Hi everyone,

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.

Kelly

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Hi Kelly,
My only thought, and I'm not sure how you would feel about this, is adding a prescription for Losartan. Losartan is used to treat high blood pressure, and it suspected of being an anti-fibrotic in DMD. I believe it was supposed to go into clinical trials this year, but had difficulty with NIH funding?

Anyway, at least ask the doctors about adding Losartan to steroids. Hopefully, that would take care of the high blood pressure and give you the added benefit of a possibly beneficial medication. They should do everything they can to keep him on the steroids.

Also - are you watching his sodium?

Take care,
Mindy
Hi Kelly,
My son has not dealt with any high blood pressure issues and has been on steroids since he was 5. He has though been on heart meds since he was 5.5. He will be 8 in a couple weeks. It was suggested to me by the cardiologist that started him on them that they might help hold off the cardiomiopathy by making his heart work less. He was on Enalapril first and then 8 months ago I asked to have him switched to Losartan in the hope that it might have some anti-fibrotic benefit as Dr. Cohns and Dietz's study has suggested. There is no trial on that yet so I don't know if it is helping his muscles or not. I can only hope that it is helping.

I hope you find a solution for your son's blood pressure that allows him to stay on the steroids.

Karen
Hi Kelly,
My son has a duplication of 5,6,7. He doesn't have high blood pressure, but he is on Lisinipril, which I know treats high blood pressure. Just wanted to give you another name of a possible treatment for you. On another note, since you are in England why is your son on prednisone and not deflazacort? Just curious.

Kelli
Hello again! Thank-you kindly for your replies. :-)

I have already asked about putting him on Losartan, but i keep being told no because there have not been any clinical trials, despite it being proven safe in children!! I thought we could at least try it, and then stop if he has any adverse reaction. I really do feel like I am banging my head against a brick wall with this one, it's so draining.

But I will go back, and ask for Losartan again, mention other boys taking it in the USA, and see where I get!

Kelli, thank-you for another name to throw into the mix, who knows, maybe I may get somewhere with that one. We are Australian, and Aidan's first prescription was written in Australia for prednisolone. Most UK kiddies also take pred, but those who may have some weight issues then change to deflazacourt.

Thank-you all once again, I really appreciate your feedback...this is one dmd-related fight I feel like I am having to do alone, I can't seem to find anyone else in the same situation, and I don't want to let Aidan down and give up on this, I really want him to stay on the steroids.

Kelly

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