Campbell has kidney problems... updated: 12/08/11

[Pudds86]

Well as some of you may know Campbell was in hospital when he was 8 weeks old. He was referred for a kidney scan as matter of routine after having a UTI- plus the doctor was concerned his right kidney was inflamed.

Well, went for the scan last week and I knew something was wrong straight away as the sonographer said we would probably hear from the doctor that day- (we didnt hear until 3 days later though!!). Friday both my husband and I get calls from the doctor's secretary asking us to call them urgently. Doctor spoke to my husband in the end and explained that the scans were abnormal. They could see that the urine was refluxing back into the kidneys. It is afftecting both kidneys not just one. He has put Cam straight back onto antibiotics and is rushing through more scans. We have not had much more information yet though.

It can be two possible outcomes. 1) the valves are not working properly on the kidneys to stop the urine refluxing. This mostly fixes itself as he grows or can be fixed with keyhole surgury. OR 2) there is a blockage somewhere. Recurrent infections can cause scar tissue which can lead to things I dont even want to think about!! Hoping it isnt serious and it gets sorted ASAP.

Fingers crossed for my little guy girls!! So annoyed they've left us not knowing anything. Want the tests now!!!

xx

 

[Laura_C]

Oh honey, I went through a similar situation with Grace. We were very lucky that when she was overdue we had an extra scan as I was worried about her lack of movement. They found during that scan that she had a dilated renal pelvis on the right kidney. They told me that she would need to go on antibiotics when she was born. She was on low dose Trimethoprim up until she was about 2. She used to take it at night before bed. They explained that this was preventative to stop her developing uti's and kidney infections as if they are recurrent it can cause irreparable damage. My poor baby went through so many tests to establish if it was reflux or an obstruction etc. By the age of 2 she had her first normal ultrasound. We were so relieved and they did say they usually grow out of it by the age of 2. With her they think she had a kinked tube and it developed a little slowly but once she was toddling it righted itself.

She is still under urology now but they are hoping she may get discharged after her next outpatient appt in May.

If you want to know anything hun just ask, I've been through lots of tests with Grace so I know what to expect. Apparently it's a very common problem and sometimes surgery is needed to correct it but it is usually very straight forward. We were just lucky is was spotted just before she was born and Grace has never had a uti ever in her life, so the treatment has obviously worked week. She has had meds for a year and a half now and she is right as rain.

I hope you get a good treatment plan sorted for Campbell xxx

 

[Rosie's Mummy]

I cannot imagine the stress and worry that you are going through - I hope that things are resolved in a straightforward manner xx

 

[Mamafy]

Try not to worry hun

My little girl who is 3 1/2 has kidney reflux, she had alot of infections in her first year but none since She has no kidney damage and is fine x

Hope this helps x

 

[Rowesb]

 

[pinkymum]

hope it all turns out ok! X

 

[smess26]

Hugs lovely mwah x x

 

[Pudds86]

Aww thanks girls. That does help a lot. Gosh when he went into hospital back in January it was so frightening. We thought it would just be a one off and to think he could get lots more is horrible! Fingers crossed.

Laura, Trimethoprim is what Cam is on. Low dose of 0.8mg every night. The doctor wants him on it until they find out exactly what is causing the reflux. I am praying it is something he will just grow out of. Apparantly it is more common in girls as they are prone to UTIs with everything down there being so much closer together. Hoping to hear about test this week. What will the next tests be? He has already had an ultrasound...

That does help Mamafy! TY.

Thanks for the hugs girls, will keep you updated xx

 

[ZMD]

Hope your little man is ok Hun xx

 

[Mamafy]

They normally do an ultrasound, xrays, dye xrays (this will be the longest, expect all day), and the catheter test to see what happens when the bladder fills. This isn't a a nice one but its a a one-off.

The dye one will determine the condition of the kidneys.

Katie was on the nightly anti b as well, it increases with their weight and if they have an infection and need an antibiotic you don't take the nightly until you've finished the course. X

 

[mookie]

I hope your gorgeous little man is ok xx

 

[titch]

I hope everything works out alright, it must be such a worry for you

 

[LilyMac]

hope they sort things soon for him hunny, hope you're both ok x

 

[Laura_C]

Exactly what Mamafy said ^^^

The dye test was a long day, Grace had that done when she was only 6 months, was bloody awful as she had to be sedated. They messed up her canula and the isotope had expired by that time so she had to go through it twice - I was fuming!!! I think its called a Gamma Xray??

 

[inky]

oh bless him, it must be so worrying for you, even with advice from others, although it all sounds very helpful, isn't this forum great for this sort of thing?! Fingers crossed he will grow out of it, and thank goodness it was picked up early!! Good luck to you all xxxx

 

[Mamafy]

There's nothing more scarey hearing something and feeling like you're in it alone its nice to know others have been there xxx

 

[Pudds86]

Bit of an update...We had a appointment with the pediatric doctor Campbell is under this morning.

There appears to be 3 things wrong with the scan results.

1) It does look like there is kidney reflux. The are going to so the gamma xray with dye in the bladder to determine this although the doctor saya its likely because the sonographer is one of the best.

2) the Urethras are swollen on both sides. The are inflamed at the top and bottom- This could be caused by the reflux.

and to make matters more complicated...

3) His left kidney is less than half the size of his right one. The are going to do a second dye xray to check the condition of the kidneys. If the left one is functioning less than 15% they may want to remove it. They also want to check for scar tissue.

Feel a bit better knowing a little more details but I want the tests now to make sure its nothing horrid. Laura/Mamafy do they always sedate to do these tests? The doc says with regards to the reflux he will be on antibiotics for the forseeable future and possibly until he is 5 or 6. He said it is something that could have happened either inside or outside the womb but he reckons more likely inside which means it was missed on my scans... I HAD 6 OF THEM! Not impressed.

xxx

 

[Laura_C]

Oh honey, I know how you feel about them missing things on scans. Grace's was missed until she was overdue (had 3 scans in total), I always wonder what might of happened if we knew nothing about it. I also believe they may have missed something with Ethan also (had 5 scans in total), I just don't understand how a baby can go from perfectly healthy to critical in a matter of weeks. My doctor thinks they could have missed a very subtle cardiamyopathy either that or he caught some kind of virus and he rapidly deteriorated. I do worry as he had problems with his kidney function when he was born.

They tried a suppository thing with Grace (up her bum) but she would just poo it out!! In the end I think they gave her something else to sedate her as she didn't appear sedated. By the time she got down for the scan she was beyond zonked, I still feel they gave her too much because they were so disorganised and made out it was because she wasn't taking to it. In my eyes they shouldn't have been rushing such a procedure for such a little baby. It was hell trying to get the canula in her little hand as we struggled to keep her still.

For the gamma xray they have to be very still for quite a while so I imagine he will be sedated, thats what they told me. if it was an older child that they could tell to keep still then its not so much of a problem.

I would say the doctor is right about it happening inside the womb, I was also told that is is a very common anomaly - the most common thing they find in fact.

All I will say from experience is push them if you don't think Campbell is being checked often enough. I think paed urology has a very high patient list. She often gets left and I hear nothing. Appts are always cancelled and delayed. Don't know if this will be the same but it certainly is here. She was supposed to be having regular ultrasounds, I think she has had about 3 her whole life!! I was supposed to see her doctor this month but again it has been cancelled and put back until May. She hasn't seen a doctor for 14 months!

They never really determined the cause of Grace's, they think it was just a developmental thing that has righted as she has grown, they ruled out reflux though from the gamma xray.

Campbell's does sound more complicated but there are lots of things they can do to help this. I really hope that his left kidney function is good honey, i will keep everything crossed for you xxx

 

[tburfield]

Hi Pudds,

Hopefully I can offer a little hope here as we've been through very similar with Kaden.

His scans throughout the pregnancy were all normal, but after he was born he was found to have a small kidney during investigation of a UTI. Our gut feel was this was as a result of the UTI, but we'll never know for sure.

Kaden had to have the nuclear scan (DMSA?) and that determined that his kidney function was a 75/25 split across the two kidneys.

He also has reflux on both sides which he is expected to grow out of by 5 or 6.

Kaden has also since up to a specialist at a London hospital to have his case reviewed.

It was a worrying time as we'd also had the possibilty of an operation to remove the small kidney, but so far that's not been required. Most of this all took place in the first year or so after he was born.

Kaden is now two and a half, and is as active and full of energy as any other toddler, and we don't even think about the kidney stuff from one month to the next. Sure, he's on antibiotics every night, and prob will be until he's five or six, but other than that he's a perfectly happy and bouncy two year old.

We are expecting a second baby in August, and as a result of Kadens issue the baby will go straight onto a precautionary antibiotics to prevent any UTIs from taking place, so probably worth bearing that advice in mind for any future babies, but other than that, just enjoy your son, and remember, we only need one kidney to live perfectly normal lives...

 

[Pudds86]

Thanks girls! I know there are things that can be done but it still worrying! You dont expect anything to be wrong with your little baby! You wouldnt even know anything is wrong with him, he is so content.

Kadens issues sound almost identical. I am hoping the little kidney is functioning properly. I know you only need one kidney to live a normal life but if there is ever a problem with the remaining one you're in trouble. Not that this would ever happen!!!

Hopefully the kidney is just small and there is nothing else to it! Like I said the doctor he has is fabulous and explains everything brilliantly.

Out of curiosity were your babies on the small side? Campbell is 17 weeks and has only just reached 12lb. He is in the 9th centile.

xx