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Attolia

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Attolia last won the day on August 3 2018

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About Attolia

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    Amateur Bee Keeper

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    A Sunny Spot North of the Equator

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  1. We are waiting on the 24 hour cortisol saliva tests. Hopefully we will hear this week. Tbh, It is the test that I am most curious to see the results of,
  2. POTS is what the cardiologist wants me to explore more. She said she wouldn't diagnose it per se because there is no reason to. She says they can't do anything about it anyway. I have looked into it some. It isn't exercise induced though right? I will look into Ehlers-danlos. And I will try the test you speak of at home. True, good thoughts. I have not gone the GI route yet. She has no stomach problems or diarrhea, I am not unwilling to explore that but it didn't seem like a primary thought.
  3. Yes and I am trying haha. She is almost 17, I can't dictate all the goes in her mouth, but I have been trying to get her to go GF for a while. Not being in school might help because she won't have stuff there to tempt her. Not that I know of? She doesn't have coughing problems. I have no idea. I thought about looking into pulmonology if all else comes back empty. So, cushings has been a strong thought in my mind all along tbh. She did the cortisol test this week (the 24 hour saliva one) and we will get results in the next week or so. Thanks for login through the effort to share this with me though. It confirms some of my suspicions. I am really not sure if oxygen has been tested but surely it was tested along the way somewhere right? Pulmonary specialist is on my list if what we have going on now reveals nothing. No idea how her blood pressure is. I mean, they take it at the dr I think? POTS is what the cardiologist wants me to explore more. She said she wouldn't diagnose it per se because there is no reason to.
  4. She was severely anemic but then treated and her labs are great. Those days? Just standing because she was short of breath she didn't sing.
  5. She has Hashimoto's and gluten can stoke that fire. I know that older dd and I (both hashimotos too) can't have gluten. It makes us feel awful.
  6. Yes, I have tried to convince her to be GF. Being a vegetarian and dairy free, she just already feels so limited that she won't commit to gluten free. She doesn't eat it often so she is convinced that it isn't a problem. I have used similar analogies to what you have used but she is just so convinced it isn't a problem. She'll come around eventually. She refused to go dairy free forever too but has felt so much better dairy free that it is worth it for her.
  7. I mean, possibly, but we go to a super dressed down church. Like yoga pants, jeans, messy buns type of dressed down. I am pretty sensitive to fragrance but I never smell anything weird there.
  8. Yes, with the anemia and a brother with crohns I pushed that hard. It was normal.
  9. Thank you. We are a mostly a gluten free, dairy free family but she won't go gluten free. She is dairy free. I know GF but why can't I think of what CF is?
  10. This has been so emotional. She has cried so much ya'll. She doesn't want to leaver her friends, her teachers, the school itself. She is on target to be valedictorian, holds key leadership positions, and from the exterior is excelling. This school is her WHOLE world. She has just come to the conclusion that she can't stay with her health. This is to answer some of the questions about therapy and more details about her health that were requested on the other thread that is now so large I don't want to add to it haha. Let's talk about therapy first. DD really liked the therapist. She seems like she knows what she's saying. She first talked about anxiety and panic disorders in a way that I thought she was going to go down that path with dd, but then after spending a good bit of time with dd alone, she talked to me alone. Her conclusion...Your dd is amazing, she is well spoken, intellectual, caring, engaged, she has made this very difficult decision (to leave school) because she is brave enough to do what needs to be done even when it is hard. BUT, she doesn't feel like dd has deep anxiety or panic issues. She looked at me and said "you need to push on this more medically". She has some anxiety but not more than most teens and continuing to see her will be helpful, especially as she makes this hard transition out of school. So therapy was helpful and yet not all at the same time. DD is pretty quiet and masquerades really well to the public so maybe the therapist didn't see everything that I see with dd? She has gained some deep fears for the future. Being my third teen, I feel like her fears are stronger and becoming more crippling than normal teens but maybe I am wrong? Maybe the therapist didn't get a true glimpse of this? or maybe she can see that the anxiety isn't stand alone but driven by something medical? So this is what dd is facing medically. Let me preface this by saying that dd was diagnosed with Hashimoto's later in the year of 7th grade. She is now a high school junior. She spent about two years struggling with increasing chest pains, breathing problems, migraines, and exercise intolerance. We saw several doctors with no answers, things peaked last fall, I came here and expressed my concerns, and ya'll told me to look into anemia and ta-da, that was it. I took her to the np at her pediatrician and asked for hemoglobin to be checked and she was severely anemic. Her hemoglobin was a 6.8 and her iron stores were nill. I had a few other things checked like celiacs. She is a vegetarian so they narrowed her anemia down to diet based. We never did find a root cause of the anemia. She has stayed on 900% of her daily iron with a supplement that also includes high doses of vitamin B, etc. She seemed pretty good. She would only have occasional headaches, tiredness, bouts of breathing issues. The issues became more rare. We could take family hikes again. We were good. Let's note, I was a little concerned because taking 900% of daily iron she has never been able to skip a day without being symptomatic. To me that seems really odd if her iron stores have built up. About 4 weeks ago we started all over again. Keep in mind, this was summer, right? Not middle of the school year or high stress. She started having her heart rate bounce everywhere. She would have episodes where she felt like her heart was fluttery and racing and she couldn't breathe. Headaches have also gotten worse again. She has lost exercise tolerance. I have been using my Apple Watch to test her heart rate during these episodes and I am watching her heart rate bounce (just standing in church) from 90-180-140-44-190 and all over just standing there. She can't breathe, her throat feels tight, her hands will tremble. This is what led me to eventually think maybe panic disorder? But there wasn't a reason to feel panicked at all. She tried to take a good walk with a friend and came in and slept for 18 hours. The level of exhaustion she is feeling is extreme. Especially after she feels these "episodes". We tried to take a family hike and we weren't over doing it, not straight up a mountain, a pretty moderate hike and dd just couldn't to it. We got about halfway through and she had to keep sitting down and her heart rate was zipping at 190ish the whole time. Her head was killing her and she could hardly breathe. She has also gained significant weight since January. She was 107 in December and now she is 135. The other symptoms she has been dealing with is she is freezing in the evenings. Like it is 1,000 degrees outside here and she is freezing cold. She has also had a sudden onset of really red stretch marks all over her thighs and stomach. Her skin seems thin. She is also flushed a lot. These two things could be from the high doses of iron? What have we done? My initial thought was that she wasn't really absorbing iron. We took her to a pediatric hematologist with St Judes who took a lot of time with DD and pulled a ton of labs. She said that dd's labs were gorgeous, all vitamin levels were beautiful, stores are high, no sign of pernicious anemia, etc. She wanted DD to see cardiology. Cardiology was pretty thorough with an ekg and a detailed ultrasound. They said that everything looks good. She actually wore a 24 hour heart rate monitor but of course she was episode free during those 24 hours. Cardiology wants a full Endo workup and then will do a 30 day heart rate monitor if necessary. I will note that her heart rate range for the 24 hours was 55-190 and she didn't run or do anything crazy during that time. She had a lot of school so she was sitting down most of the time. She went up a little on thyroid meds end of May. I just had her thyroid labs pulled again to make sure. Her Tsh is slightly low but all other numbers in line. Like T3 and T4, etc. I wouldn't think that a slightly low TSH could cause this, especially if she is not feeling hyperthyroid overall and she is gaining weight not losing. The time she was accidentally overmedicated she was losing weight, couldn't sleep, felt hot, etc. I also had insulin checked with her thyroid and it is good. This week she completed a 24 hour cortisol saliva test. We will get those results back in about 7 days. I have an appointment scheduled for next week with the hormone doctor that recently discovered older dd's pcos and horrible hormonal imbalances. Later in September (when it is the right time of her cycle) she will have a full hormone panel done to test her female hormones. This is a lot, I know. So if you have read this far then you deserve a prize. Thank ya'll for all of your help thus far. For your wisdom, insight, and encouragement.
  11. I must be terribly confused because I thought you need high doses if you have MTHFR. I guess I need more research haha.
  12. We spend an ungodly amount of money on food. Because we are gluten free and dairy free mostly and are picky about some things (that's a choice we make) and some of us are vegan. I had to go a completely different route than what is expected. I started making the 35-45 minute trip to Trader Joe's and Whole Foods because we require special foods that are simply more expensive at the closer grocers. We also do a few things from s&s at amazon. Making the trip to TJ and WF and avoiding these closer stores has shaved $300 a month off my food budget. My point here is that it is dependent on your circumstance, preferences, etc. I find that food budget threads here also bring on a lot of judgement 🤣 You will inevitably have someone tell you that they would feel like a millionaire with $200 a week and they can do it for $25 and someone else will say they can't possibly do it for $200 a week. It just seems to open yourself up to a lot of judgment 🤷‍♀️ I was spending 1700 a month but if I commit to WF and TJ I can get it down to 1400. Is that a lot of money. Heck yes, it is. haha If we weren't so ridden with food issues, specials diets, etc I might be able to do it for 800-1000. What were you spending before and is it reasonable to shave off that amount? Are the lunches included in that budget?
  13. So I never connected these things before. DD had a concussion/head injury in 8th grade and has had increasing problems since. What are your POTS symptoms?
  14. ok so this is what the cardiologist thinks *might* be dd's problem. We shrugged it off but maybe we need to think on it more. It is so vague.
  15. Hematology did a full vitamin panel and tons of tests. It was with St Judes and they were super thorough. I just knew it was going to be vitamin B but it wasn't. Granted, the supplement she takes is super huge doses of iron and b.
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