Discussion about dealing with long-term ashma in our DCs

[Fairy]

I khow we're not the only nebulizer and asthma family out there, and I wanted to get some comiseration hear how other families deal with asthma. This is kind of lengthy as I describe what we do, but if you wanna skip it, my direct questions are at the bottom.

DC has been dealing with asthma since he was 16 months old. We were told at the time that they don't officially diagnose asthma till age 5 or 6 and that X kids grow out of it by age 6 and that of the others, X kids grow out of it by 12, and the rest are probably asthmatic for life.

So, he started Pulmicourt twice a day via Neb, and Albuterol via neb only if he started with cold symptoms and when he was actually sick (in which case it was 2 - 4 times a day). We did it thru the winter, then tried to back off and see how he did. He didn't do well, and we had to get him back on. Every time a season would come and go, we would try to stop, but the hacking was bad, and back on he'd go. Sometime in here, the neb seemed to not be enough when he was sick, and now he's on Allegra twice a day when he has "flare-ups." Now, he's been at it here thru age five, and only when I questioned the ped at his checkup last month did he say let's take the pulmicourt down to once a day. Which we've done, but he's been so sick on and off for weeks that we haven't really been able to do that. I am left wondering if he'll ever be done. If he'll ever be able to go without "breathing" (that's what we call it) twice a day, which is now so routine in his life.

Our routine is breathing in the morning with a show, then milk & breakfast on the couch if we have enough time (otherwise, he's eating in the car on the way to pre-k). Then the at home it's dinner, breathing on the couch with a show. If he needs albuterol during the day at home, it's neb (with a show), and if he needs it at school, it's the three puffs of inhaler from the bong thing.

We're on our second nebulizer, as the first one died. We're on our fourth set of neb cup & innards, but this last one has lasted quite some time. Weve had only two masks in all 4 of these years. Sturdy little suckers. Both the purple dinosaur. However, it's really time for a new mask. Big time. I'm not srue where to go get a mask from. The one that came with the neb isn't working out for us, we want something like the dinosaur again.

Questions:

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?

2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?

3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.

4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.

5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.

Thanks for sticking with this. I look forward to reading about other people's experiences.

-- Hil

[egoldber]

Sarah was not diagnosed until she was 5, so that's a little different for us. Hers is allergy induced and can also be induced by a few other triggers (cigarette smoke, illness, etc.). Our ped almost immediately referred us out to a specialist as soon as it became clear that she was going to need something more than Claritin and occasional albuterol.

I would HIGHLY recommend seeing an asthma/allergy specialist. There are a lot of different meds and combos, and I think that seeing someone who specializes in this is very helpful. Also, Sarah's allergies and asthma have gotten worse every year since she was 5, so seeing someone that has that history and can focus on that aspect of her care is important to us.

We have been on various meds and combos over the last few years. Also, she has extreme behavioral reactions to many of the meds and we have needed to change and tweak meds many times. Finding the balance of a med that works for her that she does not have a reaction to has been tricky.

Right now she is on her year round regimen which is:
Advair 45/115 (inhaler via spacer)
Xopenex or albuterol via inhaler with spacer as needed OR via respule in the nebulizer for more severe days

In her allergy seasons, we add in children's Zyrtec (2 teaspoons in the morning) and also Nasonex (nasal spray) when it is really bad. We also use OTC Zaditor eye drops as needed.

Now during the height of her season or when she has a flair, her inhaled steroid (the Advair) often need to be tweaked. This is when the juggling comes in and where I value having the specialist. He has us keep higher dose steroids on hand for occasional, short term use, to manage her flairs, that we use on his direction.

His goal for her management is to keep the use of the rescue inhaler (albuterol, Xopenex) to no more than twice a month and to avoid the use of ALL oral steroids. If we need the rescue meds more than that, he wants to tweak and do something else.

As for your questions....Sarah cannot use an inhaler yet without the spacer. No way. We use the nebuliozer so seldom now that we use the same mask for years. She just went up in mask size over the summer.

[khalloc]

My DS is almost 19 months old. Last winter at about 9 months he was sick constantly. With a cold, then pneumonia, then more colds, would often include nights of coughing, etc...

Pediatrician finally called it asthma. We used albuterol thru and inhaler when he wasnt breathing well. After a month of that (he only needed it when he got sick with a bad cold) she thought we should try daily medication. So we did Pulmicort morning and night. Thru the nebulizer. She wanted to do that until he had a few weeks of no symptoms. At this point I brought him to an allergy specialist who was also an asthma specialist and she suggested Flovent. I switched to Flovent only because it was quicker to administer. He was horrible with it at first, but has gotten much better. Now he always takes his inhaler without a fight.

He does 2 puffs 1x a day when he is not sick. If he catches a cold we go up to 2 puffs 2x a day. Albuterol as needed. but this past cold he didnt need albuterol at all (he will usually need it for 1-2 days if he is sick with a cold for a week.

1. I am confident its asthma now. Still hoping he will be one of the ones that outgrows it though.

2. N/A - he is only 19 months.

3. I just used the masks that came with the nebulizer, and pediatrician gave me a elephant mask that fit his face better, she got it free from a drug company i think.

4. I used pulmicort at first. I think thats a $5 prescription for us if it is generic. But now we use Flovent which I can get for $20 from a pharmacy, or $40 for 3 inhalers if I go the online pharmacy route.

[ladysoapmaker]

As a lifelong asthmatic with a child with asthma I would recommend you insist on being referred to an asthma specialist. There is so much research on asthma that a pediatrician can not be expected read it all. The biggest thing is unless a child is actively having an asthma attack using Albuteral is not recommended because it can create an environment where it's easier for the child to have asthma attacks.

I have to go to a meeting so I'll answer the rest of your question later if you'd like.

Good Luck,
Jen

[egoldber]

The biggest thing is unless a child is actively having an asthma attack using Albuteral is not recommended because it can create an environment where it's easier for the child to have asthma attacks.

Yup. This is our specialist's viewpoint. This is why he aggressively uses the inhlaed steroids to prevent. Keeping her on it year round has made a huge difference. Sarah was sick this month and only needed albuterol 2-3 times instead of her more typical every 4 hours for several days to control it.

Here's a good article:

http://www.webmd.com/asthma/guide/asthma_inhalers_bronchodilators

ETA: And we always just get our masks and things at the pharmacy. It's never been an issue.

[lilycat88]

Questions:

1. I'm with Beth. Highly recommend seeing a pulmonologist and/or allergist. DD has both. We had been on Pulmicort via nebulizer and the ped had given us a dose that the pulmonologist felt was too high. We cut it with no negatives. DD was probably about 3 by the time we went to a pulmonologist and it was shortly after that she moved from Pulmicort via neb to Flovent via spacer. We still use Albuterol via neb when she has a cold or an allergy flare. Her current regimine is:

Clarinex Reditab 5mg
Singulair 5mg
Flovent 44 2 puffs 2x day
Albuerol as needed.

At 5, the pulmonologist can do lung function tests and get a more solid diagnosis. DD aced hers in October (ironically, that evening she was hit with H1N1) and we're starting the process of weaning her away from some of the meds to see how she does. We're also going to have her allergytested again as soon as we've had some hard freezes and some of the fall allergens are gone since she has to be off the allery meds.

2. DD still uses the spacer with her inhaler and the "fish mask" with her neb. We tried a "non spacer" med at her last visit as a test and she still wasn't able to do it.

3. All of our neb supplies come from a home health agency. I just call them up and they send them. We're alowed a new mask/neb kit every six months and new filters for the neb monthly. Even if we aren't using it as much, I always like to have a supply. We tend to use a new set every time we have an illness. We can also get an unlimited supply of "disposable" kits and masks and we send those to school with her if she's doing multiple treatments a day. We have 2 nebs so we just send it and leave it for the duration.


4. No longer on pulmicot.

5. At 4, DD was using her inhaer and spacer entirely on her own. She does her own albuerol treatments now as well from putting the med in the cup, turning it on, and turning it off when she is done.


Jamelin

[alexsmommy]

DS1's current regimine is
Singulair 1x daily
Flovent 2x daily
Albuterol as needed (usually getting a cold, but allergies kick up his wheezing/coughing too)
We add Zyrtex as needed during spring/fall allergy season

Right now we seem to have hit upon a good maintenence plan (knock on wood). My plan was to move on to a pediatric pulmonologist if this plan was not "holding" him.

He uses the neb for albuterol, I feel he gets a way better dosage that way. We still use the mask, although he can/has used the mouthpiece. He likes the mask better because he can read/play on leapster better with the mask. He has a spacer at school - we just got a new one that sounds a note if you inhale incorrectly which has been GREAT for his learning cure. Flovent is with that spacer. No way is he ready without a spacer.
We inherited several masks when he was hospitalized when he was 4 so we haven't had to purchase a new one - he doesn't use it daily. Our ped also sends us home with the mouthpiece whenever he's had to have a neb in her office.

I'm waiting to see if his asthma is exercise induced. Thus far it has not seemed to be, but if it is we will also be moving up to a pulmonologist. My brother "outgrew" his by age 18 and showed dramatic improvement by age 12 or so, so I'm hopeful this will not be lifelong issue for DS1.

[ladysoapmaker]

Sorry I had such a short answer earlier.



Questions:

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?

2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?

3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.

4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.

5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.



1. Highly recommend a specialist, talk to folks in the area, try to get one who specializes or at least deals well with children. (Mine treats all of us or allergies and asthma and is also a mother so understands when I ask screwball questions). The specialist really tried hard not to dx DD with asthma until she absolutely had to. Given family history and her symptoms it was around age 3 1/2 to 4 we finally stopped calling it reactive airway disorder.

2. DD#1 is almost 6. She's still uses a mask if she has to use the nebulizer. We are using an inhaler for maintenance meds, we use a spacer with a mask for that. I personally like the mask. I can hold my book with both hands while my breathing treatment is going on. I'm thinking if she is still having issues when she is

3. we either get sent home with a mask from the er/hospital or we call the place we got the nebulizer from. I haven't thought about it in a while since it's currently collecting dust in the hall closet.

4. We have had several insurance companies while we were using the nebulizer exclusively and none forced the generic... that said our current one seems to be less likely to force changes with DD now myself on the other hand.... They want me to go back to albuteral from xopenex. My heart skips beats with albuteral so I don't take it and then end up in the er.

5. We did work with DD with the inhaler, she had one at preschool just in case with a spacer, now she has one at school since she's in kindergarten. I highly recommend the spacer.

As I mentioned I love our asthma specialist. She has worked with us diligently and we got DD to use a Peak-Flow meter around age 2.5 to 3. THe respiratory tech at the hospital was floored when we started quoting Ladybug's readings. She had never had child at age 4 being able to do their peak flow readings in the hospital. I think what helped was we started working on them when it wasn't and emergency. THe peak-flow readings was how we knew there was a problem before she was dx with whooping cough and bronchitis. We are liking the fact they are going back up and she has reached a new high. Dr. Z has an asthma action plan for DD and a copy is at school and posted in our living room, and on file with her girl scout troop. My sister wishes she lived closer to us so she could send her DS to Dr. Z.

Ladybug is on Advair right now and probably with be switched back to Pulmicort in the next few months. we have a standing 'script for Prelone (predisone) if things get too bad. She also takes singulair and Zyrtec.

I hopes that helps. and Good Luck
Jen

[Jacksmommy2b]

Questions:

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?

2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?

3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.

4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.

5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.

Thanks for sticking with this. I look forward to reading about other people's experiences.

-- Hil

J is 3.5 and he just recently earned his asthma diagnosis. After 10+ ER visits and 2 four day hospitalizations they finally diagnosed him an asthmatic during our last hospitalization. He was just using the neb with abuterol ever 4 when having symptoms - but as of Friday we're adding Flovent twice a day.


1) I guess we're the minority here - but we went to our first specialist appointment on Friday and I was really unimpressed.

The specialist had such a thick accent (german? russian?) she was almost impossible to understand. They asked me for his whole history, listened to his lungs for a minute and handed me a Rx. She said (I think) that because his flares are all concentrated around illness and not allergy that allergy testing would be useless and that he was too young to be compliant with asthma testing. She also said that under normal circumstances she would not put him on a preventative (again because he only flares when sick) but because this winter is supposed to be so bad they'll try him on the flovent to keep him out of the hospital.

Then another doctor came in to tell me 'it's really important to give him the meds every day - even when he's not sick.' Um yeah, thanks captian obvious - our first name familiarity with the ER staff didn't already convince me the importance of his meds.

And this is the CHOP affiliate. (CHOP being the top children's hospital in the country)

So IDK - am I confident in the asthma dx - yeah I do believe he is asthmatic and I also feel really lucky that he does not have allergies severe enough to complicate things. Do I have faith in the specialists we're seeing -- no, not really and I'm going to shop for a new one.

2. Again, J is only 3.5 and getting him to use the mask without complaint was a huge success - but IMO, stick with whatever works. If he doesn't mind the mask, see no reason to change his routine.

3. We get ours from the hospital. Whenever we're there we always keep the one he was using and ask for spares. They have never hesitated to give us a few more to take home so after many ER visits we have quite a stash. Have you tried medical supply stores?

4. J is only on Flovent and Albuterol. Can you ask your ped to give you brand neccesary scripts?

5. J is just now becoming comfortable with the spacer. I'm hoping that we can eventually try the albuterol inhaler versus the nebulizer. But again, I'm a big fan of not making waves so if he is a willing participant we'll probably just stick with what he is comfortable with.

And LOL, the 'bong'. I think J's spacer just got a new nickname. :)

I have a couple questions too, if you have some time!

1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?

I am just hoping that we won't have double the hospitalizations when the new baby comes. :) I was also reading that c/s babies are more likely to have asthma, and I do wonder of J being delievered at not quite 38 weeks by c/s might play a part.

2. Does your DC vomit during bad asthma flares?

J only flares when he gets sick - but he goes from fine to having a hard time breathing in a matter of hours. He also wakes in the middle of the night vomiting when the asthma gets really bad. Sometimes it is cough so hard he yaks but for the most part he just vomits in addition to coughing.

We have been told more than a few times that it is just a coincidence or another symptom of the illness that is aggrivating the asthma - but I can't help but think it is all somehow connected.

3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)

I can't help but feel that the Dr.s tend to just pat me on the head and shove me out the door when I have questions or want to discuss his 'plan'. I don't need the color coded 'asthma plan' to tell me when he needs a treatment or when to go to the ER - but I would like to know why they believe his asthma manifests this way and what else we can do to prevent flares.

Lily

How did your DD tolerate H1N1?

I am scared stiff that J will get this. We have gotten his first vax, but lord knows if it will be enough to protect him if we can't get the booster. It takes a small cold to earn him a four day stay (as he can't maintain his pulse ox levels) and I petrified what a flu that specifically hits the lungs is capable of.


What a great thread! Thanks for starting it Fairy!

[Fairy]

1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?


I only have the one, but he was a c/s. I had not heard that c/s babies had a higher incidence of asthma, but DS was delivered five days before his due date when my water broke.


2. Does your DC vomit during bad asthma flares?


I can't help you here, fortunately for us, not so fortunately for you, eep! No, DS rarely vomits, but when he does, it's always illness-induced, not from the asthma flare ups.


3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)

I can't help but feel that the Dr.s tend to just pat me on the head and shove me out the door when I have questions or want to discuss his 'plan'. I don't need the color coded 'asthma plan' to tell me when he needs a treatment or when to go to the ER - but I would like to know why they believe his asthma manifests this way and what else we can do to prevent flares.


Now, this is interesting. I really do like DS's doctor and most of the other docs im the practice, but I do feel "patted on the ehad and shoved out the door when I have questions or want to discuss his 'plan.'" This is very much what I go thru. But this last cold/ well/ pneumonia/ well/ horrible virus/ horrible flare up and resulting today in beign told his lungs sound great and fine and maybe we should move up to .5 of pulmicourt from .25 and him not quite remembering what DS's last asthma approach was made me go 'hmm.' DS hasn't been treated for allergies. But it's clear to me that his asthma is induced by external factors. So, I do think it's time for a specialist, cuz I don't want to just throw something against the wall and see if it sticks "well, let's try .5 of pulmicourt and call me in a week to discuss." No.

[lilycat88]

Yeah. I had heard that about c-section babies as well. DD was a c-section delivery at 37 weeks. Her lungs were pretty wet. Since they don't go through the birth canal, the fluids that would normally be squeezed out of their lungs aren't.

[egoldber]

Wow, our specialist is definitely NOT the pat me on my head and send me out the door type. I do NOT tolerate that well LOL!!!! I always have detailed questions and he always takes the time to answer them. He is very busy and always feels a little rushed, but he always answers my questions and even Sarah's questions LOL!!! And he is tolerant of Amy's foibles, which is saying something....

I also really like that he sends me out the door with a bagful of samples, so we're not having to shell out $20 or $30 to try out a new scrip here to see if one or the other med is going to work better for her.

[lilycat88]

"Lily

How did your DD tolerate H1N1? "


I posted in several H1N1 threads about how minor our case was. Really, Susanna has been much sicker and had more lung/breahing issues with plain old colds. We started albuterol nebs immediately when she started coughing and continued 4x daily for about a week and she was on Tamiflu. DDs "asthma" symptoms are illness and allergy related. She's never had an "asthma attack" and is fine unless she gets a cold or has an allergen exposure. She has pretty severe environmetal allergies and we'll test her again soon to see exactly what they are. My DH is pretty much allergic to all things growing.

I remember that at the age your DS is, it was so hard. You'd think they could do more or come up with a more definite answer on diagnosis. It was so hard waiting until she could do the lung function tests accurately and get tested again for allergies.

Shop for another specialist. The one you saw sounds like a loser.

Jamelin

[egoldber]

I ahve also heard about the c-section - asthma connection. All my kids were c-sections. Sarah was 36 weeks, no lung issues or NICU time. But I am pretty sure she was not "fully cooked".

Amy was a preemie at 34 weeks. She had mild RDS at birth and was given surfactant but did very well after that. She came home after 11 days in the NICU. So far she has no symoptoms, but as I said, Sarah was not diagnosed until she was much older.

FWIW, I think Sarah had H1N1 over the weekend, and seriously for her it was nothing. Two days of fever and some body aches and chills, and that was it. She has a lingering cough and we gave a few doses of albuterol in the neb and she was fine.

[noodle]

Great thread!

Questions:

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?
DS was diagnosed with Reactive Airway in the ER when he was 3. He had been coughing for a couple of weeks and NOTHING helped. One evening he started to wheeze and we hit the ER. Saw the ped the next day who sent us THAT DAY to an allergy/asthma specialist. Saw that doctor once a week for a month to work out med combinations (e.g. tried singulair, etc.). That doctor called it reactive airway disorder initially (seemed to really not want to call it asthma), but after a few appointments, he started calling it asthma. He did allergy testing at 4, and while he has several allergies, his main trigger is illness.
His asthma is cough equivalent, and (with the exception of his first two incidents) we have been able to stave off wheezing.
His original meds were daily pulmicort and as-needed albuterol (both via nebulizer). We switched to xopenex pretty quickly.
At 6 we discontinued pulmicort and started daily Advair (disc) and as-needed xopenex (inhaler with spacer).

We've moved away from our wonderful doctor and we're about to start with a new one.

2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?
By five he was using the tube unless he needed a treatment while sleeping.

3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.
The asthma doc's staff was always offering us masks, tubes, etc.

4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.
N/A
Though on a semi-related note, we have had to pay more for Xopenex because I will not put him back on albuterol.

5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.
A nurse in the asthma doc's office helped us learn how to use the inhaler. IMO the spacer is a MUST.

DS is now 10. His asthma is well-controlled, but I am still very careful. Exercise is generally not a trigger for him, but one year after jog-a-thon he had a full-on episode. Since then he gets two puffs of xopenex before planned athletics like soccer.
We're considering allergy shots, but otherwise I'm happy with his maintenance meds.

1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?

DS (10) has asthma.
DD (4) doesn't.
Both were born via c/s. He was 36 weeks; she was 38. She was hospitalized with rsv at 5 weeks old.

2. Does your DC vomit during bad asthma flares?

No.

3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)

Our former doctor was great. I went in CLUELESS about asthma, allergies, etc. and he really took time with me to make sure I understood our action plan and I never felt stupid asking him questions (well, maybe the one time I took DS in with a rash and I showed him pix of the rash I'd taken at its onset and as it progressed . . . I had the pix on my new macbook and I didn't know how to turn of the soundtrack to the slideshow :o). If our new doc isn't talking to me, we'll be looking for a new doctor.

[Gena]

Our background:

DS (now age 5) was diagnosed with asthma at 10 months old. He seemed to be constantly sick that winter and our ped suspected asthma. He sent us to a highly regarded specialist. DS had allergy testing and a swallowing test done. In the end he was diagnosed with asthma. I am very confident that this was the correct diagnosis.

Since that age we have been doing Pulmicort via neb once a day during the months of Oct - May. If he has an asthma attack he gets albuterol via neb. DS's triggers are cold weather and illness, so he doesn't really have any asthma issues during the warmer months and is able to go off the Pulmicort.

We were told that roughly 1/3 of kids will outgrow asthma, 1/3 will get worse as they get older, and 1/3 will remain about the same.




Questions:

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?


I am confident that the original diagnosis is correct. However, I think DS will outgrow his asthma. The only asthma attacks he had last winter were when he was sick. He does still have some occasional nighttime coughing, which is his main symptom during fall/winter/spring. But he has fewer and milder symptoms each year.



2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?


We still use the mask. Given DS's developmental issues (ASD) it's easiest on all of us. DH is a volunteer firefighter/EMT and told me that the EMTs prefer for kids to use the mask.



3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.


Currently we are without insurance (DH got laid off, we couldn't afford COBRA, and I recently became a WOHM but don't have benefits yet). When we did have insurance, I got all our neb supplies through their mail-order partner. Before we lost insurance I stockpiled supplies. There are a bunch of masks/tubing and filters in DS's underwear drawer.



4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.


We are using the generic (again stockpiled before we lost insurance). I have not noticed a difference. Our main problem with this medication is that DS is prone to nosebleeds and the Pulmicort/generic make them much worse. Our doctor and our pharmacist have both told me that this is a known (but uncommon) side effect.



5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.


At this time, we have not yet tried an inhaler. I'm not sure how DS would do with one. But I would be interested in having him try an inhaler with a spacer. This would give an option to use a different controller medication than Pulmiocrt and help with the nosebleed issue.



1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?


I only have one child. But two of DS's cousins have/had asthma. The older one (age 12) seems to have outgrown it. The younger one (age 4) has very mild asthma symptoms. SIL thinks she will outgrow it too.

DS was bon vaginally 10 days late by induced labor.



2. Does your DC vomit during bad asthma flares?


No. As I wrote above, last year DS only had asthma attacks when sick, but he never vomitted from it. He rarely vomits anyway.



3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)


I have never had a problem getting my son's doctors to talk to me and we see many, many specialists since DS has autism and albinism as well as asthma (we seem to have bad luck with the letter "A" :shrug: ). I do ask a lot of questions and then repeat the key points back to make sure I have them right. I also do a lot of research on my own so I know what to ask the doctor about.

If your doctor isn't treating you with respect, you should find a new doctor.

[catsnkid]

Don't know if DS has asthma yet, he is 5 mo old. However, we have been battling a stupid cough for a month and he has been on inhalers since columbus day! He was also c-section at 42 weeks.

We had one neb with the mask at the doctors, he screamed a few weeks ago. He started with a spacer inhaler w/small mask, tolerates it well. The doctor just gave us a nebulizer today. He had a treatment with the one you put in your mouth, I just held it there or if he spit it out put it by his nose for a few minutes, which she said was fine.

I had some slight asthma symtoms over the years but nothing major, DH outgrew whatever he may have had but was quite sick as a baby.

[ladysoapmaker]

I have a couple questions too, if you have some time!

1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?

2. Does your DC vomit during bad asthma flares?

3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)

Lily

How did your DD tolerate H1N1?


1. Currently only one child has asthma.
2. No she does however, my asthma acts up when my acid reflux acts up.
3. I fully believe in being an advocate for my child. Research what you can.

DD has not gotten H1N1 yet. I'm scared that she will get it and have complications.

Jen

[bubbaray]

1. Where do you think your DC is from a diagnosis perspective? Are you confident that the asthma diagnosis is accurate from the ped and going from there, or are you planning on seeing a specialist?

DD#1 has asthma. Triggers are her seasonal allergies and colds/flu. She's been diagnosed since the age of 13m. Yes, confident in the diagnosis and yes, she sees a pediatric asthma and allergy specialist (he has a dual specialty in immunology and respirology).

2. At age 5 and older, are you still doing the mask, or have you taught DC to use the tube thing they just put their mouth around? I feel like I'd rather stick with the mask, but I don't want to treat him like a baby if it's time to move on to the tube. Then again, it's not like a developmental milestone, and I don't see the mask stunting his maturity. I dunno ... what do you do?

Nope, not doing the nebulizer. Our specialist d/n like them and wants kids off of them asap. He is the director of the asthma and allergy clinic at Children's here and the protocol for clinic patients and at the Children's ER is aerosol meds via aerochamber and mask depending on age of child.

3. Where do you get your masks? I get the cups sets from Walgreens, which they have behind the counter (last I checked) for five bucks.

We get our aerochambers from our drugstore. We use this one: http://www.trudellmed.com/Consumers/cn_aerochamber_max_vhc.asp (http://www.trudellmed.com/Consumers/cn_aerochamber_max_vhc.asp) The yellow version with the mask for ages 1-5. We have tried the older kids (girls) version in pink without the mask, but she's not ready for that.

4. Has your insurance company forced the the generic pulmicourt yet, or are you still using the brand name stuff? If the former, then do you see a difference? Cuz I feel like ever since the switch, he's not done as well.

I don't think generic Pulmicort is sold here or our insurance would have forced us to at least try it (Blue Cross). DD#1 has been using Pulmicort (brand) since June. She has done quite well on it, MUCH better than Flovent.

5. Have you taught DC to use an inhaler more full-time in a more fully functional manner yet? I'm a little apprehensive about that.

You mean, without an aerochamber? No. She has aerochambers at daycare and at school, and at home. I also keep one in my van. Ventolin with each of those aerochambers. Pulmicort we keep at home. When we travel, we take 2 of each. Along with EpiPens, but that's a whole different issue....

[bubbaray]

1. If you have more than one child - do they both have asthma? And, if you don't mind sharing - we're your kids c/s babies?

Both of my girls were c/s (DD#1 emergency, DD#2 scheduled). So far, only DD#1 has asthma.

2. Does your DC vomit during bad asthma flares?

No, but she has come close when the coughing gets so bad.

3. Do you have any other advice on playing an active role in DC's treatment? (or getting the Dr.s to talk to you?)

I had to become *that* parent this past spring. DD#1's specialist put her on Flovent and she became unbearable to live with. Seriously. I asked him to try a different drug, but he refused. So, I took her off the Flovent. It was either that or DH and I were going to move out. It was horrible. She ended up in the ER with a severe attack, on oral prednisone. It was horrible. 3 docs and they couldn't get her O2 sats up to even 90 after 4 treatments in the ER. It was really really scary. After that, her specialist agreed to trial Pulicort. It as been going really well.

[lilycat88]

Interesting. DDs pulmonologist asked about behavioral issues at every appointment at the beginning when we were trying to get the regimen solidified. And, she warned us what to look for and to call her right away for a change if we saw any issues. We've never had any issues with meds, luckily. Albuterol makes some kids wild but Susanna can have a breathing treatment right before bed and goes to sleep.

It's sad when we have to become "that parent" because doctors won't listen and be partners in our DCs care.

[DrSally]

As a lifelong asthmatic with a child with asthma I would recommend you insist on being referred to an asthma specialist. There is so much research on asthma that a pediatrician can not be expected read it all. The biggest thing is unless a child is actively having an asthma attack using Albuteral is not recommended because it can create an environment where it's easier for the child to have asthma attacks.

I have to go to a meeting so I'll answer the rest of your question later if you'd like.

Good Luck,
Jen

I've heard you guys mention this before. I'll have to tell my sister, who's 2 yo DD has reactive airway disease and is on maintenence albuteral (I think).

[Fairy]

So when did I post this, Monday? That is the day that DS's NotTheFluSoTheySayButI'mNotSoSure had launched him into a full asthma episode, I didn't feel satisfied with what the ped had to say, and I said, BBB'ers, HELP! As a result, I now have an appointment to have DS see the Pulminologist on -- wait for it --

DECEMBER 15th

Where he'll have two hours of testing and diagnosis. This guy's out of Children's Memorial, Evanston, and HPH with his office in Glenview (for those of you who are local). I liked what I heard just over the phone. I'm having his full file faxed to their office.

In the meantime, DS was flaring RIGHTNOW. I had the nightmare night of DS having a full-on asthma attack while he was sleeping!, called the doctor, and she prescribed the actual pred, which I welcomed at that point. Had to get him out of bed as ya can't just leave 'em at home! In his jammies, crying he wanted to be in his bed, but the McDonald's cookie and milk made him happier. Gave him the pred, and boy did he hate the taste of that stuff. This morning, he was, indeed, a bit PMS'y. Very very cranky. Which is very very not like him. Had to fight to get the prednisone dose in him this AM. Tonight should be fun between getting him to take it and the side effects.

It's crazy, the treating doc said the triggering illness probably wasn't H1N1, the doc last night over the phone said it sounded like classic H1N1 (other than the throwing up), and his regular doc missed the asthma attack. I know we're all just human, but I'm SICK of my child HACKING without any kind of RELIEF, even with the albuterol every time he picks up a cold! Can't wait for the specialist appointment.

This post should probably have been in the Bitching Post. Sorry. Thanks for sharing your experiences, everyone, it helped me alot.

[DrSally]

.

It's crazy, the treating doc said the triggering illness probably wasn't H1N1, the doc last night over the phone said it sounded like classic H1N1 (other than the throwing up), and his regular doc missed the asthma attack. I know we're all just human, but I'm SICK of my child HACKING without any kind of RELIEF, even with the albuterol every time he picks up a cold! Can't wait for the specialist appointment.

.

That is VERY frustrating! For the specialist, did you ask them to call you if they have a cancellation btwn now and then? I did that for my 2 month out derm appt., and one of the offices actually did call back with an appt. the next week. They may ask you to call them instead to check for openings. I did this as well, and was able to get a same week appt. several times.

[alexsmommy]

So when did I post this, Monday? That is the day that DS's NotTheFluSoTheySayButI'mNotSoSure had launched him into a full asthma episode, I didn't feel satisfied with what the ped had to say, and I said, BBB'ers, HELP! As a result, I now have an appointment to have DS see the Pulminologist on -- wait for it --

DECEMBER 15th

Where he'll have two hours of testing and diagnosis. This guy's out of Children's Memorial, Evanston, and HPH with his office in Glenview (for those of you who are local). I liked what I heard just over the phone. I'm having his full file faxed to their office.

In the meantime, DS was flaring RIGHTNOW. I had the nightmare night of DS having a full-on asthma attack while he was sleeping!, called the doctor, and she prescribed the actual pred, which I welcomed at that point. Had to get him out of bed as ya can't just leave 'em at home! In his jammies, crying he wanted to be in his bed, but the McDonald's cookie and milk made him happier. Gave him the pred, and boy did he hate the taste of that stuff. This morning, he was, indeed, a bit PMS'y. Very very cranky. Which is very very not like him. Had to fight to get the prednisone dose in him this AM. Tonight should be fun between getting him to take it and the side effects.

It's crazy, the treating doc said the triggering illness probably wasn't H1N1, the doc last night over the phone said it sounded like classic H1N1 (other than the throwing up), and his regular doc missed the asthma attack. I know we're all just human, but I'm SICK of my child HACKING without any kind of RELIEF, even with the albuterol every time he picks up a cold! Can't wait for the specialist appointment.

This post should probably have been in the Bitching Post. Sorry. Thanks for sharing your experiences, everyone, it helped me alot.

Mmm, update when his appt is to say if you like this guy.

On Monday DS1 spiked a fever of 102.4 at school that was 103.4 by the time we got to the ped two hours later. He also had body aches and a headache. They didn't test for H1N1 but assumed it was and started him in Tamiflu immediately. It's strange how different peds are coming up with different solutions. I have to say, I had reservations about Tamiflu but I am a BELIEVER now. We have not had DS1 avoid anything that included a fever from going into his chest and round the clock nebs, usually ending in pred. rx. They started to give him Motrin at the office but I told them that typically if his fever is that high he will vomit up the first dose and since we were ten minutes from home I'd just do it there in case he vomited. Sure enough, gave it to him, and he vomited and then went to sleep immediately. So no motrin in system. DH picked up the Tamiflu rx and I woke him to give it to him. Seven hours later he woke up with a much reduced fever. He went back to school today. Unheard of for us - even regular flu is usually a three day illness for him. He had no side effects from the Tamiflu. I'm on it too and I've had some slight insomnia, but nothing else.
Fairy I don't know if your DS has ever had pred, but DS1 usually feels much better within 6-12 hours of starting it for us. I hope you have the same luck.

[Fairy]

That is VERY frustrating! For the specialist, did you ask them to call you if they have a cancellation btwn now and then? I did that for my 2 month out derm appt., and one of the offices actually did call back with an appt. the next week. They may ask you to call them instead to check for openings. I did this as well, and was able to get a same week appt. several times.

Yes, actually I'm on the cancellation wait list. I'm hoping to get a call. I will drop everything to get him in whenever they have an appt. Thanks for the tip, tho!

[Fairy]

Mmm, update when his appt is to say if you like this guy.

On Monday DS1 spiked a fever of 102.4 at school that was 103.4 by the time we got to the ped two hours later. He also had body aches and a headache. They didn't test for H1N1 but assumed it was and started him in Tamiflu immediately. It's strange how different peds are coming up with different solutions. I have to say, I had reservations about Tamiflu but I am a BELIEVER now. We have not had DS1 avoid anything that included a fever from going into his chest and round the clock nebs, usually ending in pred. rx. They started to give him Motrin at the office but I told them that typically if his fever is that high he will vomit up the first dose and since we were ten minutes from home I'd just do it there in case he vomited. Sure enough, gave it to him, and he vomited and then went to sleep immediately. So no motrin in system. DH picked up the Tamiflu rx and I woke him to give it to him. Seven hours later he woke up with a much reduced fever. He went back to school today. Unheard of for us - even regular flu is usually a three day illness for him. He had no side effects from the Tamiflu. I'm on it too and I've had some slight insomnia, but nothing else.
Fairy I don't know if your DS has ever had pred, but DS1 usually feels much better within 6-12 hours of starting it for us. I hope you have the same luck.

Thanks, Alaina. My ped is one of 10 in the practice, and you get who you get if your regular guy isn't there that day, which mine was not. Day one, he is REALLY sick, 103.5, just like yours. The treating doc I like VERY much, and she was sure it was strep due to vomiting, but nope. Tested negative for any flu. Miserable test with the swab up your sinuses. Hated giving him the test, and now taht I know that a negative is maybe and not a definitive negative, we won't be doing that test again. No asthma problems that day, just the flu stuff. She said Tamiflu only really takes a day off the flu and the side effects are yuck and yadda yadda yadda, so we decided to wait for the 24 hour strep test. When it came up negative the next day, he was SO much better, so we just let it run its course. Next day, cough started, Monday it was insane, and you know the rest. Now, I took him in Monday, and that's our regular ped, and I'm ticked taht he missed the asthma attack, and he said it was only the snot and congestion he was coughing on. Yesterday's doc is my favorite as far as diagnosis and being right on every time (bedside manner is eh), and she called ME today to ensure DS was ok on teh pred! We haven't had pred since he was 16mo, so today was the first time he coudl verbalize how much he hated the stuff. And yeah, tastes like sh*t, apparently. The terribly coughing just breaks my heart, tho.

Thanks muchly, you're right about the pred. It does sound like yours and mine had the same thing, Glad yours is doing better! Will update when we see the pulminologist!

[alexsmommy]

Tested negative for any flu. Miserable test with the swab up your sinuses. Hated giving him the test, and now taht I know that a negative is maybe and not a definitive negative, we won't be doing that test again. Thanks muchly, you're right about the pred. It does sound like yours and mine had the same thing, Glad yours is doing better! Will update when we see the pulminologist!

Yep, the nastiness of the test, the expense, and the false negatives are why my ped isn't testing. She did do a urine test since DS1 wasn't vomiting and at that point his lungs were clear. No sore throat and no hx of strep so she felt no need for that.
Tamiflu tastes just as horribe as pred according to DS1. The "good" thing is he's had pred so many times now he completely understands how much better he feels on it so he took the Tamiflu with no problem. Glad you are seeing improvement.
I told my friend that when you become a mother you should also become psychic so you know how to best treat illness.