please help mum of 3 year old asthmatic

Hi there, this is the first time i have posted on here, i have had a look a few times. Im a mum of 2, Callum 3 and Jamie 9 months. Callum is asthmatic and we have had problems with it since he was very young.

He started with gastric reflux at 5 weeks old which brought on constant wheeze and cough. After battling with doctors i eventually got refferred to a specialist who diagnosed infant asthma. He was in and out of hospital on a regular basis for the first 2 years of his life, constantly on steroids and nebulisers. Eventually i changed Doctors and found the new one very helpful, he gave me steroids to give him at home. He was on the blue and brown inhaler but i have now stopped the brown coz after 12 months it didnt seem to be making any difference.

I have read so many books and done my own research but nothing seems to work. His trigger has always been when he gets a cold he has an attack however tree pollen hayfever effects it as well.

He is in nursery school and they are completely useless, no-one in his class has asthma or any medical condition and all my friends kids are in perfect health. I genuinely believe my friends think i am making it up because through the winter months it happens that often we are forever cancelling arrangements, i wish they could see him when he was struggling to breath then maybe they would understand.

I am reluctant to send him to school coz they dont take any notice when i tell them he needs to take it easy and i am forever on the phone to my G.P because i dont have anyone else to talk to who understand.

I just want to know that there are other people out there going through the same thing coz no matter how many friends and family i have around me it can feel very lonely when Callum is ill and i have to restict him from doing things and going places.

[Hidden]

Just a thought. Instead of cancelling meetings with friends why don't you invite them around. Then they will be aware of what is happening and you have your friends around when you need them the most.

[Hidden]

HI Kathy.carrie

Ails has a great idea there, let ur friends come to you.

Do you have an asthma nurse at ur docs surgery? She may be able to help with support more often than the doc. Is there a support group in your area? Do you still see the specialist who can check for allergy triggers?

As for playschool, an asthma action plan, (asthma nurse can help make one) would be an idea so they know what to do when your little one is poorly, when to call you, etc.

For example on my eldest sons asthma plan for school, they were aware to call me if he became hoarse as this was not a sign of a sore throat but the start of an asthma attack.

I have 2 sons with asthma aged almost 13 and 2.

Hopefully your son's asthma will become more controllable as times goes on . My eldest still carries inhalers and has odd problem but at nearly 13 is almost problem free from his asthma. He was fairly well controlled on inhalers, though still dependant on them by the age of 6.

We looked at other factors such as allergies and had allergy prick tests done. (which is why I asked whether ur specialist could look into allergy tests). We found his triggers were not only colds but also house dust mites. Dust control in the house was a major factor in controlling his symptoms.

With the youngest we also thought is was just colds that triggered him until prick tests showed other allergies that we are now working on.

I am happy for you to contact me, sometimes it helps just having someone to talk to who knows what it is you are experiencing.

regards

carol

[yaf_user681_23350]

Hi, I have 2 asthmatic boys age 12 and 10. We have been through the same, lost lots of friends as they can't cope with it. Like one of the other posts said, we got people to come to us, takes the pressure off and still get to see my friends. It's so lonely as no-one else understands how serious it is. I remember when my Son was 3 I broke down at my friends daughters Birthday party. My Son had been so ill and we are on our own with it as he doesn't wheeze. The pressure was just too much.It was an adventure play party, all the kids were diving around and my Son sat on my lap, grey looking watching the other play, it broke my heart.Got a beautiful bunch of flowers from the other Mums, they didn't realize what we had been through until they saw him.

It does get easier when they are older, they can explain how they feel.Can your doctor write a letter to the school to explain? Our consultant wrote to our school and explained the serious consequences of ignoring my Sons asthma. I have kept a copy, so far so good!

Good luck, I wish I had this site when they were small,

Take care

Kate

[Hidden]

thanx for your advice

Thanx for your kind words and advice. I went to the drs after i wrote the post this morning and he told me to start giving double dose of brown inhaler and to start coming to asthma clinic. Another factor i forgot to mention was that i am disabled. I have congenital hip displasia but i am going to have surgery to hopefully correct it in just less than 2 weeks, it can make it difficult to get out to places (such as asthma clinic) but hopefully in a couple of months i will be more able.

I did ask about allergy testing as Callum also suffers with terrible eczema and hayfever but i was told they dont do allergy testing on children so young, that was about 12months ago. Does anybody know what age they start?

I have read up about dust mite allergy and changed all his bedding to anti allergen, although i am sure you need to be alot more thorough than that.

I can really sympathise with your Son at the play party, i have been there so many times, it is heartbreaking, Callum is always so full of energy and doesnt understand why he cant go to school sometimes. The only reason i keep him off is because his school are useless, i have waiting for the to do his healthcare plan with me since January and they keep forgetting to get the form. They are big on outdoor play and basically leave the door open rain shine and even snow and the kids are allowed outside running about for the full 2hours. I am thinking about changing his school, they just dont seem very aware of asthmatics and their symtoms.

Thanks you so much for your advice i am so glad i found this site.

[E-PAYNE in reply to Hidden]

Hi, dust mites are my worst enemy and one of the best things for my asthma was to purchase a air purifier and a hoover with a HEPA filter. My morning peak flow got down to 150 sometimes less, so I decluttered the whole house, replaced all bedding which instantly helped, banned pets from the bedroom as advised by my nurse, stuck the purifier in the bedroom and it was like breathing fresh air. You do have to have it going constantly but it is worth it. It is a lot of work keeping the house dust free and I can't always do it especially with kids and all their teddies! But I keep my bedroom clear at the very least. Took my girl who's 4 now to doctor and asked for allergy tests because she would randomly come out in hives all over and would get short of breath but was told that the test can trigger an allergy so they wont do them on children. So have been trying to work it out myself, seems she reacts to red foods especially lollies, squash, ketchup, baked beans, salsa and jam, she also reacts badly to nurofen, I think it might be sulphites. She is slowly growing out of it but will always have to be careful I think.

[Hidden]

Have you tried withdrawing certain food groups wheat, dairy etc. for a couple of weeks and see if he improves any without certain food groups.

I got allergy testing and to much dairy can trigger mine. My daughter now 6 had problems from when I stopped feeding her and put her onto bottle then cows milk. She can have some dairy cheese or choclate but still a mess when she gets cows milk. It breaks out her exzema and she gets asthma symptoms. lucky for her when she doesn't have it the symptoms go. Not saying this would be the case for anyone else as it wasn't the same for me. But if you found he was better with avoiding certain things then it would help both of you.

Have you got a personal asthma plan for your son? Was going to suggets some of the publications you can get sent out for asthma uk. I have attack cards that I carry with me and peak flow chart book and plan books. They are really handy.

Hope things settle down for you all soon

Aileen

[Hidden]

Hi kathy.carrie,

There were some good suggestions. Have you tried a professional air purifier. My cousin had a very extreme case where nothing seemed to help, and after several years he used an air purifier and it really worked for him.

[yaf_user681_23350]

Hope all goes well with the operation.

It may be worth talking to an MP about the school, they will all want to help as it makes them look good before an election. If not maybe threaten to go to the press. I know they are extreme measures but sometimes it's so wearing going over the same ground and getting nowhere, also other school maybe just as bad or if at all possible worse.

Take care

Kate

[Hidden]

Hi Kathy.Carrie

I'm asthmatic and so are all 3 of my children to different extents. I have had real trouble with my eldest son's school not taking his asthma seriously enough and not taking enough responsibility for helping him manage his asthma. He's 10 next week so he is able to manage himself to a certain extent. I have made an appointment with the head to discuss his asthma, it's tomorrow. I have printed off fact sheets from this site and ordered loads of different publications to help me get my point across. Could you possibly do the same? Maybe after you're healed from your operation, good luck by the way.

Ultimately though, you need to be able to trust your son's school and feel that he is receiving the care and attention he needs. If my meeting doesn't have the desired effect then I will be approaching the governors of my son's school. It is really hard to get some people to realise that asthma is not just getting short of breath when you're running. I do hope things improve for you, please feel free to PM me.

Puff

[Hidden]

On your query about allergy testing both my sons were tested about 2 and half, the youngest only a few weeks ago. So worth asking doc again.

It was very useful because it showed up an allergy to cats which we were unaware of because up til now he has not been in a house with cats. Also showed up housedust mites and allergy to crops which gave us answers to the sudden attacks in the summer at harvesting time.

Hospital doc did say to me this week that we cannot completely eliminate house dust mites but taking steps can reduce symptoms. My eldest proved this point for me when staying with family who have carpeted bedroom and do not hoover every day (not a problem for non allergy sufferers of course). He began tight chest again sleeping in a little more dusty enviroment than home.

Might not work for all but did for us.

Best wishes for ur op.

[Hidden]

I had same problems, I changed schools to a more understanding school and a school I can trust. He's still off a lot, just like you, tree pollen and winter is really bad, also atacks around long haired dogs/cats and cigarrette smoke. I know i can trust school to keep him in give him his inhalers. it can be lonely but good friends are understanding and help.

[Hidden]

Hi, I worked in a wonderful nursery that took asthma seriously after 3 children all got diagnosed at the same time, my 3 year old son included. They had a great system with the inhalors and I had to sign a simple form everytime my child was given his inhalor. This is now required by law when giving any medicine to a child and I am disgusted at any nursery or pre-school not providing the care and support your child needs. Each child shoul have a key worker so it could be worth speaking to that person and suggesting a book that goes to and from home with you son that contains any medication given or any coughing etc it can help to discover some if any of the causes of his attacks. If you get nowhere I would considor changing you r childs nursery and contacting ofsted to report the failure of care to your child.