Plum99

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 saw a drastic decrease in anxiety in my daughter when she started cromalyn sodium, to drink (there are other ways it is used). It is a mast cell stabilizer. I just wanted to add all these things because everyone seems to be so different and there are so many ways togo about it. For my daughter, I don’t think she could be without antibiotics and ivig. Another thing that helped my daughter, that boosted her mood right away, was low dose naltrexone. And lastly, surprisingly it took years before anyone thought of this one, was a few months on antivirals. Her skin rashes cleated right up after that too, so I guess we didn’t realize that she was dealing with a virus problem for years, on top of everything else.

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 of television sets, but the change is still so great. I don't know what your treatment has been, but I just wanted to let you know that this has definitely helped us.

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 to do the same?

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.

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 explanations for why they scared her so much. It seems like she only got over one, when a new one would take over. No advice. Just wanted to let you know that it's normal in our world.

Thank you so much

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 medical workup at all. I don't know what kind of doctor would be best. I don't think she will be able to get him to travel very far. Any suggestions or information would be appreciated.

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!

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.

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.

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 to make an investment in good filters, but I'm also poor.

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. Medication? I don't really think that's something that should be taken so lightly by the principal.

Moving.

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 covered in bruises with no known cause. I have no idea what's going on anymore, to be honest, but I'm interested in any information you might have about the connections to all these things.

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

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 forms we needed to have signed were between the pharmacy and doctor. I guess we'll see if this is it. I'm convinced there are a list of tactics to delay paying for things.

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 one of the antibiotics sent in, after approving, then denying, coverage. Somehow I still have not spoken to the right person to give me details- it is ridiculous. Has anyone ever had anything like this happen? I'm trying to figure out if this really has to do with anything, or it's just another game to delay prescriptions so we will pay out of pocket. There have been many other "mistakes" or miscommunications our insurance company has made in the past that resulted in hospitals, labs, and us being stuck with the bills unless we caught it quick enough to appeal. This time I'm not sure if something like that is happening, or if it's possible they can decide to stop covering antibiotics.

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 information, I did the Candida diet and a cleanse, and I never had the spots on my tongue again. That was 15 years ago. Right before my daughter started having Pandas symptoms, I saw the same spots on her tongue. I thought it must be the same, but couldn't give her anything like I had taken because she's too young. I just changed her probiotics to something I thought was better, reduced sugar, but then we all fell apart with the Pandas symptoms, treatment, craziness. It has always been in the back of my mind as something I didn't really understand, especially since the spots on her tongue went away after antibiotics. But both of my children still have recurring red bottoms, and the same symptoms you describe. So I have no helpful information to offer you, but I am curious about the same thing.

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 things. When she started with a new pediatrician, the first thing she did was a nutreval test, and based her reccomendations off of the results. The results were very different from the Spectracell test, which was recent, and she saw the Spectracell results- so I guess I'm wondering if that test is not as accepted or not as accurate since she ordered a different one. How do you decide what to trust and how to supplement in a situation like this?

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 afraid of an odor in her closet (no idea). Not that being afraid of things and sleeping with me forever is normal or a solution, but it's a lot better than her having meltdowns and attacking everyone in sight, or repeating herself nonstop until she's exhausted. My daughter has had times of being very mean to me too. She used to wake up in the middle of the night and head butt me. But now I'm glad she did, because I wasn't able to get the message that something was medically wrong until she beat it into my head like that.

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. Does anyone have any experience in this area? My daughter especially reacts to absolutely everything. Are there types of sedation and something I should be pushing for, or something I should be bringing to their attention? This gas that is not named, would they be using nitrous oxide? Low B12 is an issue. I did bring my concerns up to the neurologist who ordered the MRIs, but she brushed them off and said that MOST of the time, everything is fine. I have already seen that we have different ideas of what fine is, so I want to make sure I do this right, or don't do it at all if there's no safe way.

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 at points where she was pretty good, but she would go out of her way to hide that she was upset about something "dirty" or "wet". To people only seeing bits and peices of it, she looked like a child being a child, maybe some sibling rivalry and behavioral problems when she'd hit her brother or be defiant. Because I know her, and because she would also talk to me at times when she was calm about things scaring her, I know what to look for. It's like a snowball effect with my daughter, and if her fears snowball out of control, the second she has a chance to break (usually in her comfort zone), she lets it all out. Still, this whole situation, seemingly behavioral, is changed by antibiotics, but also food. Since your daughter also had the milk allergy and dye intolerance, like mine did, maybe there are also hidden food allergies? I thought I had ours under control after doing allergy tests that revealed many allergies-both ige and igg. I didn't realize until very recently that there were other foods she was eating regularly (and I would also say addicted to) that were adding to her behavioral symptoms.

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 completely different child so quickly, but she also seemed to have similar fits of the same behavioral symptoms with past infections. When I found Pandas information, after she had gotten so much worse she was unable to walk at times, and was barely speaking at all, banging her head, scratching herself during rages- she responded immediately to antibiotics and was better than 100% when a second antibiotic was added. Whether she has Pandas or Lyme or something else, I don't even know. But I know that behavioral problems don't go away with antibiotics. I also know that the worst thing for her has been having inconsistent treatment. Every time she has been treated with antibiotics and stopped, she gets worse than before and it seems harder to get her back. So I don't have any advice, because I'm also still figuring it out. I just wanted to let you know that my daughter sounds exactly like yours and antibiotics changed her drastically.

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 capsules and snuck in the tiniest amount possible. Once I started doing that with vitamin c, she didn't seem to respond so poorly. I'm not sure if she needs a while to get used to it, or if the vitamin c was what helped, but I have been increasing it slowly. I am not sure if it is actually increasing her glutothione, because I haven't had anything rechecked yet. I can say for sure though that something is happening with the combination of NAC, vitamin c, and no glutamates in her diet. We do not currently have access to antibiotics, and she got so much worse after stopping them. Right now she's not as good as she has been while taking antibiotics, but there is such a difference. I can't find any other explanation other than this being a huge part of the picture for her.

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.