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#920958 - 03/12/08 04:56 PM Re: Croup With Striders-AGAIN Skittles
BrendaC Offline
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Sweet Home AL
Please remember my little man tomorrow.
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#921703 - 03/13/08 11:01 AM Re: Croup With Striders-AGAIN BrendaC
DeeQ Offline
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Turnpike Exit 10
He is in my thoughts, Brenda...
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#921866 - 03/13/08 02:57 PM Re: Croup With Striders-AGAIN DeeQ
Snow Bunny Offline
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In the Snow :)
Thoughts and prayers from PA Brenda - I hope all goes well!
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#924786 - 03/18/08 02:36 PM Re: Croup With Striders-AGAIN Snow Bunny
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Brenda - I hope all has gone well. Although not nearly as severe as what he's gone through (or anyone with chronic asthma for that matter), I thought having pneumonia was terrible.

After reading through this thread, I realize it was nothing!
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#925143 - 03/18/08 06:34 PM Re: Croup With Striders-AGAIN Princess Leia
corkygirl Offline
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middle of the country
Brenda, I just read your last post and of-course will send up some prayers for both.
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#931942 - 03/27/08 09:33 PM Re: Croup With Striders-AGAIN Skittles
texasbanker123 Offline
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use the magnusson device

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#931948 - 03/27/08 09:36 PM Re: Croup With Striders-AGAIN texasbanker123
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Brenda,
How are things going?
What did the tests on the 13th show?
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#1144081 - 03/12/09 02:54 PM Re: Croup With Striders-AGAIN QCL
BrendaC Offline
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Update.

My daughter got the results of Kody's latest PH studies today and the doctor has recommended fundoplication surgery. The doctor said that reflux can be managed with diet and medication up to the 4% grade. Kody's results were 13.5%. They will turn the top of his stomach upside down and sew it in place. He will be on a liquid diet for weeks before moving to a soft diet. In looking at WebMD, it appears the surgery lasts for up to 10 years. Most people visiting the site and making comments are having problems so they don't look too comforting. He will no longer be able to burp which can cause stomach pain if he eats something that causes gas. He will not be able to vomit so if he gets sick he may experience extreme nausea because he can't void his system. He may have serious diarrhea following the surgery that may or may not subside in time. Some people find that the reflux problem returns shortly after they have surgery and it can't be helped much because of the scar tissue.

Steph is inclined to follow the doctor's recommendation because she wants so much for Kody's asthma to improve. He has been on bed rest for five weeks this winter because of his asthma and the weak condition of his lungs. The doctor indicated that children usually do better with the fundo surgery because they heal more quickly. But I have to admit that the side effects and potential risks scare me and I'm not sure he will be better off. I lean toward diet restrictions and maybe even a chiropractor. Let's give it 6 months and see if he improves. Surgery is always still an option if other non-invasive measures don't work. But I'm not the Mom and I know I don't have the final say.

It breaks my heart that he might have to go through this. Please pray that God will bring my daughter the resources she needs to make this difficult decision and do what He knows will be in Kody's best interest.
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#1145158 - 03/13/09 09:23 PM Re: Croup With Striders-AGAIN BrendaC
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Sending caring thoughts and prayers your way.

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#1145900 - 03/16/09 09:11 PM Re: Croup With Striders-AGAIN Snowgirl
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I apologize for this being a general statement for anyone that has medical problems that can't be solved, but this is my suggestion. Get to a big city and a big city doctor. I have seen more people misdiagnosed for ailments that were discovered immediately when taken to a specialist in a large city. That may not be possible for some people, but it is scary what some doctors don't know. I will be praying for you.
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#1145909 - 03/16/09 09:34 PM Re: Croup With Striders-AGAIN Comply 101
BrendaC Offline
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You are so right. We are fortunate to be in Birmingham. Whenever I go to the doctor, I am amazed at how many people we have waiting to see our doctors from all over the southeast. Thanks so much for your prayers for my little man.

Kody went for a second opinion this morning. This doctor couldn't believe the extent of damage to his stomach and esophagus as evidenced by the pictures taken during one of the tests (where they implant a camera for two days). She concurred with the other doctor that the surgery was necessary. While my heart is breaking at the thought of this, I guess I am just going to have to resign myself to the fact that it is going to happen.

Thanks to the everyone for their prayers and please keep lifting him up. He has a long, hard summer ahead of him.
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#1154095 - 03/30/09 08:50 PM Re: Croup With Striders-AGAIN BrendaC
BrendaC Offline
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**RANT WARNING**

Well I attended Kody's first baseball game this weekend and I now have a very clear understanding of why this precious child has bleeding ulcers. His stepdad screamed at him from the minute we arrived at the ball field until we left. Kody could do nothing right in his eyes.

I thought Kody was going to start crying when he struck out. He hung his head so low and slumped off the field. He wouldn't even look in our direction. He didn't have to though because I am sure he could hear his stepdad screaming at him the whole time...hit is straight, son....what are you doing...oh my God, keep the bat straight. I wanted to take the nearest bat and end the suffering for us all.

Thank the Lord my husband did not attend this game. You would have to help me bail him out of jail for murder. After the next game, I may need my BOL friends to bail us both out. And believe me, it WILL be premeditated.

So I guess Kody will be undergoing this difficult surgery in 4-6 weeks that probably won't help at all, because the problem will still be there. I think I'm going to cry.
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#1154130 - 03/30/09 09:11 PM Re: Croup With Striders-AGAIN BrendaC
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Oh, I am so sorry. Maybe this should be mentioned to the doctor to see if stress could be an underlying cause...if that hasn't already been considered.

Bring some duct tape next time...if nothing else it might rip a little skin off when he tries to remove it from his mouth.
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#1156185 - 04/02/09 12:45 AM Re: Croup With Striders-AGAIN BrendaC
Kathleen O. Blanchard Offline

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Hey, I had a fundoplication about 15 years ago, long before they could do the mini-surgery they do now. I have a huge scar, but who cares? Wish it had been available years before. I have not had a day of pain since. It was like a miracle. It was worth being able to eat only tiny amounts at first, etc. My esophagus was bleeding from all the damage. I still have no major issues. I can tell it has loosened up a bit, but what a change this made in my life.

I can't vomit, etc. (sorry for being gross) but well worth giving that up for occasional discomfort. No more excrutiating pain, no bleeding, I was heading quickly for cancer from the irritation. It had gone on from when I was a kid and they couldn't do this stuff!

I have asthma and it did make things worse because the acid spills over in the throat and gets into the lungs and bronchial tubes. Get the surgery!!!

EDIT: I should add that while stress never helps, a fundoplication is used to correct a physical abnormality that keeps the bottom of the esophagus open, rather than opening and closing normally. All of the acid in stomach then comes up into the esophagus and throat. It is a serious problem. Acid does not belong in the esophagus and throat.
Last edited by MS Kaybee; 04/02/09 12:23 PM.
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#1156339 - 04/02/09 01:58 PM Re: Croup With Striders-AGAIN Kathleen O. Blanchard
BrendaC Offline
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Kat - That makes me feel much better. One of my concerns from reading the horror stories in the Web MD blog is that he will never be able to eat normally again. Is that just an uncommon side effect for a few unfortunate people? I worry that if he has a coke or something a little spicy two years from now he will be in excruciating pain.

Thank you so much for sharing your experience.

We will probably have to push the surgery back again. His asthma flared yesterday and he had to go back on steroids.
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#1156354 - 04/02/09 02:08 PM Re: Croup With Striders-AGAIN BrendaC
Kathleen O. Blanchard Offline

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Initially, you have to eat small amounts and make sure to chew thoroughly to get very small pieces. That gets better over time but you really can't ever "overeat". I was also advised to always take pills while standing up, and so forth so they have the best opportunity to get down to the stomach and not get stuck. This is because the esophagus is held in a fairly closed position rather than opening and closing.

For me, the excrutiating pain came BEFORE the surgery because the continual acid in the esophagus had burned away the lining and the esophagus was bleeding. You don't want to go there. Also, stomach cells start to attach in the esophagus (Barrett's Cells) and can cause cancer.

So many times I had to have procedures postponed because of asthma flaring up. One time, shortly before my surgery, the hospital (Temple in Philadelphia) had the head of pulmonary do my endoscopy because I had bronchitis. They didn't want to postpone anymore but needed to be very careful because of the bronchitis.



Last edited by MS Kaybee; 04/02/09 02:18 PM.
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#1156855 - 04/02/09 08:18 PM Re: Croup With Striders-AGAIN Kathleen O. Blanchard
BrendaC Offline
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It sounds as if you have not had an easy time of it either.

He had biopsies of his stomach and esophagus a few months ago and then knew that the "same day" procedure wouldn't be same day for him. They don't even try that anymore.

My daughter just called and his pulmonologist has put him back on bed rest and he can't play baseball. He is so sad. She said if he gets better this week he may be able to go outside for a short time for Easter. If not, he'll probably be back in the hospital. They aren't using steroids so that they won't have to postpone the surgery. The doctor said that is going to be the only thing that will even possibly help him.
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#1156995 - 04/02/09 10:54 PM Re: Croup With Striders-AGAIN BrendaC
Kathleen O. Blanchard Offline

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That was the decision in my case and I am sure it was harder for a child in your case. They had tried all the treatments, experimental drugs, etc. Everything stopped working eventually and the bronchitis was so tiring.

The doctor told me they usually have to do this surgery on older people, so the need for needing it redone is not usually an issue!

I have never regretted the surgery.
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#1175696 - 05/05/09 02:21 PM Re: Croup With Striders-AGAIN Kathleen O. Blanchard
BrendaC Offline
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Update - My little man is now on ELEVEN meds for his stomach, sinus infection, allergies and asthma. He seems so depressed, it just breaks my heart. We kept him this weekend and he didn't eat but about 2-3 bites at lunch. He doesn't seem to have the energy to walk across the floor. The appointment with the surgeon is this afternoon.
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#1176335 - 05/05/09 08:07 PM Re: Croup With Striders-AGAIN BrendaC
BrendaC Offline
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Kody's surgery is 5/21. He will go straight into ICU for minimum of 3-4 days due to the current condition of his lungs.
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#1249871 - 09/14/09 07:21 PM Re: Croup With Striders-AGAIN BrendaC
BrendaC Offline
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UPDATE

It has been four months since Kody's fundoplication surgery. He was very good about staying on his liquid diet, but is thrilled to finally be able to have food that is not too lumpy. He misses his shrimp, but that is a small price to pay. He has lost 20-25 lbs and is actually getting skinny.

He went to his pulmonologist today and she was amazed. There was no evidence of asthma in his tests. He has gone from being one of the most heavily medicated patient she had to being on NOTHING for his asthma or stomach. She commented that she had never seen that type of reversal in a condition.

Fall and winter have historically been his worst seasons, so we'll see what happens. He is to rely on albuterol if needed, but they are going to try to avoid any maintainenace drugs right now. It would be so wonderful to have a year without a crisis.

Thanks to everyone for their prayers for my little man. God heard and answered.
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#1249883 - 09/14/09 07:35 PM Re: Croup With Striders-AGAIN BrendaC
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Running and riding everywhere ...
So glad to hear a good update!! smile
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