CCF Cardio JMF-Please Answer!!

[Kathy]

Hi....you had requested I provide an H&P on my son. I noticed today that two of my posts to you were apparently deleted either late yesterday or early today.

The H&P on my son, "What Next? Teenager Still Going Downhill",
is located way down the page, between the posts titled "Skipping Heartbeats and "Relationship between eating and rapid heart rate."

We are returning to Mayo on 1-4-00 to see the attending endocrinologist, followed by a nephrologist. It was my 14th call to Mayo since our return from there on 11-27-99. Since 11-27-99, my son has lost an addition 11 lbs. There is a neurologist in your Neuro/Neurosurgery Forum who is researching this for me, as well, a wonderful guy with the initials RPS. He has provided me with fascinating information of which I am pursuing.

Please, if you will, check out the H&P and let me know your thoughts. I don't know who deleted the last 3 posts.

Thanks for your time.

[Medhelp Administration]

Dear Kathy,

JMF is off for the holidays and will be replying to follow-up questions after the new year.  Please do not continue to post follow-up questions as new questions as it prevents others from asking their questions.  

If you have urgent concerns or questions about your son the best place to get them answered is from his doctors.  Thank you for your understanding.

[DENISE]

Dear Kathy,

Please understand that I sympathize with your son's medical condition.  I am just a frequent user of this board having had MVP surgery 6 months ago.  I know everyone on here is concerned.  You have been posting regular questions since Oct. 1999.  I noticed you said you are also posting on the Neurology board and getting good help.  I read those posts and I think you are, indeed getting excellent help from a very concerned doctor.  I don't know if you realize that this board can only take so many questions per day and that it sometimes takes days to get an answer.  After I had posted a few, I received an email that stated, that although free to use, it costs the board $20.00 per question to upkeep the forum and asked for a donation, which I gladly gave due to the excellent advice on here.  You seem to have a vast medical knowledge and I don't, but it appears to me that your son's condition is neurologically related, not heart related.  My suggestion, and please forgive me, is that maybe you should stick to the neurlogy board.  The doctor there seems very giving and caring.  I will continue to pray for an answer to your son's illness as I know others are.  I just don't want to see other individuals lose out on a chance to post a question if it's not heart related.  I respect you for your vast medical knowledge and only wish you the very best as well as your son.  Sincerely, Denise

[martie]

Dear Kathy, What is the neurology forum web site? How do I get to it, because the way things are starting to sound on this forum, I'm afraid of loosing touch with you and whatever progress you will hopefully make?. I really don't want that to happen, for I will always wonder whatever became of you and your precious son. If I do loose touch, just remember that I hold you both close to my heart and I wasn't just a curious reader. Luv, Martie

[Kathy]

Martie:

Thanks for your support. To get to the Neuro Forum, click on "Forums" above, then it will take you to a new page on which you can click on "Neurology/Neurosurgery" and you'll be in the forum in which the great doc RPS is trying to help me. We have quite an ongoing dialogue. I am not sure what I did wrong here, as my son has numerous cardiac problems which are worsening, and this doc also requested information from me. My e-mail is ***@****.  Keep in touch, please; I value your kindness and extension of friendship, and am very concerned about going back to Mayo; I guess fearful of what I might find out is a better way to put it.

Hugs!