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Kids PC Check-ups

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mflanagn RN at a Trama 2 center, 2 children, 2 dogs Find out more about mflanagn
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  • Kids PC Check-ups

    Hello all,

    Please say a few prayers for my kids. They have their PC check-up on April 10. The last check-up for Tyler was Dec and it was not good news. Possible myectomy this summer. I hope this check-up shows nothing new and we may be able to work with the medication a little longer. Krista has been stable lately so hopefully she will also have nothing new in her check-up as well. Krista will have an EKG and Dr visit. Tyler will have an EKG, Echo and Dr. visit. I think we'll be at the office for a while! Probably about 2 hours.

    Wish us luck. I'll post the results on Friday if I can. Thanks in advance for your good wishes, thoughts and prayers.
    Michelle - mom to Krista and Tyler both HCM
    Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
    Tyler surgery: 1/98 myectomy

  • #2
    Re: Kids PC Check-ups

    I'm praying for them and for you. Please let us know how they are doing when you have a minute.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Kids PC Check-ups

      Michelle,

      I wish both kids the very best of luck! I am sure you are very nervous. I can't beleive they are thinking about a second myectomy already for Tyler! How scary.

      Please let us know as soon as you can how the appointments go and many prayers for them!
      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


      • #4
        Re: Kids PC Check-ups

        Michelle, My prayers will be with Kristi, Tyler and you and yours . Rich
        Allways remember you cannot control the wind!!
        However you can adjust your sails!!

        Comment


        • #5
          Re: Kids PC Check-ups

          Michelle,

          I wish you and the kids the best of luck. I'll be thinking of you guys on the 10th. Hang in there and know that you are not alone. We're all going to be pulling for your kids. All the best.

          Bert

          Comment


          • #6
            Re: Kids PC Check-ups

            I wish you all a good..uneventful visit...
            I hope all goes well...While myectomies are rarely needed to be done more then once, in children it is more likley to happen as they are still growing.
            I will be thinking of you all.

            Big hugs and happy hearts!
            Lisa[/img]
            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


            • #7
              Re: Kids PC Check-ups

              Michelle - I'll be thinking of you, Krista and Tyler on Thursday!

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

              Comment


              • #8
                Re: Kids PC Check-ups

                I hope all goes well...While myectomies are rarely needed to be done more then once, in children it is more likley to happen as they are still growing.
                Lisa, I want to clarify that Tyler's first myectomy was in the right ventricle across from the tricuspid valve. He is now having thickening in the left ventricle across from the mitral valve. Hence the second myectomy.

                Thank you everyone for your thoughts and prayers, I'm sure they will help tremendously.

                I have to run. Have Anatomy and Physiology II class right now.
                Michelle - mom to Krista and Tyler both HCM
                Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                Tyler surgery: 1/98 myectomy

                Comment


                • #9
                  Re: Kids PC Check-ups

                  Michelle,

                  My thoughts and prayers are coming your way.

                  Karen

                  Comment


                  • #10
                    Re: Kids PC Check-ups

                    Michelle -

                    You've got tons of prayers from all of us (Kyla, Tanyr, Dani, and myself - Keanu doesn't understand that yet ). Please let us know the results when you get a chance......

                    SheliRenee
                    Mom of Keanu
                    4 years old (will be in March)
                    Dx at 2 days old with Biventricular hypertrophy
                    Dx at 6 weeks with HOCM
                    Dx at 5 months with V-tach
                    Dx at 3 with Noonan Syndrome

                    Comment


                    • #11
                      Re: Kids PC Check-ups

                      My prayers are with you and your children on their drs visit. I know in my heart the peace that God offers us through our HCMA connections will continue to bless your family.

                      Love and Light,
                      Sharon

                      Comment


                      • #12
                        Re: Kids PC Check-ups

                        You guys are awesome. I felt all the love, prayers and thoughts during our 2 hour visit with the PC yesterday. I have to tell it made a huge difference. Way to go!!!

                        The news for Tyler goes like this,
                        LV free wall is 8-12mm, LV septal wall is 12mm, the ejection fraction is 2.1 which gives a gradient of about 20mm. Way, way better than Dec. appointment. The only sticking point is Tyler has bradycardia and low blood pressure so meds cannot be increased. He has prolonged QT intervals at the high normal range which we will monitor. His mumur went down to a grade 2 from 2.5. OH YEAH YOU GUYS ROCK. Dr. said it must have been all the prayers and thoughts being sent our way that made the difference, because he said he sure didn't do anything.

                        The news for Krista goes like this,
                        No echo so we only listened to her and looked at the EKG. Her heart rate is fast high 90's low 100's even though she is on a beta blocker. Blood pressure is good. Her QT intervals are also prolonged which is being monitored. We will do a 24 hour holter during spring break next week to see if anything else is showing up. Dr. increased her beta blocker to 90 mg a day. Her murmur is around a grade 1.

                        So you can see we had a good visit with Dr and had good news too. Can't beat that. We go back in 6 months for Echos on both kids.

                        Have a wonderful weekend.
                        Michelle - mom to Krista and Tyler both HCM
                        Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                        Tyler surgery: 1/98 myectomy

                        Comment


                        • #13
                          Re: Kids PC Check-ups

                          Michelle,

                          I am thrilled for you and your family!!!!!!!!!



                          My son and I are off to the cardiologists for a stress test this afternoon. We are hoping to be able to continue with baseball following the visit, but we'll see. It's in God's hands now and whatever happens.........happens, but we could use some of those good thoughts also!
                          The power of prayer is immeasurable!

                          Thanks in advance

                          Karen

                          Comment


                          • #14
                            Re: Kids PC Check-ups

                            Oh Michelle what great news! Here's a high five!

                            by the way........Andrew is only on 50 mg of beta blocker (he weighs about 135) because he also has an already low heart rate and blood pressure so they don't dare increase his meds any for now.

                            Again, I am so glad for you all that there is no need for any surgeries or procedures for now!! Hope it stays that way!
                            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


                            • #15
                              Re: Kids PC Check-ups

                              Michelle you've made my day! I'm particularly biased when it comes to kids, because of Jonathan of course. I'm really happy for you and the kids. Hopefully, Karen will experience the same with her sons situation. We're all pulling for you guys.

                              All the best,

                              Bert

                              Comment

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