My daughter was recently diagnosed with POTS after visiting numerous doctors and undergoing numerous diagnostic testing and countless blood work. Tilt Table proved positive for POTS. Though we were never formerly told what her diagnosis was except that she was fragile and only God knows why she is so fatigued. Upon reading our copy of her tilt table results I found the diagnosis of POTS. I did my research online and was suprised and somewhat relieved that all of her symptoms were now making sense. Unfortunately we still feel as though we are running up against brick wall after brick wall where doctors are concerned. Feeling as though no one believes that she could really be feeling the way she does. Difficulty getting out of bed in the mornings, near fainting and/or fainting upon standing up as her blood pressure plummets and her heart rate spikes. She complains of heart palpitations, blurred or blacked out vision, headaches, pressure behind eyes, numbing/tingling in hands and feet, sensation of ants crawling under her skin, extreme fatigue, difficulty concentrating, dizziness...etc. etc...

I know this is nothing new to all of you but this is new to us and it all began late September after participating in a school blood drive. From that point on she has suffered tremendously.

We have discussed her dizziness, blurred vision, and falls to her pediatrician since they began at age 10. Her treatment plan was for my daughter to eat more pretzels and drink gatoraide.

Well, we are beyond that now because it never helped in the base case. Now her symptoms have worsened in the past 6 months.

Our wishes and prayers are to find a doctor that not only has knowledge in this field but cares about his/her patients.

My duaghter was accepted to the University of choice with a music scholarship but the prospects of her going away to college under these conditions are looking grim. Although we don't want to take her hard work and dreams away, as parents we struggle with the unpopular decision to keep her homebound until we find help and/or conditions improve.

Any thoughts or advice would be greatly appreciated. I am very new to chats/forums. So I hope this goes through and I didn't bore anyone...LOL

Hi there...
And welcome. I'm sorry that your daughter is experiencing all of these things...and I certainly can identify w/ having difficulty with doctors. The most important thing you can do right now is find a doctor who specializes in dysautonomia. I can't believe that your doctor did not share the diagnosis with you! Well, actually, I can believe it...a lot of them are unbelievable.

Anyway, check out the ndrf.org website to see if you can find a doctor there or dinet.org has a physician referral list as well.

You'll find a lot of support here - and hopefully some more answers as well.

Hi and thank you for your quick reply. I have been working my way down the lists of doctors on both websites. Made contact with 3 including Mayo in Florida. One had an opening in March of '09 way too long of a wait for us. Another will not treat my daughter because of the distance but his nurse has been extremely helpful. With Mayo, we are on a waiting list, told it could be a 3 month wait to see Dr. Cheshire. Did find a doctor in Pensacola who not only specializes in Dysautonomias...POTS he himself has it. Sounds like a winner to me! Unfortunately he does not accept insurance, but hey, we have wasted a fortune on doctors that do accept insurance and have gotten nowhere. I have spoken to his office manager about setting up an appt. He requires doctor referrals but I am having difficulty getting getting one from my daughters doctor.

You would think it should be my decision who she sees and where to go? Unfortunately he keeps sending us to local doctors that seem to think it is all in her head. Perhaps it is time for yet another PCP.

Frustrated...confused...and warnout but willing to go the distance for answers.

Thanks again for your advice and I will certainly keep plugging away on those lists. The websites have been very helpful and informative. My daughter joined dynakids.org and is enjoying all the feedback and wealth of information.

You know after having these illnesses for as long as I have had them, I do not believe I would want to have a md who had this business himself. Blackouts, confusion, memory loss, days out to fatigue or not being add 2+ 2. This is not a put down, but I think the self afflicted mds would be too ill most of the time to take care of me and his other patients. We are tough to take care of, and I can't get up some days then why should he be able to? This stuff is not cured! If all of us out here weren't begging for simple answers then yeah that would be good, but its not the case. Those mds don't have better answers for thier problems than we do. Someday I believe it will happen, but I sure don't know when. Soon I hope.
Welcome aboard, bud, we're here for uou.

PS, second reply--this one after I cooled down a little. I believe you said your daughter is only 13. She should qualify for medicaid--this is one of those swallow pride kinds of those things, but what is more important your daughters health or you pride? Get her birth certificate, any medical and shot records you have and tell then you would gladly have her records send to the clinic. They will most likely not go to straight to fhe pediatric clinics--unless the child is fatal, and POTS IS NOT Considered Fatal. What they will do is check her out(and this is where the copy of your records where she was diagnosed with POTS and the TTT and lab results results are going to keep you going. Start note book. Not for the bills(that comes later) , but for what the drs say and if you don't know what the word means look it up(ask him to spell it.) Next write whown what you told him also, because your because your questions and his answerws will mean a lot. Your finaly should start get some answers from the specialist that day. He may be want to do more tests but you will be on the road. Just remember it is not considered curable, just treeatable. ............and course the big prize, ha, ha, ha, ha.

As a mom of two teens with POTS, I can definitely relate to where you are right now, the frustration with doctors, lack of belief, insinuation that you the parent are imagining the problem, etc. etc. You are doing the right thing to search and travel if necessary to see someone who treats POTS and who believes and understands. The belief and understanding alone is of great value.

Feel free to PM me if you'd like. I'd be glad to give any support I can.

Princess,
Where are you located?

Just wanted to welcome you to the forums. Sorry that your daughter has gone through this so long (you mention symptoms as far back as 10) without anyone really helping you.

As a parent of a young son with POTS, I completely understand your difficulty with doctors. We are on primary ped. dr.#2. We see him on Thursday, and if he continues to be difficult, we will move on. We have been through 4 neurologists, and 2 cardiologists as well.

I just want you to know that insurances will sometimes cover out-of-network doctors. It is a long and arduous process. I just started today. A lot of paperwork back and forth, but I have one good doctor (developmental pediatrician) and therapist who is up for the fight. They are willing to write whatever it takes to get us approved.

I also want to encourage you to come here and gather strength. POTS/Dys is not a disorder well known by schools, doctors and the general public. It can be very tiring just explaining and providing paperwork, much less the care and attention it takes for our children.

I don't know your daughers exact age, but there is a group called dynakids.org that has a great parent board and children's board. Look into their website (www.dynakids.org) as well as www.potsplace.com.
Hope to hear from you soon,

Judi

Hi Judi, Yes since age 10 she began to feel dizzy everytime she stood up. Whether she went from a supine or sitting position. She took her time getting up slowly but still felt dizzy with pressure behind her eyes and blurred vision. Gatoraide and Pretzels were the treatment of choice on the advice of her Pediatrician.

If we don't get a better understandin or treatment with this next doctor I will seriously push for the doctor in Florida. At which point we will appeal to our insurance for coverage since he does not accept insurance. Although the hospital he uses for testing does. So that is a plus.

I have made a promise to her that I would not stop searching for that one special doctor. As parents thats all we can do right? If I give up just bc we hit brick wall after brick wall we may never find a solution.

I am in the process of joining dynakids as a parent. My daughter is a member and loves the support and network.

Thanks again and have a great day. I hope that you will be successful in your search as well.

Great, princess!

I will look for you once you are active on dynakids as well! I go from here to there throughout my week, because there is always some new info from someone who just came back from a dys center or someone trying a combo of things I have not heard of before.

The doctor who said gatorade and pretzels, but did not give a name to it did you a great disservice. I am so glad you know more now. We went through something similar, though not for so long. After our ttt, we had to wait over six weeks to read in the report that my son had symptoms similar to POTS. No one told us that, but did say drink more fluids and eat more salt and follow up with our doctor. Nothing else.

You are right. As parents we can just continue to search, advocate and be strong for them while they go through this. I am trying to keep positive thoughts even when we hit barriers and setbacks.

Take care,

Judi

Hey Judi, sorry for the delay in responding. Things have taken a dramatic change over here. My daughter is now experiencing excruciating pain in both her legs mainly deep inside her knees and ankles. We can't even touch her or she screams out in agony. ER did nothing other than tell her she was imagining the pain. We are seeing a specialist for dysautonomia who feels this may be the big picture causing her symptoms of POTS. Our next step is to see a Rheumatologist to rule out any forms of Arthritis. She waddles more than walks now and she screams as she moves her legs. As if POTS wasn't confusing enough, now this surfaces and just throws me for a loop. With graduation only 4 weeks away this new set of symptoms leaves us in quite a bind. Thank God her teachers, principals, and counselors are working with and not against us due to her excessive absences.

Until next time! My thoughts and prayer go out to all.....

Hi Princess,

Just thought I would let you know that I was diagnosed with POTS and suffer with similar symptoms to your daughter. I was also getting excruciating chest pain and was recently told this could be due to a condition called joint hypermobility. ALthough I get pain my chest I was told that the pain could occur anywhere with joints (knees/ankles) so maybe its worthing having a look online at the condition if thats any help?

Apparently these conditions often interlink with each other so its quite common to suffer from POTS and joint hypermobility.

Take care

Tara

Princess,

I hope you can find an answer quickly. And please keep us posted. I ask this because with my son, any minor bump creates a great deal of bruising and pain.

He has had two "sprains" in the last two months, where his ankle blew up and he could not walk on it. Recently, he bumped his leg on the way out of the shower and two days later, he could not walk on that foot or put sock and schoes on. The bruise was was severe for just a bump and actually spread quite a bit before subsiding.

We are going to do some vascular testing on him in June. I hope it will give us some answers. BTW, my son did not pass a hypermobility test, so if he has any hypermobility, it was not visible in his knee, elbow or hip joints.


Take care,

Judi

hi and welcome princess,
So sorry to hear this is hapening to your daughter. I too have this pain, for no apparent reason, and sometimes it leaves as quick as it comes, and reoccurs again down the road. I have found ibuprophen helps me, but I can't do it for long, or m bowels bleed. This illness has so many unpredictable and changing symptoms, that is hard to know the best thing to d. Please hear me......It is no way in her mind, and she is not making it up...no matter what some ignorant Drs. may say. In case you didn't figure it out, I've run into many in the past 7 or so years. One even shot me up w/ valium and told me to go home and sleep it off. The nerve....If they could only feel what it's like. Prayers go out for your daughter, and your family. This is the best place you can be. suzq

Hi Suzq, well she was given morphine which she said did not make the pain go away. In fact she felt very unstable, rightfully so. We just take it day by day. She has missed most of her senior year at school but has struggled to force herself to be there from time to time. Yesterday she passed out outside during school hours while they were taking photos for the yearbook. It looks like she will finish the duration of the year at home. We are all praying that she will have the enery to participate in the graduation ceremony. Thank you our thoughts and prayers are with you as well.