DD had developmental appt...

[Arabica]

On the positive side we had a lovely, friendly, non-patronising developmental paedriatic consultant, who started appt by asking what we were concerned about and said she saw herself as there to help us address whatever issues we felt were most pressing.

She attempted the Griffiths developmental test, which DD used as an opportunity to put lots of nicely coloured objects in her mouth. Paed said DD (who was not premature) is probably now functioning at around 12 months (she is 20 months), although considerably less than that for language, which was what we had expected to hear,as she has glue ear and moderate hearing loss and is awaiting grommets at GOSH. DD can actually do a lot less than DS could at 12 months although I know the spectrum is very wide.

I am not sure how to feel. At 6 months old she was functioning at around 4 months, at a year it was 9 months...now an 8 month delay. I know it's very hard for them to be accurate about these things. But I'm left thinking, how significant is this much delay at this age? what does this mean for DD's capabilities in the future?

sorry the appointment was a bit upsetting. I find it hard to cope with DS' language problems, because it's hard when you just don't know how the future will pan out, if something is a medium term problem but will work out in the long run, or whether it's going to be a serious long term problem, which I guess is similar to how you are feeling, though I do appreciate that I don't have any concerns about DS physical development, so am in an easier position that you. I think it's very hard to make any sort of accurate predictions at such a young age, so all you can do is hope, and mesaure DD's progress in terms of her as an individual, and appreciate her as an individual. I think it's inevitable though having moments like these from time to time where you feel worried as hell.

These sorts of appointments are always depressing - to hear a stranger talk about your child's problems, it makes sound so much more real. But I would think that if she has glue ear, at least you have a physical reason, that can be fixed, why speech has not started so there is a lot to be postitive about in that.

When DS was 10 months old the pead (in the UK) told us that he was at a level of a 7 month old. However, when I went for a second opinion (in my home country) I was told that he had very different levels of development, for some things he was at 4 months, for others at 7, etc, he was all over the place.

So frankly, I don't believe very much in these assessments. I don't even remember what they told me in his latest assessment.

All I do now is compare DS to now he was a month/year ago. The best thing you can do for your DD now is stimulate her as much as possible, don't just rely on the professionals.

I never thought I would see DS doing some of the things he does now, honestly, children with developmental delay can make fantastic improvements with consistent stimulation.
Good luck!

Arabacia
I've given up trying to keep track on ds2's scores.
As a baby I was told his delays were purely in line with his prematurity, I was horrified during an assessment at about 2yrs old when he was assessed as being about 12 months developmentally with even worse language ability.
He is 5 now some areas he can score almost age appropriate & other areas anything from 20 mths. Averaging out at about the 3 yr old mark i think?
Unfortunately the DR's only see a tiny snapshot of our dc's capabilities.
The important thing is that you can see progress & use these assessments to your advantage to get support for your dd.

DS2 had his assessment at the CDC in September when he was 10 months old - they described him as being at the 3 - 5 month level, so severely dd.

A week later he was seen by two neurologists, and a group of med students, and they put him at about 8 months.

Since then he has come on a lot, and he was due to be seen again at the CDC on Monday, but luckily I had to cancel as he had appts at GOSH.

I don't see the point of the assessments, it was the worst day of our lives when they dxed him, they have given very little help (portage non-existent six months down the line, very few OT, phsyio or SALT appointments), and when I have asked for assistance (like a referral to Bobath or a geneticist) they turn around and say they are too busy, or they need to reassess him to give an uptodate opinion to the next specialist (whereas the endo at GOS said up front without us even asking that he would refer DS2 to a geneticist).

I have thought about complaining about the ped, she was completely unprofessional. She makes my blood boil just thinking about her....

The assessment they give depends on so much - I know that we are doing as much as possible to help DS2 (to the point where it is my life) and I would be happy if I never went to the CDC again in my life...

In the meantime, he has had grommets inserted (bilateral), and his interest in the world has improved so much (I guess I should thank the ped for picking up on his hearing loss, as much as it pains me to admit the appointment in Sept did some good!)

I am trying hard to not dwell too much on the future, taking each day as it comes, but I do worry about his future....

All the best,

Thanks everyone. I appreciate it's hard to draw conclusions when you don't have a diagnosis and because we had such a nice paed she did point this out. Although I am in inner London we do seem to have quite a good child development team with their hearts in the right place--or maybe I have just been lucky with the people I have seen. I've certainly had a different experience to MM22 despite DD facing some similar issues.

I think that giving your child an "age" of development at 20 months is totally unhelpful to the parent, as it gives you no idea whatsoever as to the future (or, in fact, much idea of the present, as it is only a snapshot of your child's behaviour - the experts aren't going to hang around with you for a week to get a more accurate idea of your child's development). It might help the experts, who've seen masses of children with different developmental profiles over a period of time, but that's about it. For you, it's just unnecessarily worrying.

All you can do at this stage is compare your child to herself - ie do you see her developing steadily every day, at whatever speed? Just because she appears to be getting more behind, because she used to be 2 months behind, then 3 and now 8, that doesn't mean she's actually slowing down - I mean, they could hardly assess her as being minus 4 months old in her development when she was 4 months old, could they? And whilst being 8 months behind may sound like a lot to you, now, it isn't so far behind that it's obvious she'll never catch up.

Horrible as it is (and I know it's awful - I hate waiting and seeing, and still waiting and seeing now my son is 4), all you can do is wait and see what happens over time and do the best you can to encourage your dd to develop to her full potential.

Hi Arabica,

As others have said it is hard to hear these things about our DC's even if said by a friendly peadiatrician or your best friend!

Fwiw my DS tested at about six months behind on understanding, gross and fine motor skills untill about a year ago. (He's now 4.6)He now tests at an age appropiate level on his understanding and gross motor skills.
He is slightly behind on his fine motor skills and hasn't developed a good pincer grip yet on a pencil, but he can overwrite his own name.

Obviously his speech which we have spoken about before is so far behind for his age I don't even ask how much. He sounds similar to a very determined one year old.

But his understanding improved greatly after having the grommets inserted and the use of makaton.

Actually another thing that has greatly helped him has been the area SENCo. She sees him weekly in playschool and fortnightly at home where she does extra lessons with him. Without this he would have been even further behind than where we started.

I hope you get some more definative answers soon Arabica.

I think the other thing to remember is that the Griffiths' is a notoriously innaccurate assessment, particularly at this age. It gets easier to measure as they get older, strangely even if they don't make much actual progress: DD1's griffiths' scores went backwards but they now think they are just more accurate than the ones they did earlier.

The other thing - there is a difference between what they are capable of and what they perform at. You may find that he is bright but because of the language issues doesn't comply well with tests, but as his hearing improves that may improve too. Another reason why it's hard to extrapolate from test results now.

I think the way to take it is to use the assessment as a positive on-paper bit of evidence you can use to fight for help and services, wherever you are going. Rather than as a routemap to the future.

Yes. The whole point of the exercise is to establish where DD needs help, so she can be as stimulated by her environment as a NT child. I try not to compare her to other children and get depressed about what she cannot do. I just can't help it though, especially when you meet a 1 year-old who's a better walker, a better communicator and just generally more robust.
She had a lovely day today in the sunshine staggering around the park, falling over a lot, squelching her toes in the mud, and smiling a lot.
I also got a date for her grommets op--23 April. We have to be at GOSH at 7.30am!!

Good luck for the 23rd Arabica.

We are going to GOSH on this coming Wed for three things - orchidoplexy, lumbar puncture and muscle biopsy. It sounds like a lot for a little one, but at least it saves on the GAs!

We have to be there at 7am...

Will be glad when it's all over - the orchidoplexy has already been scheduled twice, so hopefully it will be done this Wednesday - sick of thinking (and worrying) about it.

7am! How uncivilised. Have you got a long journey?
And will they be able to do all the procedures under anaesthetic?

I was there twice last week and it took between one hour and 1.5 hours to get there on public transport, given it's so early I may get a taxi there, will definitely do so on the way back not sure yet about how to get there!

All three procedures need to be done under GA, so we hope that firstly they can operate on him as planned on Wed, that they can do all three procedures at the same time, and thirdly that the results are communicated to the right people!

Am so looking forward to Thursday when this is all over (but then we have to wait for the actual results...)

I am so glad everything can be done under the one GA.
I'm getting excited about DD's grommets op because we'll know immediately whether she has any permanent hearing loss. Maybe she will even start to talk...

mm22bys I can't believe things are still not easing up for you! Hopefully you'll get some luck with the geneticist. We took dd3 about 4 weeks ago to the geneticist who gave us a diagnosis on the spot, I really wasn't expecting that! We are now waiting for some more tests and are hoping that, like you, they can arrange for everything to be done under one ga. Fingers crossed they get everything done this week for your ds.

Arabica, dd3 had her devopmental review just before christmas and like your dd used it as excuse to just throw a load of stuff around! I'm not convinced with the results as they were trying to get dd3 to do things we hadn't done before so of course she couldn't do them. Dd3 is behind with her develpoment and that is becoming more noticeable as she gets older and like your dd is still at 2 looking like she has only been walking a few weeks, constantly falling over, she is making progress but I suppose it's hard to see when you are with your child all the time. Dd3's physio suggested we follow dd3 around with a camcorder for a day, leave it a couple of months and do the same again so we can see for ourselves that things are improving. Dd3 had her grommets done in October, we found it very stressful, she was away from us for about half an hour but apart from being a little ratty when she first came round she recovered very quickly and couldn't understand what all the fuss was about! Fingers crossed for your dds op!

Hello bigcar. Your DD3 sounds a bit like my DD! So you now have a dx for her?

Sorry posted too soon, was going to ask what the diagnosis was (if you feel OK about saying).

Yes finally we do, it took a long time to persuade her paed to refer to genetics but I'm so glad we did! It turned out the marks on her skin that we thought were totally unimportant were the key to everything. She has something called hypomelanosis of Ito, apparently it's not very common. Reading some of the stuff that came up on dr google dd3 seems to have got the milder end of this syndrome and with a bit of luck it'll stay that way! It was good to get a dx, a relief in a way, at least we now know what we are dealing with and can try to get the support she will need in place. And we are taken seriously now when we say we have concerns, it's surprising how suddenly the educational psychologist has agreed to an assessment since the dx was made! We've also been in touch with the support group which has been great, there is no substitute for talking to people going through the same things. Doctors are good but they tend to only see the problem they are concerned with rather than the whole child as a person. The NDCS has been great too, we went along to the Surrey Deaf Childrens Society easter egg hunt yesterday, it was lovely seeing dd3 sitting among a group of children, the majority with hearing aids like dd3. Nobody gave her a second look sat there with her glasses and hearing aids on, really not something I'm used to!

We never meet any other children with glasses and hearing aids, except when visiting outpatients at GOSH or CDC so I'm about that! Although, as I've said before, if DD has a successful grommets op, she may no longer need the hearing aid.

I'm pleased you're feeling positive about the dx, bigcar. It's a shame you weren't taken as seriously by the ed psych before, though. After all, your DD hasn't changed--it's just there is a collective name for her symptoms.

I so know what you mean about medical staff being less able to see the child in a holistic way. We are very lucky that the two paediatricians DD sees (medical and developmental) do their best to treat her as an individual and I haven't had to battle them for anything. Although, you never know--DD has an appt tomorrow with the medical paed and he might decide we can't have our referral to the feeding clinic!

I'm sure your dds grommets will work wonders, but if in the meantime you want to meet with other deaf children and are anywhere near Fulham Broadway, London South and West Deaf Childrens Society have their 2nd drop in for families on Saturday 19th April from 12.30 to 3. The details for the drop in are on the NDCS site on parent place under childhood deafness look for, come and join us, London South and West drop in.

People always say about the importance of not labeling children, but it seems the easiest way to get help for your sn child is to get that label that comes with the dx. You are so right when you say dd3 hasn't changed, just the attitude of the professionals around her.

Hopefully you will get your referral to the feeding clinic, sounds like you have a good doctor there!

I'm sure your dds grommets will work wonders, but if in the meantime you want to meet with other deaf children and are anywhere near Fulham Broadway, London South and West Deaf Childrens Society have their 2nd drop in for families on Saturday 19th April from 12.30 to 3. The details for the drop in are on the NDCS site on parent place under childhood deafness look for, come and join us, London South and West drop in.

People always say about the importance of not labeling children, but it seems the easiest way to get help for your sn child is to get that label that comes with the dx. You are so right when you say dd3 hasn't changed, just the attitude of the professionals around her.

Hopefully you will get your referral to the feeding clinic, sounds like you have a good doctor there!

Fulham's a bit far away from me, as I am on the other side of London (Hackney) but I will get in touch with them if the grommets don't work/her deafness remains after the grommets are in. Very occasionally they can have middle-ear deafness which isn't caused by glue.

Hi Arabica,

I have just realised I am not too far from you (am in TH).

Can I CAT you?

The grommets did make a huge difference with DS2 - we were told that pre-grommets he had virtually no hearing in one ear (no response at 90 decibels), and moderate hearing loss in the other. They told us not to expect too much from the left even after grommets, and he was measured up for an aid for the right ear.

We were able to get the grommets op very quickly, and when he had the followup ABR we found out he has virtually normal hearing in both ears. Even the consultant couldn't explain the improvement!

He is so much more interested in everything now, has made so much progress - I guess now that his vision and hearing have improved so much he's getting so much more stimulation....

All the best,

Hi mm, DH works at a primary school in TH and we go to the museum and Vicky Park quite a lot. Were there at museum today in fact--DD trying to launch herself down the stairs! No need to CAT, am at bergmann dot grainger at btinternet dot com.
That's really good news about the grommets. I am so trying not to be excited but now that DD is well (she has had three months of constant colds/flu) she is coming on leaps and bounds and started having 'conversations' with us by blowing raspberries and making other silly noises, so perhaps she will be able to make sense of words.