GDD

[Annaruthb]

Hello all - I am new to all this.

My 18 month old has been diagnosed with GDD and I will be honest I am REALLY struggling

I am trying to fill in the DLA claim form as advised the our consultant and totally baffled by it all - it doesn't seem to related to the condition at all, i.e does he need help dressing taking meds etc - we of course he does he is 18 months old....

Anyone offer any advice???

he doesn't' speak AT ALL and is awake 3-4 times a night EVERY SINGLE NIGHT, he doesn't walk either but can now stand.

I work full time in a really demanding job and am honestly at the end of my tether....

[Jothejavelin]

Hi Anna,

My dd has GDD, was diagnosed around 24 months, we first did a DLA claim form around then. She was terrible in the night too. I will reply again later and share some tips when I have time to write more, I can't just now but wanted to say don't despair. The DLA form is a horrible marathon of paperwork!! But it can be done...

[Jothejavelin]

Hi Anna, hope you're feeling a little better. I have more time to write now.

First, do you have help from Early Support / Portage? Our portage worker was a great help and good for signposting us to other organisations. She put us in touch with the Papworth Trust who are a charity who help with DLA applications. They may not cover your area but another organisation might -it would be worth looking. Papworth were invaluable in helping us understand the process.

Second, the form is trying to cover all possibilities for all disabilities for a wide age range, so some questions will just be irrelevant e.g. about school. Its totally fine to mark some as n/a. One helpful bit of advice we got was to think about the help dd needed over and above what most parents of a 2 year old give. Of course it can be hard to know if, as with us, the dc with a disability is your first child.

The other helpful bit of advice we got was not to think about a good day or try to average, but to start by describing a really bad day and then work out how often the bad days happen. You want to make sure you're describing the full extent of care required and not painting a rosy picture. This is something I think most parents find really hard, to focus on the negatives. The suggestion in the DLA pack of keeping a diary and noting e.g. how long it takes to get dressed each morning for a few days is a good one.

If your ds wakes 3-4 times every night, doesnt walk or talk then that is significantly more care than most parents of an 18 month old need to give - something that is becoming clearer to me now I have a second dc who isnt yet showing any signs of delay. I didnt realise that when we first applied for dd. I would focus on those questions in the DLA form, and describe his mobility in that section even though he isnt old enough to qualify for the mobility component, as it gives a fuller picture. Make sure to describe how his mobility, communication etc affect his safety in various situations. That apparently goes down well with the assessors, makes them pay attention. Also send copies of any reports you have from consultant etc, and appointment slips where you dont have reports.

I hope that's some help. Happy to try to answer questions, though may take me a few hours to come back. Or to talk about GDD more generally if that would help.

Hope you have a good evening.

PS - I work full time too. Good for you! Though it can be really hard to juggle can't it?

[Kanga59]

my son has gdd and is 28 old

I applied for dla when he was around 16m and it was rejected. I won on appeal and it was backdated.

to get middle rate care I had to state that he needed attending to overnight. This was easy because he only weighs 10kg now, so even less then, and his dietician and consultant require him to be fed round the clock. At the time I didn't think this was important as I just set my alarm and dealt with it. If you're setting your alarm for night dealings, put it down.

If there are things youre doing for at least 5 days out of 7, then put it down. this could Be over and.above what it's expected of a child of similar age.

getting dressed - does he put his arm.up for sleeves. does he know what shoes are. does he understand basic instructions like get your shoes. If you hand him a toothbrush, does he know what to do with it.

speech - he has no words. you are a spending time teaching and practicing sign language presumably. this is over and.above for a non gift child

walking- don't spend too much time talking about this. It won't add anything of weight

what about safety. can he play alone or does he need constant attention to keep safe. awareness of risks?

can he use cutlery. cut up food. chew well. Take a long time to eat?

If he missed milestones, state it on the form. quantify when he sat and crawled. can he clap, wave?

The firm is horrendous. I hope this helps a bit do you have a diagnosis or avenue for investigation?

[Kanga59]

That should have said 28m old

[dimples76]

My son has GDD, he's almost 3 and gets middle rate DLA - I'm lucky though we normally have no issues at night. I would really recommend Cerebra's guide to completing the DLA form - it gives loads of examples.

If he has recently being diagnosed I think you're doing really well even trying to tackle the form when you're trying to get your head around everything.

Kanga, I'm glad you came back and corrected your son's age - my son weighs just over 10kg and I was trying to get my head around a 28 year old of that weight!

[Annaruthb]

thank you all so much - it really hopes not to feel so alone.

H is my second child my older son is 10 and tackling his SATs at the moment, poor love.

I feel so selfish but at the moment I just feel utterly broken, I am head of department in a law firm and leave the house at 6am and at home at 6.30 pm once I have picked up the kids, my husband gets home at 7pm and works Saturdays so we never have any time.

H goes down in his own bed (takes on average an hour to settle each night) them wakes at 9pm 10pm (for a bottle) anywhere between 12 -1 again at 3 then 5am

last night I had two hours sleep.

I can't see anyway of making life easier, I adore H, I really do, he is such a happy self contained chap - app indicative of autism according to the consultant :(

he is a gremlin at night

I can't even begin to process the diagnosis - H is on the 9th centile, has been constantly ill - adenoids tonsils pneumonia and asthma, I keep trying to hang on to that contributing to the GDD, clutching at straws I know..

[dimples76]

Hi Anna

I don't think you are clutching at straws. I am not anticipating that my boy will 'catch up' but others do. My nephew was under consultant care for GDD after a v sickly first year of life - losing weight and in and out of hospital with chest infections. He's 4 this month and can talk the hind legs off a donkey, runs and jumps about - you would never know there was a delay. Obviously that's not everyone's story and no-one can tell you what the future holds. The main thing to focus on now is getting support in place. Incidentally Cerebra had a sleep issues support number you could call.

Take care of yourselves. Have you got any family who could give you a night off?

[vjg13]

The DLA form is horrific to fill in, I would also recommend Cerebra's guide. I have never had assistance filling it in but have heard very positive reports from others who have had help from various organisations.I have always included any reports and used as much medical jargon as possible.

Is it possible to look at some form of career break or a few weeks parental leave?

[wooshed]

That's a tough night. dimples' suggested Cerebra's sleep service, they're here - w3.cerebra.org.uk/help-and-information/sleep-service/

The DLA form is a horror isn't it? You've had some great advice with guides that are out there, Cerebra's is great. There might be a local group that could give you a hand with it, a DIAL group or similar.

Someone asked if you have any professionals involved other than the paediatrician - is there anyone currently involved?

This might be of interest to you - www.scope.org.uk/support/services/befriending/about-face-2-face
There's an email/telephone option that might work with an obviously busy schedule.

[Annaruthb]

thank you once again - we are in the system for various checks,

H just had a whole tonne of bloods taken (assessing for everything I understand) we are on a waiting list for Portage and we finally have a hearing test next week (I paid for an ENT appointment and he has confirmed if his hearing is below standard they will fit grommets now).

We are on the physio waiting list (6 months) but the physio he saw at Easter when he was admitted with pneumonia confirmed he has hypermobility which has affected his ability to crawl and walk, he finally managed proper crawling in the past month and seems happy to stand now.

Early years came to his nursery last week to do an assessment so waiting for some feedback on that too.

Just hate limbo land & being a bit of a control freak its not a comfortable place for me to be!!

having a break from work isn't an option (I was at my desk with pleurisy myself last month) and my parents live 150 miles away, and my MIL is very very poorly.

I know I sound very "woe is me" and I know that there are so many people with FAR worse issue, its just I've not been able to let off steam anywhere so I'm afraid you guys are getting it all

[wooshed]

That's a long list of things on your plate, no need to apologise for letting off steam.

[vjg13]

It is very completely overwhelming when your child has lots of appointments coming up and it can become all consuming. They did gradually thin out for us.

If your son has glue ear and fluctuating hearing loss it may also be worth considering a temporary hearing aid or just finding out if that would be appropriate. We went the route of multiple sets of grommets and my daughter has scarred ear drums and now a retraction of one which has to be monitored.

Good luck to you and your little boy.