Unbelievable

[swampy]

I just had to share this with the group but wasn't sure where to post this. My valve problem was caused by rheumatic fever when I had a strep infection I am guessing around 14 or 15. A very strange thing happened in our family. We were on vacation in Wisconsin and our 13 yr old grandson started acting like he had ADD. Couldn't sit still and was making all these strang movements. We thought maybe he was just excited from all the tubing and sugar and running around. This started on Tues but by Thursday he could hardly sit still. My son went home on Friday and it got progessively worse. He was hitting himself and it was horrible. To make a long story short, he took him to the emergency room at the Children's Hospital and he had had rheumatic fever and this left him with syndham correa, I am not sure of the spelling. Did an echo and found that he already had two leaking valves one in which was the mitral. Had to put him to sleep to do the MRI and spinal tap since he was moving so much. Wanted to make sure it was not something else. Went back a month later and mitral valve was leaking more so they put him on lisinopril which I am taking. He is taking Topomax for the correa which I am also taking for nerve damage in my arm. He will be taking penicillin for the rest of his life I think. Here is the kicker,
WE HAVE THE SAME BIRTHDAY.Is this strange or what? I am so worried about him. The cardiologist thinks that the heart medicine will correct the leak. I pray that it does. I thought that I would share this with you all. I was a member before with the name of Birky but haven't been active for quite a while since I lost my job and other things going on in life.

 

[kfay]

Swampy, I'm sorry to hear about your grandson. I've never heard of this before. I hope that his heart and everything else gets better and doesn't need any other medical intervention.


Kim

 

[nngbwh]

Sorry to hear about your grandson. Hope everything works out O.K.

 

[njean]

I'm not entirely sure I understand what you are saying about your Grandson's situation. How is the medication going to stop his leaky valve?

I had rheumatic fever when I was 21 years old & was on penicillin for months & months until the strep infection was stopped but not before it did irreparable damage to my heart valves. Three years later after the rheumatic fever, I had to undergo a double-valve transplant.

Have you thought of taking him to another cardiologist for a 2nd opinion? Also, Echos don't tell the whole story and can be erroneous. Cardiac catheterizations and/or TEE's are the most reliable sources.

I hope that your grandson gets the help and care he needs soon!

 

[Nancy]

Agree with Norma. My husband had rheumatic fever also. There is no medication that will fix a valve once it is leaking and as you mentioned getting worse. Surgery is the only fix. I hope he gets the help he needs, and I also think another cardioligist should be consulted, just to make sure he is safe.

 

[temp69]

Very strange, to be sure. The good news is we have wonderful docs in this country and he will get terrific care. All my best to you.

 

[AgilityDog]

I'm sorry to hear about your grandson. I have to agree with Norma about getting more extensive tests and a second opinion.

I had so many strep infections in my life, before OHS. had my tonsils removed at 17, and 9 months prior to MVR my nieces got scarlet fever, and passed the strep to everyone at a family funeral. Could that have contributed to my valve issues? Maybe so, because I felt sure I was headed for major illness for the 2 months before the bronchitis and MVP hit me immediately thereafter.

You can't be too careful.

 

[Lynlw]

I'm sorry to her this. DO they think he already had the leaky valves and they picked up on them because they were testing for the Rhumematic fever or that this is new and caused by the fever?
I hope he gets better, it sound scarey all the different symptons he had.

 

[Nancy]

if you want to read about his situation, here are a couple of articles.

http://www.nlm.nih.gov/medlineplus/ency/article/001358.htm

http://www.nlm.nih.gov/medlineplus/ency/article/003940.htm

We do have some members here who developed the chorea symptoms along with rheumatic fever. If you do a search for this Sydenham's Chorea, there are several threads to read.