The boys had the follow-up today from their ABX in June. They had to end the cleanout earlier than hoped when their kidney/liver numbers elevated. We were hoping they were stable now, but no.

Both boys sounded good and gained weight but both boys' PFTs were down again since before the cleanout. The doc thinks the meds just didn't have enough time to work, so they both will need another two weeks before school starts. Josh could probably do orals and do ok, but Jesse's pseudo is resistant to so much now, that he will definately need IVs.

They also want Jesse to have nissen surgery since his impedance study showed his coughing was due to silent reflux 11% of the time. They are guessing that this is why he has been so junky too. Obviously he is very upset. I know they often do a nissen on people who are being transplanted, but has anyone here had one for reflux problems? We don't know much about it. We will meet with the surgeon to discuss options.

So although, its not terribly bad news, its not very good either. Starting summer vacation and ending summer vacation on IVs pretty much sucks. AT least they were off for our vacation weeks, but still....

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jane
<BR>
mom of Josh 19 and Jesse 15 both w/cf

I've heard of people with very bad reflux having the Nissen procedure. I've been looking into it for myself actually. I have such bad reflux that I get somach bile/acid that comes up into my throat if I just bend over sometimes.

From what I understand, they basically run the esophogus through the stomach muscle so that it has more protection. This helps keep the valve between the stomach & the esophogus closed so the acid doesn't get up there. I wake up at night choking on acid, so I'm sure that some of it gets by into my lungs too. That may very well be a contributing factor to jesse's "junkiness".

I'm sorry the boys need more meds/procedures. It has been a rough summer for you guys. I hope you can get through this round of meds without the liver problems. (((hugs)))

Stacey

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Wife to David, Mom to Jordan 19 w/cf, Bronson 22 carrier & Mason 14 no cf

sorry- hope things get better soon!

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Fourkidsmom
Step-mom to 18 yr old girl- no cf,
Mom to 17 yr old boy- cf carrier,
Mom to 9 yr old boy w/CF-DDF508, meconium ileus, G-Tube, port, diagnosed when I was 7 months pregnant
Mom to 8 yr old girl- no cf, but chromosome 9q 21.2 - 22.1 deletion & epilepsy, autism, sensory issues,global developmental delays,poor eyesight

Oh no! Jane I was really hoping the boys would end the summer on a good note. I hope after this round the boys catch a break and can just be as close to normal for the start of school.

We did Children's yesterday and will be there all day on Tuesday of next week. Seems
we just miss each other by days.

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Cheryl mom to Malora 17 w/cf

Dang I dont know anything about the surgery but I am surprised It wasn't suggested for me as I have bad reflux...

One thing I'd like to say is that I think the boys drs are on top of things. They sound wonderful.

I hope the abx does the trick.. joni

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Joni 58 y/o f w c/f Married 20 years, Mother of 4 sons, Mima to Richard (4y/o) & Samuel (born 3/22/10)

I'd suggest options like prevacid 30mg 2x/day and regalin before meals before going for options like surgery- my reflux was so bad it had me throwing up, but those meds have it under control and it hasn't been an issue for more than a year now.

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April, 17 years old w/CF and CFRD. "Life is what happens to you when you're busy making other plans" -John Lennon

Dang Jane. I know thiss isn't the way you wanted this visit to go.....

Ann's son, Adam had that surgery and she told me that it was for acid reflux. So, maybe pm her about it.

I will be hoping and praying all goes perfectly and their numbers go up.

Hugs to you my friend,

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Jada,
Zoe's mom

Zoe w/cf, DF508 & 1717-1G~A, MRSA, Enterobactor, Staph, Acinetobacter, Aspergillus, Yeast, Pseudo, & C-Diff

Man I'm really sorry to hear this. It does suck and I hate it for you guys.

I think I've seen lots of references to the nissen for reflux, but I couldn't tell you specifically who.

You know I'm not experienced at all as far as the IVs, but I hope it makes an improvement in PFTs and gets them a start to the school year where they are in super-good shape.



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Dana
mom of two girls
Age 7 DDF508, and age 10 no CF