Advice needed!!!! Things have changed for my son

[Sammibabesx]

Long story but need advice.

My son is 5. He's on seretide 125 (2 puffs twice a day), montelukast everynight, azithromycin three days a week, ceterizine 5ml (twice a day) ,piriton when needed, salbutamol when needed, fluticasone steroid nasal spray (twice a day).

He's been diagnosed with modarate-severe difficult to control atopic asthma after having over 45 admissions to hospital. He had a Bronchoscopy in December and a CT scan at the start of this year that showed things that were in line with this diagnosis. Also his bronchoiles in his left lung are floppy.

He's allergic to animal dander, dustmites, moulds, pollen,milk,egg, soya and gets cold urticaria. Suffers from wide spread eczema as well.

Anyway, we haven't been admitted into hospital with an attack since end of October last year (yay!) So we've had a great winter.

However, the past three weeks he's been really poorly. The first week he had that nasty virus that lasted about 6 days, raging high temperatures, slept for about four of the days, had a cough ...but his chest was clear, no wheeze.

The second week it did move onto his chest because doctor heard crackles and his oxygen was 93/94 but would rise after ever cough and he needed antibiotics but from an asthma point of view he done brilliant!!

Then this week...I was called to pick him up from school yesterday as he started flagging in the afternoon. He was very pale and coughing a lot. I got him home where I took his temp and it was 40.4. he was working a little bit hard to breathe but this was because of his temp and when I got his temp down he was okay. His oxygen (we have a monitor at home) was ranging between 93-95 which is satisfactory for him. Whilst he was coughing, I didn't think it had triggered his asthma.

So a couple of questions....

1) would you say he's starting to grow out of his asthma? Or is it a case of we have control over it?

2) does an asthma attack have to have low oxygen and a wheeze??? He's coughing a lot! And there's a slight trachael tug but not major. His oxygen is good though.

He's not usually a wheezer. Well you can't usually hear him from the outside but you can see him clearly struggling.

But this is new to.me now, I'm so used to seeing him plummet fast and because he's not plummeting I'm confused and I don't know where to stand. Because when he's severely poorly I know to ring 999. But when he's like this, I just sit and watch and wait for the decline but it doesn't happen.

[EmmaF91 Community Ambassador]

Hi

Sorry to hear what he (and you) have been through!

Personally I think you’ve probably gained better control of his asthma now so you’re seeing less issues and his drop is less dramatic!

Normally oxygen sats only drop in really bad attacks. Especially with more severe/uncontrolled asthmatics, as we learn to compensate to keep our sats levels. If he’s coughing a lot and not looking/feeling well, and he’s not an obvious wheeze anyway then I’d suggest getting him more help now (either OOH or at the hospital). If you catch it early you can prevent a downward spiral! You can take him in yourself rather than by ambulance

Good luck and hope he feels better soon xxx

[Sammibabesx in reply to EmmaF91]

This is what I mean, like I'm so used to seeing him having a really severe attacks to the point where his oxygen drops to the low 80's and we're in hospital for days. So like these occasions where his oxygen is okay, I'm like "what the hell is this?" Like I don't want to over react and rush him into hospital . But like you say, at the same time, I don't want things spiralling so I'll take him to the out of hours. It just stresses me sometimes because I'll give him his salbutamol, take him to the doctors and they'll be like "his chest is clear" and I'm like well yeah, it will be! He's had loads of salbutamol. So they'll not give him predisalone or anything. I've noticed though, even though his oxygen levels are satisfactory, when he has salbutamol , these numbers will go up. He's so much better this morning. Last night he was floppy and lethargic and was difficult to rouse but he isn't like that this morning. His temp is even high now xx

[EmmaF91 Community Ambassador in reply to Sammibabesx]

I’d suggest going to a&e/urgent care. He’ll be seen quicker and most likely get better treatment. 9x/10 OOH either refer to hosp or under treat if he’s not ‘typical’ (which from the sounds of it he may not be).

They’ll prefer to see him now than waiting for him to really drop!

[Sammibabesx in reply to EmmaF91]

He's really not the typical asthmatic. I've had paediatric consultants send us home from the hospital before saying he's okay and he's been blue lighted back in an hour later critically ill. I will take him in, thank you xxx

[EmmaF91 Community Ambassador in reply to Sammibabesx]

Good luck xxx

[Shellc]

I would say you have it under control , maybe the azithromycinis keeping it that way which is what it supposed to do , only u know your son and I would go with your instinct , if it takes the worry away take him to get checked xx

[EmmaF91 Community Ambassador]

How did he (and you) get on? X

[Sammibabesx in reply to EmmaF91]

Chest infection , but asthma wise he's pretty good. Was no wheeze. Which I knew anyway! It sounds as if the other night was an asthma attack though that we did manage at home. Theyve said I should ring his consultant Monday so they can review him or at least the asthma nurse at the hospital were under can review him. Do lung function etc. Xx thank you for asking xx

[EmmaF91 Community Ambassador in reply to Sammibabesx]

Glad to hear that you’ve had some good advice from the staff there! I’m glad his asthma appears to be doing ok, and hope it continues, but keep an eye out for any sudden changes (I know you will anyway 😉). Don’t be scare to go back if things get worse again

Hope he feels better soon and that his asthma team will be able to see home quickly. Xxx

[Hidden]

I am hoping for some good news as it sounds like you have been through hell trying to get answers

[Sammibabesx in reply to Hidden]

Chest infection. But asthma wise he's okay which is a relief. Gonna ring his consultant Monday to review him though, do lung function tests etc XX

It's been a long journey but now things seem to be settling I can't quite get my head round seeing him not severely poorly when he has an attack if that makes sense. Because I am so used to see him in a critical condition and it's only been recently that's he's not hit critical every time and it totally throws me. Because as bad as it sounds...at least at critical I KNOW what he needs. But when he's not, I'm always second guessing myself. Hes hard work xxx

[Yellow75]

I would keep an eye on cough and if gets temperature. Cough can be asthma you don't have to have wheeze. May be try some of reliever medication to see if cough subsides.

[SazSeb]

Wow, I can so relate to what you have written, my son is also 5 and has had multiple admissions (over 40 in the last 3 years). Your reduction in admissions may be because you cope with more at home and have learned exactly his warning signs and when is right to take him in. I know that I sometimes keep my son at home when "normal asthmatic" children would be on the ward.

If my son is just wheezing (his daily symptoms) I keep him at home, if he has tracheal tug or ressession I will only take him in if he hasn't responded to salbutamol.

If his sats drop below 88% we go in and his "red flag" is if he gets the persistent dry croupy sounding asthma cough ans absence of wheeze we get an ambulance as this is a sign that he is very tight, usually hardly moving any air and will need back to back nebs /iv mag.

My son can also present in different ways when he is having an asthma attack, requiring different levels of intervention.

It's confusing being an asthma mum.

[Sammibabesx in reply to SazSeb]

Gosh you sound like you're in the same position as us. As a general rule if he drops below sats wise 90 we will ring an ambulance because usually at that stage he is clearly struggling. The past few days have been touch and go because he's been fine for a few hours and turning a corner but then a temperature will have spiked from nowhere and we start all over again with increased work of breathing but reasonable sats. It's really tough to guage sometimes isn't it. Sometimes when I've taken him in, there's been no wheeze but very little air entry! And they've started him straight on back to back Nebs and IV (same as your little one.) I've kept him off school today as he's still not 100% but I know the attendance officer will be on my back no doubt. Also he's spread his germs to me and I feel pretty Damn rough. Just pleased I don't have asthma to content with as well. Really feel for the kids suffering so much xx

[SazSeb in reply to Sammibabesx]

I bet you are like me, bag packed if showing symptoms and always on high alert.

Are you a member of any of the fb support groups? I find them really helpful as well as this site

My son is on seritide 50, ciclesonide 160, montilucast, dexamethosone (as he can't tolerate pred), citirizine and salbutamol daily. He also has open access onto the ward, but we always have to go through a&e first.