Where to get help

[Jean123]

My adolescent son was just diagnosed with POTS. Although we have had some relief of receiving a diagnoses, we were also told that he has other symptoms not related to POTS. His has recently been wheelchair bond due to lack of leg coordination and his inability to balance. Because he gets pale immediately upon standing and states that he starts to see black dots his doctor wants him to see a psychologist to rule out anxiety.

Has anyone ever experienced the sudden onset of problems (however not totally blacking out) everytime they stand up?

We live in Texas and I have no idea where to go from here. The only tests that have been performed are EKG, chest x-ray, echo, MRI of the brain, and blood test.

He also has his pressure monitored every week. His blood pressure lowers upon standing and his heart rate increases. He also has MVP. That is all of the info. I have received from his doctors.

I fail to see the connection between standing up and ANXIETY!

Can anyone help?

[Merrill]

Welcome here, Lynna. You've come to the right place for learning and for support. I'm under the weather and only energy to write briefly ... but a few things come to mind: 1) Someone recently wrote that Houston has doctors who understand dysautonomia; I hope that's close for you. YOu can do a search for recent posts including the word Houston and you'll find what I mean. I'm too tired! 2) It would be great if he could have a tilt table test to confirm a pots diagnosis. 3) Check out the links pinned at the top of the discussion board page--there's much to learn, and these links will take you to some very useful information and suggestions for care. 4) dynakids.com is a Web site your son should check out. 5) begin immediately increasing his fluids and salt--and get some compression socks. Those are the top three non-medicinal treatments and ones you can do right away.

I'm sorry your son's having difficulty... but I'm glad you found this site. It's wonderful!

Take care,

merrill

[Miriam Poorman-Knox]

Welcome Lynne,

I understand hoe hard it is to have a child with such a complicates and misunderstood diagnosis. I worked in Houston as a Chaplain for a couple years at a cancer hosp, and a childrens hosp. I agree that the tilt table is important. There are studies/ or were for adolescents with pots. Michelle our moderator has put a link at the top of page. One easy thing is to give him gatorade or electrolyte beverages to make sure he is hydrated, and has enough sodium. The other would be a evaluation by a physical therapist, at childrens or the one they farm you out to. This could help. And yes, children who have illnesses like this can have a significant amount of anxiets, as well as adults. He has been dealing with this for a while-- he is probably afraid. I have always believed that a therapist is your gift to your self!!!!!!!!!!!!!!!!!!!! Although after the required # of hours in Seminary, I go less often. He may really benefit from this. Of course I assume you have a neurologist. Ler me know if I can help, I still have some connections.

Blessings Miriam

[MightyMouse]

Here is the direct link to the topic I pinned; the list includes physician referral sources at the top of the page.

http://dinet.ipbhost.com/index.php?showtopic=1954

Also, for docs in TX, one of our members, TexasGrrl may have some insight. You might try sending her an email or private message

http://dinet.ipbhost.com/index.php?showuser=389

Nina

[Guest tearose]

Hi Lynna and welcome to our forum! I am sorry you are dealing with this and I am sorry for your son.

I am the one with POTS but I have two older teenage sons. I understand that dealing with a teenager can be a challenge enough when you are doing it "right" so to have an adolescent son with a health issue is a greater challenge. Here you won't feel alone anymore!

As others have suggested, begin to put your frustration aside and learn, read and ask questions.

Do you have any reason to think your son has a psychological problem? Are you in super communication with your son? Is he able to discuss nearly anything with you? I think you should trust your instincts and if you think this is not anxiety related, then keep looking for the answer that fits. (Just my opinion and based upon my experience) Is he active in sports and having any other physical medical problems? There are many things that cause his symptoms so I hope you are able to do a complete Autonomic Nervous System evaluation before believing any one diagnosis.

best regards, tearose

[briarrose]

It usually makes me very angry to hear a doctor jump to conclusions about needing a psychologist or shrink to look for anxiety. Case in point, look at the recent post by a firefighter who was symptomatic for 11 years and told that he just had anxiety to finally find out that he really has POTS. I would say that the good majority of us here have heard how we have anxiety or too much stress in our lives. I think doctor's spend more time trying to convince you of it and they are the ones that make you ill or more ill because it is they that are stressing you out! I know what my stress level is and I know what might cause me anxiety and I know that I've been falsely accused. Can you tell this is a hot subject for me! I work around doctors and it's funny when they are sick or have a sudden medical problem, they expect to be taken very seriously, don't dare tell them that they are stressed out.

Anyway, welcome aboard and you will learn much here with us as we all continue to pick up things. There is a great reference area that Nina aka Mighty Mouse has pinned up above the discussion page.

I would recommend that you get all of your son's medical records and copies of all the tests he has done as doctor's don't reveal everything too you and sometimes they even misread or misinterpret the results.

BTW, I have a great article that everyone should read and I think that I'm going to post it on it's own. A friend of mine found it in the Good Housekeeping magazine of October 2003 issue: "I refused to give up on my daughter"

GOOD HOUSEKEEPING

October 2003 pp. 117-120 Health

LISTING IN INDEX:

117 "I Refused to Give Up on My Daughter" Michelle became violent, then suicidal. How her mother solved the mystery- and saved her. LISA COLLIER COOL

"I refused to give up on my daughter"

Once a normal, cheerful teen, Michelle changed very suddenly. So began a long medical nightmare that ended only when her mother solved the mystery...and saved her child?s life.

By Lisa Collier Cool

Lisa Van Syckel saw the flashing lights first, then the police cars?four of them, all clustered in front of her house. Trying to stay calm, she pulled into the driveway, where she saw her husband, Bill, showing a photo to several grim-faced officers. Jumping from the car, she ran to him. "Fifteen years old," he was telling the police. "Long blond hair. Slender build. Dressed in jeans and a blue T-shirt...."

Michelle. Bill was describing Michelle, their daughter. "What?s wrong?" Lisa screamed. "Where is she?"

No one knew. Minutes earlier?while Bill was on his way home from work and Lisa was out running a quick errand?Michelle had tried to kill herself. Their 12-year-old son, Christopher, had heard his sister scream. He ran up to her room, getting there just as she was about to gulp down a handful of pills. Big and strong for his age, the sixth grader tackled Michelle, then grabbed her bedside phone and frantically dialed 911. But as he was shouting for help, Michelle broke free, slammed Christopher?s head into a wall, and ran out the back door.

Hearing this, Lisa cried so hard she could hardly understand the officer. This was Michelle?s third suicide attempt in eight days. "The cop kept saying not to worry they?d find Michelle," she remembers. "But all I could think was, would they find her dead or alive?"

As Lisa raced inside and swept Christopher into her arms, the phone rang. It was one of her daughter?s friends; she?d just gotten a hysterical call from Michelle, who had contacted her from a pay phone at a nearby restaurant. The police immediately set off, with Lisa following in her own car while Bill stayed home to comfort their son.

[LYMEINFO NOTE:

Photo of Michelle and Lisa hugging is omitted from this mailing.

Caption: "Doctors don't listen to you," says Michelle, hugging her mom, Lisa.]

When they got to the restaurant, they saw Michelle crouched outside by the phone booth. But before they could reach her, she fled, running across the railroad tracks. It took three officers to catch her. Even then, she broke out of the handcuffs twice and was biting, hitting, and spitting at the men. When they finally got her into the squad car, she shrieked obscenities and tried to kick out the window. Police took Michelle to a hospital, where, after a furious struggle, she was placed in restraints, then sedated and discharged. Two days later, on October 8, 2000, she was admitted to the adolescent psychiatric ward of University Behavioral HealthCare, in Piscataway, an affiliate of the University of Medicine and Dentistry of New Jersey. There, doctors would wrestle with the question that had been troubling Lisa and Bill for almost a year: What was wrong with Michelle?

Growing up, their daughter had been a normal, cheerful girl who consistently made the honor roll. Then, in 1995, Bill?s company transferred him to Europe. Overseas, Michelle developed some problems, including, in 1997, a bout of bulimia, which lasted six months. She recovered, but two years later, when the family moved back to the United States, to Raritan Township, New Jersey, the change seemed to hit the teen hard. Michelle had trouble concentrating on her schoolwork, and while she was once popular, she now had few friends. In April 2000, she started complaining of dizziness, chest pain, and shortness of breath. When her weight suddenly dropped from her usual 138 pounds to 118, Lisa and Bill took her to Somerset Medical Center, in Somerville, New Jersey. Doctors there diagnosed depression and anorexia, then admitted her to the eating disorders unit.

During her two-week stay, Michelle was put on Zoloft. She developed new symptoms: a slow heartbeat and sudden changes in blood pressure. Joseph Donnellan, M.D., the psychiatrist treating the teen, upped her dosage and diagnosed her with a "personality disorder not otherwise specified." (Through his lawyer, Dr. Donnellan denies there was anything improper about his care of Michelle. A spokesperson for Somerset Medical Center declined to comment.)

Looking back, Lisa says the diagnosis didn?t sound right to her: "A personality disorder seemed so extreme."

Growing more and more upset, she describes the harrowing period that followed: a second stay in the eating disorders unit, three weeks after the first. More doctors. More treatments. And a switch from Zoloft to Paxil, another antidepressant.

That was the beginning of Michelle?s downward spiral, say her patents. Over the next few months, the girl became very agitated. Then Lisa found knives hidden in Michelle?s dresser and learned she was scratching and cutting herself. "I couldn?t believe it," says Lisa. "This was someone who cried if she got a paper cut." Lisa stashed away all the sharp objects in the house and started sleeping in the hallway outside her daughter?s room at night.

The Van Syckels also repeatedly consulted Dr Donnellan, who increased Michelle?s dosage of Paxil. It didn?t help. Not only was she plagued by a growing list of physical symptoms, says Lisa, but by fall Michelle?s self-mutilation was much worse. On September 28, 2000, days before her rampage, she was hospitalized after slashing her body with a razor more than 25 times. And she?d scratched a single, ominous word onto her belly: DIE.

After Michelle?s suicide attempt on October 6, Ileana Bernal, M.D., one of the psychiatrists treating the teen at University Behavioral HealthCare, took her off Paxil. Within a few days, Michelle became violent, pulling children?s paintings off the wall and using the staples to slash her skin. (Dr. Bernal, who is now associated with another facility, declined to comment saying she treated Michelle only "very briefly.")

At this point, Michelle had received enough diagnoses to fill a psychiatric textbook: anorexia, major depression, obsessive-compulsive disorder, and borderline personality features?a serious mental illness that causes distorted thinking, self-injury, and recurrent suicidal gestures. And doctors had prescribed a host of drugs, including, at various times, Celexa, Risperdal, and Depakote, in addition to the Zoloft and Paxil.

"Nothing made sense," says Bill, a 47-year-old executive with a soft voice. "The more the doctors treated Michelle, the more terrible her problems became." In a very short time, he notes, she?d been in several different hospitals and had become impossible to live with. "We were afraid to say anything to her, because she might explode."

Therapists, however, seemed to have little problem blaming the Van Syckels themselves for their daughter?s illness. Lisa was accused of being an "overbearing" mother. And in a way she was, Lisa agrees. Angry that Michelle wasn?t getting better, Lisa pushed the doctors for solutions. "I demanded answers, because I refused to give up on Michelle."

But what really burned Lisa was the theory put forth by one social worker. "She said that in a teen, borderline personality was usually brought on by sexual abuse." Looking both fierce and protective, Lisa states, "Bill is a terrific father. I was furious that he had to deny such a monstrous accusation."

Who knows how long Michelle would have continued in this maze of diagnoses and drugs if it hadn?t been for a chance conversation between the Van Syckels and an old friend. He was very ill, he told them, due to a recurrence of Lyme disease. Initially, like others who?ve had this tick-borne infection, the friend had had a rash, along with a fever and aching muscles. He thought he?d recovered, but ten months later, he had developed severe fatigue, depression, and loss of appetite.

Those symptoms clicked with Lisa. In 1993, Michelle had been diagnosed with Lyme disease?something her parents had mentioned to various doctors. The illness had seemed to clear up after a round of antibiotics. But now that Lisa knew it could come back, she again asked Drs. Donnellan and Bernal if that might explain Michelle?s problems. As she recalls the conversations, both psychiatrists scoffed. "Dr. Donnellan told me I was grasping at straws. Dr. Bernal said I must be in deep denial?my daughter didn?t have Lyme, she was mentally ill."

But Lisa couldn?t let go of the idea. She researched the condition, ultimately learning of a specialist, Andrea Gaito, M.D., president of the International Lyme and Associated Diseases Society, who had published studies on psychiatric and neurological symptoms brought on by chronic Lyme disease.

When the family consulted Dr. Gaito, who practices in New Jersey, tests showed that Michelle actually had two tick-related infections. The teen had not only Lyme disease but also Bartonella, whose symptoms include brain inflammation and, in some cases, impaired thinking. A single tick can carry both diseases.

[LYMEINFO NOTE:

Photo Omitted: Michelle.

Caption: "I was shocked that such a young girl had been placed on such a variety of drugs," says the doctor who finally helped Michelle.]

"Michelle was not mentally ill," reports Dr. Gaito. But Lyme disease can be tricky to diagnose, the doctor explains. It doesn?t always show up in lab tests, and it causes extremely variable symptoms, including psychiatric conditions like depression or panic attacks. Dr. Gaito says that she sees a lot of teenage patients who were initially thought to have other conditions. "But this was an extreme case," she adds. "I was shocked that such a young girl had been placed on such an incredible variety of drugs.?

After Dr. Gaito?s diagnosis of neuropsychiatric Lyme, Michelle went off all drugs and was treated instead with intravenous antibiotics. Gradually, she started to feel better, and now she?s like a new person.

Today Michelle has little memory of the months when she was so violent. But concealed under her long-sleeved shirt and snug blue jeans are scars from her suicide attempts and self-inflicted injuries?problems her parents contend resulted from treatment with Paxil and similar drugs. They have filed a lawsuit against Dr. Donnellan, Dr. Bernal, another psychiatrist, a medical doctor, five hospitals, and GlaxoSmithKline, manufacturers of Paxil. (Dr. Donnellan?s lawyers have filed a response denying these allegations; Dr. Bernal said she was unaware of the lawsuit. GlaxoSmithKline did not return GH?s call.)

Michelle is bitter. "Doctors don?t listen to you or look far enough," she says. "They just give you medicine." A minute later, she smiles shyly as she shows off her report card. "When I was sick, I failed a bunch of classes," she says. "Now, look?all A?s and B?s!" It is spring of her senior year, and she reports, excitedly, that she will be attending the University of Hartford, in Connecticut.

Now Michelle is ready to head out to a shoe sale. But before she goes, she wants to say one more thing. "You know, I used to want everything to end," she says. "Now I?m thinking about college?and the future."

[kristinp29]

Hi Lynna,

I don't know how old your son is, but I got sick with POTS when I was 14 and in my freshman year of high school. I didn't get diagnosed until I was 16--and now I'm 17.5 and in my freshman year of college, no longer experience any symptoms, and am just continually rebuilding my endurance.

Ahhh...doctors. People will tell you that your son has anxiety issues. I've heard it all before. Especially since your son is an adolescent, you'll face the whole "he's stressed out because of school thing". If your son is in high school, it will be even worse that way. Bottom line--your son gets symptomatic when he stands up because he has orthostatic intolerance, not because he suffers from anxiety.

Let me know if I can help in any way, answering any questions, offering any support. Being that your son is young--like I am and was--maybe I can offer some suggestions/support.

I'm here to help. I'm glad that you found this forum. You'll find a lot of great people and great help here.

Love,

Kristin

[Jean123]

Wow! Thanks for all of the responses.

My son is currently under the care of a cardiologist. Although, he has been seen by SEVERAL neurologist who could care less. The first neurologist diagnosed him with migraine headaches (although my son made it very clear that he never has headaches), the next (several neurologist) he saw were in Texas Children's Hospital. They just knew by his symptoms that he had a brain tumor and when the MRI came out fine they dumped him like a hot potato! After a 3 day hospitalization they told us that they didn't treat orthostatic problems and refered us to a clinic that treats vertigo.

I only found ONE doctor that treats POTS in Houston on the websites. Dr. Kelly. I'm going to attempt to call her office today. I also found several doctors in Dallas. Does anyone know anything about Dr. Levine and the clinics in Dallas?

[yogini]

HI Lynna,

Welcome. I think the others have given you great advice. I think seeing spots (sometimes called vitreous floaters) and other visual disturbances are very common symptoms of POTS. There are all sorts of crazy symptoms that come along with POTS which you wouldn't think were related. Michelle has done a great job of listing the symptoms on potsplace.com.

I was also told I had anxiety when I went to the ER after getting my very first POTS attack last year. Doctors sometimes use this as an explanation because they don't understand POTS. I saw a cardiologist and several neurologists in NY, but they didn't really know enough and so my treatment was off track until I found this forum and also saw a couple of POTS specialists.

Good luck,

Rita

[danish]

Hi Lynna,

I'm sorry that your son has to go through all this and I know that it's really hard. I was also accused of my illness not being physiological, but instead of anxiety, they thought I had an eating disorder, even after I was diagnosed. Apparently I had all the "tell-tale signs"; namely fainting, weakness, dizziness, digestive problems, hypersensitivity to temperature changes, fatigue, lowered resistance to illness, headaches, low blood pressure, palor, poor circulation, bags under my eyes, and of course "denial". Anyway, it's very important that you keep fighting for your son. I don't think it would hurt to see a psych, but if you don't think your son's symptoms are caused by anxiety, make sure you prove it.

I do get a sudden onset of symptoms when I stand up; usually I black out (or occasionally faint), but sometimes it's just like what you described your son having. I get the worst after I have been standing for a period of time, but whether one's reaction is delayed or not varies from person to person. I also get the "spots" all the time, and have found that they are fairly common with dysautonomia patients. I do think that having a TTT would help -- I was also diagnosed without one, but it helped to pinpoint all of the bp/hr specifics.

The last thing I want to suggest is that your son join DYNA (the Dysautonomia Youth Network of America). They have a forum, similar to this one, except that it is for kids and teenagers. I know that talking to people my age who can relate has helped me a lot, so I would definitely ask him if he's interested.

Good luck!

Sarina

[geneva]

Hi Lynna,

Welcome to the forum. I am very sorry that your son is so ill and can appreciate the frustration that you are feeling. I had muscle weakness and balance problems at the onset of POTS and would get dizzy standing up but never passed out. I think instinctively I knew to sit down. It was a year after the onset of symptoms before I received a diagnosis.

I live in Texas also but do not have a POTS specialist. I do have a pretty good internist thankfully. I think you are referring to the Southwestern Medical group in Dallas. I have not been there so I do not know personally about the staff but I have heard they have doctors familiar with dysautonomia.

Good luck to you and your son and if there is anything I can help with please let me know. If you are in Houston I am just down the road a little ways and would be glad to speak with you.