Parents,

How do you handle when your son tells you he has chest pain? I remained calm but Jared would not talk about it. It lasted for an hour and that was it. I did not take him to the Dr. since I feel no cardiologist would know what to do for him. He is having his first Cardiac MRI in Cincinnati in November so I am trying to just wait until til then. It happened earlier this week but it still weight on my mind.

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Ryan gets chest pains too. The doctor has checked him over and thinks they are just normal muscle type things. Not the heart. Ryans sometimes last a few minutes other times longer. I just try to get him to relax and take slow deep breaths.
I wouldn't necessarily assume the worst, it could be something as simple as heartburn. Many young boys and men with DMD have acid reflux/more sensitive guts.
Just a thought,
Katherine
Great to know Katherine. Thank you for easing my mind.

Katherine M. Reynoldson said:
I wouldn't necessarily assume the worst, it could be something as simple as heartburn. Many young boys and men with DMD have acid reflux/more sensitive guts.
Just a thought,
Katherine
Thank you Donna. It will help me to deal with it better next time.

Kari

donna said:
Ryan gets chest pains too. The doctor has checked him over and thinks they are just normal muscle type things. Not the heart. Ryans sometimes last a few minutes other times longer. I just try to get him to relax and take slow deep breaths.
It might be a good idea to get a referral from Cincinnati for a local Cardiologist to establish your son with so you have someone to see in between visits to Cincinnati if the need ever arises. I'm in Long Beach, not that far from you and my son's Cardiologist is very well versed on the effects of Muscular Dystrophy on the heart and even though he is a pediatric Cardiologist has offered to keep Jon on as a patient after he turns 21 (he is 18 now) because he feels that most adult cardiologists are more used to dealing with heart attacks, clogged arteries and the more common adult ailments and would not be as familiar to the involvement of MD and the heart. It is also nice to have someone local in case you ever need a check up for any possible surgery, my son has had 3 procedures for kidney stones this year and it was necessary to get clearances from the cardiologist and pulmonologist and since they were both local it made our lives so much easier.
I have to agree with Susan. I would want someone close just in case and have them rule out anything related to the heart first.

Susan Rathfelder said:
It might be a good idea to get a referral from Cincinnati for a local Cardiologist to establish your son with so you have someone to see in between visits to Cincinnati if the need ever arises. I'm in Long Beach, not that far from you and my son's Cardiologist is very well versed on the effects of Muscular Dystrophy on the heart and even though he is a pediatric Cardiologist has offered to keep Jon on as a patient after he turns 21 (he is 18 now) because he feels that most adult cardiologists are more used to dealing with heart attacks, clogged arteries and the more common adult ailments and would not be as familiar to the involvement of MD and the heart. It is also nice to have someone local in case you ever need a check up for any possible surgery, my son has had 3 procedures for kidney stones this year and it was necessary to get clearances from the cardiologist and pulmonologist and since they were both local it made our lives so much easier.
Many times to rule out acid reflux, your son could take a glass of water with a squeeze of lemon juice. Acid fights acid and your body makes alkaline to subside it. Many times you may see a difference within 1/2 an hour to an hour. It's safer than taking Zantac and doesn't have the side effects. You can do this 2, sometimes 3 times per day if it is really bad.

Naomi
I agree with the other ladies. Mason has complained of chest pain and we go the ER and they always tell us its neuromuscular or heartburn. Every incident has passed without worry. As part of the treatment here on the East coast, Mason is on an ace inhibitor as a preventative measure so that might be something you might want to discuss with your cardiologist as well. The reason for the ace inhibitor is that they have seen it helps the heart not have to work so hard there by preserving the muscle for longer. Mason is 14 going on 15 and has not heart concerns. Also, don't feel as if a cardiologist would not know what do for him. He knows that muscular dystrophy effects all muscles in the body and the heart is a muscle.

One more thing to consider ladies, and I don't mean to scare anyone, I would have never thought of this unless we had not gone to the ER. If your children are not ambulatory any longer, as my son just recently became, and they are sitting for long periods of time in their wheelchairs. They can develop pulmonary embolisms, which is very serious. They NEED to go to the ER to have a scan. Mason had this incident not too long ago when he was having tremendous pain in his chest. They aired on the side of caution and did an MRI which resulted in nothing being found and determined it to be neuromuscular but I would never have thought of something other than muscular. I guess what I am trying to say is if the pain is just unbearable, don't ignore it and assume it is muscular. Go get help and have the ease of mind that everything has been looked into..
Justin was having very severe chest pains one time and we took him to his doctor and it turned out to be pleurisy. Justins pain was radiating through his left arm and side and into his chest. He was on very large doses of anti-inflammatories for over two weeks until it resolved.

--Samantha
Kari, Hi, my son had the same thing happen, I told Dr Wong about it recently when we were there last week and she prescribed zantac for heartburn/reflux. My son has only had it happen twice. I gave him some milk and that seem to calm it a bit. I will now have the zantac for the next time it happens.

Kathy
Hi Kari - Seems that I recall that your son has BMD. I have read that BMD can have cardiac involvement and it less predictable than DMD. I personally would have a cardiologist do an echo and then have them compare it to the one you have. Thinks can change so rapidly that I personally would error on the safe side. Char Burke
Hi Kari,

I agree that it would be wise to identify a local cardiologist in addition to Drs. Wong/Cripe . As UCLA moves toward a multi-disciplinary and comprehensive DMD clinic, they have begun to involve several sub-specialists including a pediatric cardiologist, Dr. Juan Alejos, who is currently seeing/treating some local DMD (and Beckers?) kids. UCLA is currently in the middle of a search for a new DMD clincial director to help in coordinating this effort and Dr. Alejos has been helping both with recruitment and by participating in DMD clinic in anticipation of these changes. Also Dr. Ron Victor recently relocated to Cedar-Sinai (from texas). He is an adult cardiologist who is funded to perform a clinical trial studying a viagra like drug in Beckers with heart involvement. I think he is recruiting subjects soon/currently; not sure of the enrollment requirements. He is also interested in helping with the UCLA clinic and translational effort. You might find it helpful to talk to either or both of these local physicians. Let me know if you want or need help finding their contact info.

Best,

Carrie

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