Asthma management - I have questions, I'm scared and feel so sad for DD.

[randomkid]

DD is newly diagnosed with asthma although this has been going on since last fall. I basically diagnosed her and took her to an allergy/asthma specialist with no help from our ped (looking for a new one, obviously). It started off fairly mild and easy to control as I was controlling it myself when I didn't know what she had - just thought she was getting sick a lot. She was diagnosed last month with cough variant asthma, placed on Flovent 44 and did awesome for about 3 weeks. No coughing, nothing. Then, last week, she started to cough. She is now in a full blown flare and we can't seem to get her under control. She is now on Flovent 110, Singulair, nebulizer (albuterol or Xopenex every 4-6 hours) and oral steroids. We have been doing this for 2 days. Prior to this, we were still doing Flovent 44 and neb 2x/day because I didn't realize how aggressive I needed to be. Of course this happened over the weekend, so went back to MD on Monday and she changed/added all these meds. I feel like I am throwing so much at DD and she is overwhelmed. Poor kid feels miserable, her energy level is crap, she's moody and crying (likely the steroids) and she is worried - no influence of mine, that is just her nature.

I am wondering how long it typically takes to get a flare under control? She's had a couple of days with slightly elevated temps (highest 99.6), but no increased temp today. Her cough was slightly better today, but still coughing. MD wanted to put her on Advair which makes me nervous due to increased risk of asthma related death (from what I've read). My insurance company will not pay for Advair until we have tried Dulane and failed. MD really doesn't want to use Dulane so had us pick up samples from her. I read insert and it says that it is for children over 12yo. I have not used it and refuse to let the insurance company prescribe my child's treatment. There are multiple warnings about increased risk of asthma related death and increased risk of hospitalization in children with asthma. This strikes me as stupid. You are giving a med to improve your child's asthma, but it might kill them. Sorry if I am sounding aggravated, but I am. I so want to get her under control and get her past this flare, but I am not willing to put her at increased risk. Advair can be used in children as young as 4yo. However, it carries the same risk.

Has your DC ever used Advair and how concerned are you? If they use it, is it their regular maintenance med or it is only used when things are acting up?

DD's asthma MD started her on lowest dose of Flovent because she was fine when we went to first appt. Now that she is sick, the MD is being very aggressive and changing up meds really fast. I want to know how long I should give a medication to work before changing? Is she changing things too quickly? DD just took finished her 2nd day of oral steroid tonight. I called MD because she was still coughing after giving Flovent, steroids and nebulizer. That's when she said we needed to change. Not sure what to do at this point and not really wanting to use Advair. I completely refuse to use Dulane because she is under 12yo. I think I can get ins. co. to cover Advair if I bring this up.

Any other words of wisdom, support, advice, etc are highly encouraged and greatly appreciated. Thank you!

[ladysoapmaker]

My DD#1 was diagnosed with reactive airway disorder at age 2 1/2, (asthma specialist said they don't call it asthma until they are older, but with family history she has asthma). She was on flovent until she ended up with whooping cough and was placed on Advair (didn't know she had whopping cough at the time). Since then they have been trying to wean her off the Advair and put her back on the Flovent. The reason for weaning is that the asthma related dead risk is mostly when you stop the Advair cold turkey. She's down to the lowest dose and one puff per day. and if all goes well either she'll be on Flovent this evening after her appointment or in a blind trial looking at the difference of affects of Advair & Flovent on children.

BTW the only difference between the Advair & Flovent is the Advair has a steroid in it to help keep down the inflammation in airways. The main controlling medication is the same.

I wouldn't worry too much as long as you are proactive and listen to your child. I would also recommend getting a peak flow meter for your DD and have her use it twice daily. we have a spreadsheet that DH put together that tracks DD's readings and we generally know when she is having an issue before the physical manifestations become truly apparent.

Good Luck and if you have any further questions or concerns you think I can help with just private message me, I'll be happy to try to help.

Jen

[Kindra178]

I will update later when I have more time but you and your doc are doing everything right. ds1 had a similar experience last year. The Flovent 110 plus the steroids will take a few more days to work. Keep up with the neb. One of the peds in our practice recommended that we wake ds overnight for nebs. It really sucked but it helped so much. We did an 11 pm neb and a 3 am one. I think we only did that schedule two nights but kept the 11 pm one a few more days. I think the reasoning behind this is that when the wheezing is untreated,it is hard to catch up.

My boys are on a maintenance schedule of Flovent, singular and Allegra. Ds1 is down to only one puff of 44 these days. Your dd will get better. But do not be surprised if the fall is hard again, both with illness and wheezing.

[trcy]

No advice, but I couldn't read without sending

[trcy]

Sorry, double post

[egoldber]

I think you doc is on the right track also. Some controllers work better for some people than others, so you do need to experiment. Finding the right combo of meds can be quite tricky at first and there is often some trial and error.

My older DD has been on Advair for several years now and it made a huge difference for her. She can't take Pulmicort or Singulair (behavioral side effects) and Flovent by itself was not enough.

When she has a flare though, she gets more of a controller med. One choice is to move to a higher dose of what you are on currently on (like going from Flovent 44 to Flovent 110) or they could add a second controller. That is what our doctor does for DD. She continues to take her Advair (100 disk, but only one puff, so same as taking 2 puffs of Flovent 44) and adds in Alvesco. We typically do that for 2-4 weeks until her flare is back under control.

FWIW, our asthma/allergy doc does not understand why they have the black box warning on Advair. The steroid portion of Advair is the exact same medication as in Flovent. It is the LABA side of Advair that has the warning, and if you read the FDA website, their recommendation is that a LABA should not be prescribed without also prescribing a steroid. But Advair is a combo medication, so it is confusing.

Here is the warning from the FDA website: http://www.fda.gov/Drugs/DrugSafety/.../ucm213836.htm

[Katigre]

It's so hard - I had asthma as a kid and dealt with it for awhile as an adult too. The flare-ups are scary. What else is going on in her environment that might be exacerbating her symptoms? I'd look at everything - for me the biggest triggers were certain seasonal allergies/pet danders and I also have to live in places with zero carpet and low/no fragrances to help my lungs.

[melissaflorida]

My daughter who is 8 finally is down to Advair, 2 puffs daily to control her asthma. She used to be on Singlular but had bad nightmares on it, I did read after that it is a side effect. She only uses Xopenax when she is in a flare-up.

I agree it's hard to find the perfect balance of med's. My daughter had her adenoids removed and it made a HUGE difference in her asthma. I can't even believe how much it's helped having them gone.

Good luck. Asthma is scary. My daughter was hospitalized for 5 days 2 years ago with Pneumonia.

~Melissa

[crl]

No help, just I am sorry!

Catherine

[mackmama]

No BTDT, but I just wanted to send hugs. So sorry your DD (and you!) are going through this. Sounds scary and frustrating.