brittle asthma medication in school's help please

[lisa1cares]

Hello all
my daughter has rare chronic brittle asthma and is on strong medication for it, the last couple of day's the school has moved her ventolin medication into the head teachers office so it is no longer in the classroom where she has direct access to it. They state that this is due to east Lancashire education guidelines ?? I understand most medication needs storing away from children but this is a must have to hand life saving medication and if she was older (she is 7) then it would be carried on her person but as it is she has to use a volumatic and thus can't carry a massive plastic thing around with her. So am I wrong in thinking that it should be in the classroom with her and not the office ??? most schools policy is that it should be with the child at all times or very close by so why are they all of a sudden changing the policy at my daughters school?? who do I speak to about the guidelines in school's as the head teacher just gives me a load of its the guidelines we have to follow them talk. thank you for any advice :)

My daughter is Reception and has it in her class with her. It's in a cupboard so she has to ask a teacher for it, it's not where they can all get to it. She also has Movicol (laxatives) in her classroom that she has in a drink. I'm having problems getting it into her because they've never seen her have an attack, she doesn't, she goes tired and then flops which is when you realise she's breathing at 60bpm and using every muscle in her chest and stomach to breathe. She tends to get it at playtime when it's cold...

It's no use to them in the head teacher's office if they have an asthma attack!

thank you confuddled yes that is my thoughts, I had to go up to school yesterday to pick her up because she was having an attack and even the head master said today when I was picking my other children up that he thought he was going to have to call an ambulance to her. Her inhaler had broke some how it was half full but not working grrrrr most people don't understand that asthma isn't always about a wheeze or a cough in fact its worse when there is no wheeze because that means there is no air getting into their lungs sigh They also do not get that they can give her as much ventolin as is needed its very unlikely that she will over dose on it. They did make me a little mad because I was out for about an hour in the morning taking my son's heart monitor back to the hospital when they first phoned and they did not try again to phone me until 3 hours later. I think I am going to have to phone her respiratory nurse in the morning get her to go in and talk with them as they clearly are not getting how vital it is to have her medication near by and I am going to get a new mobile so they can contact me all the time from now on.

I had the education welfare come see me when she was in reception because her attendance was so bad. This nasty women walked in and was of the opinion that it was me keeping her home lmao so glad the school nurse as there and she soon changed her tune when she found out it was because my daughter was in hospital all the time and not because I was keeping her home for a laugh. The problem is that when a child has direct access to the children's unit the education are not informed when they go into hospital had she gone through A&E they would get a letter telling them she had been in hospital. Oh well there is me on rant about school but I have had enough of this primary school to last me a life time and not just with my daughter that has the brittle asthma. thanks for getting back to me :)

I've been getting worried about mine's attendance. She's now got two perforated ear drums after several ear infections, tonsillitis (her tonsils almost touch) chest infections...

Looking at her pictures at parents evening she has red/purple rings around her eyes in every picture and I would be happy to bet she hasn't had her inhaler in any of the pictures! I want to shake them and tell them those rings are not because she's working hard it's because her body isn't getting oxygen!!! We get her back from school and she sleeps on the back seat, we have to fight to keep her awake. I was worried when she went to school because she did Mon/ Wed/ Fri at nursery and Tue/ Thur/ Sat she'd sleep solid. How do you convince people that she's not tired she's having an asthma attack? Especially when the teachers have an bad asthmatic child...

Get the school nurse involved ASAP, she will advise the school specifically on where your daughter's medication should be kept and why.

Goblin I am going to get her respiratory nurse to go into school she will get it all sorted out for me :) I just want to make sure I am in the right before I get others involved in it thank you for your advice :)

confuddled does she have a respiratory nurse? if not see the consultant at the hospital and tell them you want one for her to help you with school stuff, plus they can do home visits and if you are worried about anything they are just on the other end of phone and come see you and they go into school and talk to the school about it. Schools can be so stupid at times, the only way to teach them is to get the professionals in to make them listen. I have no idea why but for some reason they just don't listen to parents and think we are over reacting. My daughter had to have her tonsils out because they was bigger then normal and caused problems when she was having breathing problems. It took me 2 years to convince her consultant that it would make a difference to have her tonsils out and I have to say it has made a massive difference to her. my daughters grand-mother had the same problem but not as bad as my daughter and when she had her tonsils out it helped a lot which is where I got the idea from. Also when they get to about age 6 there is a lot more medications they can use as under 6 there is not as many they are allowed to use on children. She also used to get repeat pneumonia. they have tested her 3 times for cystic fibrosis because she was that unwell and was very very under weight. We never had any problems with nursery but I have to say thats because they listened and understood more what to do. Do you have an asthma action plan in school ? it has a break down of how to deal with the asthma and what an attack is (not just wheeze cough). It does get easier as they get older, as my daughter understands more and can ask for her medication where as when she was very young she did't have a clue when she was having an attack. She would also fall asleep a lot, I the falling asleep was a big red flag for I am really not good and need the hospital. I just told the school if she falls asleep phone me so I can come check but I know thats not possible for everyone as I am only 2 mins walking from our school. her meds are seretide, singulair, ventolin, pregnisalone (steroids) and long term anti-biotics. My daughter gets disability living allowance now and has a blue badge for parking plus direct access to children's unit. excuse spelling I am a little tired from being awake nearly 72 hours watching over her. I sometimes think they should change the name of brittle asthma to something that sounds different to do with the lungs simply because its far far far worse then just the average wheeze and cough most get with asthma. She has had a collapsed lung and has been very close to needing to go onto a ventilator in ICU a few times. the first year of school she was in hospital at least once every few weeks, we got to a point where she only did half day's at school so she was still learning something but it was not wiping her out as much :) and they also considered sending her to a special school for medical needs about 15-20 miles away. now she still goes into hospital about 6 times a year but we manage a lot of her care from home now :) now I should shut up as I am starting to ramble on a little

Our paediatrician is referring her to the ENT because he thinks the adenoids are blocked causing the pressure to build up and only one way to go. She's been so messed about with now she refuses to open her mouth so he hasn't seen how big her tonsils are. Hopefully we will see an ENT without a beard (she has a phobia of facial hair lol) who she will open up for without a stick (the paediatrician won't use one because he doesn't want to upset her too much).

I spoke to the teachers today and said they need to watch for her getting tired and the circles around her eyes as their a sign of a lack of oxygen not that she's had a busy day. I said she knows when to ask but won't always, she said today she forgets... so they need to watch for it and offer. I think the worst is how miserable she gets from being tired and then she gets naughty which is so out of character.

She hasn't been hospitalised for 2.5 years apart from a couple of A&E visits for infections, so she's pretty controlled but it's taking maximum drugs - Mum has quite bad asthma and is on less - and paed is desperate to increase. He had a brainwave last week "Montelukast!" "She's on that" lol

I did write up what to do day-to-day and what to do in an emergency but not sure they have it. They've sent forms home though with all those questions on so I need to sort that out.

Sorry took me awhile to get back to you, When we took our daughter to an ENT we insisted they took her tonsils out. They said if it was not for her asthma they would not have took them but as it did seem to be causing some problems with her breathing that they would do it for us :) said she did not need her adenoids doing but if they caused any problems in the future that they would do them :) If you go onto the asthma UK website they have a school asthma card that you could use :) they also have a school asthma register and I thought that was a great idea going to try and get some for my daughters school. I spoke to someone from asthma UK and they are contacting the LEA in my area as its not right to have her meds stored in the school office and not the class room near her :) they have loads of other stuff about asthma that might help your daughter and are really nice. yes montelukast (singulair) is a great thing but I have to say you should watch out for a few side effects so have a look up on them but don't freak about them to much as loads of meds have loads of side effects and its a long term drug not a fast fix :) oh and all the stuff from asthma UK are free of charge :)

www.asthma.org.uk/applications/dynamic/2009-publication_index.rm?keywords=&category=Materials+for+children&order=date&id=3136&x=16&y=8

I'm glad you're getting somewhere with the school. I can remember having to queue outside the headteacher's office when I was in primary school with all the other asthmatics and he used to supervise us individually which must have took up a lot of his time and I can remember dragging myself there when I needed them.

The problem we have with her tonsils is she refuses to open her mouth for anyone now, probably didn't help that a GP thought a good way to get her to open was to threaten to send her to A&E! We spent 7 hours in there when we didn't need to as punishment for not opening her mouth So no one is really sure what's happening, at least with her drums perforated we do know something is going on so she's getting a referral on that anyway.

She's been on Montelukast for about 2.5 years, they just threw everything at her to see if it would bring her under control as she was spending a week a month in and out of A&E until she had a big attack then we'd be in for a few days, her last asthma attack lasted 3 days with almost constant nebs, at one point we were watching her heart rate creeping up to 200 and just looking at each other in silence - I used to be in St John before having children killed my back and I've done my ambulance training, Dad is a radiographer and first aider so both of us knew she was pushing a heart attack and Mum could see it too. That attack was bit of a turning point for her treatment. They've managed to fend off more attacks but she's not under control and they can't add anything else in now.

She's on 2x 2 Serevent, 2x 2 or 3 100 of whatever the brown is called, Montelukast and 5ml Pirition at night.

Just off to check out the asthma UK website.