Newbie. 12 yo old daughter undiagnosed. Upcoming doctor appts.

[LowlypopsMom]

Hi. I had never heard of POTS until about 6 weeks ago when a friend suggested it after hearing my daughter's symptoms. I thought she might be celiac, hyperthyroid, diabetic, or need her gallbladder removed (I'm not ruling out any of these), but now I had a new, totally unknown topic to research. I learned how to do a 'poor man's' test and she passed every one that I put her through. I was elated that we might finally know what was going on with her, and hopeful that we'd be able to treat and get her well soon, like I promised her. But now, after tons of research and reading stories, I am feeling heartbroken for my daughter, not to mention emotionally drained. Here is her health summary:

Age 7- pneumonia

Age 8-10 - Chronic morning nausea/weight loss

Age 10- pneumonia again

Shortness of breath and nausea persisted after pneumonia. 

Diagnosed with 'very high risk' celiac genes, and high serum ferritin levels, all other gastro tests were fine.

FODMAP Diet helped a little, not completely, gluten free since age 10

Age 10-12- Gradual onset of blurry vision/light sensitivity (her biggest complaint), dizziness, flush, hot/cold hands and feet, nausea, weird throat sensation/occasional trouble swallowing, hypoglycemic symptoms (eating low carb helps), nervousness/anxiety (only when feeling really bad), high resting heart rate (105ish) and postural tachycardia. (120s- 140s after standing for just a few minutes)

12 1/2 (now)- Quit all outside activities,  symptoms at full swing. A short, lukewarm shower can wipe her out for the rest of the day. Still underweight, 5'2"- 80 lbs. Not menstruating yet.

We are following Pots protocol; extra fluids/electrolyte water, and salt, compression socks, floor exercises, and we purchased a used wheelchair, but other than doctor appts. she doesn't want to risk leaving the house. 

Luckily her pediatrician gave us tons of referrals, see list in my signature. All recent labwork has been fine except for elevated thyroid antibodies. Hoping to get a diagnosis and discover an underlying cause (or subset?). As these appts come up I'd like advice on what questions to ask each doctor. I understand the pneumonia may have triggered Pots, but am also wondering if there is EDS in our family. My 12 yo doesn't show many physical attributes, but I have other kids that do, and the pediatrician always said my kids have loose joints. Which doctor would I discuss EDS with? Is there anything else that stands out from my daughter's health history? 

Thank you all for sharing your experiences and daily struggles. I've learned a lot that way, especially how to relate to what my daughter is going through.

Thank you for taking the time to read and respond. I promise my future posts will be short and sweet.

 

 

 

[haugr]

I'm so sorry that your daughter is struggling.  The light sensitivy, anxiety, and the cold hands and feet could be signs of hyperadrenergic activity.  Does she get pale and does her blood pressure spike when symptomatic? 

[LowlypopsMom]

I haven't measured her blood pressure enough to know. I did get a bp cuff to make sure it wasn't dropping too low, which it wasn't. I'll check to see if there are spikes. She does get pale.

[MomtoGiuliana]

Welcome to the forum.  So sorry for all her difficulties and symptoms.  Her symptoms are certainly consistent with POTS/OI.  EDS is usually diagnosed by a geneticist.  Other members here with EDS could give you more insight probably.  You might want to start a separate topic with that question.

Hope she gets a correct diagnosis soon and can be on the path to better health.

[LowlypopsMom]

MomtoGiuliana, thank you. It sounds like I need some new referrals. I was happy the pediatrician was willing to give me lots, not just a gastro like before. Maybe we'll find out a little from each one, but EDS is starting to sound likely. Thanks for the advice on starting a new thread. 

[bkweavers]

-My heart goes out to you and your daughter. At the age of 10, my daughter was diagnosed with POTS so as a mother, I know some of what you're going through. She is now almost 21 and is almost symptom free so there is hope. (That sounds like a long time doesn't it? She started to feel much better around age 15) It sounds like you're on the right path to getting an official diagnosis. I hope that your upcoming appointment with the cardiologist is positive. We met a number of doctors along our journey that claimed to know POTS but didn't so my advice to you is, if you're not happy with this doctor, find one who is knowledgeable and truly knows about POTS.

Some other things that we learned along the way:

-communicate/connect with the special education program at her school and talk to them about either a 504 plan or putting her completely in special education. She's going to need to have some accommodations to her work load at school.

-keep her connected to her friends as much as possible. Every doctor we went to always pointed this out and asked about her social life. We had friends over to our house as much as possible.

-for you as her caregiver, take care of yourself as best you can. Get out when possible, even if it's a quick cup of coffee with a friend. It's exhausting, stressful, and emotional to say the least!

Please feel free to message me with any other questions. An adolescent with autonomic disorder is very different from an adult with the same disorder. With puberty thrown into the mix, it's a whole different ballgame.

My thoughts and prayers go out to you and your daughter,

Brenda

 

[LowlypopsMom]

Brenda, thank you very much for your words of wisdom. Fortunately, we don't have a lot of adjustments to make. We already homeschool. We're with a charter school so I might need the 504 plan for state testing.

I have asked a couple of her homeschool friends to come here to visit. Also, I have six kids (ages 9-24), she is the fifth, so there's always an older sister to stay with her when I need to run errands or attend a social event, and her younger sister helps to get things for her and they play well together. During a flare, she just wants me, though, so I've promised to keep my outings short.

I know we are very fortunate, but there is still an emotional strain. I am perfectly willing to be her advocate and caregiver for what could be a very long time, but I keep hoping, for her sake, that I'm completely wrong and she'll be fine soon. I've read that 80% of teens grow out of it, but is that actually true? Or is it just that they learn how to manage it well?

I am glad your daughter is feeling much better now. It really helps to hear that.