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tu4four

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Posts posted by tu4four

  1. Thank you for such detailed help. I really need that right now and know that i am looking for something--anything right now to fix it. Your advice is very wise to do one thing at a time--while I have known that, thanks for reminding me because I have been so desperate that my philosophy has sort of been to try everything that might work and sort it out later. This is the worst she has ever been. When I woke her up this am after she slept 17-18 hours (we had to give her a zyprexa that our psych gave us for emergencies), she was still very much in the same place as yesterday--irritable, wanting people to die and asking why I could 't make them die. We finally let her lay back down after giving her 2 Advil which did zero. She has been asleep again for a couple of hours--don't really know what to make of this, but we are letting her sleep as long as she can.

  2. I am giving 500 mg high allocin garlic. Yes, I am alternating several probiotics including narrow and pb8. I do not see any pattern--today was the worst rage ever, an we've had some doozies. She does have the homogeneous mthfr gene defect. I am giving her methylfolate but have not yet found methylated b12--I am checking that out.

     

    I am going to check out The lemon balm that someone mentioned earlier.

     

    Thank you both for your input. You have no idea how much it helps to know that somebody who is also living through this is thinking about it, too. :)

  3. I'm sorry to be filling up the board with questions today, but do you think it's possible that the garlic that I have been giving my girl is drawing things out/stirring things up? I posted earlier about her rage this am which has now lasted for 5 hours and been the worst one that she has ever had. And it is just dawning on me about the garlic. Hmmm. What do you think?

  4. Good Morning! I am sitting upstairs while on the computer while dd is hopefully coming down off of her rage downstairs. She had 2 Advil this am about 15-20 minutes ago. It's usually done something by now. My husband left for work right after we gave the Advil, and he was shaking, which is highly unusual for him.

     

    Backing up, she's been taking longer and longer to get anything done. Pretty decent mood yesterday, but incredibly immature. We could hardly get her in the shower last night or dressed once she got out. Not OCD stuff, just lost in thoughts, doing other things, etc. She took a long time to take her supplements and antibiotic, and it was only under much duress. Us counting, her crying, us telling her we were going to have to give it to her if she couldn't take it. (Sorry this is such a long story.) I had to brush her hair, and was trying to be careful not to agitate...she hates for me to touch her hair or brush it, etc., but it is now lower back length, and frankly had become matted in huge knots. I couldn't let her go to school like that another day--they already don't know what to make of this, and I know that we are on our last leg there. She started to get more irritable and would whine and scream, dad would come in and tell her she needed to stop, she'd fly into a panic--wide-eyed panic with screaming and shaking. She kept telling me Daddy was mean and scary and clung to me seeming to understand that I was trying to help her.

     

    But she could not stand the hair thing any longer and flew into a rage. She scrambled her hair up and turned on me screaming that I was stupid, horrible, get away, get away, get away!!!!!!! I never could calm her down even when I came up to her room and just sat beside her. She kept screaming and raging and telling me how stupid and bad I was from under the covers. I cannot begin to convey the level on RAGE. I'm sure that I lot of you can relate.

     

    I thought that she would wake up in a better state. Sleep usually resets her. But she is very hard to get up, and when I finally got her out of the bed physically, she started raging again. Screaming, yelling, trying to hit and screaming that I was stupid, we were all stupid, etc, etc. My husband had to help me make her take the Advil and try to get her school skirt on. That, along with listening to her scream and yell and fight us about getting up was exhausting. At 115 lbs, she is now a force to be reckoned with.

     

    My husband whispered during this whole things--she's gotta' take something. She's gotta' be on something. And while I agree, she needs something, NEEDS something, and we do, too, my concern is that we won't be able to distinguish psych med differences from treatment differences. We have an appt. on the 15th, and I thought we could suck it up until then, but right now I am not so sure. When she's doing okay, she isn't doing anything....no school work, no self help like getting in the shower or brushing her teeth, but when she's having a hard time, she is brutal. I really am concerned that our younger two children (and possibly our teen) will have PTSD when this is all over. For now, I'm afraid this seems normal to them.

     

    My question is: would you put her on a psych med? If not, what would you do? We've been using peanut butter, Advil, and I've been giving Chlorella, Magnesium, stool softener, vit d, methylfolate, zithromax, milk thistle, sometimes garlic in a tab and zinc.

  5. Today has continued to be rough with raging that seems to get more and more out of control. I'm afraid that she's going to hurt someone and don't really know how to hold out until our March 15 appt.

     

    Tpotter, thanks for your info about HTP-5. I will definitely get some. Do you use it during a rage or just daily? I used the peanut butter during her rage today along with 2 advil, and I do think it helped some, but after she calmed down some, she continued to alternate between hateful rage and screaming, yelling for me to help her, why can't i help her. I feel for her. At the same time, I am exhausted and tired of being told I'm the worst mom in the world, she hates me and having her tell her younger siblings how horrible i am and that i really hate them, too. She doesn't tell them these when she is reasonable, but when she is yelling, screaming, etc.

     

    We saw an LLMD in MO 2 summers ago, but he was absolutely no help. He has a good reputation, but I took 3 of my kids and myself to see him (I have 4 kids), and he read off the same laundry list of things that i could do or not. He was helpful in that he gave us a ton of antibiotics, but not a lot of direction. I have that appt in March in Plano and then I have one with a doc in Colorado in June. He is not listed here, and I cannot rec him or not as I have no firsthand experience, but my good friend with a PANDAS/Lyme daughter had success with him. Til march 15, I'll be trying to hold off putting her back on psych drugs. I feel like I won't know what's what if she's being treated for Lyme/PANDAS and on those heavy drugs.

     

    Thanks for your responses. :)

  6. My 10 yo dd had her tonsils out last year and had a horrible time after....incredible separation anxiety, anger and frustration with teachers at school, rages at home. HOWEVER, we did not to abx.before, after or during. I think that would have seriously helped. Even if it wouldn't have helped, I still would have done it. Because that reservoir for all kinds of things is eliminated. We plan to take my 3 y o's out ASAP.

  7. Today has been a rough day. We have been on zithro for about 2 weeks, and as crazy as this sounds, our local doc (love her, but not a PANDAS doc--we have 2 appointments but a long time to wait) suggested that we give zithro every other day after the initial week or so. Yesterday was her first day of no zithro. Today was horrible.

     

    It was her birthday and she started raging almost from the instant that she got up. She wrote on the bathroom wall ("unhappy birthday--all because of MOM!!!) She was initially upset because she didn't have the shirt that she wanted to wear. She went on to throw things, hit her brother in the face with a water bottle, scream and yell insults at everyone around. Then she went outside. I went out after her, and suddenly she was gone. My neighbor and I looked all over the neighborhood. I came into the house a couple of times and told my 16 year old, if we don't find her, I'm going to have to call the police.

     

    Finally, after I called my husband's supervisor and got him out of class (he teaches at a nursing school), i saw her....under our dining room table where she heard everything I said about calling the police-- and did not come out.

    She came out and then got to a pretty agreeable place--I was going to take her to school. We went to the car, she was fine, then she couldn't focus to get her shoes on, then she couldn't stand the way they felt---eventually she kicked my windshield and made a small crack a very large one.

     

    I had already given advil and today's dose of zithro--which i think helped her to get herself together initially. But at this point, she couldn't get herself back together, and I had to give her a med that her old psych had given us in case of emergencies like this one. She slept the rest of the day.

     

    So my question--for those of you that have pretty straight-forward PANDAS, do your kiddos go through this? She is also positive for Lyme, but negative for bartonella and babesia. Regardless, this behavior seems to suggest bartonella. Any thoughts?

  8. I know that my daughter also had horrible yeast issues, but for us, the pure liquid gold, horrible stench (way beyond poop) had to do with a dairy issue. I breast fed her, but I was having milk in some of the foods that I ate--I wasn't drinking it. When I completely cut it out, that got better. Went on to find out that she has an issue with gluten, as well, but I don't think that was the culprit with the diaper. Does not sound like yeast die-off to me. And I don't think it will die off until you completely cut out sugar and give something to kill the yeast. Good luck!

  9. I am the mom of 4 kiddos in Houston, TX. My dd10 started having big separation anxiety, clothing sensitivity (couldn't wear underwear or socks at all and very few other things) and OCD when she was 6. She had several bouts of strep that year. We struggled through the summer and the next year, but when she was 7, she became aggressive, and we didn't know what else to do besides see a psychiatrist who put her on psych meds.

     

    The next year was horrible--even on many different psych meds--threatening others, hurting others, rages every day after school. Then we did a yeast detox diet that summer and things were much, much better. But as school started, things started to slide. We finally heard about PANDAS that year. She was part of the Cunningham study 2 years ago, and her results came back as very high--she has PANDAS. However, every doctor that we saw told me I was crazy. I didn't really know what I could do for our daughter, and then we had all of our kids (and myself) tested for Lyme, and her brother came back CDC positive. The rest of us had crazy results with critical bands positive or IND.

     

    We went to MO to see an LLMD, but he was not incredibly helpful. And no Lyme antibiotics seemed to touch what was going on. I couldn't seem to fix anything for her at all, and we had to continue on psych meds. She has been on them for four years--until we tried Lithium with Abilify. She started having some major side effects--slurred speech, drugged look, shaking so badly that at times she couldn't drink from a water bottle and little to no ability to concentrate. And then she became wild again, screaming, yelling almost constantly, trying to hurt people with her words if not physically. Our psychiatrist started to wean her off of lithium. And then we weaned off of Abilify. I felt like I needed to see what was my kid and what was a side effect at this point.

     

    Once she was off of all meds--I had my daughter back for 3 days. My daughter whom I had not seen in years. It was beautiful. But gradually, things faded out, and she became more irritable. But she still had times of the day that she was happy and herself. And then on Thursday night, after a really happy afternoon, she got out of the shower and had to straighten all the wrinkles out of the towel. And she couldn't put the washcloth down. We finally got her to bed that night, but she woke up the next morning and could not put her toothbrush down and kept having to wash it off. It was one compulsion after another. Until I gave her 2 advil and zithromax. 30 mins later she was....not the girl that she had been during the happiest time, but she was playing with her siblings. She was not especially cooperative, but she was workable.

     

    And then I took the kids to the pedi and found out the younger sibs had strep. Ooooohhhhhhh. So now we're back to this. It really is PANDAS.

     

    The next day, she became hostile. Almost like she got stuck. Said lots of hurtful things and then moved on to "I'm sorry!" probably a million times. Screaming, sweating, red-faced, uncontrollable. Hours. We gave her a Zyprexa like our psych said. After an hour, she was knocked out. Slept for 17-18 hours. Woke up today and was okay, but shaky for an hour or so, then back to hostile, angry words, a rage totally uncontrollable. Beating the house down. She's finally asleep after another zyprexa.

     

    There is no way that I can get her to school tomorrow, and I'm expecting them to tell me not to bring her back. After the way that she was before we took her off the meds and then the fact that she got so behind and wouldn't do her work all last week, I'm thinking this is it.

     

    So....what are your recommendations?

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