuss the support we can get in the local community.

Just read the blog, funny what your wrote about having another baby as we were talking about that yesterday when we saw how he observes siblings playing. We cant physically tho which will always be one of my regrets in life.

Im feeling tired and emotional all the time, wondering what i did so wrong, OH assures me it was nothing I did. DS tantrums are bad today, he didnt sleep well because his routine was disturbed therefore we are going to have a bad few days.

Our DD asked yesterday If DS was going to die. I looked at her and just said I dont think so but nothing in this life is certain. She cutely said she doesnt mind if he dies when he is 90 but not yet because they have so much more fun to have.

DD always thinks about her little bro. From the minute he was born. See my OH isnt the biological father of my DD and DS his biological dad didnt want to know as he was a boy and ran off with my friend.
I feel guilty that OH has to cope with my DS when he has all these issues. Every week i ask him if he is sure he wants us to stay in his life. He has always said DS is his son in every way. Funny thing is people say they look alike which is funny.

Im really feeling sad and low atm. I just cant shift the feeling that I did something wrong.

Hey missmavis thanks for the blog link. I loved reading it, seeing you and you ds. Orange is lovely and I have been going through so many similar things over the past year. Its hard to explaion to anyone not going through it and reading blogs like yours makes me feel less alone. Thanks for posting it.
I also had a read through the blog you linked to Karen Pape and that really made me think about challenging our girl more. The stuff about habits hiding brain development made a lot of sense to me. I think we fall into routines with her and dont make her do things that are at the outer end of her ability. So today I insisted that she walk (holding my hands) to her coat at nursery and made her use her spoon more than I usually do and kept on at her to stop just dropping her spoon. I think it worked!
hazey hope your son is doing better, am worried for you

Firsttimer apparently at my DS nursery all the little girls run around trying to do things for him until recently he got cross at the girls and the teachers finally told them to stop doing things for him.

Im trying to do a chart for DS so when he gets dressed, puts shoes on etc we mark it on the chart. Im not going to do a reward chart just an I can do it chart.

I thought I would post quickly about our last pead appt. As some of you may know I struggle with appts and always end up with a real low afterwards - mainly because nothing really happens and I am disappointed that no one can tell me anything that sheds any light on our girl.

Anyway last wed was different. My expectations were low. I think I finally ahve it in my head (sort of) that there is no magic bullet/diagnosis at least for another 12 months or so. Also I dont really like the pead who is a bit odd and not very good at engaging with D. But this time I took over a bit. Played with the girl for her, trying to highlight/demonstrate what she can and can't do. That worked much better. Eg: stacked the bricks so D would knock them over instead of just leaving them on the table where she ignores them or just bats at them (really like a 4 month old). Refused a brush for pretend play and took a wee cup instead as I know D pretends to drink from the cup but hasnt a clue what a hairbrush is for. Encouraged D to walk to the wee table holding my hand. ETC So pead got a better view of things. I also talked through a lot with her. For instance she wondered whether D just forgets objects once they fall as she doesnt look for them. I told her that when it suits her D has a great memory and will persist in going back to something (eg: TV) regardless how often you remove her and refuses to be distracted so how does that fit?
Anyway this all worked much better for me, we ended up have an open discussion about things that are just puzzling: like is it her cognition thats lacking or is she refusing to pursue things as a way of managing her frustration that her body isnt doing what she wants? No clear answers for sure but interesting for me to have a pead talk through whats uzzling, break it down into separate elements whcih in turn is helping me now in trying to understand whats going on.

For instance now that we have started out functional learning sessions I find that I am starting to see evidence of D zoning out or just batting at stuff when she cant do something. I'm not sure yet thats what I am seeing but I think theres a relation and so I think less that she has absence seizures or a lack of concentration but more that she is trying to switch off from something thats upsetting her.

I did say brief post, which this isnt, but I wanted to talk about this somewhere because its helping me.

Im thinking of videoing DS to show the Drs what he can and cant do. Its weird because sat in those offices they throw questions at you and for the life of me i can never think of the answer.

The zoning out happens to our DS too. Its like he just isnt at home, he does this alot at the hospital.

Good luck i hope answers come quickly. We have school appointment today at 12.

First off - Hazey - hows he doing?

Second: I have had one of those days where I cant stop thinking about things. I am back in 'the fear' but dont even know what to google any more.
I had a look at the developmental milestones for 2 year olds. It took my breath away - we dont meet even one. I keep trying to focus on the positive but something is really wrong here.

I dont know what else to do. I am re-thinking autism. It doesnt really seem to fit but...I dont really know what else to do.

The saddest thing is that she's getting to old to 'blend'. Shes two, and she is the size of a two year old. A small two year old but definaitely not a baby. I notice people wondering why she doesnt respond. They think shes grumpy or tired. I dont always want to say that actually she never/rarely does that. But its getting harder somehow. Like we are crossing a barrier of what is acceptable. Its acceptable for a baby to have a screaming fit because shes hot coming into a shop. Its different if your child is 2 I am starting to notice.

What else should we do? Should I ask the Drs more about autism, put pressure on starting more intensive therapy? I dont even really know what ABA is or anything like that? Or what it costs? We are kind of broke I am scared to look into it and find we cant afford it. I guess we will just have to cross that bridge when we come to it tho. I keep avoiding mummy things because I cant handle it and I feel bad that I am just failing her. Not pushing enough, not doing enough, but I dont know what more to do. We keep waiting for her to make progress but it seems like we are just falling further and further behind. Maybe she wont ever make it and I just dont know what to do anymore. We seem to have run out of tests and ideas. Nobody knows whats going on. Nobody really helps us. Its beyond awful and there is no end in sight

Sorry, bad day, bad evening. But need to post again
Looking at boards etc of people in our situation they talk of fighting to get more support or resources. I dont even know what we need to get. Do we need to get something? I feel like I cant keep waiting for some miracle but I have no idea what we should do.