SCARED-please help, 3 year old asthma out of control?

[BYHOPE1113]

WOW!!! You sound like your talking about my 2 1/2 year old. My daughter has severe asthma and it took about 9 months to get it under control somewhat and we still work hard every day to keep it that way. On her first birthday we rushed her to the hospital with her first asthma attack. Scared the life out of me. We tested for everything under the sun to rule out other things besides asthma and we established that she definately has asthma and she also has a Polymorphism called M470V which causes a lot of sinus problems.


We have actually made ALOT of progress in the last year and a half and haven't had to go to the hospital for about 7 months now, before that we were averaging once a month.

When CF/Pulmonary specialist did the genetic testing for CF she also asked that she be tested for any know polymorphism. She tested negative for CF but positive for two M470V polymorphisms (one she got from me and the other from her dad) According to our doctor children with M470V tend to have more pneumonia and/or sinus & ear infections that the average normal child.

The ENT removed her adnoids and put tubes in her ears. That helped alot, however the tubes come out and when they do she starts having major problems again with her asthma because all the excess mucous triggers her asthma. Her third set of tubes just came out and they are wanting to try to get through the summer with having to put new ones in but I don't think its going to work. She's already having a little trouble with her asthma, I find I'm using more medicine to keep it under control.

They tested for allergies and the skin test didn't show she had any but the doctor said because of her young age she needs to be retested. Apparently the allergy test are less accurate on small children. They are going to retest sometime in the future because they are fairly certain she has allergies.

They have her on Zantac for acid reflux - this will trigger asthma. If my daughter doesn't have her Zantac at night she cries out more at night. Don't get me wrong she doesn't sleep well anyway but it's definately worse if we miss her Zantac.

The doctors HIGHLY recommend sinus washing. We do it but not as often as the doctors would like us to. She throws a royal fit. I can't blame her.

Her is her list of med's
Flovent - 4 puffs twice a day (110mcg)
Zyrtec - 5cc's twice a day
Singular - 4mg once a day
Zantac - 4 cc's at night
Sudofed - 5 cc's three times daily

There are other triggers to her asthma but sinus problems is definately our biggest.

By the way we just lost our Pulmonary specialist who did an excellent job helping my daughter. She just moved to Omaha Nebraska. She is in practice there now. Her name is Dr. Bettina Hilman. If by chance you are in that area, I HIGHLY recommend her. She is a one of a kind and Excellent. Nebraska now has the best CF/Pulmonary doctor in my opinion.

[babiespalace]

This forum is excellent with great people. Thank you everyone for helping and a little update.

We seen a new asthma specialist yesterday. They changed her albuterol to xopenex, her flovent to pulmicort 1mg twice a day, put her on nasonex, and patenol eye drops.
the other meds she is on:
prevacid 15 mg
singular 5 mg
zyrtec 1 tsp

he is going to do skin testing for allegies and wants to check her IGG abd IGM to mycoplasma pneumoniae. Not really sure if I think she has that. From what I have read it is pretty short and her asthma has been out of control for a very long time.

I haven't got her most recent blood work back and hoping to get it soon.

But this doctor said her eyes are very irritated and she appears to have allegies, sinusitis and reflux.

I feel like I am getting somewhere.
How long does it take for pulicort to work. He feel she wasn't getting any of the steroid from flovent. She is too young. That could be a big factor.

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[babiespalace]

BYHOPE1113

what exactly is M470V polymorphisms and how is it tested. My daughter was tested for cf but not that. I am from Pittsburgh, PA. I don't even know if she should see a pulonologist? How do you know. They have her seeing an ENT on monday. We are at the doctors 1-2 times per week for some kind of infection, or her asthma. Also what is sinus flushing?? How do you do it. The doctor we seen yesterday he said he could see the draining going down the back of her throat. My daughter just started recently with the ear infections. She has had two in the last 2 months. And she has had reflux since she was born. SHe wake up a lot during the night. She grinds her teeth and jerks all night. And 2-4 times wake up crying and very irritable. I feel so helpless.

[jerrie97]

The Pulmicort is by mask in a nebulizer, right? She'll probably get a LOT more steroid that way. Just make sure that you wipe her face after each Pulmicort treatment -- it's notorious for causing thrush (and for little kids, the thrush appears on the face as well when the mask is used).

Hope no one minds that I'm answering this, but I might as well. M470V polymorphisms are found through cystic fibrosis genetic testing. From what I understand, they are almost like CF mutations, but it's not proven that the polymorphisms cause CF...they can cause CF-like symptoms, however. It's been found that some people with asthma can either have CF polymorphisms or carry a CF gene.

You said you're from Pittsburgh? Is there a children's hospital there? If not, in Phila******a (not sure how close that is to you [not sure why it's being censored either]) there is a children's hospital with an excellent group of pulmonologists who specialize in pulmonary disorder s, particularly asthma and CF.

[celtic_mom]

babiespalace - talk to her ent on monday regarding sinus flushing. Many swear by it. I do it, but I think I am not doing it correctly, so I will be talking to my ent on monday myself. Basically, it is using saline or some other solution (there are many "recipes" on this board) to flush out the sinuses thus clearing out infection and keeping them infection free.

If your DD is only seeing a pediatrician you need to find her a pulmonary specialist immediately. General peds as well as internists (IMO) do not have the knowledge base that specialists have. Their focus is too broad. She should be followed by an ENT, an allergist and a pulmonary specialist. At least that is how I feel as far as my own treatment is concerned. Heck, I also go to an endocrinologist to boot.

I'm glad she is on xopenex now. I think she will get a lot more relief with it. As far as the pulmicort - I know they say up to a week or two, but I believe that it could be as little as a couple of applications. I was on it for a while before switched to advair. Honestly, I think I'd rather be back on the pulmicort.

Have you seen any improvements with the latest med changes? I hope she gets some relief soon! You too! Keep us posted!