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Severe allergies and asthma
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Mommy2noah4 posted:
I can't begin to tell u how refreshing it was to find this site. My son is 4 and has had severe asthma since he was born. He was premature and had to be on a ventilator so he has premature lungs til he's 8. As any of you know with asthma problems that smaller airways only complicate matters. He has been in the hospital multiple times and on tons of different meds and still has attacks. Every attack lands him in the hospital for a few days. On top of this he has stage 5 allergies to pets, pollens, and mold. I live in northern Minnesota where agriculture is big and he is stuck inside all the time. The dr. said he is a bubble boy. Every time he goes outside for any length of time he has an attack. He spent 15 days in the Peds ICU on an experimental machine administering 30 liters of oxygen to him to keep his o2 sats above 85%. They told us at that point that he was fighting for his life and they didn't know what else they could do. It's been a year since then and he is doing better but he still has episodes and every one lands him in the hospital on o2. Nobody I know has kids with asthma and they just don't understand. This is the hardest thing I've ever done and sometimes I feel like I just can't handle anymore. He was back in the hospital a few weeks ago and after about half an hour at the ER they took us to a bigger hospital a few hours away because of his history they didn't think they could handle him at our local hospital. I hate that he can't have a childhood. How can u keep a 4 year old inside when it's beautiful outside and his older brother wants to play. He is on singulair and flovent now but is taking huge doses just to be able to breathe. We have been on pulmacort, atrovent,advair and now the Flovent and every time they just keep giving him more and more steroids. I hate giving him all these steroids but the dr. in no uncertain words said if we didn't they would call social services on us. I do give him the meds but I hate it and worry about the side effects long term. Well that is my story in a nut shell and I'd love to hear some advice or suggestions of what to do inside all the time. I even have to homeschool him because he can't be around other kids with pets. I just need someone to talk to. Thanks so much for your time and prayers.

Mommy2noah4 Rose
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Aqua14 responded:
Do you consult with an allergist for his asthma care? That would be essential. I wonder whether playing outside wearing an N 95 rated face mask would help.

If it's any comfort, when my son was diagnosed with asthma years ago the allergist put him on Flovent. Per his allergist Flovent is the one inhaled steroid that is best for kids because it has a very low systemic effect -- i.e., the medication almost completely stays in the lungs and doesn't have an effect on the rest of the body. An allergist could explain to you the long term effects, but usually the ability to breathe trumps any side effects unless they're serious.

I also wonder whether allergy shots (i.e., allergen immunotherapy) would help him in the long run. It would take 3-5 years to reach full effect, but desensitizing him to allergens would reduce his attacks and allow him more freedom in his life. I know the shots have worked very well for me.

Hopefully some of this helps you. Take care & good luck. Judy
 
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Mommy2noah4 replied to Aqua14's response:
Thanks for the reply. Yes I have consulted with an allergist and they said he is too young for the allergy shots and for now he has to just stay inside. So far I do like the Flovent but hate how it affects his behavior. He was a very relaxed low key kid and now he can't sit still and throws fits and wakes up multiple times in the night etc... It is all overwhelming and this didn't start until shortly after he started taking it. We do have a mask for the times he does have to be outside but the dr. said to limit using it to only a few times a month. The best treatment for him right now is to stay protected indoors. The Dr. said Noah is the sickest patient he has ever treated in over 30 years of being a dr. He was off the charts for his allergies to dogs and pretty much everybody I know has a dog. It's so bad that if he was playing outside and someone came by walking their dog and the wind was blowing it could make him stop breathing . I'm just so tired now and don't know what else to do. The poor boy doesn't have a childhood until he is at least 8 years old. My heart just hurts for him. And up til now I haven't had anyone to talk to that knows what I'm going through. It seems like unless u have a kid with asthma you can't understand how serious it really can be. Thanks for the reply and please keep him in your prayers if you think of it. Rose
 
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sgbl88 replied to Mommy2noah4's response:
HI,
You may want to get a second opinion. My allergist treats very young children with severe allergies. I know she treats 2 year old. I have seen infants being tested.
Hugs and prayers.
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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Aqua14 replied to sgbl88's response:
I agree with Sonya but would go further -- if you can afford it, consider getting your son evaluated at Mayo Clinic. The care there would be at a higher level and a better evaluation than the care available in northern Minnesota, so maybe there are some tactics that Mayo can suggest that your normal providers can implement. Just a thought, hope it helps. Take care & good luck. Judy
 
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sgbl88 replied to Aqua14's response:
If Mayo doesn't work out for you, here are some options for researching a good doctor near you:

http://aaaai.execinc.com/find-an-allergist/

http://www.acaai.org/allergist/Pages/locate_an_allergist.aspx

www.healthgrades.com

The first two are the certifying boards for allergy, asthma and immunology specialists. Their doctors search engines will give you doctors that have been certified. You will find some doctors with FAAAAI or FACAAI after their names. These doctors have gone the extra mile to not olnly be certified, but also became Fellows in that organization. There are a few doctors that have gone even further and met the requirements for fellowships in both organizations. My doctor has done that. Any doctor that has met the requirements to become a fellow in either organiztion has a better chance of being a good doctor, although there are plenty of good doctors who have not done so. Those tow sites would be excellent starting places.

Healthgrades is a good resource as they allow patients to review the doctors. You can see what other patients have said about the doctor.

I hope that helps you.

Please keep us updated on your son's condition.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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Mommy2noah4 replied to sgbl88's response:
We have not tried Mayo but we did go to Children's Hospital in Minneapolis and they told us the same thing. They tested him for cystic fibrosis and that came back negative. They just said he has severe acute asthma, severe allergies and premature lungs so there is nothing more they can do until he is old enough for the allergy shots. We have gotten two different opinions now and they are in agreement at this time. It looks like we are just stuck until he can handle shots. He is also very small for his age. He'll be 5 in November and he only weighs 32#. My two year old daughter weighs 30#. He is in the 2nd percentile for his weight so maybe he is just too small or weak for the shots??? They just said he can't have them until he is 8. I will look into maybe another dr. but after seeing two different ones and they both say the same thing I don't know much else we can do. He has been hospitalized numerous times and they always have to put him on IV steroids and the dr said he can't have many more hospitalizations before his body will start depending on them. I stay home so he doesn't have to be in daycare and I have done extensive cleaning to make sure my house is the safest place for him but it doesn't seem to matter what I do he still winds up with asthma attacks now and then. My heart just breaks for him. I really wish I could just take this away so he could be normal. It's so hard to see your child suffer. He is the sweetest and best little boy ever. I hate seeing him hurt.

Does anyone have any ideas of things we could do inside that would help keep his mind off of wanting to be outside and playing with his friends? I don't like tv so he is allowed one movie a week but I don't want him glued to the tv either. I am going to start him in school this year to see if that will help keep him occupied but I am trying to come up with things we can do together or by himself that don't involve outside. Thanks for the advice and I'll do some looking around for more qualified Dr's.

Rose
 
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amcate replied to Mommy2noah4's response:
National Jewish is another good respiratory hospital. You asked about indoor activities. I don't hang around much with kids, but a friend of mine does, and recommended the following: you can google "the toymaker", and a site should come up with toys to make at home that he and his brother could then race, Disney Family Fun Magazine should have ideas and perhaps would be at your local library, and Wii computer game has some games that have turn taking and physical activity. I don't know how much physical activity he tolerates, but also mini trampolines or obstacle courses are what come to my mind.

Early Childhood Intervention programs might consider him to be at risk for delay of social skills or other developmental skills, and if he were 0-3 years old he might qualify for someone to come by your place and give you ideas. However, since he is 4 he would be too old for that program. Still, you might want to call your local Early Childhood Intervention program to see if there is a program for his age. They normally transition kids to another program at age 3, but I don't know which program they transfer them too.

Hope this helps.
 
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sgbl88 replied to Mommy2noah4's response:
I just had a few thoughts, assuming he can mingle with others some.

Childrens museums are great places for at leasat some activity, just be sure to keep hand sanitizer available. There are science, history, and art museums.

Have you looked into Gymboree or similar acrivities? Some gymanstics gyms will have "play" days for kids. Tumbling or martial arts classes may be a good option for him as well.

Swimming is also recommended for asthmatics. Personally, I can't go near a pool because of the heat, humidity and cholorine, but it does help a lot of people.

Other possible activities include fencing, drama, dance. My nieces were in Y sports at that age - volleyball and basketball.

You will have to think outside the box. Maybe do a goodle search of chilrens activities in your area.

Please keep us posted on what you find and how he is doing.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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Ellie_dog replied to sgbl88's response:
Just found this site, so forgive me if I am repeating too much. Denver Jewish is the nation's premier resource for lung-related issues and I highly recommend a consult for any child whose asthma is uncontrolled. It may not be asthma (and not CF) or could be a combination of things local doctors are overlooking.

I have a highly allergic child who was diagnosed with asthma as a child. She is severely allergic and has also ended up in the hospital with abysmal pulse ox numbers during a flare. Her IG(E) levels are over 5000, which contributes to her fragile nature. I think your child is too young, but we switched inhalers often. Flovent did not work for us, we needed an LABA - first symbicort and now dulera. She is much more stabile on these, but she is still severely asthmatic. She is allergic to cold, and her exercise has been restricted at school, including playground time (she has to sit in office). I think singulair is evil (it crosses the blood/brain barrier), but you need to find the cocktail that is most effective. This may include chromylin, antihistamines, pressure vests, etc. Pool: avoid. Chlorine is HUGE asthma trigger.
 
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Mommy2noah4 replied to Ellie_dog's response:
I'll have to look at Denver Jewish. He can't mingle with other kids because of how severe his allergy to pets is. If they have a cat or dog he absolutely cannot be around them because if they have any pet hair or dander on them and that transfers to him it can cause an asthma attack. I hate all these inhalers and we have been on them all except the dulera. Our dr. Did reccomend that as the next step but they want to give him some more time on the Flovent first as dulera is our last option. We have been down to Minneapolis to the children's hospital and saw a world renowned pediatric pulmonologist and allergist. He is working with our family dr. as well as seeing him every 3 months in Minneapolis. What should we do about the singular. I hate it too and it's causing him to be a totally different boy, he is so easily upsetted and he wakes up multiple times at night and just isn't growing. I'm so concerned for his longtime health as well as what we are dealing with now. I just don't want him to have kidney problems or serious development issues because of all the steroids he has been on. What can we do as parents to get the best care? I always wonder how much of these meds are just for the dr's gain than anything. They don't seem to hesitate to just write another perscription for anything and everything. Our hospital in my town won't even admit him, they automatically transfer him to a large hospital 1.5 hours away at first sign of asthma attack. I can't keep doing this to him and just want him to have a life. I want him to play with other kids and go to the park etc... There is only so much you can do inside. We originally had looked at building a pool house and putting in an indoor pool but now with the mold issue and chlorine thats a no go as well. I also feel like his siblings are suffering too because I am making them stay inside because it's not fair to Noah. We also can't fly so if we went to Denver Jewish we would have to drive because people can bring their pets on as carry ons now so he can't be in an airplane either. I don't mean to sound so negative but I am so tired and my heart breaks for him and I just don't know what I can do. I hate giving him steroids but they have seemed to help some... It is nice to have someone to talk to about all this. I don't know anyone else with kids with asthma and they just don't understand unless they have been in that same situation. I guess for now it's just play with legos and color etc... I get so bored being inside these 4 walls all the time I can't imagine what he feels like. I guess we should do some more checking. We got a second opinion and they pretty much said the same thing. One more thing my sons IGE levels for 17,000 last check and they want to recheck that the end of this month.
 
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amcate replied to Mommy2noah4's response:
Don't worry about sounding negative. I don't have a kid with asthma, but I have adult onset asthma, and most of the time people who don't deal with it themselves (or have a kid with it) don't understand. There are many things people take for granted, so don't worry about sounding negative. It is difficult to deal with, and then most other people don't understand on top of it.

National Jewish hospital is rated the number 1 respiratory hospital in America, and its located in Denver, CO. I'm assuming its the same as Denver Jewish. So, if you can't find it under Denver Jewish, you may want to try looking for it under National Jewish.

Singular has some problems with it, as many of the asthma drugs do in terms of psychiatric effects. It's kind of a damn if you do and damn if you don't situation.
 
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Mommy2noah4 replied to amcate's response:
Thanks for the encouragement. It really helps. I'm going to mention National Jewish to my dr. Next month and see what he recommends and if he'll send us a referral. It never hurts to try. I think I'm going to ask if they can take him off singulair too. I just hate what it's doing to him. He is not himself when he is on it.

I'll try to keep being positive and looking for the good. There is enough bad in this world and I don't want Noah to feel like he did anything wrong by having asthma. I just wish he could have somewhat of a childhood and not just remember hospitals and dr's.


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