Well just updating ladies, so far Elijah's pediatrician has charged like a wounded bull which is very stressful. He was wonderful though and is sending Elijah to a gentisist and is doing every test under the sum to get us answers. In the mean time he has just labelled him with a global developmental delay until we get more answers. I mean I know no body likes labels but we need them in order to help describe why Elijah is like he is. Basically we have a two year old in the body of a nearly five year old. Atleast though we have a start.

Ahh hun, I know how you feel about not wanting a label, but at the same time needing one, its so hard but at least you are on the right road now. Isaac has seen the physio who has said his behaviour could be related to a sensory disorder or some sort of DCD which is like dyspraxia, she did also say that he is too young to diagnose with that now but Isuppose at least they are looking for something. Isaac is waiting for genetic tests too but the paed is storing his bloods, I'm not quite sure why but we have another appointment in Dec so I will ask him then. Hang in there, It does suck but we are strong and we will get through it. xx

Yeah the out of pocket on these tests is going to be rediculous I don't know what to do money wise as all my money is tied up in the new bub :(. I am going to start putting in to places for financial assistance but I don't know if they will help because according to them my partner earns quite enough. I WISH! Once we pay our mortgage and get groceries over half his money is gone and then there are my daughter's dance classes and all the other bills to pay grrrrrr! I shouldn't just the gun though we may get some help, I might be lucky.

Hi,

Glad to read that you might be starting to get somewhere!! Just wanted to say that, once (and if!) you get a definite diagnosis, you might be able to claim Disability Living Allowance (DLA) - the form is a nightmare, and if you get the lowest rate (which we do for George) its only £18 a week - but better than nothing! Good luck!

S x

yeah you should go for DLA even if you only have a broad or general idea of diagnosis, my lo only has a disgnosis of 'Conjenital Myopathy' which could be any number of things, but to be honest all his tests are coming back normal but his neurologists are certain its something like that or similar. you put the dr on the form as a reference and they write to them to ask about the help they need.

DLA is not related to work or income so no matter what your household income if you're entitled to DLA you'll get it.