DLA for my daughter who has SWCAH

tyramhall

Hi Everybody,

My daughter was born with the salt wqasting form of congenital adrenal hyperplasia. As well as taking 4 lots of medication a day we constantly monitor her to ensure that she does not have an adrenal crisis and die.
We applied for DLA after being told about it from our Endocrine Nurse in Manchester. Unfortunatley after 3-4 months Annabella has been refused as they do not believe she requires anymore care than a child of the same age without her life long condition. each day we spend approx 4 hours either administering her medication or keeping a look out for the first signs of an adrenal crash.
we have been advised by our medical team to go to a tribunal.

we have got the form to fill in. does anybody have any experience of a tribunal and if so any advice?

thanks in advance.

Paul.

Prinzessilein

Hi Paul,

Sorry to hear that you've been diallowed DLA for your daughter.m It does soiund as if you should go to a tribunal.

My first thought is that you might like to look for help. I went to DIAL, but the CAB can be really helpful too. DIAL will help you with the paperwok for the appeal, and will accompany you to the tribunal too if you want. They represented me after I was refused DLA. They are experts in the system.

From my knowledge, DIAL are also completely realistic. They will encourage your honesty and will give a very fair appraisal of whether or not there is any point in appealing.

Good luck to you and your family.

tyramhall

Prinzessilein wrote: »

Hi Paul,

Sorry to hear that you've been diallowed DLA for your daughter.m It does soiund as if you should go to a tribunal.

My first thought is that you might like to look for help. I went to DIAL, but the CAB can be really helpful too. DIAL will help you with the paperwok for the appeal, and will accompany you to the tribunal too if you want. They represented me after I was refused DLA. They are experts in the system.

From my knowledge, DIAL are also completely realistic. They will encourage your honesty and will give a very fair appraisal of whether or not there is any point in appealing.

Good luck to you and your family.

thanks for the reply. after speaking with our specialist she recommended that we go to tribunal and fight for it. she stated that all of the children that she sees with the same condition and some that are not as serious get DLA so we are confused as to the vague reason we have been turned down?
we almost get the feeling they have turned it down for the sake of it!

mich13x

My 10 month old son also has Adrenal insufficiency taking medication four times daily (hydrocortisone & fludrocortisone).

He was born three months premature and also came home requiring oxygen due to chronic lung disease from being ventilated so long.

We were advised to apply for DLA in January because of these health issues, we did and he was awarded high rate care for one year.

However he is now off the oxygen :j

And i notified DWP as i think the oxygen was the reason he got DLA rather than the Adrenal insufficiency, i was right and we are no longer entitled which is fine by me.

I would say i spend maybe an extra hour a day preparing medication for my sons bottles than i would for a completely healthy childs bottle and of course am always on alert for an adrenal crisis and any sickness/diarrhoea but for the most part i agree with DWP decision as im his mother and its my job to care for him regardless of how much care that may be.

Just the way i see it though

Good luck with appeal anyway!

tyramhall

mich13x wrote: »

My 10 month old son also has Adrenal insufficiency taking medication four times daily (hydrocortisone & fludrocortisone).

He was born three months premature and also came home requiring oxygen due to chronic lung disease from being ventilated so long.

We were advised to apply for DLA in January because of these health issues, we did and he was awarded high rate care for one year.

However he is now off the oxygen :j

And i notified DWP as i think the oxygen was the reason he got DLA rather than the Adrenal insufficiency, i was right and we are no longer entitled which is fine by me.

I would say i spend maybe an extra hour a day preparing medication for my sons bottles than i would for a completely healthy childs bottle and of course am always on alert for an adrenal crisis and any sickness/diarrhoea but for the most part i agree with DWP decision as im his mother and its my job to care for him regardless of how much care that may be.

Just the way i see it though

Good luck with appeal anyway!

hey,

thanks for your reply. i take on your views about your situation. the main reason we are appealing is because of her condition her immune system does not fight virus's etc... very well and as such we have decided not to put her into nursery until she is 3 years old. we did experiment with putting her in nursery 1 day a week for 2 months whilst my partner was doing work experience but in 2 months she was ommitted to hospital on 3 occassions due to illness. the first time she came back but didnt eat anything. we put it down to constipation. after 24hours she had only taken 2 ounces. we rang 'direct access' at blackburn hospital and they recommended we bring her in. it turned out she was in the first stage of an adrenal crisis and if we had put her to bed then she would have died. after speaking to our specialist we have agreed that she goes to nursery at 3 years old when her immune system is alot stronger. this is the reason we are applying for the 'care' element of DLA.

Indie_Kid

You may want to keep a diary and constantly refer to her needing more help than children of her own age.

I have had a tribunal (for a completely different condition) and it's just 3 people talking to me and trying to get as much information as possible about a typical day - this is what they base their decision on.

JJ7

Hi,

I think that the trouble with adrenal insufficiency (don't know if it's similar to hyperplasia) that some people take the meds and are fine and others take the meds and are far from fine - I don't know why but that seems to be the way it is (in my opinion). The fact that it's so rare doesn't help either, especially in an emergency situation which can be a very scary thing.

Good suggestion from sh135 about keeping a diary.

Just wanted to wish you good luck with it all.

SingleSue

My ex husband had addisons disease (diagnosed very late at age nearly 24) and was on hydrocortisone and fludrocortisone, we had to be so careful of any kiddy illnesses the boys came home with but it would still end up with him in hospital having an addisonian crisis as his immune system was so poor which then also put his diabetes completely out of kilter.

I have no advice however, he did receive DLA for a short time when everything was at its worse but once we got into a regular routine (which included hospital admissions 3 or 4 times a year at end stage crisis plus more minor episodes requiring lesser treatment), he was deemed to no longer be eligible for DLA.

tyramhall

SingleSue wrote: »

My ex husband had addisons disease (diagnosed very late at age nearly 24) and was on hydrocortisone and fludrocortisone, we had to be so careful of any kiddy illnesses the boys came home with but it would still end up with him in hospital having an addisonian crisis as his immune system was so poor which then also put his diabetes completely out of kilter.

I have no advice however, he did receive DLA for a short time when everything was at its worse but once we got into a regular routine (which included hospital admissions 3 or 4 times a year at end stage crisis plus more minor episodes requiring lesser treatment), he was deemed to no longer be eligible for DLA.

thanks everybody for their replies. that is our main concern with any illness that she could get. for the first year of her life, we have been told that at the first sign of any change then we have to bring her into hopsital to have her levels looked at. DLA is not applicable once they get into adulthood because they are deemed old enough to look after themselves which i think is a fair point. we only want to claim the care element until she is 3 years old.

if anybody has got any experience of tribunals that would be great.

wicknwax

My daughter also takes hydrocortisone, we used to get middle rate care and at renewal it's been dropped to low rate cate

I have asked them to look at the decision again and if it stays the same, I am prepared to take it to tribunal

Some people don't understand the serverity of an adrenal crisis

idvi

if her care needs involve someone needing to watch over her all day in the event of such a life-threatning crisis - you should get mid rate care dla. if someone needs to watch over her day and all night, you should get high rate care.