Thursday, 26 June 2014

Living with Kidney Reflux... our story

My youngest daughter S, has Grade 3 Kidney Reflux. When we were trying to diagnose, and finally diagnosed, I was googling all the time, and didn't really find much on the topic. So thought I would blog about it.
 
  • Kidney Reflux or VUR (Vesico-ureteric reflux) is where the valves between the bladder and ureter is not working correctly. This can cause urine to go back into the ureters and travel back as far as the kidneys. If infected urine gets back to the kidneys, damage can be done.
I had all the normal ultrasounds throughout pregnancy, and they all came back normal, I even had a few more then the standard 12 and 20 week scan, as at the 20 week scan S was in a funny position so they couldn't get all the usual measurements they needed, so they bought us back for another scan. We also opted for a 4D scan for our 1 year wedding anniversary present with it being paper. Kidney Reflux is normally picked up at the scans, but S kidney problem was missed on all these occasions, so we thought nothing was wrong. And enjoyed the pregnancy as much as we could whilst suffering SPD.
 
The birth was relatively straight forward, albeit very quick, and I was discharged on the 6 hour turn around. Everything was just perfect. The health visitor came out and done her checks, and then left us to it, without any other visits planned until the various tests they needed in several days or a week. (I cant remember, I just remember it being a lot longer then with my 1st). However on day 3, I remember calling the health visitor out, as I knew something was wrong.  But didn't know exactly what. S was extremely irritable, and upset, and she would curl her whole body up, have a lot of vomit, and it was projectile,  and she just would not settle. For a 3 day old baby, this wasn't normal for us, J usually just fed, slept and pooped. The health visitor came out and put it down to colic, but she explained that didn't usually come in until 2weeks. So we started to pop Infacol into her feeds. (Colic medicine).
  • Colic is trapped wind, indigestion, or a sensitive stomach in babies. Causing frequent crying outbursts in an infant that seems to be fit and healthy.
Lying on her stomach eased the crying...
J suffered colic when she was a baby, so I didn't think it was colic, as in our experience, it was certain times of the day, whereas S was the majority of the time. Day or night. But we followed the advice, Infacol didn't seem to improve matters, so we started to use Gripe water. This was around the time there was a massive shortage due to a fire at the factory where it was made... and we were going through lots of it. It seemed to help her settle, and many times, Daddy would phone around ALL the chemists in the Wigan and Manchester area to find some, and clear the shelves. He bought the entire 5 bottles in one chemist, after driving 20 miles there and back 20 miles back again once. As no others closer had any.
The sickness and grouchiness continued, and I was constantly back and forth to the GP, I was kept being sent back home, "its colic, it will pass", "every child is different, this is just how your 2nd daughter is". I knew somehow, not sure why or how, but I knew it wasn't colic. I kept persevering, almost daily with both children in tow to the drs, and health visitor clinics, and then we finally got a different answer, its Gastro-Reflux. And she was prescribed some infant Gaviscon.
  • Gastro Reflux, is where the milk your baby has swallowed comes back up again. And they may suffer from heartburn with it.
The Gaviscon didn't help, but caused more problems (constipation), so we stopped that, and continued with the GP visits. She was then put on Ranitidine. They then tested her stool sample to see if she was allergic to the milk. This came back all normal too. No other answers could be given. I felt the GP was getting tired of us coming in all the time, so one day, she made the decision, that if what I was saying was correct, she needed to be down the hospital, so she sent us to A&E. Finally we were being taken seriously,
 
On arrival on hospital, they did all the usual tests, but also wanted a urine sample. They monitored her on A&E, but all the commotion and activity, kept her quiet and full of smiles.... why??? Finally we got a urine sample, and they tested it, and it came back positive for an infection. Finally, they found what was causing my baby so much pain. They prescribed us some antibiotics and sent us home.
The antibiotics caused more problems for such a small baby, and we found ourselves back in A&E with blood in her stools. So a different antibiotic was prescribed, and we were again sent on our way.
We seemed to have a happy baby, finally.
 
 
This lasted for about 5 days, then the grouchiness came back again. So we went back to the GP again, Another urine sample had to be done, and they couldn't give us answers straight away, so we had to wait for an answer before she was prescribed anything. A few days later, it was confirmed, she had another UTI. I started to doubt if I was changing her nappy correctly, how could she have this twice? It cleared up again, and at the end of the course, we had to do another urine sample, finally a clear, infection free sample. Which lasted another week. Due to the amount of urine infections she was referred to a paediatrician. The waiting list for this seemed to be months away, so after her next infection, we went to A&E to be treated, and got seen there and then, and got put on a prophylactic dose of antibiotics to stop any more infections before getting seen in a clinic. This worked!!!!!! No more infections.
After seeing the paediatrician in the clinic, tests were then scheduled. The first test was a MCUG she was 7 months... its taken 7 months to get her symptoms listened to, to finally get tested for proper diagnoses.
  • MCUG scan is a test where they insert a catheter a pump dye into the bladder, and XRAY type scan to see how well the bladder system works, and to pick up abnormality's.  MCUG can be explained better here
The doctor doing the test was great at explaining it to me. S kept hold of the dye for a while in her system before passing it, the doctor at the time reassured me, this is normal for a child who has Kidney Reflux, but couldn't go into more detail, as the results had to be taken back to S's doctor.
 
Once this test had been given, and it was confirmed, that our daughter did have Kidney Reflux. S was then reffered for another test. This test is called DMSA.
 
  • DMSA scan is where they inject a radioactive isotope in to her veins, and sent us home for several hours. We then went back and she was scanned for about 45 minutes. It is used to assess the position, size and damage of kidneys. DMSA can be explained in more detail here.
S didn't like this test as she had to remain very still, and not kick her little legs, and 8 month old child loves kicking their legs around don't they, so getting her to remain still for that long, was incredibly hard.
 
The results came back, She has Right ureteric reflux into the renal collecting system, and left sided reflux into the lower left ureter.
 
Finally they had the diagnosis they needed to stop it coming back. However these tests caused another infection, so her prophylaxis dose of antibiotic had to be changed to a much harsher antibiotic. Which she remains on now.
 
She has had one suspected UTI since then, and put on a course of antibiotics for a week. But it wasn't confirmed.
She has annual ultra sounds on her kidneys to make sure they are growing correctly. On her last ultra sound, she was able to keep the picture of her kidneys, and she was so proud of it.
 
It was all going well, and the last clinic appointment with the paediatrician they were talking about taking her off the antibiotic nightly dose. However, she now has another suspecting UTI. Two days ago, her balance and co-ordination started to go wrong, with constant falling over, and slipping down stairs, followed by a horrific smelling nappy the following morning. There were no other symptoms. No temperature, no constant crying. Doctor is suspecting it is a UTI, as her ears, and throat all seem fine, but her stomach was tender to touch. So she has been put on another course of antibiotics whilst they test.
It can take just one infection to cause damage. So we are keeping everything crossed, that we caught it early enough.
 
She is hoped to outgrow the reflux, but it doesn't look like she has yet.
 
When we go on holiday, we need to make sure she is covered under the insurance. Especially when we went to America... it took a while to get the all clear, but thank fully she was covered, leaving us to enjoy our holiday.
 
 
When we go away in the UK, we need to remember the antibiotics for her nightly dose. Once I forgot it on a trip to see family 260miles away, and I had to get an emergency doctors appointment with the family doctor. This proved difficult as she needed it that same day, and the antibiotic she needs usually has to be ordered in. Thankfully the Doctor slipped us in, and gave us a small amount to take us through the trip. Without even batting an eye lid. It is an extremely expensive drug, and the amount of doctors that usually try and put us on something else is alarming. (We have moved plenty of times, and it happens each and every new GP). The local chemist to my family, put an urgent call in, and we could pick it up before her bed time. So any infections were prevented.
 
The hardest part is keeping her hydrated. She doesn't like to drink, and its a challenge. Some days she can be like a fish, and others is a battle. So we often come up with smoothies for the smooth taste and textures... and bright colours....
 
Im sure she will carry on having more infections throughout her life, but I am hoping to be on the ball, and catch them early. I had no idea balance issues could be a sign of a UTI, but thankfully a friend did, and along with the one smelly nappy, that's what got us down to the doctors.
S didn't suffer with high temperatures either, not every child is a text book case. So trust your instincts. Thankfully I trusted mine, and so far we have saved her kidneys from damage. S only had the vomiting that we noticed originally, as she was too small to tell us any of the others.
 
Urine Infections symptoms can include:
burning sensation during urination
urinating more often than usual
abdominal pain
a high temperature
vomiting
reduced appetite or foul smelling urine
 
If untreated it could lead to kidney failure.... I am so glad its not left untreated!
 
 
 
 
Binky Linky

8 comments:

  1. Wow what a journey you've been on as a family! I've so glad you've found the cause #binkylinky

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    1. Thank you... it was such a nightmare time. Glad I stood my ground. And hopefully we wont have anymore problems. :-)

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  2. This sounds quite similar to what my sisters children have. Her daughter has a duplex kidney and her son a horse-shoe kidney. Thanks for linking up to the #binkylinky

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    1. Wow, I have never heard of those conditions. There is so many various complications you never hear about, and it seems the doctors think its too rare to diagnose unless your persistent.

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  3. I am so glad you trusted your instinct and got it diagnosed. Poor little girl has had it rough, fingers crossed she will grow out of it! Thank you for making us more aware and for linking up to #binkylinky

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  4. Oh wow!! Poor little one! Glad you trusted your gut feelings and got it checked! What a little trouper she is! :) xx #BinkyLinky

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  5. I wish I can tell you my story. Same perseverance and no one knows the problem. I kept coming back to different doctors in my country and they cant find the thing that causing my son to cry so much. They all said its normal. I am a new mother then but I am his mother and I knew something is making him cry other than being a baby. We eventually got a Enema Xray and it shows some problem with the intestines. You should see how he would cry when he got injected and how the liquid would go back. When we found the problem. Parts of me was happy that we found out but sad cuz hes got hirschrpung disease. =( #binkylinky

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  6. It is a shame how much as parents we have to push to get someone to realise that there is something wrong, we know our children and know when something isn't right it takes until you find another doctor, a clever or sympathetic one to actually get a diagnosis, it would save a lot of heartache and suffering if they would listen to parents #pocolo

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I enjoy reading every single comment, Thank you.