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

[babiespalace]

thank you, I did read about the sinus flushing. I am a little scared to do it on a 3 year old. I think she may have a sinus infection. When I looked into her nose it was yellow dried. She is producing a lot of drainage.

[BYHOPE1113]

Sorry it took me so long to get back to the board, but I see that swimfast has already address the M470V issue and she's right. M470V can have some the same charactistics as CF but it's not been proven to be CF. From what I understand CF patients tend to have alot of digestive problems as well as mucous problems. M470V is genetic alteration and not all that uncommon in our population, it has simply not been studied extensively until recently.

Our doctor said they found when studying patients with Chronic sinusitis that a large percentage of people with chronic sinusitis also had at least one M470V polymorphism.

How do they test for M470V:

Our doctor drew a vile of blood and sent it to Ambry Genetics in California. Ambry ran two test: One for CF and the results were negative
The second for any known polymorphisms
she was positive for two polymorphisms (M470V/M470V)
one she inherited from me and the other from her dad

There really isn't a cure for M470V because it really isn't a disease. Our doctor says finding out she has two M470V polymorphisms is more of an explanation of why she keeps getting ear infections, sinus infections, pneumonia (all of which triggers her asthma). Patients with M470V just are genetically inclined to get more of these things than the average person because there is excess mucous.

If you find anything new out please pass it along. By the way I found it interesting that my ENT and my pediatrician didn't have a clue what M470V was until our Pulmonary specialist found it. If we hadn't seen a specialist with knowledge about CF I really don't think we would know about this M470V.

[babiespalace]

Thank you, I am going to have to mention that to the asthma doctor until we see a pulmonologist.

We seen the ENT today. He made me feel like we shouldn't be there at first. I told him what was going on and all of her problems and he said well why hasn't she seen a pulmonologist and GI doctor first. I said I don;t know her ped recommended she see you and told him that it sounded like a large airway obstruction when she is sleeping. He wan't her throat and vocal cords checked. I didn't know what to say.

Then when he assessed her he said she had a lot of fluid in her ears. I said yeah she has been like that for months and has had two ear infection. He took her to get her hearing checked and the fluid in her ears. Her hearing was a little off and there was thick fluid in her ears that isn't moving well. He also noted her adnoids were a little enlarged but nothing too much to be concerned with.

He recommened tubes be placed in both ears, her adnoids out and said he would look at her vocal cords while she was under and would be able to tell if she is having acid reflux problems. That is the the extent of it. He wants to do it next thursday. He said if she is still breathing the way she is at night then we will need to see a pulmonologist and GI doctor. But he doesn't want me to see them until he is done with the surgery to see if this cures her.

I am going out of my mind. I stayed up most of the night last night. She has so much problems at night. She gasps a lot and her lungs sound like they stick then she quits breathing for 2-8 secs and gasps again??? Her last asthma doctor said it wasn't sleep apnea becauseshe would stop breathing for longer peroids. My baby woke 4 times last night and when she wakes she just cries and is so irritable. If they don't find something soon and correct it-I am going to lose it. I can't tell you the last night I slept good. It was before Melanie was born.

[BYHOPE1113]

I can can almost hear the deseration in your writing and I understand where you are at and where you are coming from. I've been there and I'm still there. Take a deep breath and get ready a few more reactions like that from other health professionals out there. But don't quit looking for help. Sooner or later you'll find a doctor that cares and has experience with this. You just have to keep looking and don't take no for an answer.

I'm at work right now but I'll write back shortly and I'll gladly help in anyway I can. Remember, I'm not a doctor by any means this is just one mom's experience to another mom, but I've had to fight HARD to get my daughter to the point where we are now and I'll tell you everything we do to stay out of the hospital. Now granted were at the doctors office about 2 - 3 times a month but at least were not in the hospital.

Is she getting breathing treatments during the night? How often? What breathing treatment medication is she on?

I'll get back on the board as soon as I can.

P.S. My mom and dad had the kids Saturday night because it was my anniversery and she said my daughter kept waking up crying and coughing and I told her "Welcome to my World" but I got a good nights sleep. It's like that every night!!! No rest for the weary!

One more thing, don't wait on the pulmonologist make that appointment today.

[celtic_mom]

Babiespalace - I know how frustrating dealing with doctors on your child's behalf can be. My DS was a micro preemie, so needless to say, even 7 years later, I'm still dealing with different specialists and therapists daily. What you need to keep in mind is YOU are the customer. Some docs (and it sounds like this ENT is a prime example) have developed God complexes that make them think that they are doing you a favor by seeing you. When I go to a doctor like that for myself, I don't go back a second time. The problem is for child specialists you are limited.

Anyway, I think tubes are a good thing for many reasons, and if your DD is having drainage problems this will definitely help keep her from getting ear infections on top of everything else. Also, I agree 100% with BYHOPE - get her to a pediatric pulmonologist now. Don't wait to find out if the ENT is right - that just takes too much time and she needs relief NOW.

Do you nebulize her with the xopenex before bedtime? I'm also not a medical expert in any way, but my BF's 2 son's both have asthma and when they are having problems she was told to nebulize before bed to open their lungs up.

Did the ENT say anything about a decongestant? You might want to try some OTC children's antihistamines and decongestants to help dry her out a bit.

One last idea - Is there anyway to prop up the head of her bed at night? I think this would help as well. When I had really bad problems earlier this year, I found propping myself up helped me breath, and therefore sleep, better.