SCARED-please help, 3 year old asthma out of control? - Page 37

BYHOPE1113 · 07-25-2005, 11:47 AM

I agree that the tonsils should probably come out, it certainly isn't going to hurt her to have them removed, but why in the world won't they culture that mucous to see what antibiotic will kill that infection?!? Melanie has had an infection for so long it could well be penicillian resistant, the only way to know is to culture it. They cultured the mucous in K's sinuses and found her infection was resistant to penicillian, because she had been on so many antibiotics. Her body had built a resistance to penicillian so Omnicef, Augmentin, Vantin, Ceftin did nothing for her. It took Cipro to kill that infection and she stayed clear until her tubes came out of her ears about 3 months later.

Karly was bad, alot like Melanie is now, so I can definately understand the fatique issue and frustration that Shelley is going through. But I have to say it almost looks like the doctors are ignoring the major tests and I don't understand why. You have to know exactly what your dealing with in order to control it and treat it. And it might be a multiple issue problem. That even makes it harder.

In regards to the genetic testing, I know our specialists it is pretty expensive when it is done right. Maybe that's why they aren't doing it. Ambry Genetics (where K's lab work was sent) tests for over 700 strands of CF and also tests for known polymorphisms. She said smaller labs only test for about 90 strands of CF (the most common forms found) and not polymorphisms. But in Karly's case where we were having a horrible time controlling her asthma and infections that she wouldn't settle for anything but Ambry. It was a real possibility that she had an atypical for of CF because of the symptoms she was having. Turns out she didn't have CF at all but at least I can go to sleep at night knowing that she was tested for 700 different strands not just the most common 90 strands.

Now at some point in the future doctors might change their point of view and say that the M470V polymorphism which K has two of is an atypical form of CF, however our specialist didn't think that would be the case. But if it was the case then we would be notified by her and or the lab with the change of diagnosis.

Kim

moonbec · 07-25-2005, 01:29 PM

I am so grateful to all of you posting on this thread. I know it is extremely hard, Shelley, to be going through this all with Melanie. Because of your postings (and Kim's and Celtic's and others) we are all being educated. I pray you find answers soon and I know I'm not the only one praying for you.

BYHOPE1113 · 07-25-2005, 03:14 PM

I hope that we are all able to learn from this thread. I think it's pretty cool that we can be all over the country and still sharing infomation and knowledge. Hey I've learned a few things here too. I'm always open for new ideas.

Karly has been having lots of trouble again with her sinuses ever since that ear infection she got about 2 1/2 weeks ago. I took her to the doctor because she was having that mild asthma attack. She went through a course of Ceftin but two days after she finished the congestion started back up, (much milder symptoms now than a year ago, a year ago Karly was more like Melanie) Anyway I couldn't get the doctors to put another set of tubes in Karly's ears, they say next time they'll see about it. (SCREAM!!!!!!!!!!!!)

Things were much better when we had our CF/Pulmonary Specialist on board but after she moved to Nebraska in April we have been without one. She told the ENT to put tubes in immediately but the ENT didn't listen, in fact she did the exact opposite. She released Karly and said, if she had 3 - 5 more infections in a year that she would reconsider tubes.

Any way I have made a decision today. I have called a well respected hospital in Fort Worth, Texas that specializes in Pediatric Pulmonary and I'm waiting on a call back to set up an appointment with them. No insult to my ENT who is very nice but she's not an Asthma/Pulmonary Specialist and she doesn't understand that Karly NEEDS tubes in order to let the excess mucous flow.

If I don't do something, Karly is going to start getting alot worse. Just thought I'd share what's going on with us.

Shelly, good luck at the doctor's and hang in there. We are living proof that it will get better.

Kim

babiespalace · 07-26-2005, 11:28 PM

Byhope you know your daghter more then this doctor. I would go to whoever will put the tubes in.

I am so frusterated. Thank you to all of your posts, and I am so glad that we are all learning from these posts. I can't wait till we figure it all out. It has been so very long ago-that my daughter was anywhere close to healthy.

I can say she hasn't had an attack in a while now, but it very sick otherwise from all of the infections running through her. She is still sick. Very congested, coughing and sneezing. I am wondering if this is still the sinus infection. I am sure it is. Anyways-now she is complaining her ear hurts. Could this be another ear infection?? She just had the tubes in about 1 1/2 months ago. Her breathing has been horrible at night and her learning is starting to become impaired. I always brag and my daughter is very smart-she was in the top of the class at her preschool. I was going over her letters today and she knew two of them. Well a month ago she knew almost all of them. I don't understand. She is having a hard time concentrating and hyperactive-or very sleepy. She is getting in trouble at school and she was never like that-she always was a good listener. I don't know if it is from a lack of sleep or being sick or what.

Melanie sees the asthma specialist tomorrow to discuss IVIG therapy. Thursday the pulmonologist-about the sleep study and options, and monday her ENT about the sinuses and toncils... I'll keep you updated on what they say.

Oh also I wanted to ask, about the genetic testing-does insurances cover that??

Thanks bunches
hugs

BYHOPE1113 · 07-27-2005, 11:01 AM

Shelly,

About her ears, the tubes can get stopped up and if that happens then she could have an ear infection. When they get stopped up the excess mucous again has no where to go, much like before she got tubes, therefore the infections starts. It is also possible that a tube has come out but I wouldn't really expect that to happen until about 5 - 6 months. That's when they usually start falling out. Tomorrow have the asthma specialist look in her ears to see if they look okay.

By the way our insurance paid for the genetic testing 100%.