My dear son...

• By Ellie_M
• Reply 3731550
• January 23, 2013 at 8:19 am
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We ditched advair for dulera and found better control w it. (9 yo severe asthmatic). Get an appointment at Denver Jewish and reclaim his life... Also we have tried chromyln and a biological intal? There are many more options/cocktails to try... The pft and chest also help inform your plan.... If you are in a sib acute flair - you need prednisone.... Good luck.

• By Jmum20
• Reply 3732025
• January 23, 2013 at 10:47 am
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Thank you EllieM! Our specialist just told us about Dulera at our last regular appointment, but he said that because it isn't yet recommended for kids under 12, we would wait till later this year to try it since my son turns 12 in just a few months. It's encouraging to know it has been a positive switch for your kiddo, makes me feel better about my son switching, maybe we should just do it now. My son was on prednisone already about 2-weeks ago. Should he go back on it? He is well controlled at home, its just when we go outside, he has an attack...especially since its in the morning and the temperature continues to hover around 25-30 degrees. Anyways, some of the other things that you have suggested, I have never even heard of! Makes me really think, there's probably a lot I still don't know about out there, to help control my son's asthma!! I should be talking to our specialist today, so I can ask him about them. Thank you so much for sharing, we need all the help we can get!

• By Ellie_M
• Reply 3732307
• January 23, 2013 at 12:13 pm
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IT is strong medicine. If you miss it, your child will have a problem. There are serious warnings on it about risk of attacks because of how strong it is. But, if your child is remodeling his airways because his asthma is not in control, this is a better option.

COLD: yes, there a serious risk of spasm due to cold air. Buy ninja hoods for skiing and scarves and anything else and only breathe air through these. Get a doctor's order for your child to NOT walk between classes or go on playground etc. when temps drop too far without these provisions, etc. We have to do this. Also, never forget, an Epi Pen can turn around an Asthma attack that has gone too far for an inhaler. You should have that on your school plan, too.

In the winter, sub acute flares are common and we go on and off bursts of prednisone a lot. If we get an infection, then we are on it for a longer time. Your asthma plan should spell all of this out, including his peak flow goals, etc. What were his PFTs like? We get them all the time, plus CTs to see about intersistial swelling, remodeling, mucus... there is a lot to worry about if you have a child w serious asthma.

• By Jmum20
• Reply 3733186
• January 23, 2013 at 4:58 pm
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So I just talked to my son's asthma specialist and they want to refer him to a speech therapist to see if he has any vocal chord dysfunction...I understand why they are wanting to rule this out as the vocal chords can slam shut & cause breathing issues too, but what has me concerned is that this had never been investigated before and they are acting like there must be "something else" wrong with my son, not just the asthma attacks cause by the cold air....also, the nurse acted so extremely unaware of our history and then had the nerve to get impatient and defensive when I asked about some of the other options we might need for his asthma, like prednisone, etc...I feel like they are sending us on a wild goose chase again!! This happened when my son was younger before he was diagnosed with asthma in the ER...they thought he had GERD and made us go through several difficult tests. They even wanted to have him take this terrible medicine to stop the GERD, which as it turned out, he never had!!! Omgsh, I'm so frustrated right now.

EllieM, as for the PFT, I am not even sure I know what that is...and CT scan, he's never had one ever...I think our insurance is holding back this information or maybe not using certain diagnostic tools due to expense or something!! :( I don't know but I have never heard of remodeling, or some of the other things you speak of, so makes me think my specialist isn't so special anymore...what should I do at this point? We are not financially able to go outside of our insurance & this is the specialist provided...ugh...what would you do? How expensive is Jewish National? I looked at their website, how invasive is the tests and how receptive/helpful are they to newcomers/outsiders? My dear sons peak flow was in the "green" and he was doing wonderfully all this past year! finally controlled!! but now we have this setback it has just become a mountain out of a molehill!!!!

• By Ellie_M
• Reply 3733352
• January 23, 2013 at 5:55 pm
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So, I am just a mom, but I do have a 9 YO with severe, persistent asthma. She has had it since about 15 months old and it is serious. She has been hospitalized for viral exacerbation syndrome at least three times, the last time her pulse ox was at 82 (w. 60 mg prednisone and 60% O2) and we almost had to intubate. So, it is chronic, serious, and a daily concern. Control each and every day is a priority for us. We use a peak flow meter and a pulse oximeter to help us understand where her lungs are at home. Her doctor conducts several types of Pulmonary Function Tests during the year (up to 6 rounds per year maybe, some more involved, some less) to measure how allergic her airways are and how her large and small airways are functioning. (Sometimes they are awesome, in subacute flares, her small airway performance is <19% of expected - so, we do prednisone to reduce the swelling then retest to make sure the lungs are back in their maintenance shape!) We also do episodic low-radiation CT scans - this sees mucus, intersistial swelling, hyperinflation, etc. as well as any perm. damage that the asthma is doing to the lungs. If there is too much mucus, like in a CF patient, you can get a pressure vest to clear it. So, you see there are a variety of diagnostic tools and remedies intended to keep your child in a state of health despite a chronic condition.

Other tests: IG(E) blood level. Asthmatics can be given Xolair to reduce IG(E) levels to improve allergic asthma.

You do not need to go to DJ -but our MD told us it is the best in the US. We may end up there, our 9 YO is already going on supplemental o2 at night. We go to Yale, if you are near a teaching/research hospital it may be enough for a second opinion that works you. None of these tests are big deals, but take time. Here is the exception: Some MDs want to do a scope to look for inflammation and infection at the cellular level. (We have not done that because of allergies to anesthesia.) I would say only let a center of excellence recommend and conduct this; similarly, only let a large, reputable lab deal with the cultures. You may never need this. This is done when Asthma is problematic and disease and issues OTHER than asthma start to become suspect. A PFT helps point to this, too.

Don't freak out. But don't let him be out of control using emergency inhaler without clear plan to work his case. GOOD LUCK! :)

What is airway remodeling?: http://asthma.about.com/od/asthmabasic1/qt/aiwayremodeling.htm
http://www.nationaljewish.org/programs/pediatric/asthma/

• By Jmum20
• Reply 3734321
• January 23, 2013 at 11:53 pm
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Ellie M, I am so thankful for all of the info you have shared with me today. I guess I am just a bit overwhelmed...I will try not to freak out, for now;) I am just thankful to know there is more out there for my son, and that makes me feel a little better. I hope & pray your dear little one gets better, and that your struggle eases...you have been through so much!! Many Blessings, thank you for all you have shared....I will let you know how tomorrow goes.

• By beachflat
• Reply 3734571
• January 24, 2013 at 4:47 am
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Just to say my son had severe asthma from age 1-8 years, with regular hospital admissions and prednisone. I have been told it can go in 7 year cycles and the last 5 years since he was 8 have been better. I am currently trying grape seed extract which I heard some mums on here say worked for their children. Anything that can reduce inflammation and strengthen immune system must help.Good luck to you all.

• By Jmum20
• Reply 3735343
• January 24, 2013 at 10:54 am
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Thank you Beachflat for your response! I have been hearing about grape seed oil too, how does everyone use it though? Is it something that can be bought in a pill-form? Or do you just incorporate a certain amount into food? I will have to check into that!:) I bought my son a Balakalava after a friend suggested it yesterday. It's those things that skiers & snowboarders use. It's made out of a thick-nylon type material that he can wear over his nose/mouth when walking in between classes outside. We also pulled him out of his PE class as it was 1st thing in the morning, and a real hurdle for him. We are going to try to get back to school today, it has come up to a "balmy" 36-37 degrees, so I am cautiously optimistic...I hope this all works!!

• By Jmum20
• Reply 3738745
• January 25, 2013 at 10:40 am
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So dear son made it through a day of school! He used his Balaklava, (which I found out is the same thing as a ninja hood..thank you for the suggestion EllieM!!;) & took his inhaler before going outside to go to school. We set up several plans for him with the school nurse & his counselor. He was of course welcomed back by all his friends, and that boosted his confidence. The temp outside this morning is 40+ degrees or so...and it's been raining, adding moisture into the air. He is so much more comfortable, and it looks like we might actually be getting through this rough patch after all.

• By bayoubill
• Reply 3743734
• January 26, 2013 at 8:44 pm
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If for some reason he doesn't have something to cover his mouth when going out - I have read taking a pause before moving (walking etc) in cold air can give the body a little time to adjust to the temperature difference.

• By beachflat
• Reply 3747692
• January 28, 2013 at 6:46 am
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Balaclava was suggested for my son but he unfortunately refused to wear it. In the cold he used to come up in big itchy hives all over his body and the doctor said it was cold air allergy. Cover the nose and the mouth for best results because that way he is breathing in warm not cold air to his lungs.Grape seed extract is taken as a tablet you can buy it in health food shops. It is granules so you probably could empty it and mix it with food. Hes only been on it a week but have to say not noticed any big difference yet.

• By Jmum20
• Reply 3750868 · In reply to 3743734 by bayoubill
• January 28, 2013 at 11:51 pm
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Thank you Bayoubill I will share this technique with him, just in case he doesn't have something to cover his mouth/nose when he goes outside. He does have to go outdoors to go in between classes, so it's very possible this situation will happen at some point.

Beachflat, I know what you mean about not wanting to wear the Balaklava...at first my son was refusing because he didn't want to stand out with something so different. Fortunately when he put it on at lunch time, some of his friends said he looked "ninja" so he suddenly thought it was cool!:) I am going to look into the grapeseed supplements, I sure hope it starts working for your kiddo! We actually have a family friend who's daughter has a cold temperature allergy. It has been really difficult for them too! But they home-school so its a little easier for educating, and controlling daily environment.