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Happy New Year??

We hope that everyone has had a fantastic Christmas and New Year, Luke and his brothers had a fantastic time. Luke was up at 4.30am on Christmas Day and couldn’t believe how many presents Santa had brought him. He had lots of Star Wars Lego and Hero factory, which he couldn’t wait to build.

We have also been back to see the consultant this week, who has looked at all of Luke’s results. Hi GFR has come back as 77, which is stage 2. We’re really pleased that it is no more than this at the moment and it’s good to have a baseline for further tests.

His other results show that he has most of his protein leak from the tubules in his kidneys and this is where the main part of the damage to his kidneys is. His ultrasound showed that he has no more calcium building up in his Kidneys at the moment so the medication he was taking has slowed down that process. He may need to re-start that medication though to prevent further build up.

His bone age is the same as someone who is 9 years old, which is a concern as he is only 7 years 8 months. They have noticed that one of his hormone levels are slightly lower than they should be, so they have decided to refer him to an endocrinologist so that they can look into this further. They have discussed the possibility of Luke having a water deprivation test. We had already researched this on the internet and have told the consultant that we are worried about this test. This is because of the amount of blood tests he would need to have, and after the GFR we didn’t want him to have that many needles again. They agreed that we could discuss our concerns with the endocrinologist and the test be done as a last resort.

The main part of the consultation was taken up with what all of Luke’s results may mean for him and the consultant feels that he may have Dent’s disease. This is a rare genetic disorder, which he may have inherited. The next step is for him to have genetic tests in order to see if it is. This was a huge discovery for us, we had heard of Dent’s but knew nothing about it. I’m also going to have some tests as it passes down the maternal line and if it is Luke’s brothers may also need to be tested. It’s so nice to have some sort of diagnosis and be able to have some sort of plan for Luke’s future. We would rather Luke didn’t have any problems at all, but if we can manage the problems with the support of his medical team. We are more than happy that with their support we can continue to keep Luke well for as long as possible.

Wow what a difference a few months make!!!!

Firstly I don’t know where the time has gone and how fast everything has happened. Luke has been back at school since September and seems to be getting on well with his new teacher and classmates. They have their own version of “Facebook” and it really means that parents as well as staff and pupils can truly interact with each other.

We did find out though that Luke is struggling at school, we don’t know if it’s his ability or the treatments he has, which are slowing him down but he’s decided to try and work extra hard this year to make up for where he has missed out.

Clinically, he has been seen at home by the local renal nurses and play specialist who have tried to help him understand what his problems are and how to answer people when they ask him questions about what’s wrong with him.

He has also been to see his first ever Chelsea match with his Uncle and Dad. He spent the whole match asking where Frank Lampard was and what he was doing. Lucky for Luke, Frank Lampard scored 3 times and he now has a new hero.

Recently we have been to outpatients and saw the consultant from the Nottingham team. We have had concerns about his height as he has only grown a couple of centimetres in the last year, and he has dropped dramatically on his growth chart. The consultant saw why we were concerned and she has agreed to do an x-ray of his hand in order to work out his skeletal age and if he may need any further treatment.

They have also decided to re-look at Luke’s kidney problems and have arranged for him to have 4 more tests which will help them to understand where the problems in his kidneys are actually coming from.

He has had to have blood and urine samples taken, he has also had to be off his medication which has been a bit strange as he seems to have had more energy than usual. But that could be because his blood pressure may be higher than usual.

He was also the bravest boy I have ever met; he had to have a radioisotope test in order to check his GFR. He went to hospital and had a radioactive isotope put into his blood stream (Luke was very disappointed he didn’t glow in the dark!!) and then had to have a series of blood tests.

Unfortunately Luke doesn’t have very good veins and they collapsed every time they put a needle in, Luke had a total of 8 needles and did not complain once. He was only upset when I told him he couldn’t hold his baby brother until the isotope had left his body. He was very impressed when he got home from the hospital as Chelsea had sent him a letter to tell him they’d heard he’d been having tests and they hope he felt better soon. This gave him a real boost after the day he’d had and I think he may have even forgotten about the 8 needles he had.

We have to now wait until we go back to see the consultant in January for the results and hope that this may bring us closer to an answer for him.

Over the last month...

Over the last month things have been pretty steady, Luke was still struggling with his diet and medication but he was slowly coming to terms with the whole situation. He ended Year 2 at school and said goodbye to his teacher Mrs M, who he had got really attached to over the past few months. He also realised that he would not have the same teaching assistant next year. This made him panic because she had been giving him his medication and his new teaching assistant wouldn't “know about” him.

The school have been great with transition for Luke this year. This is mainly due to the relationship we had built up with his teaching assistant, Mrs T. I discussed my concerns about the change over in teacher and having to explain things to them at the beginning of term. It would be even more difficult next year as Luke's younger brother would be starting at the school and he would need support as well. Mrs T arranged for me to have a quick chat with his new teacher, Mrs B, and I also passed on some written information about Luke and the drugs he was taking. I really appreciated being given the chance to talk to her and she said that I could talk to her any time or, if I was working, I could phone or email her.

The summer holidays started and we had a short break away for the weekend with family. Luke had a great time swimming everyday and riding his bike everyday. We were a little disappointed with some of the menu choices at the resturants as they didn't really cater for his diet, even though we had phoned in advance to inform them of it. However, because his low potassium diet is a precaution we didn't think it would really matter for one weekend and Luke treated himself to some proper chips and ice cream.

One slight problem we did have was that I received a phone call from our local chemist to say that they had received the prescription for Luke's Losartan. They had rang to order the suspension and there was none in stock. They had contacted the manufacturer who had no stock at all and could not tell them when they would be making any more. They had also spoken to the local lab, who made up all of Luke's other drugs, and they were unable to make any because it was still under license to the drug company. The chemists asked me to contact the consultant as they may be able to get Luke to switch to tablets but it would mean a slight increase in his dosage. I spoke to the consultant who agreed to the change but this meant Luke would need to start taking tablets rather than a suspension.

I was anxious about this but to be honest looking back I don't know why. Luke took to it so easily and this started him wanting tablets instead of the suspensions. We arranged for a straight swap for the Enalapril but would have to discuss the Bendroflumethiazide with the consultant as he was taking an unusual dose.

So we waited for his appointment and Luke got himself ready to ask if he could have tablets instead of medicine. The consultant was very impressed with how he had been getting on. His protein levels had dropped down to 100, his kidney function was fine and his calcium levels were down to normal levels. Luke didn't have to ask about tablets because the team had decided to stop the Benroflumethiazide to see if this would have an impact on his calcium levels. We were all surprised but it was explained that he was on a lot of drugs and it may make Luke feel a little better in himself to have one discontinued, but also he may need to go back on this at some point because his calcium levels may increase again.

We were so pleased to see that things were finally be moving in the right direction. Then we were told that, even though everything was moving forward ,Luke was still anaemic and even though we had been giving him the iron medication it had made no difference to his haemoglobin levels. The consultant said that this is common in people with kidney problems but as Luke's kidneys were working ok they were finding it difficult to understand what was happening. They were going to see us in 3 months, in the meantime, they would be discussing Luke's case with a haematologist to see if they had any idea what was happening. We were told that even though the appointment would be three months we should expect to hear from them sooner.

This has brought up more concerns for us with regard to him going back to school and how he is going to cope. We had noticed that he was still displaying some of the symptoms of anaemea but had but hoped it was just our imagination.

When we went to the hospital in June Luke asked some questions so that he can understand what is happening to him that neither we, or the consultant, could answer in a way that Luke could understand. The consultant said she would organise for us to see the paedeatric renal nurses who would be better able to explain to Luke. We received a letter from the renal nurses, in July, to say they would be in touch but we are still waiting to see what will happen there. At the moment our main proirity is to get these haemoglobin levels back to normal as soon as possible.