SCARED-please help, 3 year old asthma out of control?

[BYHOPE1113]

Hi Matt's Mom,

I'm sure this will be a boring post but hopefully informative so bear with me.

Tonsils - They only took out Karly's Adenoids, they said there didn't seem to be a problem with her tonsils, so they left them. The ENT also put in Karly's first set of tubes when they took out the adenoids. I honestly don't know if removing the adenoids helped at all but Karly's tubes seem to be the biggest help in keeping her asthma attacks, but they eventually fall out or sometimes stop up and she starts getting worse.

Sinus Surgery - Our doctor didn't recommend it because of Karly's age (2) at the time. They didn't want to chance doing damage to the sinus cavities, and felt that as she grew, her sinus cavities would get larger and her problems would get better.

Pnuemococal immune deficiency - Karly tested okay on most things but she did have some areas that were low, so she got a pnuemovax vaccine. Her levels picked up and we haven't had nearly as many problems with pneumonias as before.

GERD - Karly's on acid reflux medicines, but honestly I think that part is alot better now that she's older.

Chronic sinusitis - This one is the doozy for us. I HATE CHRONIC SINUSITIS! Karly has had more ear infections and sinus infections than four kids, it's pitiful, but that's because of the M470V polymorphisms. According to our Dr, Karly being positive for one of the polymorphism M470V, means she is likely to have more sinus/ear infections than the average normal child. She also believes that the fact that Karly has two, increases the chances for chronic sinusitis. Based on our experiences, I have to agree with her.

Always tired - Has he been tested to see if is anemic (low iron). Several months ago when Karly was really sick, she was anemic. They put her on iron for a while but that has improved alot.

Cushings syndrome - Is this because of the steroids? Does it get better when he's not taking them?

Constant mission to find help for him – I am right there with you on that one. We have to be our childs biggest advocate. I honestly don’t think Karly would be doing this well, if I hadn’t kept pushing and pushing.

Tested for CF – Karly showed negative on the sweat test but since she was having so many problems that could have fit the symptoms of CF, our doctor decided to genetic test her. At the same time, she asked for testing for polymporphisms. That’s when we found out about M470V.

Basically, M470V might look like a duck (CF) and act like a duck (CF) but it’s not a duck (it’s M470V)
According our doctor it is possible that at some point in the future, they could look back and say, yes this M470V polymorphism is an atypical form of CF, with milder symptoms, but she says it’s not likely.

Ciliary Diskenisia – Cilia syndrome – Karly was tested for that as well and everything was ok.

My daughters just three now, but we’ve been fighting this thing for two years now and things have gotten better. I think you’ll probably have to push to get any accomodations at school, but it’s well worth doing for the health of you child. You know I think Asthma could be considered a disability, so you might check what federal laws are out there for disabilities.

My best advice is to find a doctor that specializes in both Cystic Fibrosis and Asthma. They are going to have the most knowledge about your son’s situation. We just happened to find that doctor very quickly (within about 3 months) and it still took us months after months to get Karly’s health under control, but it’s better now. I realize now, how lucky and fortunate we were.

Hope this helps

Kim

[matt's mom]

Kim,

I am so glad I met you. Your story mirrors mine. I am trying to find a good doctor. Our ENT is very good and helps me. Does your daughter take any meds. for cf? I tell people he has a variant in his cf gene that mimics cf. Does this sound okay to you? Do you find people telling you that she will out grow it? That makes me crazy. I feel so worn down sometimes with a chronically ill child. How do you deal with it?

Thanks- Bonny

[BYHOPE1113]

Bonny,

A knowlegeable doctor is definately what will help. Our specialest actually moved away last year, but honestly she taught both me and our pediatrician so much about how to help Karly, we are still doing pretty well. We did go ahead and get another specialist but we only see him twice a year, but I know if I run into major problems at least there is someone I can call.

I usually just tell people that she has severe asthma and chronic sinusitus. I haven't really had to deal with school much because she's only three, but I can tell it's going to be interesting. Seriously when she and her sister are playing and running (even in the house) She'll start coughing and wheezing. She's tough though, she doesn't let it stop her from having fun.

I have had so many people tell me she will out grow it. I usually just laugh and tell them well, I'm not holding my breath, but I hope so. Honestly, I don't think she ever will. I definately think it might get easier, but I think she'll always have some kind of problem with it. The main reason I think this is because asthma runs in my husbands family.

Karly - Severe
Her Dad - Mild
Her Sister - Mild
Her Uncle - Severe
Her Grandmother - Severe

God, growing up I never knew what asthma really was, but boy I got a crash course in it quick after I had my girls.

I know exactly how you feel about the exhaustion. There were times that I took my girls to my mom's and said, I just need to sleep.

I've got to run some errands for work, so I'll check back in here later. How is Matt doing after the walk home yesterday?

Kim

[matt's mom]

Kim,

We have a similar history my family- father and sister have severe asthma. My husband and older daughter have mild asthma. Matt did okay after his field trip but was totally off behavior wise when he came home from school. He also coughed most of the evening but then it setteled down. I think he was so tired that he couldn't handle it. He was tired when he woke up this morning too.

Matt is a really strong kid. I wish I had his strength mostly, though, I could use a good night sleep. My husband and I get so nervous that almost every night I end up sleeping with him. He sleeps so restlessly.

Hope to talk to you soon,
Bonny

[BYHOPE1113]

We have always had a problem with Karly sleeping thru the night, even before we knew she had asthma. Looking back I realize that's why she fussed so much but I didn't know that then. I was up about every 2-3 hours. She was so sick between the ages of 1 - 2, if we weren't in the hospital, I was up giving breathing treatments every four hours and I was, like you, exhausted.

I have found that Karly sleeps better if I give her a breathing treatment with the nebulizer either before she goes to sleep or even sometimes after she is asleep. This allows her to breath better, therefore sleep better. If I just use the inhaler it doesn't work as well. I definately recommend the nebulizer.

Xopenex + Atrovent (It takes about 20 minutes but it's worth the extra time)

I also highly recommend the Xopenex instead of Albuterol. It doesn't cause the excessive heart rate and it doesn't give you the jitters like Albuterol.
I do use the Albuterol with Karly sometimes, but I try not to use it at night, because it hypes her up and makes her restless.

Karly's illness has made me so aware of health issues that I'm going back to school for a degree in Nursing. If you had asked me 10 years ago about being a nurse, I'd have told you no on the spot. It's funny how your children can change your mind.

Monday I took a test in Anatomy & Physiology I and I'll find out how I did tonight. I am determined to do this. I told my husband if I like it, I might even go on to be a Nurse Practiciner. (I might ought to learn how to spell it first)

Kim