I get the middle rate of DLA for my youngest who has Sotos syndrome, a genetic condition that causes overgrowth and global delayed development.
I have just received the DLA1 Child application form to re-apply for DLA as it stops on 23 October 2006 (the day before she turns 5).
I didn't realise I would have to re-apply, although thinking back I do recall my portage worker telling me that the first application only lasts until the age of 5.
Previously my portage worker actually filled in the forms for me. Now she no longer has portage, I have to fill them in myself - luckily I kept a copy of the old application and will use that to fill in the new (40 page) form.
Because she has low muscle tone, pronated ankles, fine motor skill problems, gross motor skill problems - among other things - all due to Sotos - the things that she found difficult at age 2 are still the same.
I was going through my two lever arch files where I store all the letters/documents relating to my daughter as the form says it needs to be filled in by a friend/colleague/professional who knows my DD well. I thought a professional would be best.
The only professionals still actively involved with my DD now are to do with school statementing and educational psychologist.
The only medical professional that she sees is the ENT specialist and the audiologist but hearing is not a major issue for my DD.
She has had no follow up for O.T. (should have been a 6 month follow up review), no follow up for physiotherapy (should again have been a 6 month follow up review), her paediatric consultant who has known my DD since 9 months of age has now left but I have not been passed onto any one else in the paediatric community, impact meetings no longer happen as she has started nursery, the last time I saw my H.V. was when my DD failed her 9 month development check and they then referred me to the hospital paediatrician. Because we have been referred on to the hospital, the H.V. is no longer involved. I got a letter saying I had a new H.V. as my old one had left and I had to phone to arrange a meeting as she would like to meet my DD. When I rang I was told it was a "circular letter" and wasn't really applicable to me as we were now under the hospital.
It seems that since my DD started nursery in September and the school is involved, I now no longer see any medical professionals.
Is this normal? I think my DD still needs monitoring (if that is the right word) as the conition can cause tumours (rarely) and scoliosis but I have no idea who to contact.
I feel my DD has slipped through the net but don't know who to contact to get back the help and support and follow up that she needs.
Or is it normal that all the professionals take a step back when a child reaches the age of 4.