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Plum99

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Everything posted by Plum99

  1. I don’t understand what the difference is, but Naproxen worked noticeably different for my husband (not diagnosed), while my daughter gets better results from Motrin, and antibiotics make a big difference with her too. But for my husband, naproxen has been almost like magic in lessening his rage episodes that stem from what I believe could be called intrusive thoughts. He also has terrible anxiety, symptoms not touched by naproxen. And I could be wrong about this one, because it has been a long time since she took it and was taking many other things at the same time, but I believe that I sa
  2. Wombat, I have been thinking about this post this past week. My daughter had her first ivig 10 days ago. Usually, when she comes across one of irrational fears, she will do anything BUT talk about it. She will deny it, will be sent into some kind of episode, refuse to leave her room, lash out, it can go on for hours or ruin a whole day. This week she has been telling me what scares her, brushing it off within minutes, sometimes reassuring herself that it's not scary. It's still there, and I know most kids don't walk around having to reassure themselves that robots aren't going to jump out
  3. When my insurance wasn't going to cover Suprax, our doctor called in Ceftin instead. We never used it, because my insurance did end up covering the Suprax. My daughter responded well to it, but only for a little while. It kind of wore off, like every other antibiotic does. When it did work well, she was taking it in combination with Alinia and Zithromax, so I really don't know if it was the Suprax alone that I saw the results from. The way our pharmacy works, is they automatically call the doctor for a replacement when our insurance doesn't cover the medication. Maybe you could ask yours
  4. My daughter was afraid of the color red for months before I got any information out of her! To the point that she didn't want to leave the house, and was attacking other kids wearing red. Somehow it was also her favorite, and she would request things red, but would also go completely insane, have panic attacks, and be miserable.
  5. My daughter is only 4. She was diagnosed with Pandas last year, when she had just turned 3. This is her biggest problem, and it's debilitating. It stopped with antibiotics at first, but not anymore. She will refuse to speak about whatever the fear is, and even deny it, but it will be obvious when she reacts with total insanity, sometimes so scared she gets violent. Some things I have been able to figure out and she would then admit and talk about were the color red, things that are square, a simple phrase. All things that no one would ever guess could bother anyone so much. She did have
  6. I'm looking for a doctor for my brother in Los Angeles. My daughter has Pandas, my son has Lyme, and my brother- I don't know what's wrong with him, but I need a doctor who will find out. His symptoms look like something I would describe as psychosis or schitzophrenia. I do not live near him, and his symptoms became severe not far off from the time my of daughter's. My mother will have to take him in, and I don't think she will have the fight in her to push someone to look into this medically. I need to point her in the direction of someone who will just do it. He hasn't had any kind of
  7. I'm pretty happy to read this because my daughter is taking Clindamycin right now and we're in the process of setting up ivig!
  8. I want to remove everything. My kids have high lead, but my daughter was in the 95th percentile for things like perchlorate and several other non metal things. She also gets rashes from bathing, even when no soap or shampoo is used, so the water must be irritating her skin. I want to remove everything I can.
  9. I have heard about this, and tried to find more information online, but haven't been very successful. I don't understand how it works, or why it works, and I am interested.
  10. I'm looking for advice on water filters, both for drinking water and bathing. I'm renting, so my options are limited. I'm feeling overwhelmed trying to figure out what I should be purchasing. Reverse osmosis for drinking water- but is there one that's the best that I can remove when necessary? And for bathing- is there a good option? It seems like the filters that go on showerheads don't get everything, unless I'm just not looking in the right place, or there's something I'm missing. I'm really not sure where the best place to look or purchase is. This is a priority for me, so I'm willing t
  11. I'm a teacher. I've gone on class trips with different schools. I have never worked where the medication policy was anything other than the teacher administering medication to the child. We always had to watch the child take the medication, initial each time medication was given- this included vitamins. Your school must have a more relaxed policy. Personally, I wouldn't like it. Not all children make good choices, or are able to handle the responsibility. Let them be responsible for getting their homework assignments, asking the teacher for help, and working on relationships with peers.
  12. EDS comes up almost every direction I turn when looking at my son's symptoms, but I always think there's no way another rare disease is connected to my family. Who diagnoses EDS? I didn't know Chiari was related, but that is something I brought up to his very unhelpful neurologist. He has not had an MRI yet. My daughter was diagnosed with Pandas, and she was put on a mast cell stabilizer for a little while because she had overnight allergies to everything right after her first recognized Pandas flare. My son has Lyme, a vascular birthmark, is double jointed, both children are constantly co
  13. Wombat, It is really helpful to me, as a parent with a child who doesn't verbalize what's going on in her head, to be able to read this. I really appreciate how open you are in sharing, and it helps me understand the type of thing that may be going through my child's head when a certain line from a song, or color, or word sends her into an episode that may last hours. Thank you
  14. For some reason we couldn't get the information from anyone this time. The pharmacies just kept saying our insurance doesn't cover this medication for you, but that happened again each time a replacement was sent in. They said it wasn't because of the deductible, but gave no additional information. Now this morning, after almost a week of this, our prescription service said we just need to have them send over a form to get signed by the doctor to have the medication added to what we are allowed to have covered. Strange it took this long to get that, and I believe we were told that the only
  15. Has anyone ever heard of an insurance company refusing to pay for antibiotics? I'm not completely sure what is happening, but it has been almost a week of not being able to get a straight answer as to why. We switched pharmacies because the one we were going to was giving us a hard time. After we switched, the next pharmacy was very helpful, but after days of pharmacy-doctor-insurance company phone calls, they said they didn't know, and told me I had to keep dealing with my insurance to get them covered. Only today did we hear from the prescription service that our insurance company flagged
  16. My kids both have those symptoms and I have never had anyone willing to do any kind of swab in that area. I actually had this on my list of things I'm hoping to get some kind of testing for, but it looks like there are so many different ways to look for it? Have you tried the spit test? I'm not sure if that's not a real thing to try, but I did try myself and my daughter, and I wasn't exactly sure what my interpretation was. I had spots on my tongue that came and went my whole childhood and had no idea what it was until I met a nutritionist who told me it was Candida. She gave me some infor
  17. It's so difficult to try to sift though information googling when there are so many strong opinions and the word "quack" keeps popping up. Information that I've received from people here has always been very helpful and reliable, and I really appreciate it all so much. I'm trying to understand why my daughter's spectracell results were so different from her nutreval results. I understand the test is done differently, but which one is the one that is most reliable? She had spectracell done first. Most everything made sense to me, symptoms matched, but she was deficient in quite a few thi
  18. MLL, my daughter is the worst at night too. Every since this all started for her, even at her best times, from the end of dinner to sleep was the worst. Some things that have helped her are getting a good water filter for her bath, and melatonin has been a miracle. Some things she was still eating that didn't show up on allergy tests were making her react, so I'm super careful to give her easy to digest, foods she doesn't react to at dinner especially. Also, I just eventually got her to talk about what upsets her so much at night, and it was things like she's afraid to sleep alone, she's a
  19. My children have MRIs scheduled for the end of this month. They are both young, so they will only do the MRIs with sedation. When I initially asked about information about the sedation, I was told that a nurse would call me two days before the procedure to go over questions I may have. While looking for information on their website, I see the information provided is as helpful as "they will breath through a mask that will make them feel silly and giggly inside." I plan to call back on Monday and ask to schedule something sooner to go over details, but I'm having trouble preparing myself.
  20. MLL, I probably should have added that my daughter was diagnosed with Pandas. Really, that didn't make anything more clear, other than allowing me to watch her respond to antibiotics again. I don't think it seems that crazy that your daughter would hold it together for others and fall apart at home. There was a 2 month period of time where I don't think there was any difference between home and out of the home, where she was just gone 24/7. But after treating an infection with antibiotics, then going off, trying to find a Pandas doctor, going back on and off and so on, my daughter would be
  21. This sounds so much like my daughter right before I heard of Pandas. Everything from the hives, throat and ear infections, behavioral response to food dyes, milk allergy (my daughter's didn't resolve itself though), defiant, hyper, raging tantrums, separation anxiety, inconcistent behaviors that didn't make sense, spitting, hitting, not speaking, foot and leg pain (mine also has knee, hip, shoulder, neck, eye, and head pain, but foot pain is one of her biggest complaints), self conscious. At first I went the behavioral route, even though it didn't make sense to me how she could become a compl
  22. I also suspect glutamate as a huge problem for my daughter. The antibiotics she did well on also had an effect on glutamate, but I didn't realize it until recently. I can see a clear positive result from keeping glutamates out of her diet, including natural, healthy foods that are high in glutamates. But that is a very limited diet, and I don't think there's any way she can be healthy on it long term. She also has low glutothione. We were told to use NAC, and at first she responded terribly to it. I didn't come across any other options, so I tried a few different brands, opened up the ca
  23. Wow, I'm dumb. I don't know why I didn't know (or forgot) that. Clearly I am resistant to wanting to be dealing with Lyme, since I have been hearing that it sounds like Lyme for months now. Three weeks to a month would be close to how long we'd last on one antibiotic too. Thank you. Sorry to ask an obvious question.
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