This is my first post. My little boy, Aidan, is 5.5yrs and was diagnosed in May 2007. He has a duplication of exons 8 & 9. Three months after diagnosis we moved from Queensland, Australia, to England and Aidan has been under the care of Great Ormond Street Hospital (GOSH) ever since.
In October 2007 he started on daily prednisolone. He was taking 7.5mg daily (he weighed 15.5kg) and had normal blood pressure readings. His blood pressure and urine is checked monthly by our GP. Within a couple of months his blood pressure appeared to be increasing, and by September 2008 his diastolic pressure (bottom figure) was in the 95th-98th percentile. This reading was on a daily dose of prednisolone of 7.5mg (weight 17kg).
GOSH reduced his dosage to a three week stretch of alternating doses of 7.5mg and 5mg, after which he has remained at 5mg daily (weight 17kg).
Although my own blood pressure has always been great, I have a strong family history of high blood pressure, and it is feared that this may be the reason Aidan is having this problem. GOSH have organised kidney and liver ultrasounds for the 30th Jan, and also a 24 hr blood pressure test, which was supposed to have been a couple of weeks ago, but were postponed by the hospital. They are looking to see if there may be another cause for the high blood pressure.
In the mean time, Aidan's blood pressure has returned to normal, and has been normal on the 5mg daily within 7 weeks of this reduction. Based upon that, I am fairly sure his high blood pressure is caused by his steroids, albeit a modest dose, and am confident his impending tests will be fine.
GOSH told me in September that if it were steroid induced, they would stop his steroids altogether. It is not their policy to treat the high blood pressure in young dmd boys on steroids. This is a worse case scenario for us. Aidan was doing so well physically, and although he is unaware that his 'energy tablets' have been reduced, he has noticabley weakened.
Aidan is under the care of Dr Adnan Manzur who gave a presentation at the Action Duchenne conference in London in November. Directly after his presentation on the benefits of steroids, I spoke with him about Aidan. Numerous emails have followed and he is now in a position to consider treating the high blood pressure if it is steroid induced. He has told me that if he does do this, it will be the first time in the UK.
Does anybody have a little boy of similar age that has had a similar problem that could offer any advice, eg. would they use beta blockers? I feel like it's only because I am pushing that he is willing to look into this at all, and so I want to be able to tell him of other cases if there are any.
Apologies for such a long-winded post! I have been reading these forums for a very long time but only now am managing to progress from lurker to participant!
Many thanks in advance to anyone who is able to offer any advice.