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Son shocked for 1st Time

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • Son shocked for 1st Time

    My 12 year old son James had his AICD put in at Tufts NEMC the first week of April. He and his grandparents and father went to a family reunion in Roaring River State Park, Missouri. I had not heard from them in 3 days. There is no signal for cell phones or phones in the cabins there in the park. Finally today James called me and told me he got shocked twice yesterday. At first I was not sure what he was talking about. Then he said my defibulator shocked me twice.

    He was going down a water slide at the park. He had been down it twice and the second time when he got to the bottom he got shocked. As he was trying to climb out of the water he got shocked again. He said the second time was alot more painful than the first. His dad did not take him to the doctor. They just had him lay down. When his dad got to him his heart was still beating like crazy and James was very pale. I wish they had taken him to the hospital right then.

    After he layed down for a while he felt some better. He told me today that his whole body feels very sore. I was very surprised he had gotten shocked already. Dr. Marty Maron told him when we were there in APril that he would probably never get shocked.

    I called his cardiologist after talking to James and he wanted to know why he had not been to the hospital yet. He called his electrophysiologist who also said he needed to be seen at the hospital ASAP. I can't get hold of them there in Missouri and I am about to go crazy! I called a hospital in Springfield, Missouri which is about an hour away from where they are. They could read his Medtronic Device. So I am hoping that they will call me soon.

    He was walking up a hill to the water slide and had walked up it a couple of times. I know his AICD his set at 225 bpm. I couldn't imagine his heart going that fast from walking up a hill. His doctor said he was worried about a bad rythm. SO now I am anxiously awaiting hearing from him. I hate that he had to experience that and go through that and I was not there with him. I can't wait till he gets home. He only had his AICd 1 1/2 months before he got shocked. I am thankful he had it though. I hate to think what could have happened had he not had it!

    Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Hi Janet,

    I am so sorry to hear James was shocked. BUT, if it was an "appropriate" shock, I am glad it did it's job!

    I understand 100% what you are feeling. My son Andrew (15) was shocked twice on Dec 27th and it was his first shocks as well. I know the anxiety and fear you are feeling and how heartbreaking it is to think our children have to go through this. It is VERY hard for a parent!

    Andrew's ICD also fired when he was walking up a very slight hill after sledding down it. It fired the second time while he was trying to stand up after falling to his knees with the first zap. We have a Carelink Monitor here at home so we were able to have them interrogate it within the hour. It turned out ANdrew's shock was not really appropriate. He did have a fast heart rate above the set limit, but it was not in fibrillation. (That is GOOD news!) SO they said it was not really appropriate because they only want it to shock if his heart is in Vfib. They raised his dose of beta blockers to slow his heart rate a bit more.

    Hopefully James' was not in Vfib and it is something that can be taken care of with medication or some adjustments to the settings on the ICD.

    Please keep us updated! My best wishes to you.
    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


    • #3
      Janet,

      I can only imagine what you must be going thru right now, just waiting for news and being so far away from your child. I am glad James was able to be the one to tell you what happened, at least you had the reassurance of talking to him.

      We'll be waiting for an update. Meanwhile, you take a few deep breaths, and take care of you - Thinking of you, Linda

      Comment


      • #4
        Janet.

        Do keep us posted. Meanwhile we will join you in prayers for your son's safety.

        Peace,

        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

        Comment


        • #5
          I ditto what Leon says. Please update when you can.

          Reenie
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

          Comment


          • #6
            son shocced for first time

            Dear Janet ,


            I know how you are feeling. My son Chris had his AID put in Feb. 2004 and three weeks after putting it in it fired. He got dizzy and went down. When I got him home I called the doctor but he really didn't think that it had truly fired, the description My son gave him it just didn't seem to be what they would expect. He had to watch over the weekend and see the doctor first in the morning. Well it did fire and a lot stronger then they had thought. It was a inappropriate fire. It picked extra t waves ad then doubled them. They reset it and he has never had another problem.No matter what caused it to fire is very scary when your not their.But one thing I see n these kids we have they take it with such courage, and try to tell us their o.k. They probably are but we still worry were moms and that's our job. I'm sure he will be o.k but you won't until you get him home. You and your son are in all our prayers.
            Try not to worry so much.

            Karen
            Karen Cicconetti
            Heart Transplant 1998
            Don\'t take your organs to heaven
            Heaven knows we need them here

            Comment


            • #7
              Janet,

              I know you must be very stressed at the moment. When he gets to a doctor make sure you get a copy of the event recording and get that up to NEMC ASAP.
              Call me if you need ANYTHING!
              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


              • #8
                Still Have Not Heard

                My exhusband called last night about 8:00 p.m. and was suppose to try and take him to the hospital in Missouri today. He was going to call me this morning but I still have not heard from him. Last night when I talked to him he said James was scared to do anything now and was sticking to him like glue. I am sure he is very nervous. That's why I wish they had taken him on to the doctor then they would have known why it happened and explained it to James so he would feel better and not be so scared! He will probably be afraid to do anything now.

                I just can't wait to get him back home! The doctors here have been calling me wanting to know what they found out and of course I haven't heard anything yet.

                Thanks for the replies. It is so reassuring knowing that there is this wonderful group of people who truly understand what I am feeling and going through! You all are AWESOME!!!! Janet
                My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                Comment


                • #9
                  Oh Janet, I am sorry you still have not found anything out. The waiting is horrible enough and then not being with James yourself must be so agonizing. I can't imagine!

                  I hope you find something out very soon!
                  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


                  • #10
                    Dr. Marty Maron Called

                    Dr. Marty Maron called me from Tufts NEMC and told me to do all I can to get them to go ahead and take him to the hospital. He was like "it is a no-brainer". I agree. He said he did not want him waiting a few days before they read his device. So I called and got a hold of James and his dad and grandparents. They have now agreed to go ahead and take him to the Emergency Room. They are on their way now. They are going to take him to Cox Medical Center South in Springfield, Missouri. I have already called the Emergency Department and faxed his records as well as Dr. Maron's phone number to them. Dr. Maron said he was just concerned because it actually fired twice. He thinks it could be a rhythm problem and doesn't want to put off finding out.

                    So they are now about 28 miles away from Springfield. I think they are upset with me for insisting he go. But he is my son. They feel because he is okay today he would be fine to wait until he gets back. Anyway, I am anxious to hear from them. Thanks for your comments! Janet
                    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                    Comment


                    • #11
                      I am glad you have gotten them to take some action. Let us know what happens. Good Luck!

                      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


                      • #12
                        Janet, my thoughts are with you while you wait.

                        Reenie
                        Reenie

                        ****************
                        Husband has HCM.
                        3 kids - ages 23, 21, & 19. All presently clear of HCM.

                        Comment


                        • #13
                          Janet

                          Please keep in touch with us and yes you have that right after all you take care of him on a daily bases

                          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


                          • #14
                            I can't believe his father, who also has HCM, is so unconcerned. I pray that they do not find anything significant, but in any case it is reason to be concerned.

                            Rhoda

                            Comment


                            • #15
                              Janet , so , so tough what you are going through. I am also so sorry James has been traumatized. He needs to be with his loving, attendant mother , soon. Let us know how things are progressing. Thoughts and prayers.

                              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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