Plum99

Could there be a reason why every time my daughter's antibiotic is changed, she improves for a while, until eventually they just kind of stop working? Then changing again makes her improve again? Stopping still causes regression, but she can't possibly just change antibiotics forever? Have other people experienced this? She has taken Keflex, penicillin, Zithromax, penicillin again, clindamycin, augmentin.

My daughter has had reduced symptoms with each blood test she has had (except one) over the past 6 months. It was strange to see after the first time it happened, but now I have seen it so many times, its unmistakeable. I did a search and saw that other people have seen the same in their children, but I didn't see any ideas as to why this might be. Does anyone know? The people drawing blood always talk about how easy it is to get blood from her, how she has "good veins", a good flow, etc. The second the blood starts being drawn, she's calm, and it usually lasts for the rest of the day. What is this?

Thank you

I'm not sure if we're considered clients. Back in June I tried to get her in, when I didn't know what was going on, and just thought she snapped overnight and needed an evaluation. She had just turned 3, so she missed the cut off for early intervention, and for over 3 she needed a diagnosis to use their services. I kind of ran in circles, not able to get an evaluation, while at the same time seeing information online that was becoming more obviously her real problem, and eventually got antibiotics, and started the new direction of circle running. I have no idea why all this time later they would have contacted me to do an interview, but I got a phone call last week. I don't know why they would have picked her information back up, but it got me wondering if they could actually be helpful. I guess they really would only be able to be helpful if the person dealing with us was either familiar with Pandas, or extremely open minded. I really just don't want to keep her life on hold while we continue to figure this out, but it's difficult to find her place. I want her to be able to socialize, take a dance class, make friends, and I know she wants to too. I thought maybe a place like regional center could help us find the right ones, or help in some way. If I enrolled her in a regular class, took her to a regular playgroup, I don't think I could make it work without explaining the situation. She really can be completely normal one second, and a violent rabid beast the next.

Thank you so much for that. I am 100% not interested in pharmaceuticals, and would most likely have my own rage episode if I was pressured in that area. I'm waiting on the 23andme tests now. I really wish I would have done it already. I know she has mthfr compound heterozygous, and that she is taking methylcobalomin and was taking super liquid folate for a while, but I stopped that, along with D. I try to trust her on what she tells me, for the most part, because I have seen her ask for terrible tasting supplements and tell me they make her feel better. So when I had already noticed those two giving me problems, and she told me to throw them away when I asked her about them, I just did it. When you say that these genes are like a dimmer switch, are you saying that they can be turned back in the other direction as well? Like if things get balanced, or something, sensitivities and reactions can still be reduced? Because this is also leading me back to questioning myself. I can see things on paper, like ige food allergies, and know I didn't hallucinate that those appeared overnight. But then I think about how I distinctly remember the day that suddenly everything caused a reaction, wrote everything down- I swear she would flip just by using a soap with a particular preservative, a lotion, of course food. And I stopped everything for so long. Then recently I kind of slipped, and when I saw she didn't really react to some of the things I was concerned about in the past, I thought I must have been going crazy. I should say think, not thought.

Thank you! That gave me so much to look into! Vitamin D does great things for me too. My son showed a drastic improvement with the addition of vitamin D. My daughter gets amped up, maybe more anxiety, maybe more OCD, definitely hard to deal with. Folate does the same, but she also can sense it's mixed into her vitamins before even tasting it, and acts like it's poison. She has been pretty good about taking gross vitamins, so when she doesn't want something I tend to believe it's because it makes her feel bad. I just don't know if some things need to be continued because they get worse before they get better, or if stopping is the answer. Fish oil is another one that really seems to not work for her. Regional Center helps with services for all types of things. My son had speech therapy for a bit, and a great playgroup. The problem was that we started right when all broke loose, and both kids were adding symptoms overnight. I was hoping, if they even acknowledge Pandas and don't just write me off as psycho mom in denial, to be able to get some kind of help with maybe some classes or something where my daughter could socialize in a safe place with teachers who would be willing to work with the situation. She doesn't really fit into a category right now. She definitely isn't showing the Autistic symptoms that she once was. I guess OCD, anxiety, allergic to everything, possible seizures or migraines, afraid of everything, will rip the hair out of your head if she panics- that's the kind of playgroup or class of kids I'd like to find for her. I feel so sad for her. She needs friends and she is so sad when we have a terrible day and leave a fun place. She always asks me a million times if we can try again and do better next time, and it's breaking my heart that she thinks so much about not doing things right, or thinks that was her last chance. We drove by McDonalds yesterday and she told me that Her brother would have one hundred milkshakes, but not her (because she's allergic to everything now), and she said it so calmly while she just cried a little bit. I am pretty much going to die from that experience if I don't find something she loves and makes her happy, or if I don't get her self esteem boosted, which is why I started looking into regional center.

I've been reading through old posts, trying to look for something, but I'm not sure exactly what. I noticed my daughter had a problem with vitamin d a few months back. But since she is also deficient in vitamin d, and I was told that everyone tolerates it, I started giving it to her again. I definitely see something affected, and I can see others have posted about it too. She also seems to be negatively affected by folate, but not b12 injections (Maybe I'm wrong though. Maybe it's both.) So I stopped giving her the folate she was prescribed with b12 a while back, but then I was told it doesn't work right to do it that way, so I restarted. I really think I am still seeing something. She did have a sudden onset of allergies, and they didn't go away, but they did just settle down after she was taking the b12 for a while. Am I trying to look at this folate trap as something? Does anyone know about this, and can you tell me if I'm way off? I'm already kicking myself that I didn't do the 23andme test months ago. It seems like there are several things I'd guess she has, but how could they be there overnight if it is part of her genetic makeup? For example, an intolerance to sulfites appeared overnight, just like other food allergies. This question is unrelated, but can I also ask- regarding the Cunningham Panel, can it mean anything other than Pandas? If she is high on that, and let's say I'm back to questioning whether I imagined everything- what exactly is that test proving to me? Right now I would describe my 3 year old as being wound so tight, that the slightest thing sends her spinning into an uncontrollable mess. She's hyperaware of everything, she notices and remembers everything, she's afraid of everything, but when I get her talking again, I can make sense of it. I see where she's coming from, it's just that her feelings and reactions are times a million, and to someone who isn't getting all the information, it looks like she is ok one second, and the next second she could be attacking a stranger, falling down, not speaking for the rest of the day, or maybe saying things off topic when asked what's wrong, sometimes she gets scared of something and her response is to do something she knows she will get in trouble for, like make sure I'm watching and attack her brother. It's complete insanity, but it's also kind of not. Could it be that at this point, she needs behavioral training? I'm trying to help her by coming up with plans for stress reduction, we have cues she understands mean to go cool off and calm down, and sometimes they work. Still, I feel housebound, because I can't always keep the situation stable. I can't carry her out of a room, scratching, biting, hyperventilating because maybe someone wore a red shirt or a toy looked like a robot, because I have another child with me too. But this doesn't sound like Pandas or Pans or anything anymore, does it? Does it sound like something else? I am so worried about making the wrong decisions for her. My last question is, has anyone had any experience with Regional Center or something like that being helpful? I am not interested in having anything like ABA, or dealing with anyone who is not going to be looking at the whole picture. I've been down that road of trying to convince people of things they don't want to believe, and I don't want to introduce anymore stress to our lives by having someone come train the bad behaviors out of her. I want someone who will see what she sees and help her learn to help herself, and I also am already broke. I can't believe there aren't services out there to help us, but I also don't see what they are. I was thinking about trying to talk to Regional Center about the situation, but I am a little paranoid about opening my mouth because of how I have been treated by doctors in the past. Regional Centers though, I don't know if they are friend or foe, and I was hoping to get an idea of this before I put my foot in my mouth and get another note in my crazy mother file.

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Thanks. With everything I've read about herxing, all previous times I've thought it could be happening I just felt confused about how to really tell. This was the first time I was just shocked and in awe of it. I feel like I just exercised a demon! This little thing would go to drink her medicine, then smack it out of my hand onto the floor, then cry hysterically and try to scoop it up. We're in a much better place now, but it's frustrating to not be able to identify what it is exactly being killed off. At first I kept seeing Babesia come up with Clindamycin herx reactions, but there were so many other things too. Concrete answers would be so nice to have! I guess we'll just wait it out. I keep thinking different symptoms disappearing while other ones stay mean something, but I don't know why that would be. I might be just reaching for something to tell me what's leftover isn't permanent. I thought for sure language had regressed permanently. Now that I've seen it finally come back, I'm focused on fears being permanent because of some kind of PTSD from this whole ordeal.

My daughter switched from Penicillin to Clindamycin a couple of weeks ago. She was taking Zithromax before that. Both Zithromax and Penicillin helped some, but then kind of stopped. Clindamycin was almost instantly like a rollercoaster of insanity, fear, violence, blisters- and I'm surprised and excited to see that she's actually doing better than she has in months. I really thought some things, like speech regression, were going to be permanent. I am so happy to see that she's still with me. I have some questions, if anyone has any ideas or experience. While she is great sometimes, she still has these kind of episodes that send her into a rage, she doesn't communicate, she gets violent. I can't always find what triggers them. She still has extreme fears. Why would this be? How can some symptoms improve so drastically, and then come back for short amounts of time? Why does her issues with sudden onset of fears seem to be in a separate category, not coming and going as much as the other issues (OCD, tics, violence). My son also started having extreme fears. I can't wrap my mind around what it is that Clindamycin is doing, or what I can do to keep her steady, avoiding the meltdowns that are so difficult to deal with. I see Clindamycin can treat many things, and I don't know what it's treating in her. I'm feeling very happy/puzzled/fearful that I'm going to lose her again if I don't get a good understanding of what is happening.

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Can I ask what else was on the mood panel? My daughter is getting Pandas symptoms from food allergies too. Corn and corn products are by far her most sever responses, but her allergy test didn't even show corn at all. Food dyes are terrible, and they're in everything, including medication. Corn starch, citric acid- a lot of corn based additives really set her off and last a long time. I see the questions and answers section says they only treat allergies and not intolerances or sensitivities, but I always thought food dyes weren't considered an allergy. Did you go to an allergist to get things clarified before doing this, or were you able to just treat for everything you felt was a problem? I am keeping this as hope for the future right here.

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Maybe she's allergic to something in the car. I don't know. What I meant was, is there anything I can do? To stop them? Because Motrin is the only thing that is helping so far. Is there something natural that would be like Benadryl?

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