Doctors Opinion

[mole]

I took Dillan to london on tue to see a specialist. I had to go private as the doctors here were not willing to refer him to the specailist.

He thinks that Dillan has Isolated Growth Hormone Deficiency and therefore is a pituitary dwarf. He still must have further tests though to confirm it.

 

[Hanner Cymraeg]

I hope the tests go well
I believe this is a treatable condition if the Dr's suspicion is correct - very best wishes for a successful outcome

[cas]

Sorry for your news hun, hope you hear about positive treatment

[Groovy]

Same here; glad you are at last getting some answers.

[Groovy]

Have you had any further testing yet Mole?

[mole]

Hi,

We are still waiting for tests to be done. It is a nightmare at the moment he has hospital appointments all over the place in the next couple of weeks. I am having to still fight to get the blood tests done, they are now saying that they must be done on the ward at ormskirk but the consultant must give permission first. This is the same consultant who refused to send my son to an endocrinologist forcing me to go private.

There are also a few of dills problems that do not quite fit so other testing is also being done. I have at least managed to get some help from sefton carers who may be coming with me to some appointments and are setting up a CAF for him.

Hammer there is treatment available but it can cause diabetes, leukemia and even abnormal growth in various body parts. If Dillan has this is means that he was "destined" to be a dwarf and as yet I haven't decided whether or not the treatment would be a good idea as i don't agree with messing with nature. As we are not sure on the diagnosis yet and even whether the treatment would work I am just focusing on getting a diagnosis.


Thankfully now I have spoken to some nice people who understand what we are going through and one of which is
sending Dillan's information off o a specailtist in America. It is sometimes really hard when people ask how old he is and then i have to explain. What worse thought is when people say "oh i knew someone who was a really small kid they are now over 6ft" or "it will be ok he will have a growth spurt" . I just want to shout at them no he bloody won't.

Anyway rant over (sorry i need to sometimes) Thank you

[cas]

rant away hun its what these boards are here for.

Wish i had something constructive to say but i know nothing about these issues.

But has a mother i really empathise with you and am around if you need a shoulder

[Groovy]

rant away hun its what these boards are here for.

Wish i had something constructive to say but i know nothing about these issues.

But has a mother i really empathise with you and am around if you need a shoulder

I was just thinking the same thing ... you know where we are if you need to rant .. god it does help