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Tap last won the day on September 11 2013

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About Tap

  • Birthday September 27

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  1. Tap

    florastor

    If you are going to stay on it long term, check out Costco online for pricing. It was the cheapest I found when dd was taking it daily. Current regular price is $65 for 120, but it goes on sale sometimes. When I bought it on Amazon, I would get really random packaging and sometimes they had the little theft sensors like a grocery store uses. I stopped buying on Amazon after that. I figured people were stealing them from grocery stores and selling them online.
  2. I hope we get to the point that we can have a relatively normal relationship. but right now, I am not certain we can. She is genetically my great-niece and has been with me since she was 5mo. She is my sister's daughter's daughter. My sister and my niece (dd's mom) both have significant mental health issues and act similar to dd14. Each generation seems worse than the previous one. My relationship with my sister and niece doesn't exist, so I think it may end up being the same with my dd, once she is on her own. I am legally dd14s guardian. Every year I have to write a letter to the judge saying why she should stay with me. This year, I am trying to decide what to write. I can request the guardianship be revoked, but then she will go into foster care for the next 3 years until she is 18 and then age out. I hate that idea, but I am to the point that I can't handle living this way any more. It is my very last plan, but unfortunately as I run out of ideas, that option is moving up the list rapidly. I have been working to have her go to a residential program instead for a couple of months. They have a long waiting list, but it isn't chronological, it is need based. So the person with the highest need (emotional/behavioral needs--not financial) gets the spot. We tried this once before and never got chosen for acceptance because the spot always went to someone else. I thought the psychiatrist and her therapist was working to get the referral done. I hadn't heard anything in a month, so I called to check on the status. The facility sent a document request from her psychiatrist, and he didn't get it. So, all this time, the two of them have been waiting for the other to send documents. 😞 A month of time is now lost and we are just starting the review process. She is bigger and more violent now, refusing to attend school at all, and won't follow any household rules. I hope this behavior gets her bumped up the list. I am hoping that we can get her placed before she ends up in Juvenile Detention. Her actions over the past year, could have definitely resulted in that, but the person involved didn't want to press charges. If we can't get her into a home, she may need to be arrested to see if that is enough of a wake up call to modify her behaviors. 90% of her actions are under her control; those are the ones we are hoping to modify. She will always have issues outside of her control, and I can deal with those, just not a constant threat of violence over simple requests like "please put in a load of your laundry".
  3. I agree. I am not sure if you are just adding to the conversation, or thinking I am pressuring or adding to thier guilt. The OP asked: (snip) So, I gave my idea of how it could work. No guilt involved. Just a suggestion. I have friends and family all over the mask/vaccinate spectrum. I try to make things work how ever I can, but sometimes, the answer just has to be 'next time...when COVID isn't as bad'.
  4. Can your family go early to hang out with the grands, an your kids go play on the bouncy. Then have everyone meet for a dry hang out (while you mask). Then the other kids can play on the bouncy after you leave? Obviously, you will have to deal with a bit of awkwardness, but if you want to make it work, you probably can. It would be a bit emotionally draining, but sometimes it is just nice to work things out so family can see family.
  5. I don't blame myself, but it definitely takes an emotional toll on how I feel about my abilities as a parent. I feel like the wrong parent for her sometimes. We are at the absolute extreme end of this right now and I really think she needs to go somewhere else for a while to be parented/mentored by someone other than me. I don't mean that in a sulky way, just that I am honestly no longer an effective parent for her. She refuses to do any work with a therapist. She refuses to talk about her feelings. BTW... DD14 is completely verbal and has had extensive BT and OT to work through verbalize her feelings. She has the vocabulary to talk about them, she just doesn't want to do anything that makes her feel uncomfortable. I have felt this way before, and things got a bit better, but I am at the verrrrrrrrrrrry end of a threadbare rope.
  6. Spryte mentioned the brain zaps....I forgot about this until they mentioned that. My brain felt like it was a glittery snow globe when I was on it. When I tipped my head side to side, it was like I could **feel** little sparkles in my brain like the weather condition called Diamond Dust. It wasn't an unpleasant feeling, but it was distracting and bazaar. It is kinda like, how if you close your eyes, you can see things floating by and blotchy colors. You can't focus on them but you can still 'see' them. It was like that, but with little flecks of glitter, that my brain could see, not my eyes. (Click on the video link on the right side of the link if you want to see Diamond Dust. It is like glitter falling from the sky, but it is ice crystals. It it is soooo beautiful and the video doesn't do it justice, but you will get the idea)
  7. A lot of people really, really like Cymbalta (duloxetine). We see it used often in pharmacy and people really seem to respond well to it. I couldn't take it personally because it put me in a mental time warp where I couldn't even get up out of my chair, and sat there all day. I am a baby when it comes to taking meds tho, so it was probably too high of a dose too fast. It was absolutely worth a try tho.
  8. LOL that is part of why she does yoga 2x per day. Two shorter sessions on days that she works, instead of one harder session. She can do harder workouts that involve cardio/weights but only on days that she doesn't work. It took her years to build up to simple workouts. Before POTS, she was a 3 sport athlete and honor student. POTS robbed her of her potential. She is clawing to get her life it back, but it is a very hard battle for certain. BTW.. have you heard that they are looking at if long COVID symptoms fall under dysautonomia? It might be the diagnosis that it ends up falling under, which I hope means tons of funding will follow!
  9. She has had tons of blood work done. I actually paid for full genome sequencing several years ago (on both her and dd14), but never did anything with it. There was an FDA issue with what they were offering and they didn't honor what they promised, so I kinda forgot about it. It is just raw data at this time. Your post is really interesting, and I will look more into it, when my brain can stop to think about the data and what I can't get from it. Probably after Christmas, but I will get there eventually. LOL
  10. Her PCP writes it, but I work in pharmacy so I understand the meds on a different level than most parents. I have also consulted friends who are mental health focused pharmacists. They agree with some guided choices, but then just trial and error from there. Her B vitamins levels are good. She either takes the Dolovent (supplement fax linked) or a b-complex.
  11. DD22 has ADD and several health issues (POTS, migraines, chronic fatigue, chronic urticaria are the biggest ones). She has tried probably a dozen ADD meds including patches and she gets migraines from them all and a skin reaction to the patch. She has been working on taking one college class at a time and would like to start taking ADD meds again, but the very first pill of a very low dose stimulant gave her a migraine today. Historically, she could take it a few times before the migraines started building but that seems to no longer be the case. She has used caffeine in the past but with her tachycardia (part of her POTS), it isn't the greatest option. I know we tried other things in high school, but don't remember them right now. What she already does to take care of herself daily: Yoga 1-2x daily. Cardiovascular or weight lifting exercise as she is able Well hydrated. Drinks very high amounts of electrolytes/fluids (over a gallon a day) Sleeps 8-9 hours a night on a set schedule. Takes vitamins and other meds for her migraines and other health concerns. No unknown vitamin deficiencies --she sees a naturopath who reviews this Eats very healthy, (predominately cooks from scratch with whole grains, high amounts of vegies, and high quality meat). Limits sugar and caffeine. He hormones can be a bit wonky, but she has an IUD which helps regulate her. Avoids excessive screen time. Has high quality blue light limiting light bulbs in her whole house. Uses natural sunlight as much as possible. Lives a relatively low stress life. Just her, her husband and thier dog. She works 3-4 days a week at a job she enjoys (she can't work full time due to chronic fatigue) She takes Emgality injection and Dolovent supplement for her migraines. What else have you found successful? or any suggestions?
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