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Urethra Implantation Surgery for Kidney Reflux Grade 4
Dear Friends,
Hi finetune8 here again and it's the anniversary of my son's VCUG and ultrasound tests. Which means, I am going carzy trying to find the ideal surgery situation for my son. He is three now so he is stronger but his right kidney is smaller then his left and still shows Grade 4 reflux. Based on my research and many questions to various doctors, Deflux is NOT the best option for Grade 4 or 5 reflux. Please note concerned parents that have children with reflux, the BEST doctor I am told to have deflux procedure done is with Dr. Kirsch at Georgia Pediatric Urology. He is teaching doctors around the states how to do the deflux procedure.
For those that can please help answer some of these questions for me I am truly grateful:
Urethra reimplantation is the route I have chosen to go however there are two ways to do this procedure. The first is going through the bladder "inside" to move the tubes and the second is going "outside" the bladder to make a trough then reinsert the tubes then put the muscle back on top to act as the valve flap to keep urine going back up. The 1st procedure I am told causes bladder spasms and for a 3 year old trying to keep him in bed in the hospital with pain concerns me. I am leaning towards the outside procedure and being that he only has reflux on the right thought we just had to do the right. Has anyone out there decided to do this procedure for BOTH sides and what are the real risks to this procedure? Nobody can provide stats and info on why 20% of patients show signs of reflux with the OTHER side after deflux OR surgery. So to prevent having to undergo more anesthesia, more surgery I am told to consider doing both sides for reimplantation. This procedure is 97-99 % success rate versus the 35 or more % success rate for deflux with Grade 4. Thank you for helping me to try and make the best decision for my awesome son! Happy Holidays!!finetune8@yahoo.com.
Comments
Good luck!
I don't have any good advice for you, sorry to say, but since I was the one to post about my daughter's reflux I wanted to say that I sympathize. I guess our experience so far has been to go conservatively with younger kids. (My daughter is also 3.)
We have been very fortunate in that the reflux is improving and we will be able to avoid surgery. I hope that you will be able to find good information!
Shaun
www.homeschoolblogger.com/shaunms
New to Reflux
Great to know we are not alone! My son, our first, just made 6 months and he was diagnosed with Grade V (on both sides) when he was just 5 weeks old after a 4 day stay in the hospital, a story that must be similar to yours, I'm sure. He is on a daily dose of antibiotics. I'm doing more research since we have his 6 month followup with the specialist in a few weeks. I've got all the stats but have not done much research on sergery options. Have any of you gone through the sergery yet? If so, how did your little one do? Hope all is well, everday without fever is a good day in my house! Michelle
when do you start to worry
At the age of 15 mo my daughter got very ill, and was misdiagnosed for TWO weeks. It wasn't until I got very stern...ok down right nasty with my doc office that they took it more seriously and found a UTI. Becouse of the severity she had to have injections for several days followed by oral antibiotics. (This caused other issues that we are still dealing with at 21 mo.) 2 mo later she was diagnosed with kidney reflux. Her Urologist is great and says that she could outgrow it...however everyone I have talked to with this illness has had to proceed with the surgery. I am also worried about the antibiotics (currently taking a sulfa bases suspension) even though they are low dose. Dose anyone have any thoughs on how many children actually out grow it? Also when do you worry about a fever? When is it worth getting catherized for a sample. And why do I get resistance when I call and want one done...due to symptoms of course. Any thoughts would be wonderful.
My dd was diagnosed at 2
My dd was diagnosed at 2 months old. She finally out grew it when she turned 4. I was all prepared to tell the dr to do surgery when she was tested last. I also worried about the antibiotics she was taking. Had a friend tell me how it messed up her dd stomach before she had surgery at age 6. We always went and give a urine sample whenever her fever was over 100, unless we knew what the fever was caused by i.e the flu. Towards the end she learned to give a sample on the toilet. We would both cry when she had to be catherized. We also had a very bad experience when our local hosiptal did the vcug. Finally learned that going to a childrens hospital in Portland, Or was worth the 3 hr drive.
I hope this helps I know everyone I talked to had the surgery so we feel very lucky. There have been no lasting effects of the antibiotics.
Don't know if this is related but she was my only child that wet the bed until she was 5. She just finally outgrew this.
Good luck and let me know how your daughter is doing.
Michelle
deflux calcification in my 9 yr old
Hi, there.
LK, I feel for you. Our daughter went through the same thing at 3 yrs old (kidney infection for a week, hospitalized w/high fever). She had antibiotics until 5 yo & then deflux on both sides at Hopkins. All was fine until she was 7; then rapid weight gain of 20 lbs in 5 months; episodic side pain every 4-6 weeks. I've spent the last 2 yrs dragging her from doc to doc asking "Could this be her kidneys" with a resounding NO the answer again & again. We finally got a (wrong) diagnosis of kidney stones which turned out to be calcification of the deflux implants. Our doc said it was the first time he had seen this in his patients; the first filing he found was filed literally an hour before her surgery. She has substantial constipation & possible thyroid issues now. Watch our for side pain & insist on a CT scan if nothing shows up. Bc she had normal creatinine levels, no UTIs and normal urinalyses, no other test was done. Her left kidney now looks pretty bad on CT scan & ultrasound. Good luck!
we had deflux
My little girl was diagnosed with grade two reflux on the left side at 10 months old after a weekend of very high fevers and antibiotic injections twice daily at the hospital. We started a sulfa based antibiotic daily and stayed on that till she was 3 and a half. She did potty train early due to having to catch samples to avoid being catherized. At age 3 1/2 she still had no improvment in her condition and the twice yearly cystograms were a nightmare for both of us. So we had deflux preformed. Everything went great. She had a 6 month cystogram and was told we need not come back to the specialist unless we had problems. She is not almost 7 and we just had a routine urine sample ran as part of her yearly exam. It showed white cells and we are currently waiting on culture results. Anyway it is hard to find stats on the ones that are not successful most things paint this surgery to be wonderful and a cure all for her grade. also someone above mentioned stomach issues with long term antibiotics. For the last 2 years we have been dealing with stomach aches 2 to 4 times per week. Any suggestions? The doctor also mentiomed she had enlarged lymph nodes on her exam and said not to worry it is probably nothing but we would run labs to rule out lymphoma anyway. How can one not worry!? any thoughts apprieciated.
Thanks!
Shaun,
Can you tell me what you have learned if anything from doctors at your end about surgery? I am leaning towards the reimplantaion "Inside" method, but it can cause bladder spasms and possible problems urinating afterwards. My son is three and I can't bear him being in pain. Do you know of any males that have had this procedure done at a young age and are now adults? Thanks for your help!!
Sincerely with Blessings,
Nicole (Finetune8)
Reflux
I just wanted to say to you I am sorry you and your child are having to go through this. My son was diagnosed before birth with Grade 4 Reflux of the left kidney. (He is 2 now) So from the day he was born he has been on antibiotics daily. I was concerned about this but the docs have reassured me several times that it is for his benefit and things will be fine. So I am trusting them...they are the ones with the degrees. Now as far as when you should worry with fever and when should you request a cath be done...well you need to get specific with your urologist on what they expect. My urologist told me that anytime my son gets a fever of 100.5 (which technically isn't a fever according to pediatricians) I am to get him cath'd. Even if he is diagnosed with an "ear infection" he is to be cath'd to be on the safe side. You have to be forcefull with the docs but thank goodness my pediatrician is very understanding of this problem my son has and understands the importance of catching a UTI before it does damage. Bit of advice, don't let them (peds or hospital) do a bag (another way of catching urine without cathing the child)...this normally will show that you have a uti because of bacteria on the outside of the body getting mixed in with the sample of urine. It is a waste of time, I have had in done 2x's and still had to cath so don't bother.
As for surgery, we have talked with the urologist, he wants to wait...at some point we will take "holidays" from the antibiotic and see what happens, then if that goes well we will get off of it and see what happens. If things don't work out then surgery or meds will be a decision we will make. My poor son has been to the ER several times not to mention the doctors office with lots of illnesses, getting cathed everytime there was a fever involved. I hate that he has to go through this and wish that it would just go away. Unfortunately I don't believe that will happen...so we will just have to be patient and wait and see. I hope that this has helped you in some way. Just remember, get your info from the urologist on what they want done when your daughter is sick and pass this info on to the pediatrician or other docs involved with her care. Let them know you are serious about the care she receives and expect them to follow the urologist's instructions when needed. Take care.
reflux
Hi, I was reading your post about the reflux and I am going thru that with my daughter right now who is 1. She has grade 2 on both sides. We live outside of Eugene OR a couple hours from portland---Which local hospital did you start out at before going to Portland? Can I ask who your ped urologist is? Our ped urologist wants to do the deflux next week, he said it is a great procedure and works about 80 percent of the time and would make it to where she didn't need to be on antibiotics everyday. Did any one ever want you to do the deflux? Any advice would be great---
thanks so much
Tracie
Reflux
I had surgical reimplantation when I was four(now 17,) and it cured the UTI's that I had almost everyday. I was on antibiotics a considerable amount of the time and was in a large amount of pain. Despite this the doctors were reluctant to give me the operation but after the best part of a year in the same condition it was decided that it would be the best thing to do. However for the past 2 years i have been getting recurring cystitis more than 5 times each year. I'm not sure if this has any connection to my earlier condition however, I am wandering whether the same problem can occur after the operation has taken place previously. If anybody does know it would be highly beneficial and greatly appreciated.
My son whom is three years
My son whom is three years now was diagnosed with kidney reflux on his left side before he was born. He had surgery at 7 mths old. We have yearly check up now since his last check up his left kidney has gotten better praise you God! But, I'm still worry and I'm still praying. He is not on any meds. I'm glad I found this sight it gives me some state of hope. I pray the best for you all! Just hold on to the hope that they say that eventually they grow out of it. Keep the faith.
Urethral Reimplantation
My daughter had reflux of both kidneys with a rating of 4. She had her operation at the age of 3 at Children's Specialied Hospital 9 years ago and has been symptom free since then. No UTI's or anything! So there is hope! I was told she could have problems with bladder infections down the road but so far, so good! She does occasionally have blood in her urine when she goes for physicals but no white cells show up or a problem with her urine culture.
My advice, ask questions and read all of the medical information you can get & on the doctors you select! Good luck to everyone!
I also found out that this runs in my family. Just an afterthought.
reflux
My one year old daughter has reflux grade 2 and her ped urologist wants to do the deflux next week--he thinks it is great and should work and hopefully she will never need another vcug done he said but now I read all this and worry about her future and if she could still good kidney damage without any signs and how would be know? I'm very stressed and scared and want to do the right thing? If my doctor doesn't ever do another vcug how do we really know if it worked or not and I have also read about calcification on the deflux implant causing problems later on--any advice????
thanks
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