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CFrampsMom

Looking for Guidance

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My 15 y.o. daughter is in the process of getting a diagnosis. She was previously diagnosed with suffering from severe vasovagal reactions but we are thinking it may be POTS instead. She is at an all time low and I am unsure of the best way to support her. She is ALWAYS lightheaded and dizzy. Her heart rate jumps from the 60s while laying down to the 120s while sitting and then up to 140s and above while standing. Some days it jumps up over 200 beats per minute and takes a few minutes to come back to the 170s and then a lot longer to get her back down to a more manageable 130s (with her lying down and legs elevated). School has become increasingly difficult as she constantly feels brain fog. At times her heart rate gets high enough that she can't comprehend what is being said to her. She grays out often but thankfully has only had a couple of episodes of syncope. It has been a very frustrating process. She has been told it's psychosomatic, asked if she has an eating disorder, and has had teachers imply that she just doesn't want to be in school. This is a child that has always been a straight A student and takes her reputation as a student very seriously. Unfortunately, she has missed quite a bit of school this semester. There are days that she can't get out of bed. Thankfully, because she is a good student. she has kept up with her studies and has maintained an A/B average, but it has been a struggle. She was also very active when she was younger, and has become very depressed because she never feels well enough to do anything. She is the youngest of 5 children, and our family is an active family. She struggles with any activity that requires her to be on her feet for too long. Her daily symptoms are dizziness, lightheadedness, nausea, trouble concentrating, graying out, tunnel vision, heart palpitations, rapid heart rate, pounding heart beat, cold hands (always), clamminess, headaches, pale skin, chest tightness and difficulty breathing, fatigue, general feeling of being unwell. We tried Florinef when she was first diagnosed with vasovagal syncope but it did not help and was causing severe headaches. She is currently not medicated. We have increased her fluids to 3 liters of water daily and she takes SaltStick fast chews (contains sodium, potassium, magnesium, and calcium) throughout the day. She was under the care of the cardiology department at Boston Children's Hospital, but we have recently moved her over to Mass General. We have an appointment next week to discuss the results of her tilt table test and are in the process of finding a neurologist for her to see. She is also being seen next month by a geneticist to discuss the possibility of having Ehlers Danlos. She has had an echocardiogram, numerous EKGs, has worn a halter monitor, etc. Her heart is normal, and other than tachycardia the last time she was in the ER her EKGs are normal as well. Her halter monitor showed PVCs, and a couple of brief episodes of tachycardia as well as bradycardia, but the episodes did not last long.

So my questions are 1. How do I best support her? 2. How do I explain what she is going through so that others understand? 3. What suggestions do you have in regards to school? Outings? 4. Does anyone in the Boston area have a neurologist that they would recommend?

I truly appreciate any guidance in this situation. I want to be the best advocate I can be for my daughter.

 

 

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Hi @CFrampsMom I'll try and give my experience to your questions, I suffer from POTS myself, and it is really difficult for people to understand (even close family and friends) because you physically don't look any different and most people have no experience suffering from a chronic illness/ condition like POTS. There is not much leeway to 'just push through' with POTS, if I do I know I will be paying for it.

1. How do I best support her?
This one I really couldn't say as I think it would be different for each person. If I was to tell MY own parents what they could have done differently towards my illness (again this is only for me personally, and probably doesn't apply to others' here who also have POTS), I would say 1. Don't put the expectation on him to be able to do what he was able to do before, and understand that he knows more about his body and his condition that you will. 2. Look for practical solutions so that he can live a 'normal' life again, and be completely brutally honest about it. <-- those first 2 have to be balanced. Having POTS can mean the life you expected to live and continue in while you were well is just never going to happen; change of careers, daily activities, having to take days where your basically just resting/ recuperating, doing less on a normal basis, having to say no to certain 'normal' activities, having some friends go away and others become closer friends, always having people who just 'can't get' what is wrong with you has all been parts of the POTS life for me. Luckily I've only had a few bad doctors and my family does finally understand better now than they once did. 

Your question kind of reminds me of Jordan Peterson (I think he's a teacher/ lecturer) when he talks about his daughter who had a pretty serious health issues and they way he talks about the conversations he had with his daughter about her condition makes me think that that is how I would want a parent to talk to me, because it was brutally honest and he knew he couldn't never suffer or feel what she was going through but he cared very strongly.

2. How do I explain what she is going through so that others understand?
It took me forever to find a 10 second answer to tell people what was wrong with me, but I came come with this: I have an autonomic nervous system disorder, so basically for me when I go to walk around or do something physical my heart doesn't pump enough blood-flow to my brain and it makes me symptomatic/ feel really sick and I can basically be in bed for days from it. -- most people don't have time for a more in depth answer, but they might say something like 'oh so it makes you dizzy or headaches?'

3. What suggestions do you have in regards to school? Outings?
Honestly with this disorder any 'special occasion' or outings was something that I would completely dread, because my comfortable/ non-symptom provoking walking distance is about nothing (maybe 10-12 feet or so, then I need to stop for a few seconds and then I can walk another 10-12). Then you have to think about how many times do I have to go from sitting to standing? Are people going to expect me to carry anything? -- Even going to a doctor's appointment at a hospital was a problem, if they didn't have valet parking like they do at many hospitals now I wouldn't be able to make it from the parking lot to the front door. So for me (and I wish I did think 5 years ago) I ended up getting a powered wheelchair; which brings it's own hassle of having to explain to everyone you meet why you have it and for me at least having family members that were more uncomfortable than I was about it. But honestly I've done more in a year with it then the prior 5 years, your daughter may not be at that level of need (many/ most POTS patients will not need it) but for me I needed it. 

Prior to that, I wish I had said 'no' to more things because I would often put other people's expectations or not understanding ahead of what I know my body physically needed. I think it is important for any POTS patient to realize that this illness can come with non-negotiable limitations, for me mostly what I could do physically. So going to a small restaurant could be fine, but going to have dinner at a massive hotel would be h***.

4. Does anyone in the Boston area have a neurologist that they would recommend?

Some Massachusettes physicians on this page:

https://www.dinet.org/physicians/

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Dear @CFrampsMom - have you checked out the Information Resources section of this site? There is a video " Living with POTS " and a guide for family and friends that may be helpful. 

It sounds as though she is getting all of the proper testing in order to get diagnosed and once all the tests come back treatment options may become more clear. 

As in how to support her - as a mother of a 15 year old daughter with asthma and syncopal spells I can only tell you what I have found helpful: be honest, research as much as possible. be her advocate at doctor appointments and always reinforce that none of this is her fault  as well as that many teens with POTS improve rapidly with proper treatment. Best wishes!!!!!

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I second all the advice above & am sorry your daughter is going through this at such a young age.

It can be particularly helpful using online/printed medical information that is concise, written by experts and easy to read when dealing with the school or people who don't understand, that way there is something you can just give/direct them to without having to get into the explanation yourself. 

Be persistent with the doctors, she has tried one of MANY treatments, of course not everyone responds but do not give up if the first one or two disappoint. 

Non-medical things I have personally found helpful are trioral electrolyte mix, recumbent exercise bike/gym mate seated pedaller for seated exercise to build & maintain leg strength, & for a good while licorice root, a herbal supplement by Swanson which has blood volume boosting properties without the harsh side effects of Florinef. 

Aside from POTS medications, it may also be helpful to see a gynaecologist to consider suppressing or minimizing her periods, as even if the bleeding is not excessive, the cyclical hormone fluctuations can make things worse for young girls & women with POTS/dysautonomia. 

I would also not shy away from mobility aids if she needs one, like a folding stool, rollator or wheelchair. Whilst no teen (or any person) wants to use these, if they allow participation in school or events that she would otherwise miss out on, then they can be really helpful in terms of her mental health & keeping her included rather than stuck at home. 

Best of luck with her new doctor,

B xxx

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