My 3 year old daughter was diagnosed as having severe asthma 8 months ago. Since then she has had a variety of different inhalers, as well as being nebulised and taking prednisolene regularly. despite this she is still hospitalised regularly and has not had a good day where she doesn't need her reliever much for months. She's taking seratide now which isn't even licensed for under four year olds and I am really concerned about the amount of drugs her little body is dealing with.
I don't think I'd mind so much if they worked but they aren't working yet for her. I'm praying for a miracle cure but I know its not gonna come.
im really sorry to hear about your daughter,it must be really hard for you to see her so poorly,as i can see the only thing you can do is talk to her doctor again and tell him how concerned you are,sorry i cant help.
take care d58 xxx
Hi my Daughter who is 5 has uncontrolled severe asthma and was diagnosed 3 years ago she is on massive amounts of medication and we have a home nebuliser but we still spend days in hospital every 4 - 5 weeks.No one seems to know what medication is best for her and i feel like I talk to the brick wall.The only advice I can give is keep perservering and question everything the doctor does and says.Right now we are locked in a battle over hospital consultants ,GPs and school but I know with a fight I am going to win for Chloes sake. I hope everything turns out ok for you and your daughter and I am with you every step of the way. If you ever want a private chat feel free to e- mail me . Regards Nikki
Thanks for the messages. I guess I'm feeling really bitter just now. Up until 8 months ago I had a healthy little girl and now she seems to be fading before my eyes. She used to run wild and now she can't even make it up the stairs. She can't walk very far without struggling and relies heavily on a pushchair. She's losing her independence when she had barely even gained it. She used to go to nursey while I went to work but I had to give up my job cos she's in and out of hospital so much and her attacks are getting more severe. She nearly died last month and I had to watch while doctors were paicking and rushing about trying to save her. This is no life for a 3 year old and it's just so unfair.
I wish I could make it better for her or even take this awful condition instead of her.
Sorry about the moaning but we've just had another really bad day and I'm dreading the nightime now cos that's when it's at its worst
hi there. my son is also 3 and is on a huge amount of meds, he was on seritide since the age of 20 months and the same things concerned me regarding liscensing and stuff but my doc explained that he had weighed up the options regarding using it as opposed to not giving him the stronger inhalor.
michael also has mobility probs and uses a mobility pushchair now which was prvided by the hospital. i do have to admit though that since starting this antibiotic that he takes 3 days a week, he has been more controlled (he isnt any less symptomatic but we are able to calm the attacks before they get as bad as before) and is now only taking 5mg pred alternate days, so were heading in the right direction. it was a huge case of trial and error and it took 3 years of adding in and increasing meds to get to the stage where he needs a neb only about once a day now.i would stay strong and trust your cons, and as long as you are kept in the loop about all the meds and the reasons for trying them. i trust my cons beyond any doubt and i also know that if i have any concerns, i can voice them without them just brushing me off. that is very important and hopefully you have that!
feel free to message me and ill be happy to chat,
ps are you recieving DLA or carers allowance since you left your job?
hi
just wanted to say thanks for your post - you must have read my mind! I've only just found this excellent forum after reading about Serevent in the Daily Mail this week - rang Asthma Uk in a blind panic after finding out that it's not licensed for under 4's and seems to be linked to a few problems in the US.
I'm in exactly the same position as you - Emily is also 3 and is on Serevent, Pulmicort, Ventolin, as well as antibiotics almost constantly and Pred. after monthly stays in hospital. I'm really worried too about the amount of drugs we're pumping into her - she is also on 3 different antihistamines daily for her allergies, as well as 2 steroid creams. No one seems to say anything about long term effects.
i'd love you to message/email me so we could chat further - or anyone else who is in the same boat please - it feels like we're on our own at times, doesn't it?
Hope to hear from you soon
My Heart goes out to you
I too have a child with chronic asthma. He was diagnosed at 5 months old. He is now on Bricanyl sub-cut, serevent, montelukast, preds, pulmicort, loratadine, nasal spray, eye drops, etc, etc, etc. We have now been told that he is on the max adult doses of every-thing and that there is no further medication available. He is 12 now and I worry too about the effects of all the meds. His consuiltant agrees that it is unknown what all the meds are doing to him, but I am well aware of the consequences if he does not have all this medication. He is hospitalised alot and has Aminoph drip, that is really scary for me, as he is always tachy cardic and has caused panic on the ward lot's of times!! He is a big child for his age due to the massive doses of steroids as a baby and youngster. He was on constant preds for 8 years!! and they stimulated his own steroid poroduction, so we have a constant battle with his weight, which in turn causes strain on his heart.
I too get down and worry sooooo much about him, but he is happy and that is very important to me now.
Take care and keep your chin up! I know it's easy to say, I'm not always jolly!
Vanessa x
Hi Ann, My son has been on huge doses of unlicensed dugs for years. He is now nearly 11 and is on Sub cut bricanyl,ventolin,oxis,pulmicort,slo phyllin,montelukast,cyclosporin,neoclarityn,domperidone,omeprazole,dexmethsone. He has taken daily oral steriods for 9 years and as a result has a suppressed adrenal function. It is only natural to worry about the long term effects and even more worrying is when the cons that you trust to care for your child says they have no idea what the outcome will be. My son refuses to be dragged down by asthma and is a realy happy kid so we have tried to follow the same attitude as him. We were fortunate to be refered to royal Brompton when my son was three, have you thought about asking for referal to specialist centre?
Julie x
Julie x
Hi Julie
Holly's consultant retired at the end of July and we're waiting on a new one to be appointed to her. We were told at her last appointment that due to the change in her meds she would be reviewed in 3 weeks. The hospital has since advised us that theres no appointments available until the end of October and she won't be reviewed till then.
Harsh as it sounds that doesn't relly bother me because I know she'll be admitted to hosp again well before then and I'll be able to speak to a consultant then.
Since she hasn't reacted well to any of the meds she's been put on we've decided to ask or insist on a referral to a specialist. She usually gets treated at crosshouse but when she's really bad she's transferred to Yorkhill and I'm sure there'll be a specialist there who could reexamine her history and her medication or even advise us further. I hope so anyway cos I'm still holding out for a miracle.
Anne
luckily i dont have a prob with specialists for michael - our cons is actually a resp peads consultant so he knows what hes talking about! ninewells is a great hosp in that way, with it being a teaching hosp, they get the good docs!!!! i know how you feel about the wait for appointments, michael used to be reveiwed every fortnight and we have ben slowly increasing that time - we went today and we decided to risk 7 weeks!!!we have open access to the ward though so if we ever have any concerns, we can nip in there or if its less urgent our resp nurse will always find space for him at the next clinic, for example if michael was unwell next week, he would be squeezed in next fridays clinic!! im so glad i have such a helpful team of staff, its such a weight off my mind!
in other news ... michael had another anaphylactic shock on tuesday - had to give him his epepen cos he was completely unresponsive. it worked though and after s few hours on the ward, we were able to go home. hes reacting like mad just now - we were on the bus on the way home from clinic and a dog got on (un noriced by me!) michael suddenly satrted screaming and shouting that his tummy hurt, that he felt sick and that he wanted a neb. i looked at his belly and it was bright red and lumpy - he then started coughting so i gave him piriton, calpol and a multidose (couldnt neb - no plugs!!!) we rushed off the bus (thats when i notice the dog!!) and within 5 mins he was fine. he still has ared belly but his breathing is better now which is the most important thing!!!
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