14 And Newly Diagnosed With Pots

[zelda]

My daughter has been having extreme fatigue since March. She started having severe stomach pain off and on in April and she ended up seeing a GI doctor in May. After having blood work and an endoscopy done she was diagnosed with Celiac disease and started on the gluten free diet the first week of May. I thought that would get rid of the fatigue and she would get better.

The first week of June she Injured her knee (completely severed her ACL and tore her meniscus), and the first of July she had surgery where they took hamstring to make a new ACL and stitched the meniscus. She continued to be really weak and not feel well.

School started in August and she still was having nausea, stomach pain, and was so weak. She could sleep and sleep. She got pleurisy the second week of school and she was having chest pain, back pain, and would feel lightheaded and dizzy when she would stand. She has also had joint pain for quite awhile.

Labor day weekend she pointed how much her heart was racing when she stood up. We went to the pediatrician and got a referral to a pediatric cardiologist. He checked her over and listened to her heart laying down and sitting up but never standing up. He did an EKG and whatever the test is where they take pictures of your heart with an ultra sound machine.

He said she has POTS and prescribed florinef and said to drink 40 ounces of liquid a day and to see him in 4 months. When I asked about the extreme fatigue, he said,"All teenagers are fatigued and all teenagers are depressed, even mine. She should get back to school." I am wondering if POTS is able to be diagnosed without a tilt table test. She is still weak and fatigued, has nausea and stomach pain, and a headache when standing. Any answers would be greatly appreciated.

[hippychic258]

I am so sorry your daughter has to go through this! But first of all.......all teenagers are not depressed and fatigued! I would definitely get another opinion and get a TTT for sure, that is how POTS is diagnosed. It could be Pots and it could be something else thats why you need the TTT.

I hope she gets to feeling better

Pam

[zelda]

Thank you for your response Pam. I havn't met any teenager with this level of fatigue. I do not believe they are all depressed and fatigued. I am also wondering if this is an accurate diagnosis. I called the office back the following day because they didn't give me anything when I left. No receipt of visit or anything with diagnosis. I asked for a letter for school to add to her file with Nurse with description of what pots is. I got the letter in the mail yesterday and it says. "In this condition, the individual has symptoms of low blood pressure such as dizziness or lightheadedness upon changing posture or upon standing up. These symptons can also be accompanied by a perception of increased heart rate. The symptons are typically not of a sustained nature and resolve within a few minutes." Is this an accurate description of what pots is?

[Monstrosity]

second opinion for sure

[zelda]

I do have a call in to another Cardiologist. I too feel a second opinion is needed. The waiting and wondering and worry is hard to deal with.

[Christy_D]

Get a second opinion by someone who knows about POTS/Dysautonomia. My son was also diagnosed by a cardiologist just by symptoms, sent us away with florinef and said that would fix it. Needless to say, that didn't fix it. That was in June 2009 and my son still has not returned to school. We followed up with specialists who know about POTS. His doctors filled out forms for me for my son to be on homebound school and on line classes. Granted my son is a severe case, so hopefully your daughter can get back to school soon. If not, you will need a 504 plan or IEP.

Visit Dynakids.org, there is a lot of info you can print out and give to the school. FYI, my son's POTS started with GI symptoms and nausea and is currently in bed sleeping for 16 plus hours a day.

Christy

[zelda]

I am in Indiana and I am not sure how I find someone in the area who specializes in POTS or Dysautonomia. Any suggestions?

[Christy_D]

I stumbled on the one here is St Louis by someone else's post on this forum. Perhaps start a post asking other members if they know of anyone and did you check the list of doctors on this site?

[zelda]

There is no one listed in Indiana and I saw another post several days or a week ago asking about Southern IN or Northern KY it has gotten no responses.

[arizona girl]

Zelda, you are experiencing what many of us on the forum have, a dismissive, cavaliar at times almost ignorant understanding of the symptom pots. Pots alone is a diagnosis of exculsion. Perhaps pots alone may not seem serious to some doctors, but it still can be life altering, however if it's a result of some other illness, not knowing and treating the condition, can be very serious.

Many disease states can cause a rise in heart rate on standing and or hypotension which you cardio eluded to, also some of us get hypertension on standing as well. If you have not gotten them already get a complete copy of her medical records from him including tests, and see what they say. You'd be surprised at what they don't tell you. If he is pigeon holing your daughter into some kind of anxiety or depression, I would not even share those doctor notes with another doctor, I'd only share the labs which are nonsubjective. The notes are your doctors opinion, that is all. You only have to give the next doctor what you want them to see, they are usually fine with just lab and test results.

Have you been on dinets main page and looked under mechanisms and causes yet? While some of information there needs to be updated, it is very informative and dynakids I agree is also good place to search. Your daughter may have something called small fiber neuropathy, or if she is getting infections that she is not recovering from well, she may have a primary immune disease, lots of allergy like reactions could be a problem with mast cells, if she's also hypermobile she might have eds, or any number of autoimmune diseases which are diagnosed by neurologists, rheumy's, endocrine or hematologists, as well as the gi doc you've already seen. Do you feel most of her symptoms are explained by the celiac? Autoimmune diseases tend to cluster to together, so there can be more then one thing going on.

All that being said there is some stuff you can do to evaluate her on your own. Get an automatic bp machine costco's microlife is a good cheap one that keeps the readings for two people. I use one to measure my waking/not moving supine bp to get my baseline and the second one to measure what is happening to me when I'm upright, multiple postions and times. Measuring your daughter in these different body postures is called the poor man's tilt, if you want to read more on how to do it.

Your daughter could have any combination of changes in her heart rate and blood pressure. If it is dropping and she is hypotensive that causes nausea and dizzyness all by itself. Factor in that you already know she has celiac which is an autoimmune disease, and may be contributing, then she may have more going on then just pots. I'd say your are at the start of your journey with this, perserve and don't give up until you are satisfied the doctors have it right. Listen to your gut, the fact that your here asking questions means you know they are missing something.

[roxie]

Definitely get a second opinion. Preferably one who already has knowledge of POTS & other Dysautonomias. There is a physicians list here. You may have to travel to one and that initially sounds like a pain but a knowledgable dr is worth it's weight in gold! 

My PotS started when I was 12 and was told the exact same thing about that's the way teenagers are and on and on. It not true. Please stick to your guns and be your daughters advocate. If one dr doesn't listen move on. 

The automatic bp machine is a good idea. If possible you could get a heart rate chest strap and watch her heart rates during the day. It'll all an understanding dr valuable information. 

 research the conditions listed here that can cause POTS.

 And go through "what helps" and "what to avoid" section putting them into practice the best you can! If she can't stand up to exercise, do laying down exercises. Starting as low as you need and slowly and consistently increase things.

[zelda]

Thank you for your reply. Do I just call the offices and ask for a copy of her records or lab results? She has had alot of illness starting at age 6. Lots of ear, sinus, upper respiratory, 3 x's Pneumonia, and she had Mono in grade 2 ,It was always something and lots of antibiotics. I checked the Pharmacy records and 2 years ago she took 12 antibiotics, last year she took 8. She had the same Pediatrician since birth.

I would say it seems like she has something going on with her immune system. Why is she such a cootie magnet? Always the same answer. "She has a _____infection." Another stronger antibiotic. When the stomach symptoms started, I think she thought it was all in her head or made up. I would call and she would say its a virus give it a few days. I would tell her she also had extreme fatigue, her lips were the same color as her face and she was sleeping 16 hours at a stretch. She said to have her go out in the sunshine and walk around in the yard.....?

Finally she had such severe pain I took her to ER they referred to GI who looked at her for 5 min. Her pale skin and red hair along with her history led her to think Celiac. She got right on it and in fact it was. I thought that was the cause of everything and was greatly relieved thinking with the new Gluten-free diet all would be well. All is not well and she is getting worse and weaker. The celiac counts are going down and a pill cam last Thursday showed an improvement in her stomach from celiac type damage.

I called the office asking about possible pots connection and I'm not sure they saw a connection, they referred her to a Rheumatologist to see if she has CFS, They said a cardiologist oversees POTS and said maybe she should see a Phsycologist who deals with chronic illness. She does have Hypermobile joints. 2 weeks ago she got hives from ice on her knee, her hips pop and crack, and she has had joint pain in her fingers, toes and other joints for years. I know this is a lot of information, but I am trying to figure out what to do next. Any feedback or suggestions would be greatly appreciated.

[roxie]

Yes, you can call and ask for her records.

If she is hypermobile you definitely want to look into EDS. A good rhuematologist can help with that.

Also, look on EDNF. org. They may know of an EDS dr. Usually a good EDS dr will have know about POTS

[looneymom]

I feel for you. Try and find a doctor that will do a tilt table test. My son has been sick since December 2010. He was put through a tilt table in October 2011 and was diagnosised with POTS. However, our cardiologist wanted it to be confirmed and referred us to Mayo in Rochester. My son saw those doctors in December 2011 and he does have POTS. Since our Mayo visit, some other unusual symptoms have appeared and we probably will be making another trip to a different clinic soon. The best advice I can give is go to a clinic that is doing research on your daughters symptoms, so you can understand any underlying conditions that are affecting the POTS. Our son has not been able to attend school since January 2011. I hope you find the answers you need. I am a former special education teacher and had to quit my job because my son's medical condition is unpredictable. POTS comes with the good, the bad, and ugle days. My family is adjusting and we take one day at a time. If you would like to read about our family's journey, I started a blog called survivingpots.com. Many of my friends, chruch members and former students read the blog so they can keep up with my son's condition. There is no foul language in my blog. I believe that my God has a plan for my son and family.

[arizona girl]

Zelda, Thanks all that information is really helpful to point you in the right direction. Like many of us here your daughter is a zebra, meaning the doctors are missing it because they are looking for horses. This is a saying they are taught in medical school and most docs have learned it so well, they don't look outside of their boxes.

No wonder you are concerned, once you get to the right specialists and they start doing the right tests she will get diagnosed. I suspect she has a primary immune deficiency considering the level of infections. I would have her screened for that first. There is medical site called primaryimmune.org I'd like you to go to the one I think is most likely is hypogammaglobulinemia or Common variable immune deficiency. This site also has a doctor referral program. Good news is this is a treatable condition which should bring down her infection rate.

I also have this as well as several autoimmune disease and small fiber neuropathy. The tests they should be running on her are the total quantitative immunoglobulin checks iga, igg, igm, sub igg panel, ige and igd and a vacinne challenge tests. If you look at her cbc there is an albumin globulin ratio test, if that is out of range even a little it points immune dysfuntion. These test show how the immune system is functioning. It is very common to have autoimmune disease and or connective tissues with this. Considering how young she was when she started getting infections she was born with it.

Charlotte cunningham rundles is the foremost researcher on it. Google her name and cvid and you will see the work she is doing on it and her research into the genes proabably causing it. She is at mount sinai hosptial in new york and is allergy/immunology. BTW most allergist don't know how to treat this, she may also be able to refer you to an immunologist in your area.

From your earlier post it is very likely her pots symptoms are due the infection rate, maybe anemia, and the autoimmune component attacking those small fiber nerves. All these things can be fairly easily tested for. A TTT while good only proves the autonomic dysfunction not why its is happening. Cardio vascular treatments only address treating symptoms, not underlying disease if it isn't cardiovascular in cause.

I went undiagnosed for a very long time, but am getting fairly effective treatment now, no cure available yet, but it can be managed. Make sure you keep good medical insurance, you are going to need it to cover her treatments if it turns out she has any of this.

I'm so sorry that it has taken you so long to get someone to hear you. The pots diagnosis though is a blessing as it lead you here. We have some pretty darn smart and supportive members here. Let me know if I can help you with anything else.

[Kellysavedbygrace]

So glad you found this forum- some fantastic advice and wisdom here. I ditto the second opinion and suggest you consider making a little trip to either Cleveland Clinic, OH or Mayo, MN for autonomic testing. Then I'd try to find a team of local docs who are willing to work with you- willing to take the advice of out of town docs and study a bit about this on their own. I have a local primary, cardiologist and neurologist I see regularly and then I make my "out of town visits" to specialists as needed.

I'm sorry to hear about your daughter's case. Just want to encourage you that this journey you are embarking on is all about perseverence- persevering through dr's who don't really understand Dysautonomia, persevering through the medical research/literature, and persevering through the day to day ups and downs that come with living with this type of rare condition. But you can do this and you are not alone. Welcome.

[kjmom]

Welcome! Sorry your here though.

I have GI and fatigue issues to, and I'm 10. Was diagnosed like 9 or 10 months ago. Hopefully you'll find lots of answers and advice here! Good luck with the florinef, (I tried it to) and I hope your daughter gets better soon!

-Kayla

[zelda]

Thank you all so much, for your knowledgable and encouraging responses. I am going to look into some of this.

[zelda]

My daughter is going to see a local "Cardiac Electro Physiologist" tomorrow. Just for a second opinion and to find someone locally to work with. If anyone has ideas about questions to ask, I would really appreciate it.

[Kellysavedbygrace]

I've had a hard time finding an EP doc to work w locally. They all seem to be much more interested in performing procedures like ablations which make them $. I have hired and fired 3 and now am seeing my regular cariologist for cardio issues bc he is willing to discuss treatment options w me regularly and has followed my case since the beginning. The only EP doc that I found to be helpful was Dr. Fred Jaeger up at Cleveland Clinic because he has years of experience working with syncope and autonomic dysfunction. Since POTS is a neuro issue that has cardiac affects most of us get sent to EP docs who don't specialize in dysautonomias. All that to say unless the EP doc you are seeing has worked w lots of POTS patients and is interested in Dysautonomia most likely you will not get a lot of answers from him/her. That said, I would:

- ask for them to schedule a Tilit Table Test to confirm the POTS diagnosis. (if they don't agree to do this I'd run and find someone who will.)

- ask if they have the capability of doing a serum Catecholemine draw during tilt. (this is a nice to have but not necessary. This can

help determine if she has the "hyperadrenergic" type of POTS.)

- ask them to explain their understanding of POTS and find out how many patients they've treated with it

- I'd ask the who (if anyone) do they know in the area who specializes in or sees POTS pts regularly.

You've asked a really good question here. I'd be curious as to what others had to suggest.

[zelda]

Thank you so much! I'll let you know how it goes.

[Lemons2lemonade]

Hi there! I am sorry that your daughter is going through this right now, pots isn't easy. The good news though is that it is manageable. The one thing I have learned with pots is that it is important to keep moving forward--both physcially and mentally. This can be extremely difficult at times but for me it keeps my baseline of functionality up. I would encourge her to keep going with school even though it is tough, and to make sure that this is consistent with the dr.'s recommendations. Some things to consider about florienf are that it depletes potassium in the blood stream so make sure that your doctor is keeping an eye on her potassium levels and if needed supplelmenting them. If a supplement is needed, i much prefer the potassium packets to the pills--they are more effective for me. Another thing to consider, as she gets older, is that florinef can make birth control ineffective. Addditionally, there are a variety of medications available for pots patients. Some work better or worse for others. Lastly, i have found that internal medicine helped me manage my symptoms and medications better than the cardiologist did. If you have any more quesitons please feel free to contact me via messsaging. Take Care!

[Lemons2lemonade]

One more thing. I saw 2 cardiologists who told me i was just dehydrated. Also, i would ask the electrophysiologist about a holter monitor. It is a 24 hr. ekg and can catch any rhythm abnormalities. Don't be afraid to be firm with dr.s they always think they know everything and this isn't always the case. I had to fight for my treatment. MayoClinic in minnesota has a pots treatment center. So does Vanderbilt in Tennessee. If i had a choice i would choose vanderbilt. If you have any referral questions, i can also help with that. Moreoever, it is possible that she has a phsychological issue, but i have learned that dr's who don't know the illness tend to suggest that because they don't know how else to help. Mayoclinic also deals with autoimmune diseases--hypermobile joints are strongly associated with autoimmune disease and there are a variety of autoimmune diseases that can cause pots symptoms.

[zelda]

I am still feeling unsure. The Dr. yesterday said sinus tachycardia, POTS thats the new name for it (since it happens when she changes position). He says to switch from florinef to metoprolol succ er. He didn't see need for TTT since we already know heart rate goes up when she stands. Try the beta blocker and come back in 6 weeks...

[Kellysavedbygrace]

Z, If I'm in your shoes I'm changing docs. A TTT is the gold standard for Dx POTS. If she has such Orthostatic issues it is important to get a measure of both HR and BP min by min when assuming upright position not using her leg muscles. (for us our legs are often "our second heart"- quoting a fellow dinet forum member) Docs who have not been properly trained or practiced will tell you, "it doesn't matter because the treatment is the same- Fludrocortisone, salt and water- maybe even Midodrine."

The reality is there is no known cause or cure. In some mild Dysautonomia cases the above treatment may be enough, but if your daughter is embarking on a long term condition the data would be very helpful both now and in the future. With POTS, knowledge is power. Any doc who discourages a TTT at this juncture should be fired.

As a side note, the doc is probably right that it is a sinus tachy but assuming that without testing (ie: holter monitor as Lemons mentioned) is bad practice. Assuming it is a sinus rhythm does not allow for the clinical evidence that his/her assumption is correct. The last time I checked the scientific method the scientist first makes a hypothesis, then tests it. Good clinical data is critical.