I'm new to this site, Advice Please, very worried

Hello All, I'm new to this site. I've joined out of concern for my Son.

He is 3 1/2 years old and has been in and out of hospital since he had bronchilitus at 3 weeks old. (unusual because he's a summmer baby so the health proffessionals tell me!)

His latest hospital stay ended up in resucistation and then intensive care for 3 days.

At present he has been on Prednisolone 35mg daily for over a month, combined with montelukast granules, Slo phyllin (slow release version of aminophylline which he has on drip form in hospital) and Seretide inhalers. Plus nebulising at home every 3 hours. The consultant put him on this meds regime but it is only meant to be this intensive for 7 days at a time when he has a cold (which nearly always trigger asthma attacks) He has been on it without a break for over a month. THe GP is very good but I would like to get further advice from the consultant who we see at the end of the month and the Gp is unwilling to see if we can get an appointment sooner. But is in contact with her via the phone. This regime is keeping him out of hospital but although he is not getting any worse he is not getting any better.

I am obviously concerned about the side affects for all this meds - some of them being obvious as he turns from my gorgeous little boy into a monster on all the drugs - he's bouncing off the walls for about an hour after his nebs which then makes him wheezy again. A viscious circle.

I was wondering if anybody has a child on a similar regime and what they feel about it. Also is there anything I can do to help the 'manic' ness which comes from the drugs?

My other worry which is a new occurance is that my son has started to panic when he gets even more wheezy than usual, which turns into coughing attacks which obviously doesn't help his asthma and I was wondering what I can do to calm him down and reassure him.

Sorry for the long message. I am exhausted as he is needing treatment through the night and day and I just want him to be well. Or at least his asthma being less brittle.

If you've got this far, thankyou for reading and I will appreciate your advice!

Helen

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hi there and welcome to auk.

Im really sorry your having such a rough time with your son's asthma. I really cant give you any advice other than if you are concerned stick with asking the gp to get you an earlier appointment with the consultant you do need their help land support!

As for things in general its tricky with side effects they can make even us adults do wierd things. Stick with it tho and obviously if you feel its getting too much do go to a and e. In order to keep him calm just reassure him that you are there and the medicines are helping him. Sorry i cant help you more but do take care. Thinking of you and the little one. Lotsa lv kat Xx

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hi and welcome

my son also has brittle asthma and has a home nebuliser which he uses every four hours day and night he also on and off pred like its going out of fashion. I dont know if this will help but when william was on the montelukast he has manic and like your little one became a monster, when i saw the consultant i said that i was lead to belive that this drug was meant to prevent his attacks and as he was still having as many attacks as normal was there any point putting him in to a postion where he was uncontrolable with his behavour and rhey agreed to take him off. So what i am trying to say is unless this drug is making a real difference with your sons asthma ask if you can have a break from it to see if there is any improvment it will take up to six weeks. as for appointment and getting seen quicker phone the hospital direct and speak to the consultants receptionist they normally really good if you say you really struggling about getting you seen quicker.

I hope this helps, if i can help anymore then message me.

clare. x

P.S i hope your little one gets sorted quick.

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I'm coming in late to this one as only just joined. Wanted to say that my daughter, 3 and a half, is also on lots of meds for brittle asthma and I've noticed changes in behaviour that make it harder to look after her, especially with the nights being as they are. I have found that doing massage on her really helps calm her down. I got advice and bought sweet almond oil with lavender drops. It took a while for her to get into it but now she loves it. Maybe worth a try? Ity is extremely hard as a parent to accept the drugs, even when they are helping the asthma.

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hi, my name is kirsty and my son cameron who is 8 also has very brittle asthma. cameron also had aminophylline for a while and i found it was this which made him manic, and not the other medication! he has singulair, and budesonide nebules, and serevent, and also antihistimines, and he also spends alot of time in hospital, and is more often than not on pred too. the aminophyline is a bhronco dilator and opens up the respiratory tract, but it also raises the heart beat, which could be what is causing the problems? as for the consultant i would also recomend ringing his secretary as they are normally very good. my consultant has reffered us to a bigger hospital now, so maybe pushing for a refferal could help. i hope yousr son feels better soon, its so hard to see them so poorly, and feel like you cant help them.

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Thankyou

Thankyou for everyone's replies. Sorry I haven't replied until now. Toby's health continues to be very up and down. We see the consultant again next Tuesday. or now, We have managed to reduce the steroids but they are keeping him on all the other drugs for now. They want to try and up his nebs for now to try and keep him off the higher dose steroids. They seem to think these are more harmful than the amonopholyn and the montelukast although I'm not convinced! I'll keep you posting on how we get on next week again!

Thankyou for you help.

Helen x