Im sorry but this could be a long post im afraid, so i appologise in advance....
I will start from the begining...
At the age of 9 months, my daughter started having this cough.. this cough was so bad that it would actually make her vomitt. This was always worse at night.
After monthly trips to our GP (this going on for two years) and being prescribed anti biotics which never ever helped her. My daughter was being sick so often at night i was ending up with no bedding and endless washing 24/7.
After two years, the dr finally agreed to give us an inhaler (ventolin) which in the earlier stages, did help a bit. After 6 months, we went back due to her having another bad bout, and was given a diagnosis of asthma and a prescription for beclazone 50.
This in my opinion, has helped... until November last year.
Now we seem to be back at square one....
My daughter cant be outside or she is sick with the coughing, she hardly sleeps at night and is frequently woken up with the cough and is shoved about whilst i get her cleaned, changed and strip/remake her bed,
Now her nursery (private run) doesnt seem too happy to have her. They say that if she is not well enough to be outside, then she shouldnt be in nursery, but that to me is discrimation. She is asthmatic and yes, it can be a drag but its part of my daughter... she isnt allowed to gym and recently isnt allowed outside to play as this sets her off... i feel like her quality of life is suffering in a big way, and at the nursery,they said there isnt anyone available to sit indoors with my daughter when everyone is else is outside (this will be due to the child-carer ratio, which i understand but still ...)
She starts school next year and her attendance is going to be very poor at this rate as she has hardly been in nursery since before Christmas.
The poor thing cant even keep her dinners down at times, and so is hungry but her coughing is so bad she just brings it back up.
My two year old daughter is still sleeping in my room as she is unable to share her sisters room due to all the kerfuffle during the night, she would turn into a zombie like her sister and I.
Our GP put her beclazone inhaler up to 100 but told us there isnt much else they can do without reffering her case to hospital...
I feel like im going round in circles and going nowhere. I feel as though im failing as a mother because i cant help her... I can only sit back and do what i can, but what can i do?!
After endless trips to our GP, i feel we have gotten nowhere and she is getting worse...
Im constantly on edge waiting for the coughing and the vomitting. I keep trying to get her to sit quietly, reading books, watching tv and doing colourings etc... but at her age she wants to run about crazy like all kids her age...
We were given steroid tablets when she was 12 months, but the box said not to crush them and to swallow them hole, which at her age then was not possible... and my daughter has a phobia of oral medication so just getting calpol down her is impossible (she will actually make herself sick just to get rid of it )
If anyone has any ideas - at all - please share them with me because im not sure how much longer i can do this. I want to make things better for her, but for now i can only comfort her and provide her with the inhalers (beclazone 100, 2 puffs twice a day and ventolin - at the momment, she is having up to 8 puffs of that a day)
Also, would it be worth applying for DLA in regards to my daughters case? Or would it be unlikely that we would be granted any award?
Any help at all, would be so so SO much appreciated. It really would ...
Thankyou, for reading my long long post. (I had alot to say and get off my chest im afraid )
Couldn't read your post and not say something. I'm first in the family to be asthmatic - adult onset. However I do have a daughter who had me at the brink, that same point, I think you are at. Constantly sick, in and out of hospital and no-one having an earthly as to why this was happening.
Every day and night we were changing clothes and beds and my clothes too. If I was going out somewhere, even just to take older daughter to nursery, you could guarantee that carrying the wee one, I'd need to come back and have a change of clothing just after leaving my front door. Used a kings ransom in washing powder and hot water. Fortunately I'd a health visitor who would listen to me when my GP didn't and tried to think of ways to help. Eventually, we found out daughter was allergic to milk and this is what was making her body react in the way it did.
So while I can't offer a solution on the asthma front, I can feel your pain and despair at current situation. Take care and feel free to PM me.
GM
Hi,
So sorry to hear about your liitle one, I have 3 children with asthma, so I know what you are
going through, my youngest (3) has really struggled with this harsh winter and like your 's is
coughing and wheezing etc, My youngest is under the care of a paediatrician who monitors him
etc, if your little one is having to use her reliever 8 times etc and cannot play she needs assessing by some one like a consultant etc Id go back to the GP and advise him how this is affecting her life and ask for an urgent referal etc mine is also at a private nursary and they are brilliant with his asthma needs, I find the attitude you are experiencing with yours appalling ! and in this day and age when more and more children are experiencing breathing problems it is a very worrying attitude to have, id have a word with the manager and ask his/her views on the discrimination you are being shown.
I dont know anything about DLA so cannot advise you there.... The prediosolne tablets should have been disolvable for a baby ! I cannot believe you were given normal tablets ...I really wish you and your little one well, definatly push for her to be refered x
What a nightmare!
I really feel for you and the whole family - this is a dreadful situation.
I would definitely ask your GP for an urgent hospital referral - this cannot go on! Your daughter needs assessment from a specialist to give you a coherent treatment and action plan and to give you some sanity and life back!
Good luck and definitely push for that referral as soon as humanly possible!
Feejay
Thankyou all for your lovely replies - it means alot to me knowing that im not alone... For such a long time it felt like we were the only people in the world going through this as even the GP didnt help much - kept being told it was probably an infection. Cant believe it took the length of time that it did to get a diagnosis.
We were at the GP again today, and desite my plea, no refferal. She thinks its just been made worse as she has a bit of a cold... I didnt even notice that to be honest, but she found that my wee one had a bit of a swollen and red throat, though it wasnt too bad, plus she had been complaining about a sore ear for the last couple of days too, which GP believs is down to a virus she may have picked up. She said to give it a week or two and to make another appt if her coughing hasnt picked up by then.
Slightly disappointed, i guess. Had hoped for a refferal but i will just have to keep hoping. If she isnt any better within the next 2 weeks, i will be taking her back up, yet again.
There have been alot of colds on the go and with such a horrific winter, its not been in her favour.
Its also frustrating with her nursery situation... I understand that by law they have a child-staff ratio but at the same time, i felt a bit disheartened to hear the owners motto about being outside... I know it makes things awkward for the staff because they dont always have a member of staff stay indoors whilst the rest are outside playing, but i do feel the not being well enough to go outside, shouldnt be in nursery thing was a bit over the top perhaps? Yes, i totally agree with that if the child is actually ill, but my daughter is not suffering from an illness that is simply going to go away overnight... She is asthmatic, not sick and i dont want her to lose out on any life chances or opportunities. With her starting school next year i just hope they will have someone there to sit indoors with her during the winter months any other time where it is in her best interest to refrain from being outside.
Its like im constantly walking on egg shells, waiting for her to cough and the slightest cough sets me off on one of my ""here we go again... thats it...!"" lol.
I keep trying to get rid of the basin that lives in her bedroom but as yet, its still sitting there as the main focal point when you walk in, haha. Most kids have teddies or books beside their bed, mine has a basin... lol. Im trying to laugh at some of what im saying, because otherwise i would probably be going insane right now...
but seriously, thankyou to you all who have replied or even read my messages of despair... it helps just knowing we arent alone... she isnt the only cough-vomitter around
Thankyou all so much
Much Much MUCH appeciated
xxxxxxxxxxxxxxxx
I have only just logged on to here today and just seen and read your post. What an ordeal to be going through and huge hugs to you. It all sounds so familiar, yeap my Ryan at a very young agae was the same. Sick constuntly, couldn't eat because fo the cough and doctors being so funny about his meds. We are almost at the same point again at the moment but thankfully so far no sickness. I know it is hard and easier said than done but keep fighting for your daughter we have to do everything we can get the doctors to listen and pay attention. We know our children better than anyone, they are just the ones that give us the meds. You can try and claim DLA for your daughter but they are so funny when it comes down to giving it out. We are about to claim for the second time for Ryan but thsi time I am getting the citizions advice bureou to help me fill it me and I will be making it very clear that we have had to have an ambulance out to him and I will send them a copy of the discharge from parmedic's care paper-work as the paramedic today said it would be a lot better for Ryan to go home and have a day of mum and dad TLC and rest and if he feel sup to it return to school tomorrow and get a follow-up review with the doctors asthma nurse ASAP. The follow-up review will be Tuesday and my husband is going ot demand that Ryan is refered to a specialist as the doctors are obviously no good anymore to deal with Ryan without the specialist help as well. When your daughter has a cold or anything you can double the beclazone or giv eit 4 times a day this is the route we go down with Ryan as it means he is getting the double dose spread out over the day instead of in one go twice a day IYKWIM. Hope your daughters asthma starts to imporve soon and be strong and if possible take some me time to re-energise and strenght yourself even if all it is a nice long relaxing hoit bubble bath when the childrn are in bed a sleep it does help and will make you feel so much better to. We always forget about ourselves until someone tells us this it just seems to come as part of the parenting life style
Haylz,
Firstly, please don't apologise! You are doing a fantastic job.
Secondly, your little girl should have been given steroids to dissolve in water. If she needs them again, then insist on some that dissolve.
Thirdly, if I were you I would change GP, because quite frankly the GP that you are seeing is not listening to you properly, or not responding to what you are telling them. They have even said it themselves that they ""can't do much more without a referral to hospital"". So why aren't they doing this??? As a minimum they should have referred you to a respiratory nurse who is associated to their GP practice. And if they don't have one, then they should be looking to the hospital. There are other different options for treating your daughter's asthma. It never ceases to amaze me when stories like your's come up on here. If you GP doesn't know what to do, then they should be doing everything they can to get the best treatment for your little girl. Flippin'eck, at our GP's, all it takes is for me to ring the doc or the nurse and say that I'm ""not sure"" about my lads breathing and they insist that I'm down there so that they can have a listen! Sadly, a totally different experience to your's.
You and you daughter must be absolutely exhausted (big hug). And your daughter is getting to an age where not only her health is severely affected by her uncontrolled asthma, but now it's going to be her education and social confidence and all those things that should be normal for a little girl. It's heart breaking to hear you story. I think that it's really important that you get a second opinion. Is there a different GP that you could see? Someone a bit more proactive? Maybe seeing the health visitor? She might be able to make a referral without going through the GP? It's worth asking. The asthma nurses on here are EXCELLENT. I strongly urge you to call them tomorrow and they'll be able to tell you how to get a referral, second opinion etc. They have an awesome knowledge of ""the system"" asthma.org.uk/how_we_help/a...
Re your situation with the nursery. I don't know what to say really, except that this is evidence to support the fact that she needs to see a specialist. Perhaps you could ask them to support you? They must be aware of how difficult it must be for you guys. Are they nice and approachable? You could ask them to document what's going on - keep a diary of what's triggering her asthma (going out etc), how many times a session she has any breathing probs, how many times she needed one-to-one care per session. I reckon that if you had some ""hard"" evidence, then even your GP might listen. What do you think?
Lxx
big hugs for you all.
makes my blood boil when I hear stories like yours, god sake what on earth is your gps like. I would change them if possible, if not write to the practise manager and complain, If thats no help then, complain to primary care trust, about your gps. It is your right to do this.
How about going to A&E next time your daughter is really ill, to see if they can help. That is how my son got his specialist.
As for nursery, do you have anything in your area called parent partnership. These people help with issues at school. There number will be in phone book. ASK for your daughter to be assessed for special needs care at nursery, the nursery should get extra money in, to supply the support she needs. I would try and get something in place before she starts school. It is your right to ask for these things.
Have you heard of contact a family, these people help point you in the right direction for all sorts of reasons, when your child has special needs, and they will give you details of parent partnership, or other people who could help in your area. TEL no is 020 7608 8700 ( free phone) Dont be afraid to ask for help. Ive learned that you get nothing if you dont ask.
My daughter also has a phobia for tablets, she is 16 and what a nightmare it is, Ive seen myself sitting for hours trying to get her to take medicine or tablets. She finally decided she likes nurofen meltlets , a couple of months ago ( Horray ) Mind you they cost an arm and a leg each time, but well worth it.
HOPE some of this info is useful for you. Keep your chin up, and hope you all get sorted soon.
good luck
Shelly
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GrannyMo xx
I understand and have been there, it does get easier, though constantly feels like a battle with doctors hospitals and schools. My son went to a school which was appalling in his asthma treatment and care, he now goes to a school which is understanding and will keep him in if he feels he needs to and are great with his meds. Hospitals and doctors, you need to perservere to find good ones that understand and are helpful, some will give you the run around and make your childs life harder just cause they have a problem with the concept of children and asthma. keep strong and keep foighting!
Just wanted to let u know u are not alone.
Others have given u all the advice I could give....
Can u see another doc at ur practice, to get ur daughter referred to a specialist? It does not seem that
just seeing ur GP is not enough and a specialist can maybe offer a different asthma plan.
Do u have an asthma nurse at ur surgery, she may be another port of call. Have u heard of an asthma action plan which details what to do at each stage of an episode? One of these may be useful from the asthma nurse and a copy for the nursery to show them that the sickness is asthma related.
We started with ashtma symptoms with our eldest son when he was a year old, with so many colds and docs appoints we were referred to a specialist but it took a while. we finally got on top of his asthma when he was six. We had all the 'if he is not well enough for the playground/PE he is not well enough to be in school'. We have so many chidren in school these days with asthma surely schools need to look at this, I understand the staffing issues but then again schooling for these children is just as important.
Our youngest is now at the stage where we are in and out of the docs, hosp etc but luckily he was referred to the specialist very early on due to his brother's history. We are not on top of his asthma yet.
I found the asthma society when I was at the ' I cant do this anymore' stage with my eldest. I have only recently returned here.It really pointed me in the direction of other issues in daily life I needed to look at, such as triggers.
we found, in our case, housedust mites biggest trigger for both the boys and with the eldest removed carpets, changed bedlinen to anti allergy, hoovering every day, wet dusting, and this made a big difference.
Let us know how things are.
My heart goes out to you reading your post. I know how you feel when you say you have had enough.
Believe me I have been in your posistion when my daughter was a few years younger, she was still poorly but manageble at home with nebuliser and oxygen. Keep fighting the doctors, if you are not happy with the response you are getting try seeing a different GP, explain your concerns and again ask for referrel to asthma specialist.
I know how tiring it is too, I have had to stop work after doing a degree in nursing and passing with flying colours. But my daughter comes first, her health is more important. I am at the stage of fighting doctors again but have got her referred back to her old top consulatant.
Asthma symptons vary greatly between children, keep strong, you are doing a fantastic job, and keep fighting the doctors if your not happy.
If you ever want to talk just get in touch.
Hear's hoping the little one is better and your feeling better. x
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