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About SearchingMom

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  1. Hello and welcome! I've been away from the forum until today (just posted something about elimination diets this morning), and I saw your post from early March. I used to post on the PANDAS and Lyme forums when I thought my DS11 might have those conditions. I've read about so many possibilities for DS11: PANDAS, Lyme and Lyme co-infections, vitamin/mineral deficiencies, ADHD, dangerous food colorings/additives/preservatives, psychiatric conditions, leaky gut syndrome, serotonin deficiency, hormonal imbalances, Candida yeast overgrowth, adrenal fatigue, phenol overload, food intolerance/all
  2. Hello, I haven't posted for a long time now, and many on this section of the forum may not know me, I think, but I have some new developments related to this topic. First, a brief recap: back in August 2010 I thought DS11 was PANDAS or Lyme, lots of aggressive and irrational behaviors with daily anxiety; not long after we started a food diary and stopped restaurant foods and food additives/colorings/preservatives and saw slight improvement; later thought it was a vitamin deficiency or yeast overgrowth and/or leaky gut; then thought it was serotonin deficiency which could also be due to str
  3. Dear forjpj, Yes, we're hanging in there. Thank you so much for asking! Sorry I haven't gotten back on until now. Sometimes I get so overwhelmed I can't do much at all. Last night ds11 started to rage again and found a curtain rod we missed when putting away objects around the house, but there was no hitting that happened. I got really upset and told him I was worried about him, and he said he couldn't trust us because we held him down when we said we wouldn't. I told him I understood why he didn't trust us, and that it was okay. He seemed to listen to me a little when I was feeling genuin
  4. Absolutely! My ds11 has dilated pupils all the time, mostly during rages. He says it's because he is afraid, and I read that fear is a frequent cause of dilated pupils. Other things I read about that cause dilated pupils are poisons and drugs (like heroin, dope, etc.) And even when he looks directly into a light, the pupils go down slightly toward normal, but with the light still shining in them, they get larger again. I hadn't read about the brain inflammation part. Sure wish I could get him to take some ibuprofen. SearchingMom
  5. Hello, I just posted on the PANDAS forum re: "Falling apart" and we seem to be doing so for two days now. Huge raging, not sure if the cause is strep (re)infection, suspected yellow dye in Lay's potato chips, too little 5-HTP, or Lyme growth every 3-4 weeks. We saw Dr. R in Plano which gave us a chance to test via ELISA for Lyme, bartonella, and babesia, but someone on the PANDAS forum said ELISA doesn't yield good results. I couldn't get enough info from Dr. R about which one would give us the best info. He said it was a financial decision and ELISA was good enough. What advice do yo
  6. Dear mama2alex, I'm very much looking forward to whatever insights you have! Thanks for taking the time to let me know you understand with such short time on your hands. Thanks, SearchingMom
  7. Dear peglem, Thank you! Some really good concise ideas here. We had already been thinking of clearing out a room so he could go there to calm down. Just a little concerned we'll have to lock him in which could traumatize him more and make it good for only one time. We'll probably have to go in with him which would be better with no objects for him to use against us. My mom and I have tried to hold him, rock him, but he pushes us away, then he grabs us desperately for help but won't let us comfort him. We're going to try today to talk to him about a plan, but the exacerbation has been so hu
  8. Dear LLM, Thanks for replying. I pursued therapy for ds11 back in August, but the folks we've tried to work with won't work with ds11 unless he's medicated, and I can't even get him to take 5-HTP without sneaking it into his food. We recently learned about a play therapist, so that might be a start for ds11. Before ds11 ever came down with whatever this is, I had very good boundaries and limits in place, and we had a solid routine for years. Never any issues with combativeness or arguing at all. I have worked with him since he could talk about feelings and how to make him feel safe. Ye
  9. Dear Me, Thank you for replying! I could really feel your understanding, even over the net! I don't have any friends now. I don't have any kind of social life at all. Just work and home, and trying to get food and sleep, and hoping we don't have to deal with a rage. I tell people about it, but they don't want to talk about it, and they rarely ask how things are going. I'm sorry you've lost family over this. I sometimes worry if that will happen to me, too, but so far, my parents have really tried to help as much as they can. It's a really hard situation for all of us. Even ds11, I know. Bu
  10. Dear forjpj, Yes, it's been awful. There's no word to describe what this is like. He's been on probiotics since May (no trouble getting him to take that), but we've had no antibiotics except for about two weeks of grapefruit seed extract which did exacerbate symptoms. That made me think if his immune system was responding in some way, there was probably an immune thing going on. I just wish we could live normally again. We got to for about 2-3 weeks, and then it all fell apart again. We have been working since early this morning putting up anything that ds11 could use as a weapon. And
  11. Dear Wendy, Thanks for responding. I will call Dr. N again tomorrow. I think that's a good idea. I'm just not sure I can give benadryl because the dyes in chewables/liquid made him rage before. Do they make dye-free benadryl? I'll try to remember to check. I'm in tears even as I write this. And if you know more about the growth/herxing cycles, or somewhere I can read more, that would help. I keep repeating I just don't understand. There has been a pattern to follow before now, and there are too many possibilities for what caused this exacerbation: not enough HTP? resurgence of lyme growth
  12. Dear Jill, Thanks for responding! I do feel like a bad parent and that it's all my fault all the time, so thanks for supporting me that I'm not a bad parent or crazy. Right now, this very moment, I don't know how to go from here with a plan. Everything feels so urgent and horrible all the time. I'll try. We have so much trouble getting anything into him voluntarily that offering something like ibuprofen we've been afraid to try. He can't swallow pills either, so in the past we usually only have the option to give liquid ibuprofen (dyes!) which is not an option now. Do they make non-dye
  13. Hello, This is going to be a random - just too much going on. My ds11 has been raging again for two days and we haven't seen this level of attack since Nov. 1st while on 5-HTP and off additives/dyes. And lyme has a 3-4 week cycle, yes? I'm crying all day long, not eating or sleeping again, just like when we started in May. My parents (in their 60s) have been living here helping me (single mom), and ds11 has caused repeated serious injuries using objects - even before he never ever did this even a month ago! He carries around curtain rods, vacuum tubes, hard drives, to hit us with or throw
  14. No, we haven't had tests for PANDAS or Lyme yet. I did manage to get ASO and DNase-B titers, but that's all anyone has been willing to run for us. We're definitely going to check on Lyme disease and co-infections. I tried to get Dr. I in San Antonio to run these for me, but he said no. We asked the neurologist back on Sept. 3rd for an MRI, but he said no because his diagnosis was "psychiatric" issues. I wanted one because ds11 had a very hard fall on concrete (fell backwards off a step stool in our garage at age 8), so I was wondering about post-concussion syndrome since he had a very smal
  15. THANK YOU EVERYONE! I've been feeling so alone with this, and your reaching out about this has really helped me. Sorry I didn't get back sooner. I've been crying almost every minute the last few days, and I'm trying to get a little more centered so I can keep up this journey. I posted on the Lyme forum to find a good LLMD, and I've got several great leads. Just gotta figure out the money and timing and what tests to do. Today was supposed to be a bad rage day for ds11, but it hasn't been so far. (I don't think I clearly explained in my original post that ds11's rages used to be random, but
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