dla for reflux
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- dla for reflux
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18/9/08 09:53
My ds now 16m has severe reflux and been through all symptons that have been mentioned he is on ful meds and barely eats at all and never drinks anything but water he is constantly sick and upset and is ill all the time he catchs everything that goes around and is up anything from 4-10 times a night its a living hell. He started ng feeding at 3months as he wouldnt drink his milk which by the way is neocate hypoallerfenic as he is cows milk protein intolerant and soya and is allergic to eggs.Just a month ago he has had a gastrostromy(tummy tube) inserted so he can be pump fed at night to give him the nutriants he needs and leave time in the day to encourage him to eat. Prior to this we were feeding 8 times a day 4oz bottles which is all he could taolerate at one time and it took over our lives it was hell. There is always somebody far worse off than yourself but the fact is my son has been very uncomfortable for a very long time and spent a great deal of time in and out of hosp and this has unbalanced the whole family as there is hardly any time for my other ds age 10yrs who thinks his life has turned upside down so its rather unfair for anybody on here to dismiss somebody elses problems as not as important as others. Me and my hubby dont have any family to help us and he works offshore so i basically try and juggle everything myself and there are times when i feel that i cant take anymore when i have had nights of no sleep and constant vomiting and runs. Reflux has took over ours lives and spoilt my babys 1st yr and i only hope that in time things change and this becomes a distant memory but that time is still so far away. Good luck mummys and big hugs xxxxxxxx
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14/9/08 08:23
I do know what HPLH is a do feel for you and your son.
I have already ready lost one of my children and am now living in fear for another of my children. you say you feel for me that he MAY have Cf like if he doesnt that suddenly takes all the other problems away that he is already having. I am praying every day that he doesnt have it, but that won't make the problems he is having right now any less.
anyway I am now going to stop posting on this thread as keeping this thread going is just upsetting people
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13/9/08 22:11
and toc3 if my son has haemophilia the facts are i will outlive him ,and yes its a risk i took having all my children ,but he will be looked after and i would not want anyone feeling sorry for me or my son
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13/9/08 22:08
toc3 im touched by your childs illness and dont like any child to be ill ,but what your saying is basically no child is has ill has yours,if my son has haemophilia which he is showing magor signs of having ,one brusie and he can bleed to death if not given clotting factor straight away ,he wont have a normal life ,its a very serious illness so please dont think your the only person with a child with a serious illness because your not ,the people that have got dla for reflux i dont blame them for having it ,has i said before it is a serious condition ,and the goverment dont just hand it out without looking into facts so those on the high rate deserve to be on it ,i personally have not applied for it ,but if i did then i would expect to get the amount i was entitled to on medical facts and grounds,i think this thread should now be left has we have all said our piece
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13/9/08 22:03
Toc3..Im sorry to hear your little one is having to go through so much, each day must be so difficult for you all.
I do know what its like to outlive your child..its the worst feeling in the world.
I understand it must be hard to see discussions where people are struggling with their situation when youre going through so much yourself but regards this situation..think enough has been said..its down to the Government when it comes to awarding DLA. Life is so unfair & people falling out here isnt going to change a thing..all its going to do is upset people.
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13/9/08 21:55
hi...ive not posted on here, but after reading i had to.
my son has just turned 2 and is fantastic! he's so lively and is a tipical 2 year old in to everything.......2 years ago it was a different story! he was born 5 wks early and had problems right from the word go. his 1st hospital addmition was at 2 days old, this was due to him being so jundus that the doc said if we had left him one more day his liver would of started to fail and his body would of started to shut down. then after getting through that he was diagnosed with reflux at 6 wks old, he projectile vomited everything back up. he had 11 hospital addmitions in 9 months!!! not one of those for less than 4 days. the consultant tried everything, ( gaviscon, donperidone, ranitadine, omeprizole, dairy free diet, 8 different baby milks, thickners, you name it!!) finally at 9 months old and only in 3-6 months clothes and weighing half of what he should do they decided to take drastic acction. so on the 15th nov 2006 he had a nissens done. which is where they detatch the stomach away from the essophagus, the they pull it up and wrap it around the essophagus to make a tight valve. this means my son can never ever be sick!
sorry i have babbled on a bit! it just really anoys me when people think reflux is not a dissability. it is so hard to have an ill child what ever there illness is and you should never compere!!!!!
i did not know you could claim dla for children with reflux, so i never have..... i would of done if i'd known about it.
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13/9/08 20:27
Toc 3 i understand you have had many problems to deal with and with your childs problems maybe severe gastric reflux doesnt seem that much to you but to the mums who have to deal with it is the worst thing they have had to deal with it i DONT get higher rate dla i get middle and my son is fed through a tube and the lady who does get higher rate didnt choose to get higher rate the government decided what she needed and it has to be verified by a consultant.
this is a place for us to chat and ask for advice and when you generalise like that saying that its disgusting that we get help of course we are going to be angry we are all going to take it to heart and be upset.
my son is a lot of hard work and he still hasnt had a diagnosis as to what his wrong with him his reflux is a symptom of a bigger problem that they havent figured out yet he is losing weight and although he may not be terminal or classed as serioulsly ill it breaks my heart every day to not know what i can do to make him put weight on and thrive.
That is why what yu said has hurt me so much i have lost a child i know what thats like and i spend every day praying i wont have to do that again but i dont let it affect how i view other people and there problems and it makes me more sympathetic towards them.
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13/9/08 20:02
Nobody was doubting that you are going through a terrible time and I'm very sorry to hear about your son. I'm just shocked that it hasn't given you more sympathy for others.
Perhaps next time you could phrase things differently rather than making a sweeping generalisation?
ok - my piece has been said, no grudges held x
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13/9/08 19:25
if you are entitled to it then fine go and get it but i still think it is out of order that is is awawded at high rate to be honest the stories you all have are very sad but if your trying to make me think twice it really wont work my son has a terminal condition called hypoplastic left heart syndrome he only has half a heart and people dont usually make it to the age of 10 he was in hospital on a ventalator for 6 months after the first 11 hour open heart op 2 months after second 9 hour open heart op and 2 months after 3rd 11 hour open heart op he has trouble breathing all the time he has sats of 65 so is blue cant feed properly cant get cold or to hot has medication all the time special milk and if he gets a cold or cough it could actually kill him could go in2 heart failure at any time could get a blood clot at any time has blood thining medication that could kill him if he fell and hit his head stops breathing alot and children with this condition can actually drop down dead at any time so yes think its probably a serious condition and cant actually think of meny things that are worse
to the lady whos son MAY have cf i really really hope the tests come back that he hasnt got it i will pray that they do because living with the fact you will outlive your child is torture i wouldnt wish it on anyone xxxxx
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13/9/08 16:34
Rhi hunny as you say bounty is mostly supportive (even when I don't agree with someone which enveitably happens with a site this large I always either ignor it or try to state my point politly, unfortunatly not everyone dose this) but like you I have been through lossing a baby and found a great deal of support from this site, from the girls I was due with at the time (who named a star after her)and then ttc after loss and then dif 08.
I know I have been really upset by some of the comments that were made but I am full of pmt and cold lol, although I am sure they would have been just as hurtful if I was feeling 100%
big hugs to you rhi(())
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13/9/08 16:06
Thankyou i am extremely disappointed that someone would come on this forum and dicitate that people are not entitled to help they need and deserve.
My son is disabled according to the hospital and the government yet toc3 seems to be saing that we should feel guilty about the fact we ask for help with money from the goverment because according to her they arent disabled or ill enough to deserve help to be honest i have found this site nothing but helpful after my miscarraiges an stillbirth and in dealing with my sons problems but i am really disapointed that someone would try to upset people who are asking for advice and it had certainly tainted my exerience of using bounty.
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13/9/08 12:18
((hugs)) to all that have been upset by the disagreements on here. I agree that its not the ladies posting here that should be questioned..nor indeed should they be made to feel bad or guilty for claiming of thinking of claiming a benefit made available to them by the Government. If you disagree with the receipt of DLA for Reflux etc then your issues are with the Government or other awarding bodies.
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13/9/08 11:15
How can you toc 3 come on here and start saying people ith children with reflux dont deserve dla my son is fed through a tube and i know how hard it is to deal with the problems a child with reflux had even if they dont need tubes it is an awful thing to have and you have NO right to make people feel guilty for asking for the help they need and deserve how is it affecting you if these people get help and if you know what its like then how the hell can you say they don deserve it if the government didnt think it was a serious problem they wouldnt give people the dla would they and the fact they do give help to these people shows that it is a disability
it seems to me your a little bitter to be honest but dont take it out on these people here who were only asking for help.
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13/9/08 10:02
TOC3 DONT HAVE A GOT AT NICANDLIAMSMUM,YOU DONT KNOW WHAT SHE HAS BEEN THROUGH OR IS GOING THROUGH ,SO YOU THE PERFECT MUM WITH THE PERFET KIDS PMSL,REFLUX IS SERIOUS ,MY SON STOPPED BREATHING AT 4 WEEKS OLD THROUGH SEVERE REFLUX HE WAS IN INTENSIVE CARE ,HE HAS BEEN DRIPPED ON A NUMBER OF OCCASIONS DUE TO NOT DRINKING ,HE WAS ON RANITADINE ADN DOMPERIDONE AND HAD A ALLERGIC REACTION TO IT ,HE ENDED UP IN HOSPITAL AGAIN,AND WAS THEN PUT ON OMEPRAZOLE AND GAVISOCN,TO TOP IT ALL OF HE HAS ABDOMINAL HERNIA WHICH ALSO AFFECTS HIS FEEDING,HE THEN ENDED UP BACK IN HOSPITAL AND WILL CURRENTLY ONLY DRONK 4-7 OZ OF MILK A DAY AND HAS TO BE SEMI CONCIOUS TO DRINK THAT ,HE ONLY HAS POWDERED FOOD WITH HIS MILK IN ,AND HAD TO BE WEANED AT 12 WEEKS ,SO YES REFLUX IS HARD AND IT IS A ROLLERCOASTER .AND ANYONE WHO GOES THROUGH WHAT WE GO THROUGH EVERY DAY DSERVES A MEDAL,AND IN CASE YOU WONDERED IM A FOURTH TIME MOTHER OLDEST BEING NEARLY 16 ,OH AND BY THE WAY BEFORE YOU START HARPING ON ABOUT SERIOUS ILLNESS,I HAVE VON WILLE BRANDS DISEASE AND DONT CLAIM DLA BUT SHOULD ,MY SON IS WAITING TO BE SCREENED FOR HAEMOPHILIA ,SEEN HAS THOUGH YOU ARE SO CLUED UP ON ILLNESS YOU WILL BE AWRE THAT EVERY CHILD I HAVE HAS A 50%CHANCE OF HAVING MY BLOOD DISORDER BUT IF I HAVE A MALE CHILD THEN ITS HAEMOPHILIA ,WHICH MEANS CLOTTING FACTORS 3 TIMES A WEEK ,BLEEDING FROM THE JOINTS AND MOST END UP IN A WHEELCHAIR .AND ALSO BEFOE YOU GO OPENING YOUR BIG TRAP POP OVER TO PASSED DUE IN FEB AND READ THE THREAD ,LIAM MIGHT HAVE CF WHICH IS ALSO A LIFE LONG CONDITION AND MOST CHILDREN DONT LIVE PASSED 30 ,SPECIAL NEEDS DOES NOT JUST MEAN PEOPLE IN A WHEELCHAIR ,NOW LEAVE NICANDLIAMS MUM ALONE SHES BEEN THROUGH MORE THAN ANY SPECIAL NEEDS ,SHE LOST HER DAUGHTER DUE TO SEVERE DISSABLITIES .,
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13/9/08 08:25
so my sons not really ill then?????? If the doctors think there is a small possiblity that he has CF I would say he was pretty ill. I haven't put my whole situation here because I didn't think I needed to justify myself but obviously I do.
Yes I do know what people go through with disabled children as I have a freind with a disabled child and she knows how hard I am finding things with my son. I have also lost a child in pregnancy that would have been serverly disabled had she survived so I do know there are people out there going through far worse than me, I have come to realise there are always people worse of than you no matter what you are going through, but why I should I not get my son the help he deserves. Its costing a fortune as we are now under a specialist hospital and tbh we can hardly afford to travel there anymore even though we both work (I am on maternity leave at the moment)as far as I can tell from talking to people in the hospital it is only one step down from being refered to gosh.
My son spends a good deal of the day wheezing and not breathing properly, he has server eczema other very server allergies, his lung has collapsed twice in the past, as well as all the reflux and he is waiting to go back to hospital for yet more tests and possibly an operation.
I have two children with reflux but ds2 is just a bit sick (he was alot sick before weaning)and on gaviscon and I would never dream of applying for dla for him as all I have to do is a bit extra washing but anyone who knows me knows all the extra work, stress and worry that ds1 has caused me.
I am actually quite upset that you said my ds1 wasn't really ill. I would rather he wasn't going through all this and had no reason to even think about applying for dla.
I have never applied for benifits in my life but have paid tax and my dh pays tax, the one time in the past I did need them (when I lost dd2 3 days before she could be classed as a still birth and therefore I couldn't have maternity leave)I wasn't elligable even though we couldn't afford for me to be of work, but some drunk that had never worked a day in his life was.
Also if I apply as I understand they will write to my sons doctor to see if they think he is elligable so he will only get it if he deserves it.
anyway can't belive I have wasted so much time justifng myself when I didn't even start this thread just asked a question on it.
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13/9/08 02:48
Toc3, if you know what these ladies are going through then what is your problem, yes there are a lot of dissabilities and special needs and they will be getting it also, i am sure we are all tax payers so are entitled to it and i am sure if they weren't they wouldn't get it, i think you are jealous personally!!!! There are a lot of people out there claiming all sorts that are making stuff up so they don't have to go to work etc how can you make severe reflux up!!!
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12/9/08 23:15
And your not being offensive now when you know nothing about what these people are going through? If your lo has severe reflux then you must know the complications it can cause and you should show some respect. Of course not every child with reflux should qualify for dla but in severe cases it can be debilitating, distressing, often there is an underlying cause and you get no help from doctors.
My son has severe reflux and it has taken over my life. I haven't even thought of claiming anything for it and won't be but have enough respect know that there are much worse cases than him.
I have every sympathy if you have a sick child but your attitude is something else.
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12/9/08 22:05
ummmmmmmmmmmmm read the first post high rate dla
and pop into special needs to see what people really go through on a daily basis my ds had severe reflux to the point of being ng tube fed and believe me that was the least of his problems so before you tell people to see what you are going through actually have a look at what is going on when people have really ill and disabled children and getting high rate dla for reflux is just offencive actually to people who have disabled and very sick children
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12/9/08 22:00
toc3 - do you actually know anything about reflux!?! Obviously not!
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12/9/08 21:14
erm I can only see people that are getting lower and middle rate and if you read what some of the people are going through with their kids you can see its a lot more than 'just' reflux. My son is in and out of hospital at the moment its costing us about £50 to get there and back as we have to go to a hospital in central london and has loads of other issues going on. His reflux has also caused his lung to collapse twice and the last time he spent nearly a week in hospital on oxygen in which time my hubby had to take unpaid leave to look after our daughter (we didnt have ds2 then-well I was just pg so didnt know)
I had never thought about applying for it before now but it is getting to the point where we need help. I have never scrounged or anything in my life and feel a bit weird applying for this (i havent yet and probably won't be entitled anyway) but on the other hand its to help my son, there is also a small possiblity that my son has cystic fybrosis although we are still waitning for his test results. Maybe you should re-read this thread and see what we are all going through on a daily basis. getting of my soap box now.
to the other lady that was helping me with my questions thankyou
hi my ds is 10mnths and has severe gastric reflux he has been gettin the higher rate of dla for 3 months and i was wndering should i b claiming carers allowence 2 please can sum1 help thanks hayley