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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.
A related discussion, Myriad of symptoms was started.
We have an appointment in a few weeks with our local physician to go over the results of the amino acid tests and contact the doctor as recommended by Dr. RPS. Additional re-testing will be done locally to see if Jonathan even stands a chance of passing a sports physical, and also to look for more answers.
I have made repeated calls to Mayo to try and obtain information on their feelings regarding these findings but my calls are not returned; hence, I think we are done there. How sad.
Jonathan is in baseball now and very happy about it. His appetite in the evening is slightly increasing; he has not lost any more weight in the past 2 weeks but has also not gained any. His blood pressure and heart rate remain within normal limits. However, the increased activity he is not used to is making him very, very tired and he is sleeping more. But he is having fun for the first time in about 6 months.
I agree with you about the arguing and nasty comments. I think they were very unnecessary when I was trying to obtain help, which I thankfully did receive from this physician. I stopped posting anything other than the amino acid results Dr. RPS requested in the hopes that people would stop attacking me. I struck out because I was hurt and desperate and that may have been wrong, as well.
I admit funds have basically run out with the massive outstanding medical bills now incurred, plus the expenses of hotels, etc. involved in travel to Minnesota on numerous occasions, and all the missed work. But I remain determined to figure this out and hopefully will find someone who can do it.
It is very frustrating, and frightening, to have already had Jonathan go through so much to have found out basically nothing as far as a REASON for all this, except that many things were "swept under the rug" and not told to me. But the old saying is "never give up the ship" and I won't. He is all I have.
Thanks for your interest. And thanks again to Dr. RPS for being the only physician who has truly helped, and sincerely cared. I will always be in his debt.
I have made repeated calls to Mayo to try and obtain information on their feelings regarding these findings but my calls are not returned; hence, I think we are done there. How sad.
Jonathan is in baseball now and very happy about it. His appetite in the evening is slightly increasing; he has not lost any more weight in the past 2 weeks but has also not gained any. His blood pressure and heart rate remain within normal limits. However, the increased activity he is not used to is making him very, very tired and he is sleeping more. But he is having fun for the first time in about 6 months.
I agree with you about the arguing and nasty comments. I think they were very unnecessary when I was trying to obtain help, which I thankfully did receive from this physician. I stopped posting anything other than the amino acid results Dr. RPS requested in the hopes that people would stop attacking me. I struck out because I was hurt and desperate and that may have been wrong, as well.
I admit funds have basically run out with the massive outstanding medical bills now incurred, plus the expenses of hotels, etc. involved in travel to Minnesota on numerous occasions, and all the missed work. But I remain determined to figure this out and hopefully will find someone who can do it.
It is very frustrating, and frightening, to have already had Jonathan go through so much to have found out basically nothing as far as a REASON for all this, except that many things were "swept under the rug" and not told to me. But the old saying is "never give up the ship" and I won't. He is all I have.
Thanks for your interest. And thanks again to Dr. RPS for being the only physician who has truly helped, and sincerely cared. I will always be in his debt.
thanks for the comments.
CCF Neuro MD
CCF Neuro MD
Dear Kathy: Because of similar medical conditions involved, you and I have posted to some of the same boards. I am distressed to see the wasteful arguing going on here, which is lacking focus on the main issue involved, which is getting help for your son. I am extremely concerned about his condition, and I would like to see an update on what is actually being done. Many of us here are worried about him. I beg that you please take the advice of the doctor at this board and see the recommended professionals.
Thank you so very much. Will proceed as necessary.
God Bless.
God Bless.
Dear Kathy:
The results from the urine amino acid screen are abnormal. They are non-specific but I would agree they indicate a renal dysfunction, likely proximal tubule. Amino acid screens such as this would be a soft call for a metabolic disorder. However, with the other tests your son has, it might be just a piece of the metabolic puzzle. The alanine to lysine ratio is normal, suggesting that he likely does not have difficulty with glucose metabolism. I would have your family physician call Marvin Natowicz at the University of Mass. with the amino acid results and get his opinion.
CCF Neuro MD
The results from the urine amino acid screen are abnormal. They are non-specific but I would agree they indicate a renal dysfunction, likely proximal tubule. Amino acid screens such as this would be a soft call for a metabolic disorder. However, with the other tests your son has, it might be just a piece of the metabolic puzzle. The alanine to lysine ratio is normal, suggesting that he likely does not have difficulty with glucose metabolism. I would have your family physician call Marvin Natowicz at the University of Mass. with the amino acid results and get his opinion.
CCF Neuro MD
Hi...I don't know if you will see this but I finally have the info you requested on these tests. I will list the abnormalities for sake of space with normal reference ranges in parentheses. The amino acid I panel indicates a-amino-n-butyric is 33 (4-31), cystine is 47 (5-45), pyruvic acid(b) 0.07 (0.08-0.16). However, urine amino acids II is awful: taurine 1847 (35-260), threonine 183 (25-100), serine 349 (93-210), asparagine 99 (15-40), gluatamine 647 (150-400), glycine 1547 (185-855, alanine 425 (65-190), valine 93 (17-37), cystine 63 (11-53), cystathionine 14 (2-7), methionine 48 (7-20), isoleucine 48 (3-15), tyrosine 160 (30-83), phenylalanine 84 (20-61), b-aminoisobutyric 11 (25-96), ornithine 19 (3-16), lysine 191 (19-140), 1-methylhistidine 2711 (41-300), histidine 899 (46-725), 3-methylhistidine 384 (42-135). This would make the alanine/lysine ratio 2.225 if I understood you correctly? What does that mean?
The interpretation of this report states "we detect a pattern of amino aciduria. This finding is indicative of either a renal tubulopathy or acute liver dysfunction. Clinical correlation necessary." Also, alk phos was 257 (299-1110) and AST (GOT) was 15 (16-36).
Mayo has recommended against further investigation. Jonathan's status is not improving. If you see this and have any suggestions for me, I would appreciate any information. The doctors here don't know what to do (this was supposed to be the mitochondrial testing, I believe).
In addition, his renal angiogram report states that "there is incidental note of a replaced right hepatic artery." Since Jonathan does not have a replaced right hepatic artery, could they mean displaced? Could this explain the huge abdominal bruit for which there is no explanation?
Thanks and I won't write any more unless you ask me to provide further details. It took me all this time to obtain the information you requested. I am really worried about these results.
Thanks again for all of your help. It has been truly appreciated.
The interpretation of this report states "we detect a pattern of amino aciduria. This finding is indicative of either a renal tubulopathy or acute liver dysfunction. Clinical correlation necessary." Also, alk phos was 257 (299-1110) and AST (GOT) was 15 (16-36).
Mayo has recommended against further investigation. Jonathan's status is not improving. If you see this and have any suggestions for me, I would appreciate any information. The doctors here don't know what to do (this was supposed to be the mitochondrial testing, I believe).
In addition, his renal angiogram report states that "there is incidental note of a replaced right hepatic artery." Since Jonathan does not have a replaced right hepatic artery, could they mean displaced? Could this explain the huge abdominal bruit for which there is no explanation?
Thanks and I won't write any more unless you ask me to provide further details. It took me all this time to obtain the information you requested. I am really worried about these results.
Thanks again for all of your help. It has been truly appreciated.
No, I didn't mean the word Martie said. She wasn't referring to the boy. She was referring to someone who was making nasty comments. That is obvious and easily understood. I was talking about your remark that maybe Jonathan deserves a free trip to Cleveland Clinic because of his mother. That's insulting.
CJ is right. To all of us who support this mom, and to mom herself---from now on, let these stinking, cold, dead fish who trash this mother rot. It's what they deserve and a person reaps what he or she sows.
To mom--know we support you and Jonathan. We hope and pray everything will turn out okay and that someone can find the answers. Good luck to you. Now forget about the rotten, smelly fish and keep researching for the information you need, like you have been all alone. I do hope the doc can see what these people have done. I feel horrible for you. And so do many others.
God bless you both, mother and son!!
CJ is right. To all of us who support this mom, and to mom herself---from now on, let these stinking, cold, dead fish who trash this mother rot. It's what they deserve and a person reaps what he or she sows.
To mom--know we support you and Jonathan. We hope and pray everything will turn out okay and that someone can find the answers. Good luck to you. Now forget about the rotten, smelly fish and keep researching for the information you need, like you have been all alone. I do hope the doc can see what these people have done. I feel horrible for you. And so do many others.
God bless you both, mother and son!!
I think it was Shakespeare. From "The Tempest"... "Misery acquaints a man with strange bedfellows." We supporters and sympathizers can only say, "This one is the worst."
I say to all dedicated supporters... that in taking revenge on this (these) idiot(s), we become equal. If we ignore the idiot, we are far more superior.
There's this old English proverb that keeps attacking my mind. It goes like this: "Vengence is a dish that should be eaten cold." So, to all supporters and sympathizers, I beg for a return to warm dedication and let this cold fish rot in the sun. - C J
I say to all dedicated supporters... that in taking revenge on this (these) idiot(s), we become equal. If we ignore the idiot, we are far more superior.
There's this old English proverb that keeps attacking my mind. It goes like this: "Vengence is a dish that should be eaten cold." So, to all supporters and sympathizers, I beg for a return to warm dedication and let this cold fish rot in the sun. - C J
I don't believe anyone made lousy comments about sick kid, much less a kid. Are you refering to the name Martie was using? I know she kept using a word that I can't even bring myself to say.
I don't believe anyone made lousy comments about a a kid, much less a kid. Are you refering to the name Martie was using? I know she kept using a word that I can't even bring myself to say.
It takes a big person to now make lousy comments about a sick kid. How can you live with yourself and insult this child.
If this is the longest post, it's probably because the physician was trying so hard to help my son. He asked for additional information I cannot even provide due to the time contraints. The rest of the posts are simply attacks against me. I honestly don't know why. I am trying my best to help Jonathan and he goes downhill every day. It is very difficult to watch this happen to your only child. Then I got "attacked" so to speak, and many people have posted supportive messages, and then attackers have responded, and so have I. I don't consider that my fault. I don't know you people, nor would I have ever considered attacking you if you were in my position. I am desperate for help and can't seem to find the answers to my son's illness, and neither can Chicago or Mayo. I don't know what else to do or where else to go. Funds are running out. I don't think we deserve a free trip to CCF; I don't understand that statement.
To the other party: I wanted my questions about my child open to anyone, whether it be a physician or a layperson, who might have some answers, insight, suggestions, personal experience, etc., to share with me so that it might enable me to come up with some answers. Is that so much to ask? I just didn't ask to be attacked for something misunderstood. The posts were between myself and the physician. If anyone could add helpful information, I have and will be appreciative and thankful. That is the purpose of the forum. I don't think the forum was intended to have people attack someone who is desperate for help and will seek it from any avenue necessary for the sake of a very ill child. Try to understand how difficult it is for no one to be able to find an answer and help him. He is a wonderful young man with his whole life ahead of him and it's not fair that all this happens, and we spend so much money, time, effort, pain, and can't find anyone who can figure this out completely. Understanding and help is all that is asked for.....not criticism and ugly comments.
I cannot control what others say. I didn't want anyone to respond to anything here but the physician, and anyone else who might could offer help. That is the purpose of the forum, or so I thought. But I think a physician who e-mailed me personally after reading this forum, and who is trying to help me as well because he is interested and perplexed, said it best: "When people haven't been in your position and are jealous of your knowledge and dedication to your child, consider the source and forget them." Good plan.
I never intended to bother anyone, offend anyone, etc. I just desperately need help and truly don't know where to go or what to do. I don't have unlimited financial resources, I am a single working mother, but I am scared to death, and very thankful to the physician, and the literally hundreds of others who have tried to help me. Why is that so hard to understand? I could certainly empathize and sympathize with anyone else in my position. Why attack me? I don't understand what it proves.
To the other party: I wanted my questions about my child open to anyone, whether it be a physician or a layperson, who might have some answers, insight, suggestions, personal experience, etc., to share with me so that it might enable me to come up with some answers. Is that so much to ask? I just didn't ask to be attacked for something misunderstood. The posts were between myself and the physician. If anyone could add helpful information, I have and will be appreciative and thankful. That is the purpose of the forum. I don't think the forum was intended to have people attack someone who is desperate for help and will seek it from any avenue necessary for the sake of a very ill child. Try to understand how difficult it is for no one to be able to find an answer and help him. He is a wonderful young man with his whole life ahead of him and it's not fair that all this happens, and we spend so much money, time, effort, pain, and can't find anyone who can figure this out completely. Understanding and help is all that is asked for.....not criticism and ugly comments.
I cannot control what others say. I didn't want anyone to respond to anything here but the physician, and anyone else who might could offer help. That is the purpose of the forum, or so I thought. But I think a physician who e-mailed me personally after reading this forum, and who is trying to help me as well because he is interested and perplexed, said it best: "When people haven't been in your position and are jealous of your knowledge and dedication to your child, consider the source and forget them." Good plan.
I never intended to bother anyone, offend anyone, etc. I just desperately need help and truly don't know where to go or what to do. I don't have unlimited financial resources, I am a single working mother, but I am scared to death, and very thankful to the physician, and the literally hundreds of others who have tried to help me. Why is that so hard to understand? I could certainly empathize and sympathize with anyone else in my position. Why attack me? I don't understand what it proves.
Did you ever think to drop it? What is with the name calling Martie? I thought you were above that. If you didn't want your question to be open to the WORLD, than you shouldn't have posted it on the internet. "mind your own business" you say, well don't post on a Public board!!!!!
Shouldn't Jonathan get a free trip to the Cleveland Clinic for tests as Mom's reward for having the longest post in the history of this forum?
Well, if this doesn't bet them all!! Attacking the mother again, saying she needs to take care of her kid? What are you, a sociopath? What in the name of sense do you think she has been trying to do? Can you read the volumes of information posted here? This boy's work-up has to have cost close to $100,000!!
I don't even want to read the **** you people put in this forum anymore. I have been interested in what is going on with this boy since the beginning, but I can't abide the way you treat this poor woman.
You people ought to be very ashamed of yourselves. I am ashamed to read what you write. I am ashamed there are human beings out there like you. You disgust me. It is obvious you have WAY too much time on your hands to be able to go after the mother of one dead child and one sick child and then try to blame her for everything.
Go beg the Lord for forgiveness before it's too late!!!
Mom--I apologize for these "people." Good luck to you and your son. Keep up the good work. Those of us who are "normal" do care and wish you the best. You are doing a great job.
God bless you and your son.
--Someone who cares
I don't even want to read the **** you people put in this forum anymore. I have been interested in what is going on with this boy since the beginning, but I can't abide the way you treat this poor woman.
You people ought to be very ashamed of yourselves. I am ashamed to read what you write. I am ashamed there are human beings out there like you. You disgust me. It is obvious you have WAY too much time on your hands to be able to go after the mother of one dead child and one sick child and then try to blame her for everything.
Go beg the Lord for forgiveness before it's too late!!!
Mom--I apologize for these "people." Good luck to you and your son. Keep up the good work. Those of us who are "normal" do care and wish you the best. You are doing a great job.
God bless you and your son.
--Someone who cares
Kathy, what you've got to realize is there are thousands of people on the internet these day and only a very small number is being cruel to you. Please remember that the majority of postings on here are in your favor and only a few are from the one who should post his or her name as "*******!!!!!!". And don't let this ******* make you feel like you owe any explanations as to what you"re doing with your time. Any idiot would know that the reason why you're even on this forum is to seek help for your son. Sometimes on this earth, creatures do crawl from under their slimy rocks.Eventually they either go back under or they get swallowed by their enemies! There is strength in numbers so get your strength from all of the people who are supporting you and don't let the minority drag you down to their level! And I don't blame you for responding to their attacks! They keep provoking it, not you! I keep saying "they" but it's most likely a "she". Hang in there, Kathy, and instead of feeling discouraged by the "*******", be light hearted that so many people genuinely care about you and Jonathan. Love and peace to you both. MARTIE,your friend always. Watch the attack on me now!!!!!
I absolutely can't believe how you people won't stop picking on this mom!!! You ask her if she doesn't have anything better to do, like get her son some care? What in the heck do you think she's been trying to do? Four weeks at Mayo Clinic? Test upon test? Weeks at Chicago hospitals? And still no clear cut answers?
For God in Heaven's sake, give the woman a break!! I can't even deal with these horrible comments to this pitiful mother anymore. And you wonder why she answers? It's disgusting and downright blasphemous what you are doing to her.
All I can say is, I hope this is what makes you feel like BIG bad human beings. Because you are NOT. Shame, shame, shame. This is the worst yet.....to suggest she get her son some care. Wow-I admit I am absolutely stunned at this arrogance. Tops anything I have seen in a long time!! Hope you feel really good about yourself because others, like me, think you are an idiot of the first order. I hope the doc is reading what you are doing to her.
For God in Heaven's sake, give the woman a break!! I can't even deal with these horrible comments to this pitiful mother anymore. And you wonder why she answers? It's disgusting and downright blasphemous what you are doing to her.
All I can say is, I hope this is what makes you feel like BIG bad human beings. Because you are NOT. Shame, shame, shame. This is the worst yet.....to suggest she get her son some care. Wow-I admit I am absolutely stunned at this arrogance. Tops anything I have seen in a long time!! Hope you feel really good about yourself because others, like me, think you are an idiot of the first order. I hope the doc is reading what you are doing to her.
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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