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Infant With Hcm

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KATHYW Find out more about KATHYW
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  • mflanagn
    replied
    Re: Infant With Hcm

    Hi Kathy,

    Our cardiologist is Dr. Allan Wilson from Children's Hospital of Wisconsin-Madison. He has been with us since Krista's birth. Krista's first surgery was at age 5, her second was at age 6 1/2. Tyler's surgery was at age 3. They both had catherizations done before the surgery becuase they wanted to be sure there was no other way to help them. I was very nieve with my kids. There were no resources for me when they were diagnosed almost 12 years ago. The internet was so brand new and the books were written in medical language that I didn't understand. You are 10 times farther ahead of me than when my kids were diagnosed. I had to have complete faith in my doctor because I didn't know or understand this disease. Things are much better for us now and I can intelligently talk with our doctor to get the best possible care for my kids. This website has been a huge godsend to me and I am only happy to help other parents.

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  • Lisa Salberg
    replied
    Re: Infant With Hcm

    Kathy,
    You are so right! Keeping positive is the best thing you can do!!! I know the road looks too much to bare at times...but hold steady and hopefully the it will ease up soon.
    Your in my thoughts!
    Be well,
    Lisa

    Leave a comment:


  • KATHYW
    replied
    Re: Infant With Hcm

    HI MICHELLE,
    THANKS FOR THE REPLY. I AM VERY HAPPY TO KNOW THAT YOUR KIDS ARE DOING SO WELL. I HAVE EVERY HOPE THAT MATTHEW WILL DO AS WELL.
    WHO IS YOUR CARDIOLOGIST? I HAVE MATTHEWS MEDICAL RECORDS BEING SENT TO MAYO, AS WELL AS TO DR. TOWBIN IN TEXAS. HOPEFULLY ONE OF THESE TWO CAN HELP HIM. IT DOES NOT SEEM THAT THE DOCTORS WE CURRENTLY SEE HAVE MUCH HOPE. I HAVE DECIDED TO TRY AND STEER CLEAR OF NEGATIVE, AND BE STRONG AND FIGHT THE FIGHT.
    HOW OLD WERE YOUR KIDS WHEN THEY HAD SURGERY? AND WHAT WAS THEIR GRADIENT? MATTHEWS LAST ECHO WAS NOT SO GREAT. HIS GRADIENT IS AS 66. HIS MEDS HAVE BEEN INCREASED TO TRY AND MANAGE HIS CONDITION. BUT IT WORRIES ME, THAT MORE CAN BE DONE FOR HIM, AND IT IS NOT.

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  • mflanagn
    replied
    Re: Infant With Hcm

    Hi Kathy,

    My kids Krista and Tyler were both diagnosed at birth. Krista will be 12 years old on June 7 and Tyler will be 9 on July 10. They have been taking a beta blocker (propronolol) since birth. They are doing terrific. We have 6 month check-ups with our pediatric cardiologist. When they were little I really worried a lot because they couldn't tell me when something wasn't right. My kids also have Noonan's Syndrome which has congenital heart disease as part of its diagnosis along with a whole slew of other things.

    I don't know if I can help, but if you have any questions please let me know.

    Leave a comment:


  • Dee
    replied
    Re: Infant With Hcm

    Hi Kathy -

    My son, Dylan, was diagnosed at the age of 6 weeks and he's currently almost 4 in 12 more days. Not that he's counting or anything!

    He currently takes Propranolol and Verapamil. He's also had endocarditis and a stroke as a result. We're currently waiting to hear back from his doc on what's next being as the Propranolol/Verpamil combination isn't lowering his gradient.

    This website has been huge wealth of information and support for me and I hope you find the same. I think the most important thing I've learned so far is to take your son to see not only an HCM specialist but a PEDIATRIC HCM specialist.

    Please feel free to email me or private message me anytime!

    Dee

    Leave a comment:


  • KATHYW
    replied
    Re: Infant With Hcm

    THANK YOU SO MUCH FOR ALL THE SUPPORT!!! MATTHEW DOES HAVE CONGENITAL MUSCULAR DYSTROPHY (WHICH HIS DOCTORS CANT BELIEVE HOW WELL HE IS PROGRESSING) AS WELL AS WOLF PARKINSON WHITES DISEASE. MATTHEW IS SUCH A HAPPY PLAYFUL LITTLE GUY. HE HAS 3 OLDER BROTHERS WHO MAKE HIS WORLD. I DO REALIZE WE HAVE ALOT OF UP HILL BATTLES TO TRY AN OVERCOME. THAT IS WHY I AM SEARCHING FOR AS MUCH KNOWLEGE AS I CAN GET. MATTHEW IS CURRENTLY TAKING ATENOLOL TO HELP REGULATE HIS HCM. THANKS TO LISA WHO HAS GIVEN ME THE MOST INFORMATION AND CONTACTS THAT I HAVE BEEN ABLE TO GET. MY CASE MANAGER THROUGH MY INSURANCE COMPANY HAS BEEN A GREAT HELP AS WELL.
    ANY THOUGHTS OR ADVICE IS ALWAYS WELCOME. THANKS AGAIN!!!!!

    Leave a comment:


  • Linda
    replied
    Re: Infant With Hcm

    Kathy, 16 months is so much younger than my son was when he was diagnosed(age 7 yrs), but I hope it will be an encouragement to you to know that he is 20 yrs old, doing very well in his second yr of college. He has limitations and has had several rough times thru the years, but he is doing so much better than we were led to believe he would early on. The first time I met a young man in his early 20's who had been diagnosed at age 10 was the turn-around time in attitude for me. Hope this helps you and I know you will hear from others. Linda

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Infant With Hcm

    Kathy,
    You have been in my thought since we spoke. How are things going?
    Be well...and give Matt a kiss from me!
    Lisa

    Leave a comment:


  • SheliRenee
    replied
    Re: Infant With Hcm

    Hi Kathy -

    I have a 2-year-old son, Keanu, who was diagnosed when he was 2 days old with biventricular hypertrophy. He developed ventricular tachycardia at 5 months of age. He is currently taking propranolol and disopyramide. I worry a lot about him and have been searching for information ever since he was diagnosed. I love this site. It has a great deal of information from a large variety of people.

    We try hard to treat Keanu like any other little boy. We know that he will not be allowed to do certain things in his life and we wonder how we will help a kid deal with such big issues (they are big to kids when they are told they can't do things they want to do) and we know that he will most likely be taking heart medications for the rest of his life. We are currently in the process of trying to obtain an external automatic defibrillator. His electrophysiologist said that we need to carry one around with us due to his V-tach. He will be implanted with an ICD eventually, however, the EP would rather wait until Keanu is a bit bigger. There is also a possibility of Keanu undergoing a septal myectomy or even an entire heart transplant. His doctor simply laid everything out so that we knew all possible options. I think I got them all down.

    Keanu is a very active and loving little boy. He doesn't understand right now his limitations, but hopefully we will be able to help him understand and adjust accordingly. It has been very encouraging to hear from others that they are doing well with their own treatments and that I should be able to expect Keanu to live a long and normal (within limits) life. I am thankful that we know about his HOCM and arrythmia. I shudder to think what could have happened to him when he got older if we had no idea. We hear all too often about kids falling to this condition and never having know they had it.

    I may have rambled a bit, but I usually tend to do that. If you have any other questions, please feel free to ask. You can send a PM if you would rather. I'm very glad that you found this site and strongly encourage you to read through the posts and also to call Lisa at the number Reenie posted. She can help you find somebody in your area (Where are you located?) to take Matthew to.

    I look forward to hearing from you.

    SheliRenee

    Leave a comment:


  • Reenie
    replied
    Re: Infant With Hcm

    Hi Kathy. Yes, there are some others on this board who have children who were diagnosed very early with HCM. I'm sure some of them will write soon. A few user names you can look up for info on their kids are HisMom, SheliRenee, Dee, and mflanagan. I'm sure I'm forgetting some, but I can't remember who right now. Some of these children were diagnosed at birth, others older. You might want to consider calling Lisa at 973-983-7429. She can help you a lot, both with information and with finding a doctor who is a specialist. You should really consider consulting a specialist, especially since your child is so young. If nothing else it will make you more secure with your current doctor.

    Sometimes -not always- with small children the cause of the HCM is related to a metabolic disorder. Has your doctor talked to you about the possibility of that? You should know that most people with HCM live long and full lives. You should learn what you can, but go slowly. You can overwhelm yourself if you aren't careful.

    I hope that I've helped some. Feel free to post often on our board. Also, please read through the rest of the site as well as the messages. There is a gold mine of info here. Welcome.

    Reenie

    Leave a comment:


  • KATHYW
    started a topic Infant With Hcm

    Infant With Hcm

    HI! I HAVE A SON (MATTHEW) WHO IS 16 MOS OLD, AND HAS HCM. ARE THERE ANY OTHER PARENTS OUT THERE WHO MAY HAVE A CHILD THIS YOUNG WHO HAS HCM, AND IF SO, WHAT TYPE OF TREATMENTS ARE BEING USED? AND WHAT IS THERE PROGNOSIS? I APPRECIATE ANY INFO I CAN GET.

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