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Hi, We are Rob and Vicky Pettit, We have two amazing boys aged 6 and 3. Luke our six year old has some kidney problems and the doctors think he is a bit of a puzzle. When he was 3 years old they found protein in his urine and after a scan they found he also had calcium building up in his kidneys. He had a biopsy in 2008 and this showed he has “global nephrosclerosis with mild nephrocalcinosis of unknown cause”. At the moment Luke's kidney function is fine and the treatment he is having should slow down or stop any further damage, however no-one is sure of why this is happening so its a huge waiting game.
End of the holidays
With the end of the school holidays approaching I thought I'd better give you an update on how we're all doing. We haven't had a big summer holiday this year but we took the boys camping for a couple of days Luke absolutely loved it running around playing all day. The only thing we struggled with was keeping his medication cold as we didn't have an electric hook up. He has been back to the hospital again and the doctors have increased his Enalapril another 5mls, apparently he can still have another 10mls on top of what he is already having so we've still got a way to go. Rob and I wish it would happen a bit quicker as it is frustrating that his samples don't appear to be getting any better.
We have had one real concern though, over the last few weeks Luke has been complaining of aching legs. So much that it has woken him up in the night a few times. The doctors have done some blood tests and they have come back normal so we're keeping an eye on him just in case it gets worse. He is finally drinking enough fluid (2 litres a day) I did have to tell them that we could not physically get any more fluid into his little body (I say little he's grown 3cm in two months!) We've also had his little brother's urine tested this hospital visit and that has come back normal too. I must admit we did breathe a huge sigh of relief because he would never tolerate what Luke has to do. He had to had two blood tests again because the first did not have enough blood in it and when he had it done again the poor boy had to be jabbed twice because they couldn't get any blood out of his veins. He never really bruises though which is a bonus.
I'm now waiting to see if we have any mysterious phone calls to increase his medication again. We aren't due to go back to see the consultant until November and I'm hoping they have a discussion before then and make some more changes. Luke has told me he's ready to go back to school, he's missing his friends and I think he likes the structure in his day, I must admit I think we're beginning to miss the structure too!!
First Entry
Well another great month in the Pettit household, We had an outpatients appointment at the beginning of June where we thought things would just be the same as usual, however we were told that Luke's protein after a year of medication (Enalapril) hasn't gone down at all so they were going to increase his medication again. We were told that his calcium levels were coming down and they were happy to leave his diuretic(Bendroflumethiazide) alone. We were disappointed that after a year things hadn't changed but were hopeful that the plan the consultant had put in place would have a greater impact.
One week later we get a phone call, the diuretic needs to be increased because they're not happy with those levels either.... Confused, so were we. We have spent the last 4 weeks trying to chase up clinic letters so we can change his medication. (its still not sorted after all the hassle)and poor Luke has had one lot of blood tests(which never go well)which weren't fresh enough to test his potassium levels so he had to have more done. He wasn't a happy bunny believe me!!
One brilliant thing, Luke lost his first baby tooth this month and he's a “trainee year two” at school which he's very proud of and we are too, considering how much he has to go through. He's a very positive and happy child and when you ask him what is wrong with him he a just answers “My kidneys bang in my back” and carries on playing. I think we worry more than he does, he's amazing.
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