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?

Evening everyone,

Hazey - well done of the walk outside, hope the crouching isn't going to do your back in further.

Firsttimer - I love it that your posts sound so happy at the moment. I think the journal is a good idea, I've been keeping a notebook for about the last two years. it's not as elaborate as your plans but I just start a new section each month and write down all of the new things both my DSes do (have a section for each of them). I find it really focusses me on the positives and makes me think "look at all the new things he's achieved". Its also great to look back a year and feel like it was another country. Off to read your blog link as soon as I get chance.

Mumtoj - Firsttimer's advice is really good. My husband took melatonin for a while as he has a sleep disorder caused by an inbalance of chemicals in his brain. It has no other effect other than stopping him from sleeping but he's now treated using an anti-epilepsy drug. I don't think melatonin had any other effect on him as I believe it mimics a naturally occurring hormone. Luckily DS1 doesn't have sleep problems, DS2 who is NT (21 months) is a nightmare though (up sitting on my lap as I type)! I was given info about a charity that help poeple with children who have a disability and sleep problems, I think it might have been through Contact a Family, might be worth emailing them as they would know. Can't find the leaflet though so had a google and found this:

www.scope.org.uk/help-and-information/cerebral-palsy-and-associated-impairments/sleep-difficulties-children

On the development side my DS1 was sitting at 9 months but used to regularly flop backwards for no apparent reason. I can't remember when he stopped doing this but I still have pillows behind him in his first birthday pictures. He crawled at 13 months but was already pulling up to stand. Cruised at about 15 months but didn't walk alone under 23 months. Babbled at 15 months and now at 3y 9m he has about 7 words. I started signing with him before he was 1 and he didn't sign anything until he was nearly 2 and half. Co-ordination is really difficult for him. He can now jump without holding on and is starting to climb stairs holding just the banister (walking up - yey!), he is starting to climb up onto the bed and can step up a step without holding on. He can't run yet though and has a wonky gait.

Better go now before DS2 starts typing things in!!

Thanks both. Souding v similar to ds so far. He started sitting at 9 months, but at almost 1 he still falls back constantly.

One other little question - how do you define babbling? I have had different answers on this from different doctors and I don't really know if he babbles or not! Is it making vowel sounds, making vowel + constenants, or does it have to be repetative constenants??? thank you!

D also still did mega falls from sitting after 9 months. I remember strategically placed pillows a long time after that. In terms of babbling I dont know. Our girl has periods were she suddenly makes more sounds, then it stops again. At tyhe moment she makes a chhhh sound which we interpret as 'kiss'. Its a stretch but we like it!

She has done the eeeooo, aahh buh buh, mamama, type stuff here and there and this kind of burbling that sounds like shes talking to herself.

Try doing a thread on your babbling question with that in the title, theres people who are speech therapists and who have lots of experience on here.

Thanks - good advice, I will start a thread.

hello every one
Hope you don't mind me jumping in on this.
I haven't managed to read all the posts yet so please forgive me if I've missed anything.
It's just what I have read I can really relate to with my dd.
We have been on the loong road to diagnosis since she was 18 months old (was 4 in may)

H/v referred to paedatrition at 18 month check as wasnt walking or talking.

She hit all of her milestones late. rolling over, hated being on tummy.
So didn't strengthen muscles as quickly.
Had cushions round her wile sitting until after she was one. We had laminate flooring and she would fall to the side, or sometimes fling herself back.
Was a bum-shuffler and didn't crawl.
Could pull up onto furniture but wouldnt walk holding on to it would bumshuffle and then get back up.

She was always such a happy baby ate and slept well.

I can't remember exact ages of when she hit her milestones as everything was so gradual and at her own pace.

She has low muscle tone and and has special shoes as the arch hasn't developed yet properly in her feet ( I am told that this will develop in time)

Her speech was also delayed and to be honest has only really been in the last few months that you can have half a conversation with her.
Had glue ear since 18 months old due to large adenoids and had her adenoids and tonsils out and grommets in February and it's since that her speech has come along a lot.

I know all of this is probably way far ahead of you. Sorry.
I've got a bit carried away and gone off track a bit.

But I can remember after the hv referred her I was going to appointment after appointment really not knowing what to expect but still came out of them all none the wiser.
I didn't know anyone that was going through the same thing as everyone I knew who had children were developing "normally"
And even if someone had asked me anything (not that anyone ever did but you can tell they are thinking it) I wouldn't of been able to give them an answer because I honestly didn't know. Which was really hard. And with my dd being my first I didn't have any experience with any other children. So to me i didn't know any different.
But it was like everybody else in the world thought thy knew what was wrong except me. And all the drs she saw never said anything about ht they thought it could be (they obviously had ideas in their head but weren't telling me)

It's nice to see that you have started this post and all the replies I bet are really helpful.
It will be nice to keep up to date on your journey.

Hi Lac, nice you are here. Theres a couple of people with children about your daughter's age on here. My girl is 2.5 and very delayed. Do you mind telling us a bit about what tests have been done. I definately know the frustration of never having a handy answer to anyone who asks whats up (whether helpfully or critically) and always being left with 'we dont know'

I would be curious to know what you are doing about school? How delayed is she now and does she get extra help etc? What decisions did you need to make? I am just turning my mind to this and am a little scared.

Hello all.

Have just had a lovely and exhausting weekend in London with friends, we have 3 kids each, so it was 4 very tired adults and 6 under 6 - yikes!

As far as milestones go, ds sat at 1, still can't really roll without help, crawled about 21 months, cruised from 18 months, and has recently started taking some independent steps at 2. But with each milestone, i would say it has been a good 4 or 5 months until he is doing it consistently or with any confidence - so he was still wobbly and falling over at 16 months, still falls on his face when crawling. Each step seems to take forever. The thing we worried about most at the beginning (apart from health issues) was his lack of interest in toys, and I would still say playing doesn't come naturally to him. Overall his paed says he is about a year behind in all areas, apart from speech....

...In speech he is at about the level of a 6-8 month old, so up until recently he just makes uh,uh, uh sounds for everything, and only in the last few weeks has he suddenly started say 'uh-ba', its the first time he has ever used a consonant. The SALT said that his receptive language is good, but verbally his progress is very limited - we are really pushing with makaton and picture cards to help him communicate,at the moment, it is definitely helping with frustration and he has finally started to use a couple of signs - milk, a thumbs up for yes, bird and cake(!)

Sleepwise, up until a couple of months ago ds was up 3 or 4 times a night, sometimes for up to an hour, one of us would get up and hold him upright, as it seemed to be because of his reflux. Then he started the day at 4.30ish - it was a killer, and I have felt frazzled by it tbh. Now he takes ages to go to sleep, and really fights it, going clammy and wild eyed, and eventually sleeps around 9, downstairs with us, then we take him up to our bed and he sleeps on the reflux wedge in our bed - i know this is not ideal, but it means I can sit up with him and sleep, and the domperidone seems to be helping with the reflux, so we are getting the best sleep we have had for years (now if we could just sort out dd1's nightmares, and dd2's nosebleeds!).

Hello Lac, lovely to meet you. Have the paeds given you any idea of a reason behind your dd's delays?

FirstTimer, has there been any discussion about statementing wrt your dd? We have a meeting organised for next January and next June (not sure why there are 2!) with the area SENCO, nursery and SALT about ds. His SALT and developmental paed, seemed to think he would have a statement.

My god, she really is walking!! Its so amazing. She just toddled off down the hallway

There'll be no stopping her now Firsttimer, and slowly you'll have move more and more things as she reaches into higher and higher places!

Poor you Mavis. Hopefully your DS will just avoid it somehow and you won't end up stuck in for ages. It recently did the rounds down in Cornwall and somehow we avoided it despite mising with some children who did get it, v weird.

Hi Lac, my DS1 is a similar age, he'll be 4 in October. He still only has a handful of words though .

On another note, I joined Cerebra ages ago and didn't hear anything from them but suddenly today received a whole lot of info through including an interesting magazine, I think its worth signing up. MumtoJ in it they mentioned they have a Sleep Service to help with SN related sleep issues:

Cerebra Sleep Service

I think the one I originally referred to was Face2Face

Face2Face

There is also

Partnership

Who will help guidance on education for children with special needs, Firsttimer.

Sorry about the chicken pox Mavis - hope you are all feeling better soon
x

Aww bless the poor wee Beep..

When dd was referred to paedatrition she arranged for
A load of blood tests to be done
Eyes and ears tested
MRI scan
EEG scan
Neurology appointments who did another load Of blood tests.
The basic genetic testing was normal and are now going to do the more complex genetic tests.

She has had input from
Physio - still sees her every few months
Portage - I hour a week used to come to the house and play to improve development, they stop when they are age 3 but by the time she was 3 she was out of the criteria any way.
Speech and language therapy

But still hav no idea a to what might be causing her delay.

Before she was due to start nursery the paedatrition wrote to the nursery just so they knew a bit about her, ad she arranged for an educational psychologist to come and assess dd, to see what her needs would be.

Hv told me to ring school and ask for a meeting with SENCO and nursery teacher. So we went and had. Look around, and they were really helpful.

She has 1 to 1 support for 1 hour a day to help her with her mobility, so she will be safe in the classroom. But obviously they are applying for longer in September when she goes into reception.

She had another education psychology assessment th other day and they did like a baby I.q thing.
4 different sections, on 1 he was slightly above average,
On 2 she was just under lower mark for average.
And the other one wasn't so good but the ep said that dd had her own agenda for that activity so it's not really a fair score.
So I was really quite pleased with it. She wouldn't of scored that high when she started in September.

Also occupational therapy have measured for supportive seating for September so that she dosent have to concentrate in sitting and can fully concentrate on what she's doing.
She can sit at a table but because of her low muscle tone she tends to lean as its effort to sit straight.

I was dreading her starting nursery last September but she has done really well her report said she is a popular member of class. So pleased with that aswel.

But also the lady who is there for her 1 to 1 has also been given Physio exercises to do with her.
If she didn't have her she Definatley wouldn't have done so well.
They have said that she is very bright but she just needs to have someone sit with her and just generally keep her on the right track with the task as she will just do her own thing otherwise.

But she joins in at storyline with the actions and has built friendships with the others.

But the school have been amazing tbh. Really helpfull and we have kept each other up to date on rvery thing and also any assesmens thy he has now the school also get a copy.

Is anyone else starting school or nursery in September?

MissMavis, how is the beep today? Chicken pox is horrible, the girls had it at the same time, so at least I didn't have the cabin fever for too long. I hope she is feeling a bit better with it. If any of those spots start looking infected, call the dr, because they can prescribe stuff to help.Has ds shown any signs yet? I had ds vaccinated, because it was going round at the time when he kept getting chest infections, and the dr thought it best for him to avoid it.

Oh and I found really cold jelly made with fruit juice a good way of keeping them hydrated and it is lovely if you have spots in your throat or mouth (I had chicken pox when i was 15, and couldn't eat anything solid for weeks!)

Lac, ds starts preschool next september, and goes to a sn nursery at the moment. They have been very good about helping organise the next stage. I must admit I was a bit taken aback by the SALTs reaction to my query about ds getting a statement, I said I wondered whether he would get one, and she looked shocked at the idea that he wouldn't get a lot of support - I guess because of his speech.

I am making a Picture Card system to use with ds, under recommendation of his SALT. I have a small chopping board, with a handle, with 2 strips of velcro, and a few hundred laminated pecs cards, on a large board, all with velcro on the back. The idea is to use 2 or 3 cards to offer a choice to ds, so that he can communicate what he wants. We have been using this system at nursery and it is going quite well. I am going to look a bit odd with my little chopping board, but it seems to be helping with his communication, and reminds me to sign every time as well.

Good to hear she is on the mend. Fingers crossed for orange. I managed to avoid it for 15 years - despite sharing a room with my poxy sister!

I have just had 2 phone calls, one from the genetics nurse, wanting to ask if we are free next week for ds to have his cheek swab, and to discuss the Kleefstra syndrome thing (she said that she had never heard of it so she was in the process of waiting to hear back from someone with more knowledge). The other call was to tell us we have weekly, ongoing hydrotherapy starting in Sept - Yay! This has made me unbelieveably happy!

Hello

Glad the Beep is on the mend Mavis.

We have a similar comms board, ours is made from an A5 folder with a plastic insert cover. All the pictures are held on laminated card inside, the card has strips of Velcro. Inside the plastic pocket cover is a circle of laminated card with four Velcro stickers to display his available choices.

Hanbee, that sounds like a much better system, my beautifully (ahem) designed 'chopping board system' will have to go, after dd2 decided to peel all the bits of velcro off and stick them to her face , thus aggravating her eczema and her having to be sent into school with lots of red, enraged squares on her face!

I am off to the stationers to buy and A5 folder, when ds wakes up.

I can't take credit for the design it was the idea of our portage worker. DS1 would put all the pictures in his mouth and despite them being laminated the moisture wicks in and blurs the picture. So we had to have a design where I control the pictures and he can't take them.

Your poor DD, my skin's like that: choose the wrong shampoo and I get lovely red drip marks on my face!

I cant believe we might actually get some good weather - it would make such a huge difference! We went to the beach recently - first time in ages I had kind of give up as D would spend the whole time just eating sand (really crunching it between her teeth). But we had the most amazing beach day with a friend and her daughter. DD ran sand through her fingers for the most part and was happily screeching with excitement about getting her toes wet! Shes really bold about new experiences just now so it was great fun with her wanting to explore seaweed, waves, shells. Hope you have a good time this weekend Mavis.

We havent done anything about schools/statementing yet - Im going to ahve to start asking come sept I guess. I am just turning my mind to it. I dreaded the whole school thing even before having children. We arent from the UK and its always just seemed terribly complicated. Bah! Thanks for the links/info hanbee and others - I am going to come back to this bit of the thread when I start trying to understand what options we have

Great news about the Hydro hazey. Nice to hear more from you Lac - esp nice to hear the school ahve been good so far. I like these communication board ideas. I am going to get a few photo choice cards laminated (food choices) and see if DD responds at all to those.

Missmavis, you will have gone by now, but hope you have a fantastic weekend.

Ds is a sand-eater too, really crunches it, it makes my toes curl.

Just went for a walk to feed the ducks, with the walker, he really loves it, but tends to get into trouble when he veers off into the grass! I think it gives him a sense of independence that will hopefully help with his separation anxiety. I have also rigged up a system of bungee cords, to attatch it to the back of the buggy, so that I can do a half walk/half buggy outing (otherwise, it would take several hours a day to go to the park!) Afterwards we rewarded ourselves with a brownie in Cafe Nero. It was heaven.

I managed to get some tickets for the paralympic athletics last night - I am so excited, although I had to try to explain to dd1 that it is the real olympics and showed her lots of youtube footage of paralympians to get her interested.

Completing the dratted DLA today - I WILL do it!