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Myriad of problems with formerly healthy, athletic teen
My now 15 y/o son, about whom I have posted in the heart forum, has suffered a marked deterioration in his usual perfect athletic health. We first noted HTN in 8-98 during an EBV, strep C infection. A good resting BP would be @150/90+ with paroxysmal bursts as high as 186/128, 170/110, etc. Cardiac testing in 8-99 indicated LVH, rt. atrial enlargement. EKG=RBBB, LVH. Stress test=inverted T-waves upon standing, etc. A 24 hr. urine for catechols elevated at 131 (high normal 80) 5 days following "attack." Renin elevated at 10.3 (high normal 3). Endocrine w/u 9-99 revealed sexual precosity (full puberty age 8). Thyroid tests, tests for 11-hydroxylase deficiency, etc., apparently normal. Has hair distribution, sexual development of 28-30 y/o man. Had MIBG scan for extra-adrenal pheo; left adrenal enhanced thrice more than right but no tumor seen. 5-HIAA for carcinoid syndrome (high normal 5) was 4 on 11-1-99; 3 wks. later elevated at 11.8. Spent 12 days at Mayo; autonomic reflex testing "somewhat" abnormal. Past 3 weeks, pupils are always dilated, frequently fixed and often non-reactive to light; past 1 week they are different sizes. Attending physician at Mayo freaked when he first saw it but ophthalmological exam normal so they decided this was "normal" for him. He also has attacks of anger over things that would never have bothered him before. MRI of brain supposedly normal 10-21-99. Oddly enough, on tilt table testing, we found his BP is now very low (124/45)and heart rate is brady when lying down, but upright it reverts to HTN and he is often tachy again, as before. Renal angiogram with venous sampling was done; supposedly normal, although he does have newly discovered bilat abdominal bruits which they are saying are "normal" for him. He has lost 27# since late 8-99, yet eats like a horse. CT scan of chest, abdomen, pelvis supposedly normal also. (All scans were performed in Chicago.) Since 8-99, he has developed profuse inappropriate sweating, whether in airconditioning or outside in cold weather. Also, since age 8 when he had the rapid puberty (pubic hair, etc.) he has developed a bright red flushing of the lower half of his facial cheeks. In addition, in past 1-1/2 wks., he had periorbital edema. He started on Lopressor, 50 mg. BID on 10-25-99. I want to reduce the nighttime dosage to 25 mg. as his BP and HR are going so low, but Mayo says no, local docs who have cared for him 6 yrs. say yes. They agree with me that NONE OF THIS IS NORMAL FOR HIM. They are very concerned; I am beside myself. The child goes downhill every day; how can any of this be "normal?" I am very concerned about the eyes; many things could have happened between the time of the MRI and the ophthalmologic exam. Anisocoria has many causes, I realize, including increased intra-cranial pressure. Why is everything dismissed as normal when none of it ever happened prior to August of 1999? Child is a top athlete in 3 sports; Mayo is going to fax a release for him to return to varsity football (starting quarterback) and basketball (forward taking charges to draw fouls). Do you have any suggestions for me, please? I know my son, I have worked in medicine for 18 years, and myself, along with his local physicians, know darned good and well that none of this is normal for this wonderful young man. I would be eternally grateful if you could shed some light on this situation. It is destroying our lives, and he is changing before my very eyes; his pants fall off without a belt (waist went from 36 to 31-3/4 in. in 6 wks. and weight still dropping. Thank you so much.
No, I have not attacked anyone in the forums. I truly don't even understand your comments and questions. My comments to others have been regarding the National Dysautonomia Research Foundation for neurological questions.
I don't quite understand your comment, either, about "getting my son some care." What do you think I have done and been trying to do? My son has stumped Mayo Clinic! And I took him there for 4 weeks, putting him through painful tests and procedures. I research everything I can to help come up with answers myself. I don't know anything about internet flame-throwers. I spend time on the internet trying to find others with similar situations in an attempt to put 2+2 together and come up with a 4. I am desperate. I watch him decline every day of my life and it is literally killing me to watch this happen to my second son. I've already done it once.
I have tried everything within my power. I think your comments are cruel, ill-advised, and rather sick. You can take your "Netiquette"-a term I am unfamiliar with, and keep it. I just want help. If you can't see that, then open your eyes and leave me alone. I didn't start all this.....I asked for help from the physician, and I received it. I really don't understand for the life of me why people have a problem with that. Go away, please? I would like to continue to read this forum, among many others, to see if anyone else posts information that would help. Instead, I also see myself getting trashed, and now for something I didn't even do? I have better things to do, yes, than post nasty comments. Try it; you might really like it.
Now please, for the love of God, leave me alone!! I have a sick child for whom to find help!!
I don't quite understand your comment, either, about "getting my son some care." What do you think I have done and been trying to do? My son has stumped Mayo Clinic! And I took him there for 4 weeks, putting him through painful tests and procedures. I research everything I can to help come up with answers myself. I don't know anything about internet flame-throwers. I spend time on the internet trying to find others with similar situations in an attempt to put 2+2 together and come up with a 4. I am desperate. I watch him decline every day of my life and it is literally killing me to watch this happen to my second son. I've already done it once.
I have tried everything within my power. I think your comments are cruel, ill-advised, and rather sick. You can take your "Netiquette"-a term I am unfamiliar with, and keep it. I just want help. If you can't see that, then open your eyes and leave me alone. I didn't start all this.....I asked for help from the physician, and I received it. I really don't understand for the life of me why people have a problem with that. Go away, please? I would like to continue to read this forum, among many others, to see if anyone else posts information that would help. Instead, I also see myself getting trashed, and now for something I didn't even do? I have better things to do, yes, than post nasty comments. Try it; you might really like it.
Now please, for the love of God, leave me alone!! I have a sick child for whom to find help!!
Haven't you attacked before on other forums? Do you have anything better to do, Like get your son some care? If my child was sick, I wouldn't have the time to sign on the internet, much less keep posting flames. Rules of Netiquette (the internet equivalent of a shouting match) When one encounters a flame war, be prepared to witness a cyberspace version of the grade-school playground, actually much worse because grade school children won't devote as much energy to getting the last words as some Internet flamers spend.
Back Away, do the smart thing, if you have been offended. Don't keep it going, let the site be what it is supposed to be used for. Generic Answers to Medical Questions.
Back Away, do the smart thing, if you have been offended. Don't keep it going, let the site be what it is supposed to be used for. Generic Answers to Medical Questions.
For crying out loud, will you people with nasty minds and nothing better to do please knock it off!!
Give mom a break. She hasn't posted to the doc for a long time and yet you people with nothing better to do just can't let it rest.
PLEASE!! Leave her alone and let her get her kid well. She deserves your pity, not your wrath.
Give mom a break. She hasn't posted to the doc for a long time and yet you people with nothing better to do just can't let it rest.
PLEASE!! Leave her alone and let her get her kid well. She deserves your pity, not your wrath.
I haven't been in the forum for awhile. In fact, the last time I had read information about this boy was when he and the mother got back from Mayo Clinic the last time. I see a lot has changed since then!!
First of all, this mom requested help from the doctor. I see nothing wrong in anything she posted. In fact, I see gratitude, thankfulness, appreciation, caring, but most of all, I see desperation. I lost a child at 3 years old. I also had a second child who became sick and for 4 months no one knew what was wrong with him. When the doctors found out what the disease was and offered us a possible cure, I will be the first to proudly admit that I hugged him, and I kissed him on the cheek. My husband put his arms around this doctor and hugged him, with tears flowing in thankfulness. I have hugged him many times since when we have been in for follow-up visits. I have also hugged the surgeon.
Unless you have been through the same thing, you have no right to speak or criticize. Kathy is right about not caring whether you are UNCOMFORTABLE. If you are COMFORTABLE reading what she and her son are going through, then you are sick people. I can't imagine what it must be like to be going through this for so long and still not know with 100% accuracy what you are dealing with.
Kathy, I, too, am sorry for the ugly comments made to you. My heart goes out to you and your son. I hope and pray all goes well. You should be very proud of yourself.
First of all, this mom requested help from the doctor. I see nothing wrong in anything she posted. In fact, I see gratitude, thankfulness, appreciation, caring, but most of all, I see desperation. I lost a child at 3 years old. I also had a second child who became sick and for 4 months no one knew what was wrong with him. When the doctors found out what the disease was and offered us a possible cure, I will be the first to proudly admit that I hugged him, and I kissed him on the cheek. My husband put his arms around this doctor and hugged him, with tears flowing in thankfulness. I have hugged him many times since when we have been in for follow-up visits. I have also hugged the surgeon.
Unless you have been through the same thing, you have no right to speak or criticize. Kathy is right about not caring whether you are UNCOMFORTABLE. If you are COMFORTABLE reading what she and her son are going through, then you are sick people. I can't imagine what it must be like to be going through this for so long and still not know with 100% accuracy what you are dealing with.
Kathy, I, too, am sorry for the ugly comments made to you. My heart goes out to you and your son. I hope and pray all goes well. You should be very proud of yourself.
The only problem is, I don't recall anyone asking for your opinion, nor anyone else's, unless they could add from their own experiences. I asked for the opinion of the physician, and I got it.
And once again, I don't care if I made anyone "comfortable" or "uncomfortable." You know, Jane, and anyone else who is on the smear campaign ifyou read the information in these posts, whether from me or from other people who are terrified, whether for themselves or their children, how can you be "comfortable?" Doesn't it make you rather "uncomfortable" to read how people are suffering and desperate? It does me, and yet I have the common decency, no matter what I read, not to ambush someone for ANY REASON WHATSOEVER. The posts are between the physician and the person requesting help.
Yes, this is a "PUBLIC" forum. However, I do believe that by public it is meant that information posted in these forums are open to be READ by the public for their own benefit. I don't think it is intended to be read and then have people post nasty, belittling comments. When the staff reads the types of things you have written, and the types of things some of these other rather odd people have written, they will totally remove everything about my son and then no one can help. The staff does not condone, nor do they allow, the types of posts that you and "enough is enough" and whoever else add. YOURS ARE THE POSTS THAT CAUSE ALL THE INFORMATION TO BE DELETED. The staff does not allow you to attack the person who is communicating with the physician.
My son does not have an eating disorder. He loves food but can't digest it nor absorb what he needs from it. If you had truly read about HIM with concern, you would have plainly seen that in the postings "to the doctor."
And to tell you the truth, you didn't "ruffle my feathers." You and the others with demeaning comments made me and alot of other concerned, caring people downright angry. I haven't posted anything to the physician for weeks. And I have simply requested that people who have nothing to add stay out of my information.
Walk in my shoes and then you have my permission to comment all you want. Until then, I don't care if anyone is offended. And I certainly don't feel guilty that God put love in my heart, especially for a wonderful, kind, considerate and tender-hearted physician who truly tried to help. If you and any others have a problem with that, then you know what? I would suggest you get yourself some serious help. And thank God you are not in my position, nor are your children. Picture it, one dead, the only other living one a medical mystery. Thank your lucky stars you aren't in my position!! And please, all of you, find something better to do than worry about being "comfortable" or "uncomfortable."
Now that I have voiced MY opinion, please, once again, leave me alone. Mind your own business. Go away. Whatever. Read about someone else besides my poor child. But don't attack them either. That IS NOT THE PURPOSE OF THE FORUM!! I have done nothing wrong and I appreciate everything Dr. RPS has done.
He has been a true Heaven sent blessing to us.
And once again, I don't care if I made anyone "comfortable" or "uncomfortable." You know, Jane, and anyone else who is on the smear campaign ifyou read the information in these posts, whether from me or from other people who are terrified, whether for themselves or their children, how can you be "comfortable?" Doesn't it make you rather "uncomfortable" to read how people are suffering and desperate? It does me, and yet I have the common decency, no matter what I read, not to ambush someone for ANY REASON WHATSOEVER. The posts are between the physician and the person requesting help.
Yes, this is a "PUBLIC" forum. However, I do believe that by public it is meant that information posted in these forums are open to be READ by the public for their own benefit. I don't think it is intended to be read and then have people post nasty, belittling comments. When the staff reads the types of things you have written, and the types of things some of these other rather odd people have written, they will totally remove everything about my son and then no one can help. The staff does not condone, nor do they allow, the types of posts that you and "enough is enough" and whoever else add. YOURS ARE THE POSTS THAT CAUSE ALL THE INFORMATION TO BE DELETED. The staff does not allow you to attack the person who is communicating with the physician.
My son does not have an eating disorder. He loves food but can't digest it nor absorb what he needs from it. If you had truly read about HIM with concern, you would have plainly seen that in the postings "to the doctor."
And to tell you the truth, you didn't "ruffle my feathers." You and the others with demeaning comments made me and alot of other concerned, caring people downright angry. I haven't posted anything to the physician for weeks. And I have simply requested that people who have nothing to add stay out of my information.
Walk in my shoes and then you have my permission to comment all you want. Until then, I don't care if anyone is offended. And I certainly don't feel guilty that God put love in my heart, especially for a wonderful, kind, considerate and tender-hearted physician who truly tried to help. If you and any others have a problem with that, then you know what? I would suggest you get yourself some serious help. And thank God you are not in my position, nor are your children. Picture it, one dead, the only other living one a medical mystery. Thank your lucky stars you aren't in my position!! And please, all of you, find something better to do than worry about being "comfortable" or "uncomfortable."
Now that I have voiced MY opinion, please, once again, leave me alone. Mind your own business. Go away. Whatever. Read about someone else besides my poor child. But don't attack them either. That IS NOT THE PURPOSE OF THE FORUM!! I have done nothing wrong and I appreciate everything Dr. RPS has done.
He has been a true Heaven sent blessing to us.
First, I am posting with my own name. Second, I was not critizing. I do agree that the doctor has tried to help Kathy, and I have read this post occasionaly through the time she first posted on the forum. I never said it wasn't educational. I just read what the others posted and since it is a PUBLIC board, I have a right to voice my opinion. I am not blasting anyone. I feel deep sympathy for Kathy and for her teenage son. I do know what it is like to have sick kids. I also would go to the ends of the earth for my kids. It just seemed out of context for the doctor to be addressed that way. It is uncomfortable and I could see how others can take offense to that. There is nothing wrong with speaking an opinion. I have learned in my many years when someone takes a defensive approach, it usually means they are guilty? You don't have to justify yourself to me, or anyone else. So don't try to blast me for my opinion. I do hope you get the help for your son, and I hope it gets taken care of soon. Also this may seem totally off the wall, but has anyone checked him for an eating disorder? That can cause many things? I know you said he was eating like a horse, but there is other ways they can get rid of their food. I am saying this because a friend of mine has a 17 year old boy who started getting really sick when he was 15, loosing weight, heart problems, kidney problems, grey tint to the skin, and they couldn't figure it out. Blood test were off everything. They sent him to the Mayo clinic and he was even hospitalized for 2 months there. After they were back home and he was still going down hill a local doctor said that he thoguht he had an eating disorder, he is very athletic, competive, smart. If you haven't checked that out you might want to mention it.
I am sorry if I rustled your feathers, I just wanted to say I could see how your post could offend others. Good Luck to you and your son.
I am sorry if I rustled your feathers, I just wanted to say I could see how your post could offend others. Good Luck to you and your son.
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