News

In his kidney monitoring workshop at the AGM in November last year, Dr Chris Kingswood (Consultant Nephrologist and Voluntary Head of Research TSA) was asked the following questions:

Q: My child is 6 and has had a kidney ultrasound at 1 year and 4 years, both of which were clear. Does he need one final scan?
A: He should have repeat scans up to his mid 30s. The kidney retains its growth potential until mid-adult life so there is a continuing risk. However if nothing is found, these can be done less frequently. Perhaps every 3 years until mid teens and then 5-yearly (But these are “best guesses”).

Q: Can AMLs start growing at any age?
A: Yes, they can, but AMLs tend to stop growing by the age of 35 as this is when the kidney itself stops growing. The important thing to know about an AML is what size is it and if it gets any bigger over time. You can only know that by having an ultrasound to see if one is there and if there is, having another one to compare the size and see how fast it has grown.

Q: Do you recommend a kidney ultrasound when TSC is diagnosed (whether in infancy, as a teenager or as an adult)?
A: Yes, a kidney ultrasound should always be performed where there is a diagnosis or suspicion of TSC, along with a blood test, blood pressure test and physical examination of the abdomen.

Q: Is extra kidney monitoring required for polycystic kidney disease and AMLs?
A: It is very important to measure blood pressure and kidney function (with a blood test) and doctors can feel your tummy to feel the size of the kidneys and cysts. Ultrasounds are recommended to rule out PKD and are only needed annually if the kidney specialist thinks they are needed. If you have PDK you should be referred to a kidney specialist.

Q: What if the Doctors are unsure what is a cyst and what is an AML?
A: This can happen, as the cysts can be so small. Doctors will monitor their size but also importantly the blood pressure and kidney function.

Q: What can cause renal pain?
A: Bleeding and stretching of the kidney capsule.

Q: Do you need an ECG prior to any surgery if you have a general anaestethic?
A: Yes, at least once. There is a rare cardiac condition called Wolff Parkinson White syndrome, so make sure your anaesthetist knows that you have TSC. If the condition does not show up in your first ECG then it will not be needed again unless you have another existing cardiac condition.

Time flies but we have an extra 3 months… Help us put it to excellent use:

Recruitment to the Everolimus AML clinical trial has now been extended to June 2010. By then we need to reach the worldwide target of 99 patients for the trial to give us the answers we need. With 21 patients by February, that is a tall order and we need your help. There is huge interest in the TSC community in a drug which will treat the condition, the researchers are poised, but the trial cannot proceed without enough participants.

So..if you have an AML of at least 3cm in longest diameter and want to find out more please email us or ring 01273 696 955 extension 3541.

The Everolimus SEGA clinical trial is also recruiting 99 worldwide from an even smaller population-people with TSC and an enlarging SEGA at least 1cm in longest diameter. Again, contact us or ring 01273 696 955 extension 3541.

The clock is ticking; let’s really have something to show for those 3 extra months.