I would just tell parents to advocate for their child as best they can– with doctors, with insurance companies, with schools. I would tell them to know that they have the power to do that.
Know your legal rights
It’s been very important for us to know what our legal rights are when dealing with Katie’s asthma and allergies in a school setting. I always made sure when walking into a meeting that the members from the school knew that I knew what our rights were. In a public school system, for example, food induced anaphylaxis and asthma can both be considered disabilities under federal and state laws. I made sure that they knew that I knew that, and that Katie was entitled to reasonable accommodations, such as a peanut free classroom. I didn’t ask for a peanut free school, but I did insist on a peanut free classroom, to always have her medications available to her, and to have a school nurse on site at all time. And it’s worked. And I have so many people now in the school system who thank me, because they don’t have to fight those battles, and we did.
Important to know there are other people who have gone through it
I used to be on the board at the Asthma and Allergy Foundation of America (AAFA) (see EJ editor note below). I think doing that saved me from losing my mind, because I was able to help other people, and I didn’t feel so alone. We did a lecture series, so people like Katie’s doctor would come and speak with us. So it wasn’t just sitting and talking, but there was education too, and there would be discussion afterwards. I think things like that are important, so people don’t feel alone, and that they know there are other people out there who have gone through this whole thing and are willing to share information. I think that’s really important.
EJ editor note: To learn more about AAFA and other asthma organizations, please visit our Resources section.
The asthma and allergies take their toll. I think they take their toll more on us as parents than on a child. I think it’s tough to have a child with a chronic illness. I think parents need a lot of support.
Be proactive
I would say to definitely do the proactive things the doctor tells you to do. Do the mattress things, get rid of the carpets if you can, get the HEPA filters. Get the cat to the groomer if you can’t get rid of it. I think those things really do help.>
Ask questions
Listen to what the doctors have to say, but always ask questions. No question is ever a dumb question, and you’ll always get it answered, and the answer always helps.
Don’t panic
If your child’s ever in a situation where he’s having a flare up with the asthma, the best thing for you to do is not to panic, because if you panic, the child panics, and that doesn’t help their breathing anymore.
Be knowledgeable, have patience, and deal with what happens
The only advice I have is once you learn your child has asthma, I would also look into the possibilities of your child having allergies and/or eczema. This stems from Jordan being diagnosed with eczema when he was just a baby. After the asthma attack when he was three and a half, his primary doctor told me that eczema and asthma go hand in hand. Well, no one ever mentioned this to me before. Plus, it was said like I should have already known this. When I took Jordan into the hospital for his asthma, I think it was there that I was told, eczema, asthma, and allergies go hand in hand. I was floored. He had been suffering with his eczema since he was a baby, now asthma, and now I learn my son has tons of allergies to everything you can think of. I think this is something parents should be made aware of early on. Not that I could have prevented anything ahead of time, but you never know! So, as I watch Jordan take all his medications for all the above, I can only hope his body will change and that he will outgrow most of what he has. I also tell myself and Jordan that it could always be worse. We just have to deal with what we have at the time we have it. So, my advice to parents would be to become knowledgeable, have patience, and just try to deal with what happens when the situation arises.
I’d emphasize the training part of it because I know when the kids of the people who work with me get sick because of asthma, the parents have to do everything for them because they don’t know how to take care of themselves
Treat them the same as your other kids
If your kid gets diagnosed with asthma just treat him the same as your other kid who doesn’t have it. Don’t make him feel like there is something wrong with him having something like that, just let them go on and do their stuff. Also, keep encouraging them– that’s what I do with Lucy. When she gets down and out about herself every now and then, I tell her that she can do it just as well as anyone else if she puts the effort in it. Just be there and support your kid, that’s all I can say.
Don’t be afraid of it
Don’t be afraid of it. I think there’s a lot of stuff out there about asthma, and you have to go into it with having an open mind. I would say, too, to really, really work with your doctors, and have them be almost like your best friends. I think it will work out in the end– Anthony plays sports, he does gym in school, he’s on no restrictions in school. I think it scares some parents when they get the diagnosis, but you can live with it and get on just as long as you’re doing what you’re supposed to be doing.
Take every wheeze seriously
I would tell parents to take everything seriously. Even though a wheeze might not seem big, it is big. Every wheeze has to be checked, even the little ones. Even though you might think you are bothering the doctors or being a pain, even if it interferes with anything you have to do, it’s just always good to pick up the phone and at least give a call because it could be serious, and you don’t want to have to be in the hospital for three days.
I think you get to know your child more when they have something wrong. You spend more time with them, you want to be with them more, you want to be able to help them more. I want to be there for my children when they’re in pain more than anything else.
Go to the doctor right away
If you think your child has asthma, definitely go to the doctor and discuss it instead of waiting to end up in an emergency room or a hospital which is what happens to a lot of children. Take your child to the hospital right away. Don’t wait, because it could get serious and you could end up staying in the hospital for days.
Treat your child normally
I think the most important thing is to treat your child like a normal child. I think you and your spouse have to be on the same page, and you have to treat all of your children the same and keep an even household. Don’t say “Well, we can’t do this because she has asthma and she’s sick.” Try to make every effort that you possibly can to do the things that you would do as a normal family. One thing I would say, too, is that if you’re going to Disney World or if you’re going to do some other big huge thing, don’t tell your children you’re going to go until the morning you’re going. The reason for that is just in case that child gets sick, you don’t have to disappoint them and say, “We can’t do this because of you.” You just can’t do that. If you tell them about a fun trip or activity too far in advance, they’re going to anticipate, anticipate, anticipate, “We’re going, we’re going, we’re going,” and then if your kid has to go back in the hospital and you can’t go, it’s really hard.
Encourage them to do whatever they want to do
I think a child needs to be normal. Addison did soccer, and she was in the band. She played flute starting in fourth grade. In the beginning it was tough for her to carry the breath through the notes but she stayed with it, it didn’t discourage her because she enjoyed it, she had her friends there and she played flute right through graduation. She wasn’t the best, but she enjoyed it and she could do it. So encourage them to do whatever they want to do. I think that’s a good thing to do with any kid, but especially with a kid with an illness. They want to be normal, they want to be part of things.
Eczema, asthma, and allergies
Jordan was diagnosed with eczema when he was just a baby. After the asthma attack when he was three and a half years old, his primary doctor told me that eczema and asthma go hand in hand. Well, no one ever mentioned this to me before. Plus, it was said to me like I should have already known this. When I took Jordan into the hospital for his asthma, I think it was there that I was told, eczema, asthma, and allergies go hand in hand. I was floored. He had been suffering with his eczema since he was a baby, now asthma, and now I learn my son has tons of allergies to everything you can think of. I think this is something parents should be made aware of early on. Not that I could have prevented anything ahead of time, but you never know!!
We’ve been at the hospital for two nights now. I’m really tired because of having to come here unexpectedly. I wish I would have packed for this. I have brought Mya to the emergency room before and they just gave me a prescription and sent her home, so this time I just brought her in and I threw on my nightgown and didn’t think nothing of it, and then we got stuck out here with nothing. Next time I think I would like have a little kit on the side, some extra pants and bathroom stuff even though it’s not serious just to have because you just never know.