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mflanagn RN at a Trama 2 center, 2 children, 2 dogs Find out more about mflanagn
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  • Chest pains

    Hi everyone,

    Haven't posted in awhile, but I read as often as I can.

    I have a question. My son, Tyler (10 yrs old), has been having chest pains. He has had 4 episodes. One in August, two in October, possibly one on Christmas day and then again last night. Our cardiologist has been contacted on each instance. In August we had an echo, EKG and 48 hour holter done. The echo showed some increased septum measurements so we increased his propronolol. The holter didn't pick up anything and the EKG is the same as always. Went back in October for another echo which showed slightly decreased septum measurements. We had another echo last week Thursday, again no increase in septum measurements. I am a little concerned. Doctor is reviewing his echo and taking a close look at everything and will call me when he decides what he wants to do.

    I wonder how many people here have the same problem. I understand this is probably just part of having HCM, but is there maybe a better medication that controls the HCM and better controls the heart pains? I feel really bad for my son. He gets pretty scared when the pains come.

    Any advice would be appreciated. Have a great day.
    Michelle - mom to Krista and Tyler both HCM
    Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
    Tyler surgery: 1/98 myectomy

  • #2
    Hi Michelle -

    I'm sorry to hear Tyler is having chest pains. Dylan had what sounds like the same thing happen a couple weeks ago at school. He was sitting down at the beginning of the day and said his heart hurt very bad and didn't know what else to do so he laid down. After a ambulance ride to the hospital (which he was THRILLED about ) and tests everything looks fine heart wise and nothing was found on his holter. His blood pressure was very low when the paramedics came - that's the only thing they could find. None of his numbers have changed any since his myectomy in April. It's very disconcerting to say the least!!

    One thing we've done is contact Project Adam (Dylan's PC Dr. Berger at Children's in Milwaukee is the Medical Coordinator for this project) about getting AED's both at his school and at home here so that helps a little bit for some piece of mind. I know you're in Wisconsin and if you'd like info about this feel free to drop me a message. We're also back to seeing the PC monthly again. I hope you get answers soon about Tyler. I know it's so hard to watch your son struggle and it feels like there is so little you can do.

    Best to you and your children!

    Dee
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

    Comment


    • #3
      I have chest pains frequently. Actually, it is my most debilatating symptom. I am also non-obstructed so it can't be relieved with a myectomy. I agree this is the scariest part of the disease for me because I don't know when it is something to just ignore or get help with.

      As far as treatment it all depends on what is causing the pain. If they can determine it than that is the direction of treatment. My cause is due to small blood vessels that don't supply enough oxygen to the heart. So, they try to use some sort of vasodialation drugs. I know that this is normally contraindicated in most HCMers but I'm different and have specialist keeping tabs. But, I believe for most HCMers an up in beta-blockers or calcium channel blockers are the drug of choice.

      Hope this helps!

      mary S.

      Comment


      • #4
        chest pains

        Chest pains are usually caused by an obstruction, but could just be the heart working too hard. Be sure to take his pulse and see if it is over 100 when the pain happens and let the doctor know.

        As Mary says, more drugs are the usual order of the day. It is frustrating as it is common to have to try many different drugs and combinations to find a solution.

        In fact, I am on so much beta-blocker (toprol xl 100 mg 3x a day and still having chest pain that my doctor thinks I should try a tiny bit of nitro to see if it will work--and since nothing about my condition makes sense (a lot like Mary)--I am thinking of trying it. I'll let you know.

        You may also want to log when the chest pains happen, see if there is a pattern, a stress, heavy meal, etc.

        S

        Comment


        • #5
          Chest pain can come without obstruction and that is the one that really is confusing at this point. WHY is the chest pain happening? Unfortunately we really do not know. I would suggest a few things - which I am sure you are doing some if not all of but for the benefit of those reading I will explain.

          1. Listen to your child's complaint and take some type of action. I personally find my chest pain is relieved if I lay down with my feet up for a few minutes.

          2. Encourage your child to explain what he/she is feeling in detail.

          3. Notify your pediatric cardiologist an let them know in as much detail as possible what is happening. Include what the child has eaten, what activities they have been involved with over the past 24 hrs. and history of the same type of pain.

          4. The doctor may not have an answer for you - this can lead a child to think the adults do not believe them... PLEASE tell your child that you know the pain is real and that you are looking for answers.

          As a child with HCM I can tell you that my symptoms were ignored by many health care providers. Looking back it was clear if they could not SEE the problem and did not know anything about what HCM was it was easier to just tell me I was fine and ignore it. Children have real pain and we can not take that away. We can look for reasons, try to treat them and hopefully be successful.

          Parents do not expect to see actual physical changes in your child's heart with every symptom of HCM. Looking for little changes in an echo can be highly misleading as the numbers can vary slightly from echo to echo. If your child has a septum of 1.5 today and in one month has a 1.6 this is not a significant change and may be due to hydration issues - you may find 2 mo. later the measurement is back to 1.5.


          Best wishes to all,
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Hi Michelle,

            What did your doctors decide about Tyler's chest pains?

            Andrew also had severall years where he would complain of chest pains. From what he described most of the time they DID sound like "heart pains" to me. But when the cardiologists would see him (after the pains had quit) they could find nothing different that they felt would cause such pains and always wrote them off as muscle or skeletal type pain. I know it must be very hard for the docs to distinguish exactly what type of pains they where when they aren't happening in the clinic!

            I always felt bad for Andrew because most times I felt his complaints were legit and he would feel foolish when they were shrugged off. He has said he still has them off and on, but just doesn't mention them anymore so he isn't embarrassed by being told "it's nothing".

            Let us know what Tyler's doc thought.
            Dolly~
            mom to Andrew(HCM) 21 years old
            Diagnosed \'95 age 5
            Myectomy \'96 age 6
            ICD implant \'99 age 9
            First ICD shock (X2) \'04
            ICD replacement surgery \'05 age 15

            *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

            Comment


            • #7
              chest pains

              Sorry for the long delay in answering everyone's questions. With my school schedule, work schedule, homework and tests, my time is very limited!

              Back to Tyler. Since this post, Tyler experienced another episode of chest pain, but this time he was also pale and lethargic. Needless to say I was scared to death. We went to the ER. I had spoken to our cardiologist in Madison and had him call our ER in Neenah with the tests he wanted done. So we arrived at the ER (my workplace no less) and Tyler got hooked up to the monitor, vital signs taken, EKG, chest xray, blood work, etc. The blood work came back normal, the chest xray was the same as previous, the EKG was the same as previous, but the concern I had were the PVC's he was throwing. Tyler has had 24-hour and 48-hour holter monitors done many times and only had 1 PVC on them. Now within the first hour of our stay in the ER he threw 3. I voiced my concerns the the RN, but she said "everyone throws PVC's once in a while." HA, I explained our past experiences with holters, but she didn't seem to think it was worrisome. Then the ER doc came in, put his stethescope on Tyler chest for 2 seconds and said we're transferring you up to Children's Hospital on fourth floor for observation. He didn't even hear Tyler's murmer or comment on his PVC's. I was very upset. So we transferred up to the fourth floor and got hooked up to the monitor. Again Tyler was throwing PVC's. I again voiced my concern about them to the RN. The hospitalist came in and we talked for 30 minutes. She examined Tyler, asked him questions about his chest pains and explained that the pains he is experiencing are not typical heart pains because they were not "crushing" pains or shooting pains that typically go along with heart pains. Whatever, I know Tyler is experiencing these pains and they hurt, because I witnessed one of his episodes. Okay so I told her to call our cardiologist in Madison and discuss her feelings with him. In the meantime Tyler had ordered lunch (2 p.m.) and was practically inhaling it when the monitor went crazy. Tyler was up to 13 PVC's with 2 episodes of couplet PVC's (2 in a row). I was really scared at that point. What bothered me the most is that no one seemed to think this was anything to worry about. After Ty was done eating the PVC's slowed down, but he was still throwing them. We were discharged at 6:30 p.m. We spent approx 6 hours in the hospital with no answers.

              I called our cardiologist the next day to discuss his feelings about all of this. He said that the PVC's were a new thing for Tyler, but they normally don't worry too much about them unless they are multi focale (from different spots in the ventricle). I had the hospital fax him copies of the monitor strips from our stay. I haven't spoken to him since. He is in Appleton today, so I will probably pop in over at the hospital to see what he thinks.

              It has been a week and a half since this happened and Tyler seems fine. He was so scared when it happened. He said to me "mom, I'm so scared, I don't want my heart to stop." I could have just cried. Its so hard to explain to the kids and make them calm down. I think he actually had a panick attack and turned pale from that more than it was his heart during that episode.

              Anyway, now you know what's been happening. I still don't have any difinitive answers, but we are calm again (until the next time!).

              Thanks for your support during these scary times.
              Michelle - mom to Krista and Tyler both HCM
              Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
              Tyler surgery: 1/98 myectomy

              Comment


              • #8
                Michelle

                I'm glad Ty is ok, those PVC's can get your attention and as a mother with a son that has this disease it can get scary and it don't go away when they are grown either my son will be 29 next Tue and i still freak out when he doesn't feel good and he still calls me when he doesn't feel good so I don't know if that is good or bad HA HA

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Michelle, I'm sorry Tyler is having problems. I'm glad he didn't try to hide it and tough it out. I hope your doctor is able to reassure you about the PVC's. Don't hesitate to call Lisa for a bit of input if you need it. Please keep us posted.

                  By the way, have you finished school? What is your position at the hospital? Linda

                  Comment


                  • #10
                    Michelle,

                    Glad for the update and hope your doctor offers you all the info necessary to help Tyler get back to feeling less traumatized by this whole ordeal.

                    Best to you.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment

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