Took my little girl (aged 19mths) to her consultant appointment today feeling really positive. Her meds finally seem to be keeping her Asthma controlled. She is on Seretide (although unlicensed for under 4's and not recommended), Montelukast, Antihistamine, Ventolin and has Pred once a month ish.
I went in, sat down, said how happy i was that things finally seem normal for her and the consultant, edgde to his seat and said how concerned he was, that my daughter was very poorly and that for her to be on such a massive amount of drugs at her age was a true worry. Then he said that he ciuldnt think about taking her off any meds as she proved to need them and in fact then said that the next stage was injections daily.
Im stunned. I really thought she seemed ok.
He said her chest was beginning to flare, she has actually LOST weight since her last appointment 4 mths ago and her development physically was slowing.
So.....my questions are....
What are these injections she may need? I feel he was preparing me for something.
Also why is her development slowing? She was walking fine at 13 months but hasnt improved at all since then and in fact still is at the basic stage of walking, if that makes sense.
Im usually fairly questioning at these appointments but today I sat there stunned from the first thing he said.
My mind is whirling.
Also, I want her to have a chicken pox vaccine as I know this can pose a hazard to asthmatics. Where and how do I go about it? The nhs doesnt do it but I cant seem to find any private docs locally that will either.
From a very confused emily.x
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Why do you want to give her a vaccine that can be a hazard to asthmatics?
Can it? Frankly, I don't know but I find it odd that you want to give her something that can be bad for her and her asthma? Why won't any Doctor give it? I am trying to think back to my childhood and remember if I was given one and I don't believe I was - I think I just, like most children, got chickenpox.
Personally, as an asthmatic, I go out of my way not to have any vaccines that I do not need. I thought the standard practice was to try and get the child to have chickenpox - don't they have chickenpox parties with kids these days - as I am led to believe it is best to get chickenpox as a kid and dangerous as an adult?
Why do you want to give her a vaccine that can be a hazard to asthmatics?
I'm sorry to hear your having a nightmare time. If you are worried about anything ask you consultant to speak or write to you. Every thing that's discussed about my son's health is written down and sent to me, also with all the tests and treatment comes clear explanations to how it's all going to happen, even one for my Son to read (your daughters too young yet, but helps as they get older). My Son was on steroids all the time until recently and was unfortunate to have chicken pox three times (has scars from the 3 leader spots each time), twice very mild and then a big dose, same as my Dad! It's rare but can happen. We had to go to the hospital to talk to consultant but luckily it happened to be on very rare steroid breaks each time, thank you God.There are new treatment coming out all the time, we had unlicensed meds for my Son when he was 18 months old (some not for under 12's, but we had to risk it to save his life). He was smaller than most and under weight. Now he is tall but often doesn't put weight on.It's been a nightmare journey but he's doing fairly well at the moment.As a parent the guilt of filling your child with meds when your not sure of the side affects is just so awful, but I tried to look at the bigger picture, and it's paid off.
I think your mistaken. Its the chicken pox that's a hazard, not the vaccine!
It is understood that chicken pox can affect the respiratory system as well as other major organs. There are complications seen occasionally in those that have weakened immune systems too.
My daughter is just 19 months, has both chronic asthma as well as a weakened immune system due to the amount of steroids she takes.
I would never put my daughter at risk. So would never give her something I thought a hazard! I'm merely asking for advice to protect her from contracting complications from a normal childrens disease. Most children contract CP with no complications but I know Maddie is comprimised! And therefore needs me as her mum to protect her!!
Emily's correct Bob, steroids affect your imune system and make it very dangereous if you contract Chicken Pox. Emily, could you phone your consultants secretary and ask him to see you again? or if you could see a asthma nurse who has a copy of the notes the consultant made?
Good luck, I know how horrible it is to have such a dissapointing appointment especially when you think things are looking up.
ally
Bob I think what she means is to give the injection to protect her daughter from chickenpox which can be very nasty.
Little nutter had a very nasty dose of the pox at age 3, he had been taking pred at the time.
It was really awful and wld not like to see any child so ill.
True many kids go thru chickenpox without too much discomfort or problems, but it can be serious.
He was unable to eat or drink even due to spots in his mouth and throat, we had to attempt to numb his mouth and throat with a spray and try to force small amouts of fluid into him with a small syringe thing, it was very distressing for us all, and we ended up taking him to the hosp anyway, tho we had been making reg visits to the GP as soon as spots appeared and as he deteriorated.
Rattles, thank you sooo much for your sympathetic reply, it means alot.
Its terrible having your little baby so poorly. The guilt Im feeling about the amount of drugs she needs etc is horrendous. Shes sooo precious yet so poorly. I just cant get my head round it all to be honest.
Its so hard to know what to do for the best. The best being to keep her happy and comfortable. To be told today that her Asthma is severe and not likely to get better was a bolt! The pain is indescribable. I just want my baby to be ok and to be able to protect her as best as can be.
So glad your little boy was ok through CP. Ive heard of many with Asthma who havent been.
Oh poor you Emily. It's everything that none of us would like to hear. Give yourself a bit of time for it all to sink in - it's a shock to hear what your consultant has told you, and you need to gradually get used to it. Totally agree with the others - contact your consultant or any associated nurses etc and ask him for everything written down, as when you're in shock like that it's impossible to remember everything. Your consultant might also be able to offer some advice for the chicken pox vaccine? It is now licensed in the UK but isn't part of the routine immunisation programme, but your GP really should be able to offer you some advice. I suppose a couple of good things to draw from it is that your consultant sounds very good and also you know what the beast is now and know what you're fighting.
Emily - you're doing a fantastic job. Your little girl's lucky to have such an attentive Mummy. xx
Sorry to hear about your son litte_nutter - sounds dreadful.
I know there is an argument about the immune system and steroids but, equally, isn't there an argument that actually having such child-hood diseases can strengthen the immune system?
Chickenpox, as awful as it is - I know, I have had it as an adult - is natural whereas a vaccine is not.
without starting a vaccination debate, ( as quite honestly, I dont need any type of debate at the moment!) I can see your point that CP is a natural disease in children and a vaccine is artificial but why oh why would I let my daughter be vulnerable to chicken pox and its complications when recieving high doses of steroid medication?
Surely, by protecting her I can at least help this battle a little? Im helpless with regards to the severity of her Asthma but Im NOT helpless with the severity of a virus she need not contract!
In Australia, Canada and America this vaccine is given routinely as part of the childhood vaccination programme.
I merely want to help my baby!
The vaccine is available on the NHS for certain patients- see the nhs choices link nhs.uk/chq/Pages/1032.a spx
I think the reason why no doctor will prescribe it is because the vaccine is a live vaccine. Because your daughter is on steroids, (I think the class a high dose as more than six a year- could be wrong though...) the doctors would be wary of giving a live vaccine to her as it could cause the illness itself IYSWIM
There is also a worry about her contracting shingles in later life.
Hope your daughter gets sorted soon. Sometimes consultants put things in a way that shocks us... but they are just trying to help.
Emily, I am not having a go at you in any way. If I gave that impression I apologise. It darn hard enough being a parent let alone being a parent of anyone with a chronic illness.
I personally avoid all vaccinations whenever possible but can understand what a dilemma it must be for every parent trying to wade through the pros and cons of giving them to their children.
Does anyone know what injections he could be talking about?
Surely it cant be xolair as thats not suitable for children under 12?? What could he mean?
Does anyone have experience of the chest flairing? He said it shows uncontrolled asthma?? He said her chest was beginning to show signs of becoming mishapen?
Argh! there is sooo much to take in! When i first was told she had Asthma, I thought it would be an inhaler and thats it!
Could the daily injections be Bricanyl? It can sometimes be given daily other than that I'm not sure
Also the chest thing might be the same as another person on here was speaking about- scoliosis where the chest's shape changes?
Can't remember but chest flaring I think is when you see the bones under the skin more clearly because of the way you are breathing? Or something like that. It's like a way of showing consultants your chest isn't under control?
Hi Emily, my Son has scoliosis from asthma (although it took 9 years to diagnose asthma!!)Caused by uncontrolled asthma (all because he doesn't wheeze,wasn't treated properly by hospital when seriously ill) We see a chiropractor (one who is a specialist in treating children and was highly recommended) as all the hospital wanted to do was put him in a brace. Matty's spine now only has a very slight curve, but he has very deformed ribs on his left side. Both consultants at both hospitals are please with what has been done by the chiropractor and said she has done a really good job. Both hospitals and chiropractor say his spine may well go really crooked when he hits his teens but see the chiropractor when he has a severe asthma flare up, which helps open the airways up and keep his spine straight.It isnt cheap but he hates being different and sticking him in a brace just isn't an option, he is sports mad. Just another thing to keep us on our toes as well as the autism and ADHD!
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