Don't know what to do

It's been a while since I posted here as Thomas has had a fairly stable summer. Since the end of august we are back struggling despite his usual meds of seretide 125 2 puffs twice a day, nedocromil, flixonase and salbutamol. He had a course of steroids about 5 weeks ago and is now on another after an admission last week. We are back frequently using ventolin. I don't know who to turn to for support or advice. The doctors on the ward asked for his appointment to be bought forwards but his consultants secretary refused saying they just are fully booked. My GP won't change his meds because of his age (he's only 3). It's so frustrating for me to see him like this. Surely there must be a better solution I hate seeing him like this.

20 Replies

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  • Hi Jenny

    I am new to this. I only realised this website existed last night. I posted today but nobody has replied yet. Would just really love to get chatting to someone who understood the questions and issues I have in relation to my sons asthma. Sometimes I feel in a lonely place with it, especially when in hospital at four o'clock in the morning. I see your son is three, mine is now seven and was diagnosed officially at two. Would love to hear from you, maybe we could offer advice and tips to one another lol

    Danielle

  • Hi

    I have just read your post but I don't tend to come on here much anymore. I will attempt to answer some of the questions but am not medically trained this is just from my experience and limited knowledge.

    Most peoples oxygen levels drop when they are asleep do you know what his were when he was awake? Also was it just a drop or was it around this level frequently? From memory our hospital anything below 92% and they will have you on oxygen, so 85% isn't great. On his last admission after nebulisers it was still varying from 89-94% while he was sleeping.

    With regards to techniques it's a bit different for me because Thomas is only 3 but I tend to look out for intercostal recessions (pulling in between ribs) and tracheal tug (pulling in around the neck).

    It is scary having an asthmatic child you never know what is coming next. For Thomas the weather is a massive factor in his problems along with colds and viruses.

    Jenny x

  • Thanks for replying Jenny

    He was sleeping when it dropped to 85 awake it was 91

    He always complains of a sore tummy at the onset of an attack. Does your son vommit as it takes hold of him?

    Do you find that medical staff are always attentitive and understanding?

    I am so sorry sorry that you are having to manage it with a three year old. I would not like to go back there

  • To be honest usually I don't have any problems but he is well known at A&E due to frequent admissions. His latest admission last week is the first time I have really had a problems but that was down to an arrogant doctor who hadnt bothered to read his history.

    He doesn't really complain or stomach ache and isn't sick either. He is usually still running round trying to play while in severe respiratory distress and you can only tell he is ill by checking for his chest pulling in.

    I am just disappointed that despite all his medications he is still getting ill. I hoped this winter may be different but doesn't look like it's going to be. I tried to get his consultants appointment bought forward from November as wanted to discuss his meds being changed but they can't as fully booked.

  • hi,

    ive only just started on this forum.

    our 8 yr old used to complain of tummyach and our consultant and nurse said its when their struggling to breath they work their tummy muscles. I suppose its a bit like if we had done sits and we hurt the next day. we have learnt to say does it hurt up here and point to the breastbone or hurt here and point to his tummy. so we know if he points to his tummy it hurts to breath, I might add that's in our sons case so I do not want you to assume its the same for every child. the asthma nurse help line on here are good so you could always try them.

    our son has open access to the childrens ward as he has had so many admissions. he was diagnosed at 17 months. he is just getting to the stage where he understands he has something wrong with his chest but is struggling to understand why he cant do what he wants when he wants. its quite a learning cureve for all concerned. he is very good about taking a lot of medication each day, where as when he was younger he used to fight us all the time when giving meds. im very proud of how he takes his meds as its been an uphill battle. he is on 3 different puffers a day, 2 hrly ventolin, 2 capsules, steroid tablets alternate days all yr round, anti histamines every day all year round and anti biotics alternate days all yr round, but he still has a smile on his face.

    we are now very lucky as we have a wonderful consultant and respiratory nurse, but in the beginning it was 2 years of being scared and no one explaining anything to us.All I can say is learn as much as you can about asthma - theres so many different variants from mild to really bad. our sons is really bad and he has brittle asthma and silent chest.

    once you know what you are dealing with you will gain the confidence to speak to the doctors and ask questions.

    he is your son and there's things that you will notice that might seem insignificant but if you tell the dr they might say its important.

    our son used to bend over his pushchair or lie on the floor when he couldn't get his breath when he was a toddler, and the nurse explained that he was trying to ease his breathing by bending over and when he led on the floor - especially as keeping still was not his thing - she said he was regrouping and getting his breath. at 5 he would sometimes ask to be picke dup if we were out walking and I once said to his nurse he is too big to be picked up now and she asked did he want picking up for a long time or short time, I replied usually about a minute then he gets down again and hse said he just needed that bit of help as he was getting breathless. looking back it wasn't rocket science.

    we are now in a new phase and iim having to learn all over again what he feels and why he is reacting the way he is. in summer instead of joining in at the park with his friends he walked off after 10 mins , he couldn't keep up with the other kids playing tig and he got upset. he now has to learn that he might have to take his puffer and sit for a few mins then he can play again.

    as long as we support our kids they will cope and please remember that you are not alone, there's lots of people on here in a similar situation.

  • Gosh Kelly reading what you have put so much of it sounds familiar.

    My son is 3.5 and was particularly taken with what you said about the asking to be picked up. For my son partially it is down to his hyper mobility but sometimes like you say he wants to be picked up for a minute or so and it makes so much sense that he could be doing it to get his breath back. Even now he is getting a bit heavy for me to be carrying him but we are carrying on with a buggy for as long as poss.

    Did it take you long to get open access? We have asked about this but they don't do this at our local hospital apparently?

  • Kelly,

    My daughter too asks to be picked up. She is nearly 5. She has always been active but very often sits for a few mins and the gets up and goes again. It was her community nurse who pointed out that she was breathless when doing this and it's her way of getting her breath back again. She still does it now.

    We still have a pushchair for her but try hard not to rely on it. She doesn't want to stand out. We let her walk at her pace and then stop/pick her up as she needs.

    At the moment she needs ventolin after a short while when active but that's fine, she has it and then carries on once its taken effect.

    As for the drugs, it sounds like she is on the same as your son. 4 inhalers, anti hists then prednisalone daily all year round and Antibs every other day all year round. We saline neb her daily too along with physio. All these things are normal for her and I'm so proud of the way she handles it.

    I agree, these kids are amazing and as long as we are by their side, go at their pace and keep them smiling, they will go a long way.

    Emily. X

  • Emily what inhalers is your daughter on? I am struggling to get Thomas's meds changed because of his age but just don't feel they are right for him and am sure there must be alternatives?

  • At the moment she is on: flixotide, serevent, atrovent and ventolin. She has montelukast and loratadine. Pred maintenance dose, antibiotics, saline nebs and physio.

    It ha changed lots since she was given her first inhaler at 6mths. Steroids, She has gone through Clenil, And seretide inhalers and budesonide (in nebule form).

    I'd say its only been the last 8months that we have has control, only a few infections, instead of 6-8weekly hosp admissions.

    Fingers crossed it continues.

  • Ah yey finally someone with a child on atrovent. What do you think of it, do you think it makes a difference?

    If I am having to wait for this appointment I want to go fully prepared I am not being fobbed off anymore!

  • To be honest I don't think it does that much. She went on it when she was tiny and it was useless for her. She then came off it. Then about 2yrs ago her cons put her on everything in one hit cos she was quite poorly and it seemed to do the trick. But I'm not sure what drug in the combination was responsible for her doing well or whether it was the combo.

    I hope you have a good app. Xx

  • Hi again,

    im not sure how to work this forum so I hope that you get my reply.

    Neil was just over 3 trs old when we got open access. once we changed consultants we got far better treatment.

    he is on so much medication each day. unfortunately our consultant doesn't agree with children having nebs at home. their argument is that it can lull you into a false sense of security and that children can quickly deteriorate after having a neb. Neil has 12 back to back nebs on his previous hospital admission. I have to say I would feel much safer if we had a nebuliser at home for emergencies as it seems ages for the ambulance to arrive when theyre struggling to breath. Neil also has silent chest.

    he has recently had a bloody test as for years the hospital have been on about this new injection that was previously for aged 12 and over and has now been reduced to aged 6 yrs and over. she said he ws top of her list to be sent to another hospital for this drug. unfortunately the blood tests came back that his allergy levels are extremely high so he doesn't qualify for the new drug. we were devastated as we had hoped for so long that this would help him. so last Saturday we cried a few teasr then realised we are no worse off than we were before the test results, its just that we will have to wait and see if some other new meds trials come up with something suitable for children with high allergy .

    fingers crossed as theres new drugs being developed every day.

  • That's why we are not allowed a nebuliser at home as well. On most admissions Thomas has had a silent chest and can very quickly deteriorate even when on nebs so they said it's too risky. Thomas doesn't have allergies he has had RAST tests and his IgE levels were pretty normal. Although not as severe as some of your children it is so frustrating and frightening for us that he isn't under better control.

  • Hi,

    The neb we have isn't for salbutamol, it's for saline. We have also used it for steroids too. Our GP gave us a prescription for salbutamol nebules but we haven't ever used them due to them not being oxygen driven and like you say, there's a huge risk when nebbing a child with salbutamol in an emergency situation at home. We always get help when she is at that stage.

    Kelly, I feel for you with regards the xolair injection, it's so frustrating isn't it :(

    Jenny, maddie doesn't have allergies either. I hope you get some answers too.

    Emily x

  • Hi Jenny & Emily,

    I would just like to say how nice it is to be able to communicate with people in a similar situation.

    all to often people I come across think that asthma just requires a few puff of ventolin before PE or going out in the cold. Brittle asthma or as some drs still refer to it as difficult to control asthma is a minefield to understand and to live with.

    our respiratory nurse gave me a book about asthma for health professionals, and families of sufferers it was amazing to read all about every aspect of asthma and in some ways information gave me confidence as I understood it much better. Neils ige tests are very high despite all his meds. I did ask his consultant last year when he had been poorly at school hols club and I needed to get him checked out at the hospital, why can you not get Neil more stable and symptom free despite all these meds and she looked at me and replied Kelly without the meds that I give him Neil would either never leave the hospital ward or he would be dead. I suddenly felt very grateful for the meds and for what symptoms he continues to have as at least he is home and he is alive.

  • My OH is still getting used to how bad asthma can be he was one of those naive people who think all you need is a blue inhaler. Some friends and family still look at me as if I am mad when I say he has been in hospital.

    Thomas hasn't been diagnosed with brittle asthma but it is severe difficult to control asthma. It can be so unpredictable just when you think things are going well they can nose dive within such a short time.

    That book you have been given sounds good, what it the title I might ask our resp nurse about it?

  • Hi Jenny,

    im not sure but I think brittle asthma and difficult to treat asthma might be the same. our Neil goes down with little or no warning, unlike my friends child who has normal asthma and might be unwell for a few days before. we are lucky if we get 30 seconds warning sometimes.

    the book is called Asthma: The at Your Fingertips Guide(Paperback)by Mark Levy, Tricia Wellerits on amazon and its £16-99. the book was so good and informative that I bought my own copy. its got a red cover and ive just checked , its still available at amazon.

    its good cos you can keep going back to it an reference things.

  • My son is 8 and the last 4 - 5 month has had really bad attacks that are getting worse and not responding to treatment.

    He has and steroid tablets frequently the last lot was a week ago and now back on them again, he was recently put on a stronger inhaler that doesn't help.

    He as started crying in pain with his ribs and complains of feeling sick every day.

    I don't know what else to do Im at gp all time with him.

  • Right I am back on a level. What meds is your son on?

  • Hi Jenny

    I have just joined this forum and wanted to share my experiences with asthma. Sorry to hear your plight, I have been through it all also with my 10-year old son, who has asthma for around 5 years now. But fortunately a new doctor at our surgery has been very helpful in advising us on a wide range of preventative measures to help control asthma in addition to ventolin and preventer inhalers. He has taken the time with us, unlike other doctors that are often too much in a hurry (but then they are pressurized to process patients as quickly as possible by all the cutbacks - its not totally their fault). We have also found some books on asthma helpful - such as 'Asthma: At Your Fingertips Guide' mentioned above or 'Asthma Free Naturally'. Please check these out - they are a small price to pay to get as much info as possible, they have helped us greatly - pm rolodex hot mail co uk chat if you like

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