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?

at your over due ness that must have been awful! Thanks really hope not much longer too, feeling really desperate. Got second sweep tomorrow then induction will be booked for next week.

I have my DLA forms on the sideboard they are mostly done but need the consultants evidence and I need to add more "if I did not do this DD would fall into a coma and die" type stuff. Joy.

six!!Poor you! Mine on tues really hurt and didnt work so I am not sure it was worth it but will still be desperate enough to try again tomorrow. I was induced with dd too but in an emergency if it doesnt work its a c section way rather than planned. So we'll see but my anxiety levels are getting so bad I will have one as soon as they offer I think.

Ugh - good luck usedto. Hvae fingers crossed things will happen soon and smoothly for you x

Thanks. Been offered induction tomorrow! So baby is finally coming out. Feel very guilty at forcing it but will be seven days over and the tooth abcess and anxiety are driving me mad so not turning it down!

Yep, spent last weekend in agony and desperate for labour so I could get some gas and air! Emergency dentist gave me very strong anti biotics but the GP wouldnt prescribe anything for the pain other than low dose cocodamol-the type you can buy over the counter-it wasn't even touching it!

Damn, only just read all yesterdays posts. Usedto, hope it's all over by now- quick, easy and just perfect! I'm annoyed as I had an awful time DS1 and, like you, always wondered if it contributed to his difficulties but I was induced with DS2, 3 days early because I had gestational diabetes, it was fine. Induced at 3, established labour at 10, born at 1.25! Wish I could have got that in in time to try to reassure you that it can go well second time round x

Also, usedto it's v v interesting that you have the same sort of outcome with array results. I think genetics is such a new science that they still are far from having all the answers.

I'm glad DS1s progress is making you all feel positive things. Tbh his progress was really so slow until he hit 3 and he has had another spurt at 3 and a half. Although he's still v delayed I think a lot is locked inside because of his lack of speech - poor love, its so frustrating for him.

Also just caught up on your blog Mavis. Yay for the OT, we still don't have one . We also love the iPad, playing matching games, watching singing hands on YouTube, and the latest hit is paper toss, he has to have help to play it but thinks it's hysterical!

Ooh, hope everything is going ok for used2. I went 14 days over with both dds, exhausting.

Hope people are taking a Friday night break from their DLA forms.

Ds took some wobbly steps in front of friends today, I thought they were going to faint. it was lovely, he looks so pleased with himself.

I have signed ds up for a really lovely looking preschool to start Sept next year. They are very clued up about special needs, and I just had this huge sense of relief when i walked in.

Oh well dones all round!!! both to mini Hazey and to missmavis.

Read your blog mavis and dead impressed at DLA form completion - its spurring me into a final round of action!

Your post about the self feeding reflects our situation a few months ago. I pushed a lot with the spoon as D can get a loaded spoon into her mouth. But then lack of weight gain over 6 months made me realise that she cant eat enough if she feeds herself so we now spoon feed quite a lot (almost everything). I tell professionals that my main priority is that she's not going hungry. Tends to shut them up. I spend meals focusing on getting her to communicate on what she wants - so I offer choices (even if its just milk or food) and she reaches for what she wants. So hey theres a bit of speech therapy mixed in. I am very clear with nursery that she needs help with eating and that the most important thing is that she eats as much as possible. But in terms of fine motor skills - we save that for bubble popping. I am totally unapologetic with any professionals who suggest otherwise - and tbh its only the stupid ones.

Her overall behaviour and health have significantly improved since she started gaining weight again (poor girl was hungry (I have never felt more ashamed than when I made that realisation btw))

Mavis - well deserved treats after completing the DLA form, good for you.

Hazey - so pleased you've found a good preschool, their experience may help to take all the weight off of you in terms if solving your DS's clingyness I hope.

Firstimer, I find that my DS1 is ALWAYS hungry, he has two meals a day, stacks of snacks and a three course breakfast (cereal, toast and two pieces if fruit) and he has finally worked his way back onto the 25th percentile (which he was born on) after dropping to the 0.4th at one point. I think he had been hungry for a while too but didn't have the ability to tell me. He always appeared to eat loads but I think he lost a lot due to his poor oral-motor skills.

Hi everyone,

I hope you all had a lovely summery weekend.
I don't know whether you remember me and my DD. I wrote here a couple of months ago after reading about Firsttimer's daughter because she seemed so similar to my DD.
She is 28 months old now and getting stronger every day. She loves to walk around holding our hands,no independent steps yet but seems very close. She's had an MRI and blood tests which were normal. Following Firsttimer's helpful advice about nurseries I found an amazing childminder. DD goes 3 half days now and loves it. We've seen great progress since she started.

We've been invited to Multi Disciplinary Meeting on Tuesday. It hasn't really been explained to us what to expect from it. Could you shed some light on it for me please. Are they going to examine DD or just talk about her? Did you find it helpful? What should we look out for? What to ask?

I know you are all busy -especially you,used2b,Congratulation! I would appreciate any suggestion.Thank you!

Hi varga, so glad everything is looking positive with your DD. I've not been to a multidisciplinary meeting with my DS1 but didn't want your post to go unanswered. I'm sure the others will know more and be along some time soon to comment!

I have been to a team around the child (TAC) meeting which I used to find out what each professional thought the next steps should be. What was interesting though is once the meeting began things just flowed and I thought of loads of questions!

Hi Varga, I remember you - also remember our children sounding so similar. Nice to hear you sounding so good. We had a 'getting it right for every child' meeting recently. I think its just the scottish equivalent of the TAC. I donot know if thats the same as what you will have but it was basically an opportunity for everyone involved to discuss her from the perspective of their various specialisms and experience of her. I think it does help connect everyone up and helps spell out priorities. So for us thats her moving up a room at nursery and the prospect of needing some additional support in the new room to help her participate. It would be good if your childminder could attend as thats another person who sees your D regularly.

On a slightly different note we have chanced across an amazing OT who is doing sensory integration therapy with D and I think its been the most useful thing we have done so far. Have a search for it on youtube - there are some children on there with difficulties processing who are the first children to ever remind me of our girl. We can pm if you want to know a bit more.

In terms of what I had in the forefront for the meeting it was getting across the idea that while DD may be perfectly content to wander about touching things or looking out the window this was not enough for her development and she needs to be encouraged to make new experiences and to be helped to participate in activities that will foster developemnt and that that would require extra manpower. Now the LA havent gone for the extra manpower bit yet but they have accepted the premise - so I am hoping with nursery to gather evidence of when she needs help - eg: hand over hand guidance with placing or someone to hold her up so she can dance with all the other children etc etc.

We played our meeting quite well in that I held off stating the need for more help but at the same time pushed the LA person into stating that help could in certain instances be provided. Otherwise I think for everyone else it was good to here the different professionals say their piece and to ask them questions.

or even hear them

hello Varga

I don't know if a multi disciplinary meeting is the same as a TAC, but i found the first one was very useful at setting out everyones roles, and formulating a plan. The second one (which we have just had), was fairly useless, because no-one turned up!

I'm so glad you have found a good OT, Firsttimer, we seem to be lacking in that department.

Have just had the appointment through for ds's eeg, which is next Tues. We have to get him up at 5 (usual wake up time, so no problem there) and then keep him awake until 1 (a bit trickier!) when he will be sedated and tested. It said the test will take about 3 hours, which surprised me, and neither of us will be able to go in, so I just hope he is fully out for the whole time, because otherwise, he will FREAK OUT!!!

He's also just been started on domperidone - does anyone have any experience of this? It is for his reflux, but i am hoping it may also help with constipation, as we have come to the gradual realisation that it takes about 3 days for him to do a poo!

Did they say why you cant go in hazey? It does sound stressful - hopefully he will be asleep. The 5-1 stretch of awake child will be a struggle too Im guessing. Good luck with it.

We have our MRI tomorrow. I am nervous abuot a long hungry morning beforehand. Last year it wasnt so bad but who knows how it will go this time round. She's much more used to eating at specific times now...anyway I am trying to take the appraoch that there is no point worrying about it. And then I sit and worry about it.

We had our usual crappy pead appt yesterday. The dr is so downbeat that its very frustrating. Just sits about going on about being at a loss and how puzzling everything is. She alos doesnt do the reassure the parents bit. I could have done with some reassurance. My sister told me a few days ago that maybe we needed parenting classes. Sigh. It seems to be the medics in my family who ahve trouble wrapping their lobes around GDD. Past gems include: 'do you play with her' 'do you talk to her' 'does she see enough other children' 'how about nursery rhymes'. Oddly they dont actually want to be talked through any of what the various therapists are showing us or the specialist knowledge we are gaining. Instead I get comments about disciplining her for biting because 'she is old enough to understand that now'! Yes we have actually talked this issue through with a qualified person because its tricky so please just do what we say.

Its like they want to have cause to see me as incompetent. I cant talk to any of them anymore I get so mad about this.

Oooh, oooh, oooh

I have only just realised that congratulations are in order for Used2.

I hope you and your family are taking it as easy as you can, with your new little bundle.

FirstTimer, that sounds very hard with your family. The paed appointment sounds frustrating as well. I am finding them increasingly frustrating as well. i guess as time goes on and all the tests come back as all clear or inconclusive, there is little that the paeds can acutally do, and it becomes more the remit of the therapists involved. I'll be thinking of you and your dd at her MRI tomorrow. I can't remember why they are doing a second one, sorry? I should imagine the waiting whilst hungry becomes harder as they get older, so I hope she gets seen quickly, if I remember rightly they do it in age order (at least they did when ds had his).

It seems that wrt to the eeg, there is only a very small room, they ask that only one parent attend, as the waiting room is so small!