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Parents with Kids who have Asthma
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RedBerryMom posted:
Hi, I am looking to get a network of parents involved with one another. I think it's so important to have parents who can understand and relate to other parents dealing with children who have asthma. The long nights in the ER, the emotional ride dealing with attacks, medication questions, all of that.

Please PM me, don't be shy. I would love to be able to get in touch and share my story as well as hear yours.

My daughter is 6 years old, she has had asthma since she was six months old. It's been a real journey. Sometimes other parents just dont understand exactly what we go through, and how exausting it is. Worrying about your child's next breath.

I was guilty of that too when I was a young woman, thinking asthma wasn't a big deal. But it is. Very scary.

Look forward to touching base with some of the parents.

Sincerely, RBM
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Aqua14 responded:
Hi there,

My son age 12 (almost 13) has asthma, but it's very mild for most of the year until we get to mold season in late summer, or until he gets a cold. So I'm not sure whether I would be right for your network.

I have another kind of problem, where my son feels good and therefore "forgets" to take his inhaled steroid and allergy meds. I talk to him a lot about the fact that the lung inflammation of asthma is silent and unnoticeable, but that it has to be controlled so that he can continue feeling good and normal and not have to go on pred. (He gets that, he hates pred.) I think he understands, but he would rather not have the hassle of daily meds. (For that matter, he would also rather not deal with mundane daily tasks like brushing his teeth!!)

I'd like some suggestions from parents with older kids on how you deal with that problem. Do you remind and nag them and stand over them while they take their meds, or do you slowly transfer responsibility to them, and if so, how best to do that?

Take care. Judy
 
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RedBerryMom responded:
Judy you are great for the network,

I would love to be able to get in touch with you. Is there a way?

Yeah my daughter hates the daily routine of meds too. Pred as well. But she needs it so, I am very consistent with it.
 
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Aydenmom responded:
Hi...

I have a 13 month old with astma.. im very lost when it comes to his astma. i would like to get in touch with you to find out what i can do to keep his symptoms under controll and to keep him from being sick all the time..

Thanks in advance for all the help.. Nicky
 
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RedBerryMom responded:
Nicky, I dont know if I can post an email address here or not?..

I would love to email you and chat. I know how hard it is. My daughter was six months when she was diagnosed.
 
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Scoobydooh13 responded:
Hi, I have a 4 year old son with Asthma and Allergies. He had eczema when he was 2 months old. They finally sent us to a pediatrician last month after having to go to emergency 4 times in the last year and a half, who finally diagnosed my son with asthma. He goes for allergy testing in 2 weeks and I am not sure what to expect. I have been so stressed and scared by all this. Every time he coughs, I have to take a deep breath. He is on Flovent everyday and has the steroid for the really bad days. Basically what I am looking for, is other parents who are going through this. I think there is a real need for support where Asthma is concerned. It is a really scary disease.

Please if you have any information, please let me know.

Thanks for your time

Scoobydooh13
 
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Chjali responded:
Hi,

My son is 9 and was diagnosed with asthma when he was 6. You are so right in how exhausting it is. I never knew anyone with asthma so when my son was diagnosed I was completely lost. He always suffered from bronchitis and bad colds since he was a baby, but I was never told me it was asthma. He's also had eczema and allergies since he was an infant. I ended up changing pediatricians and that's when we found out it was asthma. He had a really bad asthma attack and we ended in the hospital for a week. He takes Singulair and was switched from Flovent to Advair 3 months ago.

He doesn't have it all year, but when he does it's terrible. Last night I was up until midnight because he wouldn't stop coughing and was up this morning at 3:00 am. This time it's a dry cough that won't stop but with no wheezing. We're going back to the doctor today.

Take care.
 
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Squea responded:
I'm not a parent, but I can share what it was like to be a kid with asthma (diagnosed when I was 3).

It was a journey for my parents, let me tell you...

3: diagnosed with asthma, ear tubes for chronic ear infections, hospital visits for asthma

4: The ear infections were no more...now it was chronic tonsilitis. Had my tonsils and adenoids removed because they were so inflamed my parents could hear me snore from across the house...hospital visits for asthma

8: Tested for allergies (this is the old testing..1988..where they did series of shots into your arm). I had a reaction, lost consciousness, and started convulsing. I woke up on the floor with every nurse and dr. in the office (it seemed like) in the room. My mom thought I died. ER visits at least 2x a year.

I always seemed to miss the first week of school. I'd go the first and second day...then I'd be home for a week with an asthma attack...

Usually I'd wake up in the middle of the night with a full blown ER visit attack. My grandmother remembers us at her apartment, me about age 5, wheezing, whispering "daddy...i think we have to go 'mergency" From a very early age I figured out my asthma, and I was usually the one who told my parents that I needed an ER visit.

10: 5th grade. Scariest attack ever. It was a Sunday morning. My dad was making pancakes. He was so mad at me b/c I'd wanted a bunch to eat, so he made it for me. I started not feeling well (just icky..not wheezing). I took 2 bites, then pushed it away. He sent me to my room...boy did he feel bad 30 minutes later! Mom came up to check on me and I couldn't breathe. I was so weak in those 30 minutes that she had to carry me down the stairs. I missed a week of school for that, all day in the ER. We where in Chicago. I remember having multiple trips of blood draws and lung xrays that winter. That attack really screwed up my lungs. After I really wasn't "better" in a week, my Dr. sent me back to school....I wasn't allowed to participate in recess or PE for a month. And the entire winter I wasn't allowed outside b/c the cold air was too hard on my lungs. To go from car to building, I had to wear a ski mask to help warm up the air before it hit my lungs...

After 5th grade, we moved to TX. I immediately started doing better (away from my allergens)...until the people who moved in below us were smokers. After a couple months of that (my parents were house hunting...) my Dr. told them they either needed to buy a house or find a new apartment. Either way we had to move within about a month, or I was going to be in the hospital for an extended stay. My parents put an offer on a house that week, and we moved 3 weeks later...

Since then my asthma has been decently well controlled....Since age 11 I've had one ER visit (and I'm nearly 29). There were a couple close calls where I maybe should have gone. But, I was always lucky to have doctors who listened to the teenager that had been dealing with asthma for so long. I had one doctor who didn't listen to me. My mom asked me to give him a 2nd try since he came highly recommended. After that 2nd visit was less productive than the first, my mom found me a new dr. without me even asking...

My parents were definitely on my team, but they also put the responsibility on me. If I didn't take meds, that was always my choice. I certainly knew what the consequences could be....
 
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MagPrincess responded:
Hi I would love to be on this network.

My daughter was diagnosed with Asthma when she was 16months old. I suspect she had it at birth as she was moaning and was born at 38 weeks 4 days by normal no drug delivery. When i told her asthma doctor this she was shocked our pedi at the time did not act sooner. Needless to say we had already switched pedi's at 13months which is how we got referred to the ear nose and throat doctor who also does adult asthma and put her on predinsone before he could do the surgery for tubes. She had already had 8 ear infections starting at seven months old. she had her tubes done at 18months and has since passed all hearing tests. She was tested for allergies at 21 months and tested positive for mold and pollen(out of 61 outdoor allergens they tested me for i test positve for 32, not surprise she has it too).She has was on Singular and zytec daily from 12 months until recently about three weeks ago we noticed she had become very anxious and was having what appeared to be panic attacks over things that never bothered her before( i have OCD and GAD) so we took her off the singular and put her on inhaled Qvar 80 twice a day. We see the asthma doctor on monday as she is now coughing sounding very chesty and has asked twice since sunday for her "breather" so she can stop coughing. She has used a "breather" since she was 12 months and has been on flovent, Proventil, and now Qvar which i like by far better than the proventil. she seems to have more trouble with the swelling than anything else. She also uses veramist as she needs it for nasal congestion. So that is where we are at.

My email is Erfangboner@aboutpride.org

Thank you!
 
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EBROOKE1978 responded:
Hi,

I have a 9 months old that has asthma. He started having respitory problems when he was 2 weeks old. At the age of 2 mos. he had RSV and was in the hospital. Since then, we do breathing treatments pulmecort/albuterol together twice a day and albuterol every 4-6 hours, and steriods. He has already been on prednisone twice. I have been in the ER numerous times. He has had a flare up and we were in the Dr.s office this morning. they gave him a breathing treatment there and to top it off, he has a ear infection. they have him on zyrtec for the runny nose. There are times I don't know what to do and it scares me sometimes they way he breathes. When in doubt, I just take him to the ER if the doctors office is closed. I run the humidifer and prop him up at night, but nothing seems to work. We are both worn out. I was up last night holding/rocking him. He couldn't sleep he was coughing so bad. He will cough so bad he will throw up. It is so awful. I just want to make him feel better and I can't. We go through many sleepless nights.

It's hard sometimes but we get through it. they say he can grow out of it as he gets older. My youngest daughter had it until she was about 5 or 6. She wasn't this bad though. This is the worse I have seen. I have the help of my parents to get me and the baby through it. I am willing to chat with anyone who just needs to vent. It is good to know that I am not alone. Thanks for listening.
 
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gemmsa responded:
yes it is. I am looking forward to a support group so I can deal with it also. for my 6 year old who was diagnosed at age 1. along with severe allergies. to pets. and foods. and the environments. I fine it hard to cope at times. he does miss school certain times of the year. and I would like to find away to make it easier. if someone knows please let them give us both good advice.
 
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Runicrowan responded:
Hi Judy and everyone,

I just found this site and am praying I can get some insight from someone. I have ID twin boys, age 12 (almost) 13, that have had asthma since birth,(they were preemies) they do great on their singular and alavert until the end of the summer when mold season kicks in and they get this HORRIBLE, continuous hack that causes anxiety to kick in and makes it worse. They end up missing weeks of school at the beginning of the year and that causes more anxiety because they're worried about missing school and getting behind, that creates a vicious cycle, and around we go. NOTHING has helped them with this cough, no doctors, meditating to relax , home remedies, prescriptions, nothing. Has anybody else been through the nasty hacking cough that goes on for weeks and weeks with their children? ANY advice to help them would be appreciated.
 
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concrndmom responded:
I can definitely relate to everyone. I've had many sleepless nights. I have a 6 yr. old that was diagnosed w/ asthma at 9 mos. but we've been very blessed to have all the necessary meds and equipment to act right away when he first shows symptoms and have therefore never have had the misfortune of ending up in the E.R. (Maybe his is very mild). But I was very sad to learn that my 12 month old also has it. He's been on Singulair, Zyrtec, Albuterol and Pulmicort but is about the same or progressively getting worse. Was referred to Pulmonologist who gave us Orapred (oral liquid steroid) and Advair. 'Because of all of the commercials I decided to do some research on it and couldn't find alot of info. on adm. to kids younger than 4. So scared to give it to my baby because of all of the side effects (one of which is asthma related death!). Left message for his pediatrician and hope he calls tomorrow to address my concerns.

If anyone can help me by posting your experiences with Advair I would really appreciate it, esp. if your child is younger than 4. I am having sooo much stress over this!
 
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Mattsmom07 responded:
I have a 2 yr old son who has just started on daily pulmacort and albuterol as needed. He had RSV and pneumonia early this year and had to be taken to the emergency room because of his breathing. I was scared to death. After that the dr prescribed him albuterol every 4 hours as needed. Then last week he got another respiratory infection and was having trouble breathing and his dr then prescribed him pulmacort treatments daily. He has been put on pred 3 times this year, I think. He also has had eczema since 2 weeks old and I know asthma can be tied to that. That is just a little history on him. I just wanted to say that I stay terrified that he is going to get sick. Everytime he coughs or sneezes it scares me to death. He started coughing lastnight, and I believe it was due to some allergies also, he had been outside most of the afternoon playing. I just get so scared at night that he may just stop breathing during the night or something and I won't know it. Is that even possible, for them to just stop breathing with asthma, or do they always have the coughing when it its difficult for them to breath?
 
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serenity4us responded:
Hi RBM,

I see that you are looking for a network of parents with children with asthma. I would love to be a part of that network. All growing up I was not exposed to anyone that had asthma. Atleast not in any close proximity. Then I have my second child and I'm thrown into a world of respiratory he**!! I feel like I am completely uneducated still and she is 4 years old. She first started showing problems at 6 weeks old but wasn't diagnosed until 11 months old. In that last year her asthma has gotten increasingly worse and I feel at a loss. When I read your post about the "long nights in the ER, the emotional ride dealing with attacks, medication questions" I was almost in tears, because I know exactly what you mean. So I need help!! I need advice from parents that have been through it.

My first question is if anyone knows the difference between an allergist and a pulmonologist in dealing with asthma. My daughter has other allergies (dogs, peanuts, eczema) so we see an allergist but I asked for a referral to a pulmonologist and was told to wait until I see the allergist in a few weeks. I am being told I should've pushed until I got the referral but I feel like I don't know the best course of action. I don't want to not be an advocate for my child but I feel like I don't know enough about all of this to push anything at this point.

So if anyone has any suggestions on this issue...or any other issue....please let me know!

JAJ


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