Myriad of problems with formerly healthy, athletic teen

[Kathy]

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.

[my two cents again]

Gotta agree with you, Martie. Nothing said between the doc and the mom is out of line. She's desperate, he's trying desperately to help.

The purpose of this forum is to try and obtain information. It is not to judge. If you are not seeking information (and no one could tell me the stuff on this kid isn't fascinating, really unusual, and very educational), then DON'T READ IT. I know I have learned a lot.

Kathy, I'm sorry people can't keep ugly comments out of your posts about your boy. Just know that we who have the mind to understand, do understand. You have done nothing wrong and if the doc could respond, he'd tell you that. He is a great guy, and you are a great mom.

God bless you. I can't tell you how sorry I am about everything that has happened to your son, and all this trash talk as well.
Hang in there!! If I could hug you for your devotion and your love of you son and God, I would.

[martie]

Obviously, this person is still too much of a coward to post her REAL name and is now trying to make it look like other people are on her side when this is all actually the work of one evil, jealous,attention seeking,irrational individual. She refuses to see what everyone else is posting in support of Kathy and her son and is di-secting every single word that Kathy has posted. Why doesn't she go back to the doctor's post on Christmas day and di-sect that? I don't understand why the staff on this forum isn't seeing what is going on here!

[I Can't Believe This--Again]

When are you people going to leave this mother alone? It takes a big person to attack a mom trying to help her child. I am ashamed to read what you write to her. And you should be, too. Why are you reading posts if you are there to criticize?

Kathy--don't pay any attention. It's obvious to anyone with half a brain that your words to the doc were well intended and so were his to you. These people don't have a clue.......pay no mind to those with no mind, dear!! Hope your boy is doing alright. You have friends in 97% of us!!

[Kathy to Jane]

And once again, I was not here to make anyone feel comfortable or uncomfortable. You also say you are almost "asshamed" (now YOUR spelling, not mine) to agree with others. I wish you would read through what the doctor wrote to me about the "heart-mind interaction" men feel, and writing to me on Christmas Day. I certainly did not take that in any other manner but the way in which he meant it, which was a caring attitude. My son who is sick ran away from his father's drug use and sales to try and help himself. That was a very difficult situation which could have contributed to his problems.

I have not posted anything to this physician since early in February. I think anyone who has anything negative to say should mind their own business. I care about this physician, whom I have, by the way, never met and undoubtedly never will, even though he offered numerous times to see my son and I. He is a good man and there SHOULD be more around like him. If that makes you uncomfortable, don't read about my child. I didn't write to the physician so other people could read about my son and cast judgement. I wrote to get help. And he did help, with the kindest words and concern which I am sure he knew would be exactly what a desperate mother needed. And he was right. All the tests he suggested were ordered, save one.

I am very proud to say that even though I have never met and probably never will meet this physician, he has had a profound effect on my son's and my lives and I care for him very much BECAUSE he is kind, considerate, caring, and, most of all, he tried his best to help us. He listened with his heart and worked with his mind. And for people he doesn't even know.....what more can anyone ask than that?  Maybe to have others who are not involved mind their own business and keep their comments to themselves unless they have medical help to add.

Now PLEASE, let me help my son.

[Jane]

After reading the posts on this board I am almost asshamed to say I have to agree with the others that were posting concerning the context that this doctor was being addressed.  Not only calling the doctor your beloved, and love and hugs that they had mentioned, "Let me tell you, I wish I could find a male locally who has the heart-mind interaction that you do!!" and "Where were men like you wen I was 18 instead of 39??"

I do hope you find the help for your son that you are looking for.  I hope he becomes well again.  

Just for peace sake, this is a public board and people might take offense to the way you have addressed this doctor.  I can see it, as this is a medical board it should stick to that.  

I am terribly sad about the loss of your first child, and the illness of the second, but as a single mother, I wouldn't post about my ex-husband on a medical site, and respond to the doctor with such a manor.  

Good Luck to you, I hope you get the care for your son.

[Kathy to CJ]

Thanks again, CJ. God has provided people like you, and so many others who have responded with goodness and kindness. And God provided Dr. RPS who suggested so many necessary tests. You're right, I have nothing to avenge. You're a real friend.