Question for all of you parents out there!!

[Disneymom4123]

: To make a long story short about two weeks ago dd 2 had went to the er because she has a fever of 103 and was unable to keep anything down. They diganosed here with a uti and told us follow up with our pcp. So two days later we see the pcp and he gives a a script for a vcug. She had it done today and the radiologist said that she infact has it and we have to start her on antibiotics so we are waiting for her pcp to call in the stuff she needs. We were told most kids out grow this but in a rare case they sometimes need to do surgery. Has anyone ever been through this?! Dh says im worrying to much but this is the first time she's ever been sick

 

[mangosink]

does she have kidney reflux?

 

[Disneymom4123]

They radiolgist didn't say all he said was that she has what ever it is on both sides and showed us the pics with the dye. Told us she needs antibiotics and she may outgorw it. Called my pcp after her apt and left a message with the front offfice to see about the antibiotics and they called me and said he would be calling and he never did. So i'm calling again tom.

 

[twinmom319]

Sounds like she has reflux of the urine from her bladder to her kidneys. This makes her kidneys more susceptible to infection. Most of the time it's due to the way her anatomy is when she's little and she could very well grow out of it, but in the meantime will need antibiotics at a low dose daily to stop infections before they start.
Scary, but very common and probably everything will be fine!
Hope this helps!
Alex

 

[mskay]

My niece has this same thing that PP described. She is on a low daily dose of anitibiotics. From the follow-ups that she has had, she is probably not going to "outgrow" it and will have to have the surgery. But, I don't know how common it is to not outgrow it. I know it's a big deal when it's your child, though. You don't want them to even have a sniffle. You can PM me if you want. I'll try to get more info from my sister and let you know.

 

[mangosink]

They radiolgist didn't say all he said was that she has what ever it is on both sides and showed us the pics with the dye. Told us she needs antibiotics and she may outgorw it. Called my pcp after her apt and left a message with the front offfice to see about the antibiotics and they called me and said he would be calling and he never did. So i'm calling again tom.

Sounds like urinary reflux. THey don't do VCUGs to diagnose a UTI, they do them to diagnose reflux. twinmom described it accurately. The antibiotics should help keep any further UTIs from occuring.

 

[Ariel8676]

My dd has mild reflux...she had the VCUG when she was about 2(they had to knock her out though ) Anyway i would suggest taking her to a Pediatric Urologist to follow up and reread the test results and work with them.
We were also told to not let her sit in baths too long (the dirty water) , wash with a very mild soap (we use all natural soaps from the health food stores), and no fabric softener on her clothes.
Keep us updated and give her a big hug from her Dis friends!

 

[beattyfamily]

My DD now 7, was born with one kidney AND reflux. They determined it right away (they wanted her tested that young since she only had one kidney) and she was put on antibiotics to prevent UTI.

She saw an expert at Children's Hospital monthly. He told me based on her level of reflux and how it wasn't getting better each month that she may not outgrow it. He was of the opinion that surgery would be a good idea for her but our choice.

He said it could be fixed with surgery or we just could keep waiting and hope for the best and keep her on the antibiotics till age 2 or 3 and decide then. I couldn't bear to have her go through the surgery at an older age where she'd be more aware of everything so we made the tough decision to do the surgery.

She had it done at 8 months old. She's doing GREAT!

Good luck and best wishes.

 

[alloyd1170]

We went through this just after Thanksgiving with our 1 yr old. Talk about a trauma! Once she was treated and cured of the UTI we had to have a VCUG and ultrasound. Our ped said its standard procedure after one UTI these days because theyve found that people who had lots of UTI as children now have kidney problems as adults. The VCUG dr told me (and I saw it) that dd has kidney reflux on one side, grade 1 (least severe). Our ped referred us to an urologist (who weve dealt with before for our son). He said that dd will most likely grow out of it, but that she has to remain on antibiotics for at least 2 years. She has to have an ultrasound of her kidneys every 6 mos to be sure theyre working right. Then once a year she has to repeat the VCUG (oh how fun) for at least 2 more years (she has to "pass" it for two years in a row) before they declare her "cured".

I am not crazy about her having to take antibiotics for at least 2 years. The dr gave me two other options. One, major surgery to reverse the tube, was not recommended for her case. The other is called deflux. It only takes about 5 minutes, but has to be done in the hospital as they sedate her. They insert a cath and inject a gel where the tube and bladder (or was it kidney) meet. The gel will eventually dissovle leaving her own tissue there, closing any gaps and making the valve work better so urine doesnt flow back towards her kidney. It has something like a 95% success rate for her grade of reflux. Afterwards, she would only need to be on antibiotics for 2-3 mos as long as tests showed it worked. I opted for this procedure, but darn it, our insurance and Medicaid are the only two that dont cover it! Im so mad! The dr's office has tried recoding and the insurance company requested more research to prove its successful. So we are in a holding pattern until they get off their butts and apporve it!

alison

 

[Disneymom4123]

Everyone thank you so much for your replys it made me feel so much better to see that there are many things out there to help her . It's just so scary because she is so young and as some of you have said to have someone who is two years old having to take meds every day just isn't right! I am going to call the dr again since he has not called me back yetI will keep you all posted and thanks again for helping me out!

 

[Disneymom4123]

Well the dr just called and said she needs the surgery he called her in a antibiotic and she deff needs the surgery so we called a urologist. Those of you who have been through the surgery. Please tell me what they do and how the recovery time is. Will she be a inpatient in the hospital or does she go home? I can't stop crying right now I am so upset.

 

[beattyfamily]

Well the dr just called and said she needs the surgery he called her in a antibiotic and she deff needs the surgery so we called a urologist. Those of you who have been through the surgery. Please tell me what they do and how the recovery time is. Will she be a inpatient in the hospital or does she go home? I can't stop crying right now I am so upset.

Oh, I'm so sorry. I know how scary it is. Did he say why? Is her reflux level a high one so the chance of her growing out of it is low?

It's been a few years for us. DD was 8 months old and she's now 7.

I believe she wa in for 2 nights at the most. I remember they let me sleep next to her. I remember the worst part was saying goodbye and then seeing her for the first time afterwards. But it will be so great for her not to have to take the medicine for a long time and no more UTI.

I remember being in the waiting room and their having a way to update me every 1/2 hour or so which was nice. It went smoothly.

She had a cast on to cover the IV (so she wouldn't touch it). She also had a catheter in. So the first pee after surgery will be important.

The recovery was fast and went smoothly. They made her incision right at the bikini line. You can barely see it now.

I'm so sorry. I'll say a prayer for you, your DD and your family. I'm sure everything will be fine.

Please keep us posted.

 

[Disneymom4123]

On a scale from 1-5 one being not bad she was a 4. I am so worried

 

[beattyfamily]

On a scale from 1-5 one being not bad she was a 4. I am so worried

Oh then that is why. My DD was also a 4.

I know you are worried. Of course you are, but it will be better for her in the long run.

Do you know where she will have it yet? Do you have a Children's Hospital in your city? My DD's was done at Children's Hospital in Boston. They were wonderful.

Please keep us posted.

 

[Disneymom4123]

Children's Hospital pittsburgh. I know they are good my dh is a manager for thier comp dept . How many days did your dd have to stay in the hospital?

 

[beattyfamily]

Children's Hospital pittsburgh. I know they are good my dh is a manager for thier comp dept . How many days did your dd have to stay in the hospital?

Oh that's great. Your DD will be in good hands.

Honestly I'm not 100% sure since it's been almost 7 years ago but I think it was 2 nights. I know I slept next to her for at least two nights.

 

[Disneymom4123]

I've been doing alot of reading it seems to be a very low risk surgery. I think i'm worrying to much! But what mom wouldn't?!

 

[WindyCityDisney]

My son was diagnosed with vesicouretal reflux at 12 weeks, grade 3 on 1 side and grade 4 on the other side. He had no UTI but the enlarged kidney was noticed on an abdominal ultrasound for other reasons. After consulting 3 urologists, we decided to go with the recommended course of antibiotics. At his 15 month re-check, he had totally self-corrected.

We were also told to have our older daughter tested, even though she had been totally asymptomatic. I resisted for a while, but ended up having her tested and she also had it -- but much less severely. She also was fine at her 4 year old exam, making the docs think that she had been self-correcting for a while.

Both kids were on bactrin for about 18 months total. Zach was actually off of it before Kaitlyn was.

I know how scary it can be. Feel free to send me a PM if you have any questions.

{{{{Hugs}}}}

 

[PrincessasMommy]

My 2nd dd has vesicouretal reflux - grade 3. She was diagnosed @ 10 months. She goes to the Nepherology Clinic @ Hospital for Sick Children in Toronto and started daily doses of Trimethoprim (sp?) when she was 10 months old. She is also anemic (not related). Her urologist said it usually self-corrects to some degree and not to rush to operate. Potty training often solves the UTI problem if they are encouraged to "void' often. By 3 she was off meds and now at 4 the Urologist has released her back to our family dr. She said that it may come up again in future as it is still there - now a grade 1 - but we haven't had an infection in a year!! YAY!

Good Luck!

 

[Disneymom4123]

Ashley was graded with a four on both sides i'm thinking that's why her pcp said surgery is the only way. We have a apt may the 8th to see a urologist and i hope he says the meds will be the only course of treatment. At the same time I am prepared because of what her pcp said. It is just very scary to see a little two year old in surgery. May the 8th is the first apt they had open but i'm going to call tom and see if there's is any way to move it up. As I have been stressing about this!!