My world has ended - twins diagnosed with LCHAD...

(75 Posts)
twinsnikki Thu 01-May-08 16:27:37

Hiya All,

I am devastated. My twins - 4 year old girls have been diagnosed with LCHAD.

It is an enzyme problem, we are currently under St. Thomas's.

It doesn't have a good mortality rate... some medical papers state a large percentage of kids do not survive within 3 months after diagnosis!!

When the kids are sick, their bodies cannot sustain them, in complex sugars and they end up hypoglycemic....which is what happened with our little bunnies...

3 weeks ago, one of my daughters was on the verge of a coma, due to this condition.

I had 15 days of hell, one on them in ITU, and the other admitted 5 days after her sister. The doctors did not understand what was going on, but intensive tests on their blood has show LCHAD to be the problem.

We have been given an emergency feeding regime. If either of them fall sick with anything, the includes flu or such like, we have to implement this feeding regime and feed them every 2 hours day and night, until the illness passes..

I am trying hard to not blame myself, as this is a genetic disorder. Both my husband and myself carry the defective gene.

Constant espisodes can caused damage, like ADHD, Speach/movement difficulties... and last but not least Cerebal Palsy...Oh did I mention the sight problems in later life???!!

Has anyone out there got a child or multiples with this rare condition????

Seeking positive outlooks.....

Nic
x
sad

ajandjjmum Thu 01-May-08 16:29:21

I don't know what to say, but I couldn't say nothing.

So sorry - hope someone knows something about this.

spudmasher Thu 01-May-08 16:31:02

Bumping for you and hoping someone out there has some experience.

Blandmum Thu 01-May-08 16:32:47

I'm sorry to read your news and send you every best wish.

I do know some children who have MCAD, which I know isn't quite the same and is 'easier' to deal with.

You must not blame yourself. We all carry genes that are 'defective' in some way, it is just the most awful bad luck that both you and your dh carry the same rare genes.

The children I know cope very well. One is in full time MS school and one is in a share of MS/ special school.

I'm sure that there will be people along soon to help you, but given how relativly rare this is, it might be worthwhile looking for a LCHAd group to ask for support as well as MN

MarsLady Thu 01-May-08 16:32:57

I'm so sorry my lovely. Have you tried TAMBA?

I wish I could do something to take that away for you. sad

TheMadHouse Thu 01-May-08 16:33:36

I couldnt let this go without sending you might thoughts. I am so sorry and hope for the best

hairtwiddler Thu 01-May-08 16:33:53

Bumping in the hope of some positive stories out there. I'm sorry to hear your news, and wish you strength.

yurt1 Thu 01-May-08 16:35:06

What a shock for you
Do post on the special needs section (not special educational needs). There are a number of people on there with children with rare conditions.

corblimeymadam Thu 01-May-08 16:47:54

sad Have you seen this?

Love and strength to all of you as you come to terms with this.

bb xx

you poor darling and your poor little girls.

I hadn't heard of this - I'm so sorry but I send you best wishes and hope you find ways to manage this condition.

Egg Thu 01-May-08 17:07:55

Oh nikki I am so so sorry. I have not heard of LCHAD but just wanted you to know I am thinking of you and your lovely girls.

oiFoiF Thu 01-May-08 17:09:37

nicki, Im really sorry do pop over to the SN board though when you feel ready xx

shabster Thu 01-May-08 17:10:19

Oh my love - I have no experience whatsoever of this but I had twins in 1981 and I know how hard it is if one, or both, are poorly.

Think I agree with Mars about TAMBA - If they cant help I am sure they will know someone who can.

Sorry I cant be of any more use in a medical way but I am sending love and a massive hug for you all.

Califrau Thu 01-May-08 17:12:08

((((((())))))

hertsnessex Thu 01-May-08 17:13:06

oh im so sorry to hear this. def try tamba, is there also a support group specifically for this?

pinkmook Thu 01-May-08 17:14:52

Nothing helpful to say really but my heart goes out to you and if I could hug you I would. I cant even begin to imagine what you are feeling right now sad

AbricotsSecs Thu 01-May-08 17:46:19

Sending you lots of love, and to your girls. I'm so sorry to hear this. Please keep posting. xx

twinsnikki Thu 01-May-08 17:47:11

Thank you to you all for your wonderful messages of support, as it is so rare, not much is known about it.

It was only medically discovered in 1982, and currently babies are heel pricked for the sister condition MCAD. But this was lobbyed for in 2004 and implemented. Mine were born 2003!

As mentioned in this thread, is it very similar to MCAD but can be more complexed to control.

Feel like I want to wrap my ladies up in a bubble....helpless this end...

Have posted on the special needs area but if anyone out there knows of anyone with kids with this and is managing it successfully, I would love to hear from them.

I have contacted 'CLIMB' who are a group for conditions of this type but nothing yet and I have just posted to TAMBA, to see if they have anything.

What I think we really need is a to attend some meeting somewhere with other parents with this issue.

Nic
xx
sad

RTKangaMummy Thu 01-May-08 17:49:13

{{{{{{{{{cyberhugs}}}}}}}}}}}}}

oiFoiF Thu 01-May-08 17:52:43

have you tried contact a family?

Blandmum Thu 01-May-08 17:54:21

CLIMB is a good group and I hope that they get back to you asap.

I know that LCHAD is harder to control, but the children that I know with MCAD really do very well.

Hope that you get some support soon, sending much love

gagarin Thu 01-May-08 17:58:34

Well - you asked for the positives...here we go!

Your lovely DDs have got to 4 years old without showing any signs of being permanently damaged by this genetic disease. That is amazing.

It is not a curable disease sadbut it sounds as though you can avoid long term damage through a feeding regime when they are unwell. The feeding reginme does not sound as though it will be painful and they will not have to have loads of operations.

Your DDs did not suffer cot death or a near miss which apparently is how some of these metabolic problems present - someone up there is looking after your girls!

Thank goodness their first crisis happended in the UK close to such a great hospital as St Thomas's - what if you'd been in Thailand or somewhere on the holiday of a lifetime?

Obviously you must be absolutley gutted for your girls and shocked at such a rare diagnosis - but you are in good hands and the docs can help you look after your dds really well to ensure they live a good life.

lots of hugs

DarthVader Thu 01-May-08 18:03:05

I can't read this without replying, but I don't know what to say that will help you, so I am sending a lot of cyberhugs. Keep posting.

ChutneyMary Thu 01-May-08 18:03:48

I'm so sorry. I don't know about this condition but I hope you get the information and support you need soon. All best wishes to you and your girls.

iamdingdong Thu 01-May-08 18:33:20

oh so sorry to hear this I know nothing about the condition i'm afraid, but much love to you and your girls (my DTDs were born in 2003 too) you are all in my thoughts x

spiderbabymum Thu 01-May-08 18:47:55

Sounds incredibly stressful for you .

Try not to loose Hope .

There is a website for Families with rare conditions .
Found this one By putting "rare medical conditions " into Google...so Im sure its not the only one

http://www.cafamily.org.uk/Idx/l.html

It might be a start .

The other thing is to talk to some of the specialist nurses at the hospital....They should be able to point you in the right direction

Good luck

Twins, you may have seen this but I wanted to know a bit more about the LCHAD issue and I found this site:

here

which I thought had some rather positive advice and this child seems to be doing really really well. I know nothing about this condition so I'm sorry I can't offer any practical advice but it looks like other families are finding ways to manage this and have their children lead very happy productive lives.

xx

twinsnikki Fri 02-May-08 22:28:23

Gargarin,

Thanks for your posting.

You are right, I suppose I have a lot to be thankful for.

I have been bumbling around blaming myself and its true, I need to remain positive!

I will keep you all posted.

Nic
xx

twinsnikki Fri 02-May-08 22:31:45

Thanks to everyone for your wonderful messages. You have made me feel less alone with this thing.

I know I have DH, but inside I have my own personal crisis going on.

I am amazed at your mails.

Lost for words.

Will follow up on the site links you have supplied (thanks for those, much appreciated more than you know.

Nik
x

MarsLady Fri 02-May-08 22:32:58

<<proffers ample bosom for a huge, tight-squeeze hug>>

umberella Fri 02-May-08 22:45:16

Also just wanted to send love and best wishes to you and your LO's xxxxx

Ledodgy Fri 02-May-08 22:47:58

Huge hugs from me too. What an awful shock.

twinsnikki Sat 03-May-08 14:01:36

Hiya everyone,

I have light at the end of our very dark tunnel..wink

News update. I contacted FODs and was rang back from the US by one of the founders that same evening.

She was fantastic (Deb).

She explained a load of things to my husband and I. One of my daughters has been suffering leg pains and unable to work, and 'Deb' explained what this meant.

Due to her call last night, we followed up with our A & E department (who didn't have a clue) and then with St. Thomas's, and they were fantastic. grin

Just spent the whole day at the hospital, and the staff were kind and considerate. They took the time to explain the disorder and gave us a load of information.

My daughters underwent more tests and a biopsy but we found it that it is acutally VLCHAD, which is even more uncommon.

They will have issues with their health, with pregancy and enjoying themselves in later life, but because they are now registered with St. Thomas we are in the best hands.

It's weird, in the last 24 hours, we have gone from devastated, bumbling around in the dark to hope that we can perhaps control this thing.

I am sure our family have a huge learning curve to come, which will involve changing lifestyles, diet and understanding the limits of having two VLCAD children.

Even though one of our daughters is currently going through a 'crisis', we are aware of this and informed as to what to do and expect.

Thanks to you all for everything {{{{HUGE CUBERHUG AND KISS}} and I highly recommend FODs for metobolic disorder information.

Nic
xx

http://www.fodsupport.org/lchad.htm

used2bthin Sat 03-May-08 14:17:04

Hi Nikki, I posted on your thread in the special needs section but just wanted to say that having looked on the links about your DD's condition, there are similarities in the management of it and that of my DD's condition so if you ever wanted to talk more, I am very happy to do so as I understand some of what you are going through and have had over a year to come to terms with it and learn more. I'm very glad things are looking more positive for you all.

used2bthin Sat 03-May-08 14:22:35

Oh I feel a bit silly now didn't realise this was the ultiples topic sorry, I haven't got multiples I just saw it in active convos then was confused at first when it was a different thread! Anyway, offer still stands to get in touch x

Egg Sat 03-May-08 15:12:15

That's great news nikki smile. So glad that it looks like you will be able to control this awful illness and your girls will have a much brighter future.

spiderbabymum Sat 03-May-08 19:56:18

Nikki ,
Well Done You .... For keeping the head together .
So impressed that you managed to do all that research and source Exactly what you and your family needed ...ie more information .
You must be going through an emotional roller coaster at the moment . Really exahusting EH ?

Just to say best wishes to you and your girls .
Feeling quite emotional now . So Moving to see what a mother can do ..........
Take care of yourrself .!!!!!!

spiderbabymum Sat 03-May-08 19:59:14

Oh and forgot to say Delighted to hear that things are looking so much better .

kama Sat 03-May-08 20:08:12

I am so so sorry to hear that.... thinking of you all.

colacubes Sat 03-May-08 20:12:50

Bloody marvellous, gave me a cold chill reading your thread, and a warm shiver when i heard your latest news, fanbloodytastic, never stop asking, and pushing, well done you!!

charleymouse Sun 04-May-08 00:35:32

big hugs Nic, thinking of you and your girls. Glad you are feeling more positive and have some answers.

MarsLady Sun 04-May-08 01:28:25

smile Onwards and upwards my lovely! Good to hear that there's a light. smile

AbricotsSecs Sun 04-May-08 10:04:22

Big hug right back atcha! Please keep posting when you can, you know we will be thinking of you all.

twinsnikki Thu 19-Jun-08 20:37:01

Hiya all,

I have not posted for a while.

So here goes...

They have established that they are looking for VLCAD. I have posted some info below.

Very long-chain acyl-coenzyme A dehydrogenase deficiency:

Very long-chain acyl-coenzyme A dehydrogenase deficiency is a condition that prevents the body from converting certain fats to energy, particularly during periods without food (fasting). Normally, through a process called fatty acid oxidation, several enzymes work in a step-wise fashion to break down (metabolize) fats and convert them to energy. People with very long-chain acyl-coenzyme A dehydrogenase deficiency have inadequate levels of an enzyme that metabolizes a group of fats called very long-chain fatty acids.

Typically, initial signs and symptoms of this disorder occur during infancy or childhood and include low blood sugar (hypoglycemia), lack of energy (lethargy), and muscle weakness. People with an early onset of very long-chain acyl-coenzyme A dehydrogenase deficiency are also at risk of serious complications such as liver abnormalities and life-threatening heart problems. Symptoms that begin in adolescence or adulthood tend to be milder and usually do not involve heart problems. Episodes of very long-chain acyl-coenzyme A dehydrogenase deficiency can be triggered by periods of fasting, illness, and exercise.

My ladies have had loads of stuff done. Kidney Scans/Liver Scans/Biopsy. The 'D' day for the results was suppose be June 8th. However, some of the tests were not complete and due to the WW2 Bomb the appointment was moved until 18 August!

My little bunnies are due to start school in Sept and at the moment with the sicknesses that have been around, have spent most days at home with me - and the lack of sleep is killing me!

We have had to instigate an emergency feeding regime of every 2 hours day and night, with a glucose substitute Maxijul, provided from the hospital.

We have informed the new school and the 'special needs' counsellor and also the welfare contact - after all she will be banging on our door very quickly due to their lack of attendance due to illness.

angryWhat really got me about the welfare contact was she said that if the girls could not come to school due to prolonged sickness, then they would send the work home! I am all in favour of this, but the point she missed was have you ever tried to teach two children who have been woken up every two hours during the night, forced to drink 120 of a solution? They are not fit for anything as they are sleep deprived...not to mention my brain being fried! I have such large black bags, one of my friends was concerned I have black eyes. I am walking around feelign like they thing my dear husband is a wife abuser.....!!

Our local hospital (childrens A&E) are still none the wiser about this condition(despite us giving the information to contact the team in St. Thomas's and the contact numbers - which they didnt do). We have been asked by St Thomas's to take the kids there in event of an issue. My problem is that if we need serious medical assistance, (ie blue lights), they will only take us to our local hospital and not St Thomas's.

We have had a impromptu test of this process and found ourselves being the knowledge for the staff and they refused to do the correct tests necessary, they discharged my daughter to home, even though tests at St. Thomass the next day proved we had an issue.

I feel I am banging my head against the wall. I have contacted the medical advice team for the NHS to enquire if I am able to ask ambulance crews to take us to St Thomass, and they have said they will only take us to the hospital from hell....!!

Sorry to rant but lack of sleep and major stress is causing me to fall apart! sad

Why do the medical fraternity no listen? Why is everything just so hard to do?

Nic
x

MissingMyHeels Thu 19-Jun-08 20:44:32

Gosh that sounds hard work Nikki, also sounds like you're doing a fab job grin Hope all the results are good news for you. Is the 2hourly solution a long term plan?

twinsnikki Thu 19-Jun-08 20:45:08

Sorry all, forgot to mention...

One of my daughters had been identified to be Asthmatic and now has a steriod pump.

I was reading the information on VLCAD the other day and it said that care should be taken giving children with this thing, any form of steriods.

As we are waiting for 'D' day, without the protocal sheets etc (which are provided once they know the true extent of the spectrum the girls are), this stuff seems to being ignored....I am worrying myself sick every day when I am giving the medication.

I have no idea how they treat an asthmatic VLCAD child. I am sure I am not the only one, so there must be a solution out there???

Heres hoping..

Nic
x

Twins: Can you get a letter from St Thomas hospital on headed paper from a doctor there, explaining the condition and the necessity of a transfer.

The ambulance may have to go to your local first, but once there, a transfer can be arranged for 'specialist' care which is what you require and can be explicit in the letter!

Just an idea!?

twinsnikki Thu 19-Jun-08 20:51:28

Thanks Missing.

Yes, I am afraid it is...

For every illness we will need to do this plan.

We tried to take them to legoland a few weeks ago to take some of the stress away.

First day we arrive, one of the girls begins coughing...when I looked at her tonsills they were awful.

The hotel were fantastic. We had to explain to the staff about the illness and the problem. They rang Ascot A&E, and a doctor there rang us back. He wasn't aware of VLCAD but went out of his way to find out what he needed to know - bless him. So first night of the trip we got a free tour of Ascot A&E grin

The doctor was very good! Treated her and we were back at the hotel within the hour with medication. We had to keep coming out the park on day two to make sure she drank her solutions!

Oh the joy!

Nic
x

Saggarmakersbottomknocker Thu 19-Jun-08 20:51:31

Twins - SM's idea is a good one. You need to get a written treatment protocol from St Thomas' that you can carry with you.

As regards school - there is some info on the DFES site regarding education and children with medical needs. I have to pop out now but if you haven't tracked it down by the time I get back I'll post the link.

Are you claiming DLA and carers allowance?

gagarin Thu 19-Jun-08 20:53:56

My local hosp has a passport system which means that parents can bypass A&E and go straight to the more well informed children's ward. Discuss this with the GP?

twinsnikki Thu 19-Jun-08 20:58:32

Starlight, thanks for you mail.

This is one of the things I am in the middle of trying to sort out.

I did contact the necessary staff at St. Thomas's but they were unavailable and I have left a message, regarding the possibility of getting something in writing that insists on the transfer. Not heard anything yet.

I will let you know how I get on. I wondered whether the LAS had a list for specific conditions that allowed this kind of delivery to take place, but the don't.

As you right stated, it would involve going to the hospital of hell first, then needing a transfer, which to me, mad sleep deprived mother...thinking was a complete waste of time and energy. It would save a trip if we were able to be posted to St Thomas's?

The NHS medical team said what is more likely to happen is the team in the HFH contact St Thomas's for instructions of what to do...hence no transfer, for me the idea just fills me with dread...

They are playing with my honeys life...

Nic
x

Twins: Keep going! You'll get there!

It makes me soo angry that people who are vulnerable can be treated so apallingly (and anyone needing to access NHS treatment is vulnerable imo).

One step at a time you need to find out your rights!

I'm sorry I'm not very experienced in this area but things that come to mind are:

Goverments policy on 'choice' (surely now you can choose your hospital for treatment) and therefore insistence on referral!

MP letter of support

GPs letter of support

Refusal to get out of the ambulance at horror hospital (although will need to make judgement call at the time obviously)

Perhaps there are more knowledgable people out there!?

You can also possibly get a transfer by just asking tooooo many questions. In the end they might just feel it is better to transfer you than keep having to ring up St Ts to ask!!

twinsnikki Thu 19-Jun-08 21:07:26

Saggar/Gagarin,

Thanks for the mail.

What is DLA and carers allowance?

DFES site - will look for that right now.

Hey, I like the idea of the passport, never heard of that before! Will definately contact my GP re. this.

The HFH were suppose to have a 'red'file in the childrens A&E, which identifies the girls issues and is 'suppose' to prevent us joining the normal queue. We were told to mention the red file.

Well we did and guess what?? There was no red file, so we sat for 4 hours only to be sent home incorrectly.

YOU ARE ALL SO FANTASTIC!! [GRIN]
Thank you from the bottom of my heart.

Frustrated super bags - Nicx

CarGirl Thu 19-Jun-08 21:09:55

DLA - disibility living allowance, the girls should qualify for this

Carers Allowance - a benefit you should be able to claim because you are looking after "disabled"/ill children ie you are unable to work because they need care

twinsnikki Thu 19-Jun-08 21:15:58

Starlight,

I loved your mail, you made me smile, I thank you for that grin.

Not sure wether an ambo 'sitin' would do the trick and I found re. the question thing, it lead to being treated really rudely by the doctor in charge. Almost like I was questioning their judgement!

The more I pushed the less they listened! I ask them if they could check the CPK levels which involve a blood test, they simply did a finger prick sugar test and said it would not show anything...well, hey, it did at St Thomas's the next day.

The white blood cell count was up, indicating the fighting of a virus!!!

MP - yet another good suggestion...I did think of involving my local rag - being a friend of mine actually works for it...you know - name and shame approach...somewhere to vent my frustration.

My husband is very conservative and I know he would not approve of this approach, due to everyone knowing his business????!!!

What can I say??

Nic
x

twinsnikki Thu 19-Jun-08 21:18:03

Cargirl,

Thanks for the mail.

I have never heard of this before...I shall look into it, see whether they qualify.

Nic
x

CarGirl Thu 19-Jun-08 21:20:07

I don't know much about these things but if you post a new thread on the special needs forum there will be people able to point you in the right direction.

I am shock at them telling you they will send work home if they miss too much school, just remember until the term after they are 5 they don't even have to be at school so just don't worry about it.

twinsnikki Thu 19-Jun-08 21:22:14

Dear all,

I need to sign off, but promise to read any other tips or advice you have out there, tomorrow.

I have found myself sitting at my machine for hours, digging around for glimmers of information and you have given me tons to be concentrating on in a few mails.

I promise you all I will be doing a lots of the things you have suggested and be looking in to the possibilities I never thought to explore.

I appreciate you all more than words can say right now, thank you for taking the time and effort to help me.

Don't know how I would cope without it.

You are all amazing.

Signing off for now.

nic
x

MissingMyHeels Thu 19-Jun-08 21:27:30

Where in London are you Nic? (roughly!) and how far out of catchment is it for St Thomas' as I was under the impression that you could choose any hosp in trust - in my case St Thomas', Kings College and St Georges I think.

I know it's probably easier said than done but try and treat yourself to something nice - pedicure/massage etc. Do you have good hands on support from family and friends too?

bozza Thu 19-Jun-08 21:36:03

I am sorry about what I have read - must be so worrying for you. But definitely think you should look into extra support/help you need wrt carers allowance, DLA etc. Maybe the girls will eventually need some home tutoring or something. I know they are currently too young to worry about this, but if they miss a lot of school - just sending the work home is hardly going to be the answer is it? hmm Still I suppose you have other priorities just yet like stablising their health. Is there anyone who could come in and do the night feeds once in a while to give you a break?

me23 Thu 19-Jun-08 21:43:36

no experience of this but I wanted to wish you and your girls all the best x

MUM23ASD Thu 19-Jun-08 21:48:28

Hope you don't mind...but having read this, and feeling so much for you- and knowing nothing about LCHAD....

I posted a link to this thread on the Special Needs board- as i am sure someone on there will be able to help you with specific questions regarding your twins and also regarding Disability Allowance etc

I have 3 autistic boys- and have been using the Special Needs board for 5 years! there are many regular posters on there who are familiar with hospital procedures, medications and jargon

Hope this helps you in some wayxxxx

Saggarmakersbottomknocker Thu 19-Jun-08 22:11:37

nikki - here is the link for the info about school.

Here for Disability Living Allowance.

Don't be put off by the 'disabled' bit - it's for people (children) who need more care than usual. You claim on behalf of the girls - you need to do a claim for each of them. I was thinking that you may be able to use the money to employ an occasional night carer thus giving you the chance of a decent night. The forms are hard work but you can get help on the SN board.

Romy7 Fri 20-Jun-08 09:41:41

it might also be worth posting on the special kids in the uk website - there are all sorts of kids with all sorts of conditions, and they are demons with paperwork if you get stuck...

twinsnikki Fri 20-Jun-08 15:08:24

Hiya Everyone,

I return to you all, bushy tailed but certainly not bright eyed!

In my spare moment I am writing to you all, once again to say a HUGE THANKYOU to everyone out there, you are all a tower of strength.

Today (looks for a LARGE PLANK OF WOOD TO TOUCH), touchwood, girls are in preschool today. We actually had a good night, so for me and hubby, a bit of a relief! Girls woke up themselves at 12am and again a little later, fairing the interuptions from us.

Hopefully, there is nothing they will bring home!!!

Answer to all your questions...bear with me if I miss any...

{Missing} - I am based in Bromley and Kings College is probably about equal distance from us, in comparison to the HFM - Lewisham. sad

The options we have been given previous are Farnborough or Lewisham. Lewisham are regarded as the 'specialist' childrens hospital, and from experience of Farnborough I would not be at all keen to take them back there.

Asking about this ambo issue is one of my first priorities on the 18th August when I have my appointment. I have a friend who is a doctor and as posted up by another lovely person last night - re. passport, I am finding out about this as we speak.

{Saggar} - thank you so much for posting the links. I did take some time yesterday looking at the school site but as soon as I sign off I will look at the DLA one. Agree about the nightcarer thing.

Re. assistance, there is just hubby and me. Our families are not local at all, or much too old to assist us...infact need assistance themselves grin

I spent most of last night talking to my hubby about you all and the information you have all so kindly spent time supplying. Who said romance was not dead wink

{MUM} - thank you for your advice also, you have your hands full and yet are still finding time to mail - I take my hat off to you....thank you so much.

Have you ever been in a position where the word 'thank you' doesn't seem big enough to fit the bill??? Not even THANK YOU describes my gratitude to you all. grin

I am off to make some calls, look at some of the sites and work out my next course of action!

Nic
xxx

MUM23ASD Fri 20-Jun-08 15:33:56

twinsnikki Wed 25-Jun-08 15:40:33

Hiya All,

Just an update of the info I have found after all your advice.

I checked out the sites you all gave me grin,I also looked around for other mothers that have tried to claim carer or disabled allowance.

Re. Disability allowance, at the moment there are mothers who have children with MCAD - (same type of thing but lower down the fat chain). They have been refused and have had a battle to appeal. In some cases the appeals have failed and in others, they have fought and fought, eventually have won a 'mid'rate allowance. So it is a real hit and miss affair.

Re. Carers allowance, this is apparently 'means' tested. As I work full time I do not qualify for this, as I earn too much and do too many hours.

I have also been to see my doctor about the Ambulance situation (also, charlotte has now been confirmed as Asthmatic too, so I have both on steriods). The doctor told me that this has to be an arrangement agreed with us and the authorities. Until I have all the protocol stuff in hand, I am unable to move further with this.

I was however, really pleased to see the authority information about their responsibility for providing help when the kids are sick - home teaching etc. I am due to attend another induction day tomorrow, so will address this again with the specialist needs member of staff.

This will be the girls first visit, so it is a big moment for them, bless them. You know how it is, your little babies growing up wink

The girls have been off for the last few days with me with pains in their feet/ankles. I did attend the emergency doctors but couldn't see anything, so just watching her. But today, they are in preschool - first time this week.

I felt positive about them going in, but was a little concerned when one of the twins complained that her toes were hurting and wouldn't walk on it. When I checked it was due to a hang nail on her little toe - which I removed and then took a sigh of relief! grin

I have not given up hope, there has to be help out there somewhere, I am thinking of contacting the DWP about the disability issue to see what they say.

Best wishes to all of you out there.

Nic
x

MissingMyHeels Fri 04-Jul-08 17:40:46

It really does seem like an uphill battle - you sound like you're doing so well. Seems like you are at least starting to make a bit of progress with the ambulance issue, at least they listened!

Hope you and the girls are doing well this week.

lucyellensmum Fri 04-Jul-08 18:44:43

twinsnikki, i have just read your posts open mouthed. You are an amazing woman, your little girls have the best mummy they could possibly have. Many others would just curl up in a ball, but you have got out there and fought for your girls. I truly hope you manage to get things settled and sorted and get on with life with your beautiful ladies. xx

MsDemeanor Fri 04-Jul-08 18:48:02

The single best bit about DLA I have ever heard, and which, I think, made us get DLA when loads don't, is to start every single sentence with 'because of her/his condition'
So in my case it was 'because of ds's aspergers and dyspraxia he cannot access after school clubs/be left unattended at other people's houses/be permitted to cross the road/brush his teeth/whatever'
It is the golden rule, I think. That and 'lay it on with a trowel' - ie think of your worst ever day and describe that.
Do appeal!

MsDemeanor Fri 04-Jul-08 18:49:20

Also, send in every single report you have on your dd's condition, and ask a friendly doctor or ed psych or occupational therapist to write a special report to attach to your application.

milge Fri 04-Jul-08 18:59:06

I thoroughly agree with Msdemeanor's commnets. Stating the obvious is the rule with DLA. We were told to to use the phrase" due to ASD, or GDD, dd does X" and without an appeal necessary, dd got awarded higher rate on both care and mobility. Do not exaggerate if not needed, but do think of your worst day and describe it and the difficulties, in minute detail. Good luck. I have twins too, one of whom is NT, the other ASD and GDD, due to a genetic mutation. Its tough. You sound strong and a great mum.

Giraffescantdancethetango Fri 04-Jul-08 19:08:01

hope the girls are doing alright

Joey0 Fri 19-Apr-13 15:41:09

Hi sorry a few years too late but my son has LCHAD and he is now 11. I wish I had seen ur post earlier because I have been through most things!!

MultipleMama Fri 19-Apr-13 21:05:00

I have no experience and I'm sorry that this is happening to your girls. I came across a blog, you might like and maybe contact them for support and advice. http://lchad.com/

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