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[LuvOrlando]

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[LuvOrlando]

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[outlander]

Hi Outlander,

Thank heavens my DS has never been in the hospital... that must have been absolutely horrible for you.

Yeah, it's not fun. Not only because they are sick but because you (as a parent) wish there was something more you could do. Fortunately, I really feel like we have his asthma controlled better now. Hopefully he won't have to be admitted again.

Unfortunately, DS can't take any of those non-drowsy allergy formulas like Zyrtec and Alavert because they all seem to cause severe hyperactivity. He can't even take cough syrup other than Codeine for the same reason. Even caffeine in soda is banned in my home. Sadly, he is not the only one that can't tolerate these stimulants... they make me off the wall too so I guess there must be a genetic link.

That's too bad, the Zyrtec has really worked for us when nothing else would. It really seems to be different than all of the others in so many ways. In fact, even though our insurance won't cover it, we still get it because it works so good. Hopefully you can find something that will work for you.

DS has missed 2 doses of Singulair but he still had an outburst just now over the fact his band instrument wasn't waiting for him when he got home and won't get it until 7:15 this evening. Yes, I know he just sounds spoiled but really this just isn't him I can't even get mad. He had a fit on the sofa as DD was doing her home work and we just sat there open mouthed and stared at him All I could say is "Are you feeling sick or something?"

The only thing left is the Advair but I'm not sure if extreme hyperactivity is a side effect or not. I really wish the Dr would have called back but he has not yet done so so, at least for now I'm on my own

Singulair was definitely our culprit. I doubt the Advair would have such a side effect because it is very specific. It is not absorbed readily throughout the body like normal medications.

As for the rescue inhaler, he doesn't use it often, only when there is a flare up. But when there is a flare up he can be on it for a few days before he stabilizes. I can't really say whether his Asthma is under control. I'm not quite sure if it is expected to disappear under the right meds or if occasional trouble is just to be expected.

It's good that he doesn't use it often. Of course flare ups will occur. There is no cure for asthma, we can only manage it. The key is to manage it well and minimize flare ups.

Here we are a few days later and DS is holding up well.

I didn't know at first but I wasn't the only person to feel the consequences of his medication. DS told me that his best friend angered him on Tuesday at soccer practice. As a result my DS actually tripped his friend His friend got very angry and didn't talk to him for 2 days, DS was unrepentant at first. Thankfully, after the medication got out of DS's system, he realized how out of line he had been and apologized on his own. We were talking about how he could deal with the problem and he came up with the solution on his own. So they are ok now. Still, I feel so badly for DS... what a terrible burden illness is on kids.

I hope he gets feeling better. It does effect everyone.

At the moment DS has quieted down. But I know this is only temporary. Within the month he will have another severe episode because all the corn around us will need to be harvested.

Stay on the Advair! I can't remember if you said whether or not he still has the Accuchamber (spacer). Those are *really* helpful to get more of the medication into the lungs. Asthmatics can't fully expand their lungs during an attack anyway so getting a good dose is really hard with the inhaler alone. The spacer 'holds' the medication and allows the user to take a few good breaths instead of just one. If you don't have a nebulizer (that has really made a difference for us too) then you at least need a spacer. We need to give these guys the best chance we can for them to get the medication they need. Especially during an attack.


I hope everything goes well!

 

[PoohnPglet]

Hello - another asthmatic with a child that has asthma here! (I only scanned the last page of posts so I am sorry if I repeat anything.)

My asthma was undiagnosed as a child. I think mainly because while I do wheeze when I have an attack it is mostly coughing. My doctor always just said I had a cold and sent me home. When I was a pre-teen/teen, most of my symptoms slowly just ebbed away until I was symptom free. Until I was 29 and had a really bad case of pneumonia. Since then, my asthma is back like it never left. The doctor said that it does happen that asthma will go into "remission" only to come back due to a particularly bad respiratory illness. Now I take Advair and use an albuterol rescue inhaler when necessary.

My son was diagnosed by the time he was 3 after 2 hospital stays. He was put on Singulair, Flovent and Flonase (no Advair yet although he did go on that at about 10ish), with the occasional round of steroid treatments as well as a nebulizer and a rescue inhaler. (I don't care what anyone says, a nebulizers delivers the albuterol better than any inhaler.) My son did have trouble during the changing of the seasons with allergies, but his big danger was catching any kind of cold/resp infection. They would almost always lead to a trip to the hospital with a case of pneumonia.

I had some very scary times over the years dealing with peoples ignorance. Like the school nurse when he was in 3rd grade refusing to give him his inhaler because he wasn't struggling enough to use it. I asked her what she meant by that and she said that most kids waited to come to get their inhalers until they were coughing and breathless and that my son wanted his when he was just wheezing. I was like what? And my son's doctor called up the principal and ask if she needed to come to the school to educate them about asthma and how denying meds could be life threatening? (Anyway, I digress)

My son is now 17 and the only meds he takes now are over the counter Claritin-D when the pollens are high. We keep a rescue inhaler on hand, but I had to toss out the last one of his in a never opened box because it was 3 months expired. (My symptoms are active so we do have reliable ones on hand!) He plays sports, skates, surfs and doesn't have any problems. (Although he is still ticked that he cannot go to the Air Force Academy because of his asthma.) I suppose I do have to worry that there is the potential his can come back, so I have really focused on him being as healthy as I can - eating fruits and veggies, watching fats and sugars, taking vitamins, drinking plenty of water etc...

So, I guess I just wanted to tell you to hang in there, stay vigilant and if your doctor is not your partner in this find another one!


(Wow - long post! Sorry!)

 

[LuvOrlando]

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[PoohnPglet]

Thank you both Outlander and PoohnPglet for your responses. Sometimes the weight of dealing with Asthma can be isolating. It's nice to hear from other people who've had the same experiences with the stubbornly ignorant that I have had to endure.

Outlander, I wouldn't dream of letting DS go without any medication at all. At this time he is only taking Advair but I'm sure he will need another round of the messy stuff in a few weeks when I won't be able to avoid it. I guess the best I can hope for is that Soccer season will be over by that time. We do have an Aerochamber Max and a Nebulizer. It seems as though the nebulizer exaggerates his hyperactivity issues and brings them to a head more quickly. As a result of the fact that the Aerochamber seems to work just fine I tend to avoid the Nebulizer in all but the most serious of circumstances.

PoohnPglet, it never ocurred to me that having Asthma might prohibit my DS from doing whatever he wanted to do. I didn't know that Asthma would prevent DS from choosing the Armed Forces if he wanted to join as an adult. Just out of curiosity, are Asthmatics prohibited from all the Armed Forces or just the Air Force?

He has been told the Armed Forces as a whole. We haven't asked in a while, so the answer might be different now that they have changed some of the recruitment standards.

 

[NEVERENOUGHWDW]

Just wanted to let the Dis know there is a panel of experts coming together 11/4 that will address asthma (both pediatric & adult) they are going to have a Q&A session for all the experts.
PM me is you would like the address, time & place.

 

[LuvOrlando]

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[outlander]

Just wanted to let the Dis know there is a panel of experts coming together 11/4 that will address asthma (both pediatric & adult) they are going to have a Q&A session for all the experts.
PM me is you would like the address, time & place.

That sounds interesting.

How are things going luv?

 

[NEVERENOUGHWDW]

Yes, Neverenoughwdw I'm very interested.

PM me & I will be happy to forward you the flyer

 

[LuvOrlando]

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[TaraPA]

Hey LuvOrlando - I haven't been around for awhile but I wanted to pop in & say hi - and glad to hear your DS is doing ok these days. Now if we could just get a good frost to kill the ragweed.....hahahahaha...ready for another 85 degree sweltering & humid day today?????

 

[LuvOrlando]

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[Whosemom]

Hey Luv,
you might remember reading and responding about my dollbaby who has thyroid problems. Well, she also has what they call cough varient asthma.It took 8 months of her coughing until she threw up everynight to get it diagnosed. Part of the problem was that the hormones that "regulate" the disease go up at night, so the doc never heard her cough. THe other is, she never wheezes. But, like you mentioned, an incident can go on for a very long time. In her case, a couple of weeks can pass where she is all over that inhaler every day. We had, along with a pp, a school nurse deny her her medicine because she wasn't bad enough. Hello! It happened last spring, and I didn't know about it until school was out, so we had quite the heart-to-heart this fall, as you might imagine.

So anyway, she's on your list...advair, singulair, xopenx/pulmicort for the nebulizer, but an albuterol inhaler away from home. She also takes allegra or benidryl, depending on if she is stuffy or just maintaining. Add the thyroid med to that and she feels like a little old lady with her line up of meds on the table! She does ok with these, but let me tell ya! THey had her on clariton before the allegra and she just cried and cried and cried.

Advair has changed her life. Before it, she was starting to dread being anywhere quiet, because we could never keep her asthma under control and she coughed that terrible cough and kids had said stuff to her. Now she's MOSTLY ok. You can tell if she misses her advair.

We also took her off singulair for a very brief time last spring. after 7 days we had the "cough til you barf" and a lovely thin coating of mucus on her lamitnate floor had me on my butt when I went up to take care of her lmao: slide whistle effect here. Even she laughed at that one.) When the first thing your kid says after throwing up is "I'm ok - its just mucus, not real barf" thats a sad thing.

You do have one blessing in knowing his triggers. We have been utterly unable to pinpoint Pinkie's. We're starting to think stress may be her main trigger. Her last couple of incidents started when I've been away. And we usually have a flair up on vacations. Not things she would SAY were stressful, but probably they are.

One other thing we notice that may be a bit of a warning to you. If she has off the chart behavior, generally a day or two later we are treating a full blown asthma. (Except now we get to try to factor in that thyroid med changes can trigger some wild behavior too.) Our incidents may be different than yours, as its never an emergency of the go-to-the-er type. More of a drawn out unpleasantness.

Anyway, hang in there sister, we're all in this together!!!