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Old 11-14-2011, 12:35 PM   #21
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Re: After 6 yrs of illness, possibly cystic fibrosis?

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Originally Posted by sarahannecloud9 View Post
UPDATE:
The results came in for the sweat test and were NEG!! YAY!
Now we have gone up to 1 tsps of his reflux meds. We also have an apt with a GI specialist this week. The pulmonoligist is wanting to do a bronchoscopy when (hopefully) they do the scoping of his stomach and esochasus. Perhaps some of the answers are there. The ent never saw anything, but looking deeper may just be what we need. We will also be discussing any possible food allergies. For now, Cayden is on Qvar, albuteral, and the zantac type meds. It doesn't seem to be making a diff in his breaching and caughing. I just thank the Lord it wasn't Cystic Fibrosis. His # was 10 and they told me that was neg. Thank you to all of you have shared and supported me in this extreamly tough time. I should have shared our story a long time ago. It's a lonely and terrifying road when your child is chronically ill. Sometimes life threatening. You momas are grust great! Bless you all! I will keep the thread updated with any new results. He had a couple more vomiting episodes in the last couple of weeks. The latest, he vomited a small ammount of bright red blood. hat's with the reflux meds. Something has got to give. It just drains the life out of the whole family constantly worring and wondering when the next episode of vomiting or resp distress is going to hit.
So glad to hear the results were negative!!! My son just had a bronchoscopy in September, so feel free to PM me if you have any questions. I really hope you get some answers soon.

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Old 11-14-2011, 12:38 PM   #22
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Re: After 6 yrs of illness, possibly cystic fibrosis?

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So glad to hear the results were negative!!! My son just had a bronchoscopy in September, so feel free to PM me if you have any questions. I really hope you get some answers soon.
Thanks sooo very much hun!
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Old 11-14-2011, 03:29 PM   #23
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

:bighugs: for you mama
I hope you figure it all out!! I tried to read through everything...could it be gluten intolerance/celiac disease or other food allergy? I finally sent out for my own tests for my kids (Enterolab)
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Old 11-14-2011, 05:37 PM   #24
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

Hugs mama. Your son sounds kinda like mine. He used to puke up slime. It was disgusting. They were all sure it was CF, but it wasn't. We ended up with a diagnosis of cough-variant asthma. We also did the sweat test, but it was negative. We do pulmicort twice daily, plus albuterol as needed (up to 5 times a day when he is really bad), flonase, and amoxicillan and orapred when he's really bad from a cold.

Have they done allergy testing? DFS is on Elecare because he cannot tolerate anything else. Every time he got a cold, he coughed til he puked and was on an IV the first year. He was inpatient monthly from Aug-March his first year from colds. Luckily, as soon as he got his J tube, the monthly visits stopped because he can't puke up his formula. However, we are still working on the pulmonary issues.
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Old 11-14-2011, 06:17 PM   #25
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

They did the allergy blood tests and they came up neg and his lucocytes were fine. We will be doing food allergy testing soon I hope.
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Old 11-15-2011, 11:49 AM   #26
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Originally Posted by sarahannecloud9
They did the allergy blood tests and they came up neg and his lucocytes were fine. We will be doing food allergy testing soon I hope.
It is possible to be allergic & have it not show in the blood work. My blood work & skin testing shows nothing but I still carry an epipen & end up calling 911 for allergy attacks at least once a year. It took an elimination diet when I was younger to figure it all out.
I hope you can get to the bottom of what ever is going on. I know this is a frustrating time.
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Old 11-15-2011, 11:57 AM   #27
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

Yay! I've been thinking about you and wondered what happened. I'm so happy that the CF was negative and am hoping you find answers soon.
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Old 11-15-2011, 12:45 PM   #28
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

The Dr. did explain that the allergy blood tests would only be something like 65% accurate. I think in the near future, I will presue that further as well. I'm just scared o put him through the 60 point pricks. I know next to nothing about how scarey or painfull it would be for an almost 7 yo. He tends to still be on the immature side. With all he has gone through, he get's frightened easily. The pulmonoligist said it was simular to accupuncture. Still, he is only 6 and 60 pokes will seam intimidating for him, I'm sure. Bless his heart, yesterday he asked why he was different from everyone elese. I just explained to him that it would be a boring world if we were all the same. And told him that God made us all different and special in our own ways. He pretty much understood most of it. He just wonders why God made him this way. That's a hard one to explain to where he will accept it.

BTW, I have posted this in 2 forums because I was unsure where to get the most input and help.

Again, thanks to all for the support and sharing!!
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Old 11-15-2011, 01:05 PM   #29
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

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Old 12-07-2011, 10:30 AM   #30
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Re: Almost 7 years of chronic illness, finally getting help! Wasn't CF!

We are spending the day prepping for the colonoscopy. We are also going for the ph probe placement, bronchoscopy, and EGD. Poor little Cayden.

Pray for him that everything goes well tomorrow please!

Thanks for all the support.
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