Lethargic Smiles

I was the same way! I thought I needed to be able to stick my feet behind my head while sitting up to be considered hypermobile. All sorts of positions I'd sat in my whole life turned out to be "not normal". I also had no clue it wasn't normal for my joints to sublux. I didn't know the fancy term for it prior to going to the geneticist, I'd just say, "AGGH! My elbow slid out!" Until about a year ago, it never really hurt, it just felt unusual. The funny thing is, when I was younger, I'd ask my Mom if it was normal my elbows slid sometimes. She has EDS too (but didn't know it back then) and can dislocate her shoulder just by looking at it wrong, so a little joint sliding in and out of place isn't alarming to her. She'd tell me yes, joint sliding is normal, hers do that too -- it is something that just happens but to let her know if it ever caused pain.

I know it's very different for a teen, especially a young teen. My experience was starting from when I was 18, so I thought there may be some similarities compared to some of the adults here. I think the feeling of a loss of identity to some degree is universal while dealing with an illness that alters your ability to do things that defined you, even if it is temporary, but how it effects someone depends on their personality, support system, and, like you said age. I know I saw so many commonalities (in emotional concerns/coping) between myself and my 90 year old grandpa when he got sick and he had lived a full life until a few weeks before his 90th birthday. I saw him refusing to do things differently at first even though it would have helped him because, to him, that felt like losing something. It sounds like you're confident her counselor is on top of that as a possible component playing into the school situation, so that's wonderful for your daughter. I am thinking of your family and I look forward to hearing about how everything works out!

I am sorry you can't count on your specialist to offer ideas to help you get through flares, or at the very least, empathy and support.

I am happy to hear she has a counselor she likes. I am not trying to force homeschooling, but just offering alternative ideas -- could she homeschool for her core classes then come to school for an elective class or two each day like art/sewing/computers? Or maybe finish out the year homeschooling with the plan being she uses this time to figure things out and goes back to regular schooling in August? I can relate to her having trouble accepting doing things halfway. As soon as I read that, I understood why she doesn't want to go because I used to feel the same way (and still do sometimes) I had trouble even letting someone else do my laundry or clean my bathroom because it wouldn't be exactly how I wanted. I found it preferable to run out of clothing than have someone else do it and risk it not being done and put away how I like. I would just not clean the kitchen rather than do the dishwasher, rest, then wipe down the counters because I thought it was unacceptable/"stupid" that I couldn't just do it perfectly all in one go. I would never tell people "no" when they asked me to do things I was good at that I used to do when I was healthy. If I started feeling sick during doing things, I'd hide it, and rather than excuse myself, I'd push through and make myself sick for the next week. My instructors in college couldn't believe it when they found out I was sick because I worked so hard to hide it and be perfect until it just wasn't possible any more. She may feel she is losing a big part of her identity by agreeing it will be acceptable to not be perform as well at school as she is accustomed to. It took me a long time to understand what I can and cannot do doesn't make me who I am. If you want to hear more about how I've overcome this or how my family helped me work through it (although I still struggle sometimes) just let me know, I don't want to rattle on if you've already gone down this avenue or it doesn't fit.

You know your daughter better than us, but could she be too sick, stressed, and overwhelmed to make a decision or know how she feels about switching to homeschooling and would benefit from you saying you are making the decision based on what you think is best? Even at 22, I remember appreciating my Mom making decisions for me when I was at my worst because, despite a college degree, it seemed impossible the simplest decisions, let alone major life changing ones. If she does not have a preference, I vote for homeschooling. She can do it at her own pace and when she gets the ability to do work, she can do it, if she suddenly has to stop, she doesn't have to offer anyone explanations or feel embarrassed. I know a teenager who does online schooling and the school lets her come do it in the library if she feels up to it as a small step toward getting back into the classroom. Also, maybe she would benefit from a counselor. Not a psychologist who you are paying to evaluate her and who may try and diagnose her with something psychosomatic, (I think I saw you post on that), but a counselor whose purpose was to be a neutral person she can talk to about what she is going through. I suppose I would say the purpose is "stress management" versus seeking an opinion. I know sometimes I hold back with family because I don't want them to worry.

Call now! Explain you thought getting out of the house would be helpful, but it was actually a disaster and something needs done. Do you get IV fluids? What medications have you tried? Turtlefairy is right -- you deserve some help ASAP, not in 2 weeks. I can relate, I'm 24 and have had this since 18. I became the way you're describing at 22. While I am still disabled, I am better than I was. There is hope! I am sorry your parents aren't adjusting well to your limitations.

Make sure they allow you to lay flat a few minutes after you get on the table and prior to tilting you! At my first TTT, they were tilting me within 2 minutes of me getting on the table. That's not long enough for my heart rate to have gotten back to baseline, especially when I'm in a medical setting and nervous.

You could seek out an advocate to help you at the IEP meeting. They won't let you get pushed around.

Yes! I can clearly smell my fiance's can of Pepsi and it is about 15 feet away.

Everyone is different as to what will help them. I don't think a cleaner diet would hurt anyone though as long as adequate calories are consumed! I think baby steps is the way to go. An entire diet overhaul can be stressful, hard to remember enough to follow, and less likely to stick. I think a great start is eating whole foods and avoid foods with dyes, chemicals, and ingredients you can't pronounce. Once you've got that under control, make the next tweak. That's how I've had the most success at making dietary changes stick -- one change at a time. I don't eat soy, dairy, gluten, egg, or grains. I also eat low FODMAPs. It has taken 2.5 years of tweaking, blood testing, some IgG testing (somewhat accurate, but partly wrong), and good old trial and error to figure out the right diet for me. Basically, I ended up eating low FODMAPs Paleo minus the eggs. I did veganism for 9 months, and despite supplementation, felt much worse. Everyone is different!

I thought I'd chime in that I'm the opposite. I burp a few times a year and its a tiny little thing. My throat makes this weird sound like it wants to burp, but it can't get out. I read somewhere there's a flap in there (real technical, I know) that, in some people, doesn't move so the burp can't get out... but you can manually stick your finger down there when the sound occurs and let it out. LOL

I love my Ginger -- it, along with digestive enzymes and proviotics, allowed me to get off of Phenegran and Reglan. I have low blood pressure in general, but it is corrected with Midodrine and I haven't had any effects taking 550mg ginger daily, usually 1-3 times per day.

I'm friends with a POTSie who has had POTS since age 10 and is now 15. She does homeschooling and it takes up much less time than regular school. The negative part is, you lose that socialization.

I think connecting her with kids her age with POTS would be really helpful! I'm sure she feels really alone. In a way, you could think of her as mourning a death, the death of the life she thought was guaranteed to her. That's how my Mom phrased it to me and it was very true. Could you find blogs of positive people she could read to see their lives are not over? Here is a really great blog post about life not being over due to chronic illness: http://arainbowatnight.com/2014/02/21/coping-with-chronic-illness-your-life-is-not-over/

I haven't read the whole thread, but I was just making sure you know increased energy and decreased aches/pains is really common with steroids. They used to help all of my symptoms (I get them 1-3 times a year for my lymph node swelling) and I thought it was my magic bullet. Now, 3 years later, they don't give me any energy or any improvement in symptoms except bringing down the lymph node swelling.

Has she ever had a period of being well before since becoming ill?

That's nice you had a productive appointment! I can relate to the road conditions causing tachycardia. I can't wait until I can be the one driving long distances again. Salt tabs hurt my stomach too and I don't think they have enough sodium to justify the pill size. I stick a bouillon cube in a glass of water, nuke it, and drink. I can easily get a gram of sodium this way. It is salty, but it does not hurt my belly and tastes good. Also, just so you know in case you don't already, salt is 40% sodium, so 1 gram of salt is 4000mg of sodium.

I'm happy to hear you don't have to wait until May!

That's wonderful news! My fiancé takes Effexor and it tends to decrease his appetite and back him up. Has she been diagnosed with POTS? Think of it like this: POTS specialists tend to take awhile to get into. By taking her, you will be able to gather information and a plan to be prepared for if there is a "next time" with the weight loss and any other problems. Hopefully there isn't! I found it helpful that Mayo laid out a plan of what medications may help in various scenarios so my GP could just go off of that rather than me always having to call Mayo. Of course, most doctors are much more available for followup than Mayo's autonomic clinic doc tends to be since they are mostly for consult, not carrying out treatment, purposes.

I said "other" for onset because the onset was slow through my entire life, then sped up by mono.

I lost almost 20 pounds at one point from POTS. I went from 133 to 116. It was a result of gastroparesis and nausea/vomitting, but even when I ate, it was really hard to put on weight. What helped me was small meals, not drinking with meals (this is what they told me to do at Mayo to help with the food just sitting there), getting calories from drinks when I could (I don't like to ingest much sugar, but to put on weight, I'd drink pop), adding fats/sugars to foods, and using digestive enzymes with meals to help them break down and get moving along more easily. I like Source Naturals Daily Essential Enzymes. Staying hydrated was important for me too. If I get even a little dehydrated, I am instantly nauseous.

I'm sorry your daughter is so ill. It's good to hear the doctors are taking her condition seriously. Does your daughter have any discomfort after eating and/or does it feel as though the food is just sitting there? Is she constipated at all? Is she bloated? I guess what I'm asking is, does she have any GI symptoms at all?

I always wonder if the ANS spending more time in sympathetic (fight or flight) mode has something to do with it -- like maybe it burns more calories in that mode? Also, if we think evolutionarily, our ancestors would have benefited from not feeling hungry while in sympathetic mode -- all their focus could have been on outrunning the tiger or whatever.

I drink broth or (pre-packaged) tomato juice if I am in need of sodium. They both tend to have more sodium than sports drinks and less junk in them. If I don't need a hit of sodium, I stick to water. I drink one glass of unsweetened almond milk a day as a change of pace from all of the water. I keep my refined sugar consumption minimal because it is hard on the body. The sports drinks have so much of it! I used to rely on sugar to keep my weight up, but I've found other ways and my stomach is more cooperative lately. I also dislike putting zero calorie sweeteners into my body even natural ones, but everyone is different. Pay attention to your other electrolytes too. Potassium can be found in potatoes, avocados, and bananas. I supplement with magnesium, but black beans, some nuts and seeds, quinoa and spinach are all good sources. Calcium I supplement and also get from foods such as spinach and fortified almond milk since I don't do dairy.

Yay for a stool at your computer station! Maybe eventually you can even get a chair with a back -- you'll think you're in heaven. I always had my feet propped up on a garbage can under my desk (or crossed in my chair).