Help

[Scott Mac.]

I know the subject line is quite General but thats all I can do at the moment is scream HELP

My 16 week old son Sean was just diagnosed with HCM a few days ago and my wife and I are besides ourselves at the moment.

Our Pedeatritian, Pediatric Cardiologist, and our Pediatric Neurologist seem to disagree on some issues.

He was diagnosed with HCM while doing some testing for his lack of weight gain. He's only gained 37 oz since birth on 10/16/02.

He's sill in the hospital waiting more test and I'm entertaining the thought of a 2nd opinion unless something miracalus happens within the next few days.

Questions:

What hospital has the best Pediatric Cardiology unit in the US?

Where can I find a suport group for parents of Infants with HCM?

Thank you.
Scott MacPetrie

Edit: The more I read through some of the threads on the diffrent boards the more I'm think I'm going to like it here.

[Donna]

Hi, Iam glad to welcome you to our family. I am sorry to here about your son. I do not have the answers for you, but someone here will know what to tell you. Lisa and the rest of the people here are full of great info.

My name is Donna. I have HCM. I am 42 and found out about my HCM about a year ago. My younger brother passes away a year ago last December first. The medical exam after he died showed HCM. Then the rest of us kids had to get checked. Our othrt sisters are fine.(thank goodness for that) I had an ICD put in and am doing fine. So far my kids are ok.

You and your wife should be tested to see if you have HCM. If you have other kids and brothers and sisters they all should be tested.

I will keep your son and the family in my thoughts and prayers.

[Dee]

Pediatric Cardiomyopathy

Scott - I sent you a private message with hopefully some helpful information. Please don't hesitate to contact me if you have any other questions!

You, your wife and son will be in my thots.

Dee

[Sarah]

help

Dear Scott,

Please call the office at 973-983-7429 and talk to Lisa. She can hook you up with the specialist you need. We don't just list names and numbers here--we like to talk to you and talk about your options and your needs and answer questions.

Frankly, there are plenty of parents of HCMers here and I think you have found what you are looking for.

However, you do all need to get screened and you can call the office and leave a message anytime --Lisa is out of town but I think she is back today or tomorrow.

take care and hang in there!

S

[Linda]

Scott, I'm glad you found us. You and your family will need lots of support and encouragement to help you move forward with the difficulties you are facing. You will find that here in large measure. You will have people sharing with you, who have faced very much the same challenges. It sounds like you have a great team to care for your little Sean. A second opinion can be invaluable, and may very well be welcomed by the medical team. Call Lisa (Board President), as suggested in messages above, she will be happy to talk with you and can be much more specific in a personal phone call. I and so many others know about that helpless feeling when screaming may seem to be the only answer. Keep us posted, you will have many praying for you all. Linda

[Lisa Salberg]

Dr. Jeff Towbin at Baylor in Texas is the best I know for little ones like yours. It is very hard to diagnose these little ones so be ready for some disagreements and confusion.

I know this is a hard time for you and your wife, as well as the rest of your family. Try to be positive, look for the best help, talk out your concerns and use this board, you will find good friends here.

Tuesday is the best time to call me in the office - please do.

Best wishes,
Lisa

[mflanagn]

Hello Scott,

I understand your feelings. I've been there too. My children were diagnosed at birth with HCM. They have murmurs that started the diagnosis process. First the EKG, then the Echo and finally the diagnosis. It has been a learning experience!

This board has been so informative and supportive for me as I go through all the issues related to HCM. You are in the right spot. Go for the second opinion and, very important, make sure you get to a Pediatric HCM specialist. I don't know of many! My cardiologist here in WI is not an HCM specialist per se, but he is very knowledgeable and has about a dozen HCM children he takes care of. He also calls pediatric HCM specialists to consult on my children's cases. Good luck.

[Scott Mac.]

Baby Sean is home

Thought I'd let you guys know that my son is home from the hospital and we are awaiting some lab work to come back from Mayo before a final diagnosis/prognsis is givin. One thing we did find out the last few days is his enzyme level is up in both his liver and his heart. I'm not sure exactly what that means yet but I'm sure to find out.

We do have apointment with a genitisist (sp) soon since she couldn't seem to make it to the hospital for our consultation.

Thanks for your support

Scott Mac.

[Amy N.]

My son was diagnosed at 18 months. He's now 2 and doing great. Because of all of this myself and my father have been diagnosed. We're all doing just fine.

The first few months I found out, I panicked. I read everything I could get my hands on. This board provided me with a lot of great - trustworthy info. I also experienced a since of "lost dreams/hopes". He'll never get to be on the basketball team, etc. Will he be able to farm like his father and grandfather? So we take one day at a time. Our dreams are not gone, they've just been revised or updated. At 2 were into trains - a new adventure for the whole family.

This place is not only a great place to get questions answered, but it's a family that supports each other.

Stay in touch and Good Luck!

Amy N.