My poorly boy

[HaydiesMum]

Hi all, think I am after a bit of moral support and any advice from parents of teens really or maybe just needing to offload.

My nearly 13 year old son has been asthmatic pretty much all his life, had taken him the the GP several times before he had an analphylactic allergic reaction at 9 months old which got him into consultant led care. I think he was admitted to hospital around 50 times over the following 2 years and for a while they thought CF was a possibility as we struggled to get things under control.

By the time he was 4, things seemed to be stabalising, he was on daily combined ICS and LABA and montelukast and the admissions started to tail off. WE spent the next couple of years under consultant led care while doses were changed and things monitored but when he was about 8 we were transferred back out to primary led care and although a few attacks a year required trips to hospital we seemed to be managing relatively well.

th last couple of years have gone back downhill with us really struggling to keep on top of things. February 2017 he had a horrible flare up which he was on oral steroids for but not responding to as he normally would, We arrived at A&E and his SPO2 was low 80's even after 48 hours on oral steroids and all his normal meds. It was an awful couple of days on constant oxygen alongside steroids etc and they diagnosed pneumonia and discharged him when what in hindsight I think was still a really poorly condition. since then we have struggled to get things under controll.

He had so much time off school this past winter due to his chest and at the beginning of the year they upped his meds again and referred back to the specialist.

He was taken off his combination inhaler and is now on Flixotide 250 (2 puffs twice a day), Formotorol (12mg twice daily) and montelukast 10. We were back to his specialist yesterday and his lung function test showed a small improvement but still "classic of chronic, poorly controlled asthma". He has all the normal allergies (pet hair, tree & grass pollen, dust mite) so advised to go back to daily antihistamine as well.

He is really good about taking his preventative meds but think his age is making him conscious of his 'condition' and feel that sometimes he holds off on taking his reliever when he needs it - not sure if this is because he is just too busy being a 12 year old boy or if he doesn't like his peers to him 'needing it'?? It really worries me as I can sometimes see and hear how much he is struggling yet resisting using his medication.

His specialist is amazing and had 'words' with him about how important it is to keep on top of things but worry that when I am not there he is putting himself at unnecessary risk, allowing his breathing to get worse before doing something about it.

Really hope that the slight improvement is his lung function test is the start of a trend but aware that his asthma is normally at it's best at this time of year so not holding my breath for this winter just yet!

Know that if things don't get under control it's going to be daily oral steroids and not sure how I feel about that!

Sorry, think this was an offload but any advice/words of wisdom gratefully received.

[swiftjo]

Sounds tough, I have a 9 year old who is starting to become self conscious about taking his inhaler and he rarely uses it. I can’t offer any advice but wanted to show support.

[Hidden]

I'm sorry I have no words of reassurance or advice, just wanted to offer you my support and hope your son begins to improve. I think everyone with breathing problems have suffered during the heatwave. XXX

[emmasue]

I feel for you both. I have had asthma all my life and was in and out of A&E. Mine is down to severe allergies as well. At least antihistamines are a bit better. When I was a kid, they made me so drowsy so on those lovely spring/summer days, I would miss out because I was so sleepy with the Benedryl. I do admit that I hated using my inhaler in front of friends. It felt like a week was. I would always wait until I was on my own. I had no support (except family) but it would have helped to meet others with asthma my age so we could talk about our shared experience. It would also help for school to have an assembly, not pointing anyone out, but just to explain asthma and how it affects people, maybe an older teen our young adult with asthma leading it. Also, it would help if the school was supportive. I nearly had to retake the 8th grade (I grew up in America) because I was ill so much that year. I remember getting work sent home in the 9th grade because I had been in hospital for a week. It is hard to get into it again but it is good to encourage a bit at a time when recovering from a bad bout.

Anyway, good luck to you both. I hope things improve. Treatments are so much better than when I was little. There are more options to try. Finally, before I go, don't let anyone tell him, "You'll outgrow the asthma." Everyone told me that, especially since my mother did outgrow hers. Unfortunately, I didn't and still suffer from uncontrolled asthma today. It's a pain because just when I feel things are going well, I get sick again. Anyway, all the best. 😊💜

[Chip_y2kuk]

I was 14 once... I stopped taking all my asthma medication because I "didn't need it"...I didn't want to need something to get on with life

Now I'm 32 and I'm on more now than I was then... higher doses and more medication....and I still don't like taking ventolin (especially in public)... I've actually ran off to a toilet when I had a tight chest so I could take my inhaler and I'm an adult

I've got a two year old now and she is also asthmatic and sometimes we have a fight with her to take her steroid inhaler... but she understands that she needs it to stay well.... just doesn't like it because "It's soo boring" (that's from a two year old)

[strongmouse]

Teenage years can be difficult I can imagine that he might find it awkard needing to take an inhaler medication in front of his peers. I first became asthmatic as an adult and found ot embarrassing at first needing to take an inhaler in front of other people! It sounds like you are a caring and supportive mum.

I wonder if talking to the teacher about dealing with long term illness for all the class might be helpful? There may well be other children with asthma or allergies in your son's class. I have heard of teachers inviting people to talk about living with a long term illness so that it becomes more "normalised". If several children in your son's class have long term issues it could be helpful and will be good for the others to understand too.

When my son was bullied the teacher had no idea how to deal with it but I found information from an organisation and that helped them to manage it better and thus my son. Teenagers often push away from parents, so enlist the help of others. Your son's specialist sounds as though he was well aware of what your son needed!

I expect your son is not alone, he just feels he is. Teenagers become very self aware and don't quite know how to manage those mixed emotions and don't mind taking risks. Hope things get easier for you and your son.

[Hidden]

Sounds so tough but just remember you are doing the best you can and you cant do more than that.

My asthma is not as bad as your sons but as a teenager I would have very short but acute attacks lasting 2 or 3 days.

Sometimes I would take too much ventolin and other times not enough or be out and about and wouldn't have my inhaler and would have to just get through the attack. I always managed and knew how my body responded and how far I could push it.

Hope he improves.

[ChrissieMons]

You might be able to persuade your school to have a speaker from asthma UK at a school assembly or perhaps some meeting of the children in your son's year. I think - having suffered a good deal as a child - other children and staff need to know what it's like - that some days you're fine and the next you are very poorly, that the inhaler is essential and so on. He won't be the only child in school with asthma, and in helping the school to understand, you will help all those other children as well.

[eachy]

There’s asthma and there’s asthma as we all know, is there any way of finding someone else with his level of asthma in his age group that might give him peer support or just a sounding board cause let’s face it, he’s coming to an age where with the best will in the world as mothers we “know nothing”....just a thought?

[HaydiesMum]

Thank you all so much for your replies! You have given me some great ideas as well done moral support. Think in September I definitely need to have some more conversation with the school.

Like you say he must have peers with asthma like his just that I haven't found them and think that could be really useful for him.

Thanks again, really appreciate it x

[Livre]

So sorry for you and your son. Heartbreaking. The corticosteroids have terrible side effects including reduced height in children and suppression of adrenal cortex, most particularly knocks back DHEA.

I have been on corticosteroid puffer irregularly for 10 years and 1 or 2 or more times a day for the last year. I had a dhea test and read at 0.1 instead of say 12.0 which accounted for increased lung irritability after EVERY puff, ie exacerbates asthma, loss of head hair, skin thinning, flesh wasting, rasping voice. Insomnia instant ageing.

Your boy needs DHEA to maintain his body. Or to take pregnenolone as a precursor.

It builds body bone skin flesh etc. I now take pregnenolone 50 mg daily which is a precursor to dhea progesterone etc, and about 6 mg of dhea.

I am on day three of Intal having at last seen a specialist who is sane. My asthma started 10 years ago when I was post menapause, and given corticosteroids so got caught. I have had to use ventolin a few times but read that Intal takes a while to get going fully. It is to be taken a few times a day. After 3 days I feel better than I have for a long time.

The great respiratory allergy specialist said try Intal because it’s an oldie and goodie. That if my asthma is primarily allergic then it knocks back mast cells so great. I also put a drop of rosemary oil in a half mug of hot water and breathed in the fumes, very nice. Then drank it. That calms the eosinophils