Plum99

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My daughter is only 3, and even though she's starting to communicate closer to what normal is for her, I can't get much information out of her, and I am so, so curious and want to understand. -I know that anorexia is a symptom in an OCD way. Does anyone also have an issue with it because of swallowing? If so, is there a connection or reason? I just can't imagine a 3 year old being able to have a fear of choking or food being contaminated, but she did stop eating and drinking, and never said she wasn't hungry. She would be upset if I took her plate off the table, but wouldn't eat. She would take a bite if I put it in her mouth, and then not swallow. And this was also an issue with water. This was one of the first things I always noticed about her as a signal that she would be getting sick. In the past I thought it was a sore throat, but now I don't. This time it was a urinary tract infection. The first time I recall her not drinking was followed by a rash. - Do they remember everything? I just have to know how it felt. I cannot imagine. Can they tell you what they were thinking? I might be thinking this is a bigger mystery than it is, because my daughter seemed to just be completely gone in every way, and I can't stop thinking was she just 24/7 afraid? Or in pain? There were times I'd ask her to please tell me how to help her and she's grab my hair and head butt me and cry. Was she trying to say my head hurts and I can't talk anymore? She's not healed, but she's a lot better than before, and I said something about being so happy she came back to me, and she looked right at me and smiled, and it makes me feel like she has some understanding. -If your child had specific fears, were you able to make connections and understand any reasons behind them? There are still severe fears here, but she's more rational, and expressive, so I am kind of putting a couple pieces together. But some fears seem to have vanished- like fear of her father. And other fears are still extremely problematic. That makes me think there's a reason and I'm missing something. Like fear of water? Does anyone have that? Bath or shower time is one of the most stressful things right now. A couple weeks ago I'd have to just hold and wash her while she clawed at me. I have scars on my hands and arms. Now she just holds on to me and climbs all over me crying before she gets in by herself, I can see she is terrified and forcing herself to do it, but it's miserable and from that point until the point she falls asleep is nonstop anxiety, repeating things, it's the worst part of the day. Does anyone else have a thing with water that was never there before? I am trying to guess- does it hurt? Is skin super sensitive? Is it the movement? Is there any way it has to do with feeling like they can't control going to the bathroom? Can water be in any way related to seizures or nystagmus? After having what I think was a seizure where I dress her, she was terrified to go back to that place in her room for days. There is one type of nystagmus I have only seen her get while lying down, which makes me wonder if that is how sleep problems started. Not sleeping did all start with her standing up, and finally she just was terrified to be left alone in her room. At the same time, she was afraid of lying on her back on elevated surfaces, so maybe a balance issue? One of the strangest things she used to do was say her skin was wet and ask for towels to wipe it. Sometime she said her skin hurt or clothes hurt. She stopped letting me put her hair up in rubber bands. Did anyone have this? Is it extra sensitive skin, or OCD just thinking something is on there? Did anyone have Autism spectrum symptoms? She has had autism, OCD, anxiety, ADHD, tics-lots of different symptoms. But I think a very mild version of the autism symptoms were there for a long time, and I wonder if this just exasperated them, if they will go away with the other symptoms that are starting to disappear. Some things overlap, but now that her walk and body movements have changed so much, I'm not sure what I'm seeing. She is clearly swinging her body abnormally, but even her feet are doing something different, which I would compare more to Autism than anything else I've seen. -If anyone else had eye movements like nystagmus or had absence seizures- what do they feel like? Can they feel them before they happen or while they happen? Do they feel nauseous? Dizzy? -I'm not sure if this is just a urinary tract thing or a Pandas thing, but going to the bathroom- what is going on? Is it a feeling of not knowing when you have to go? Like you can't feel it coming? Is it painful? My daughter still will not go even a minute without a diaper on, and she was close to being trained before, and never had an issue not wearing a diaper, even not being trained. Or is it an anxiety thing? - is there a reason why urinary tract infections would be linked to this? A 3 year old who has already had 4 UTIs, hygiene is not an issue, doesn't use bubble bath, it really doesn't seem right - is there any reason why she would have been doing a lot of holding her head down. I mean like standing up, bent at the waist with her head on the ground. Also sitting in a chair, but hanging her body down off it, so her head was dangling? Does her brain hurt? It would also explain the head banging. Or dizzy? I want to hear all the people's perspectives who have been through it. It all amazes me to no end.

My daughter is too young to be able to give any helpful information. She's only three. I'm curious what others have to say about this though, and what the explanation might be. Besides her motor skill dramatically improving as soon as an infection was somewhat treated, the other thing I noticed happened right away was she started spelling out words with alphabet magnets on the refrigerator, writing her name, then other letters, and then communication started getting better. She's so young that I can't get an explanation about any of this, and I am so interested. At first I thought she stopped doing a lot of things because she was unhappy. Once she started coming back to life I thought a lot of things had to do with fine motor skills. But lately language has really been something I've been trying to figure out, as far as why it went away, was she in pain, distracted, does she remember how she felt?

I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope. I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care. I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing. I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday. I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.

I don't see her, but I tried to make an appointment with another doctor who I think shares an office or works with her, and I was actually directed to her instead. I also left a voicemail and didn't hear back. My guess is that they are super busy and missing or taking a long time to return phone calls. I want to believe I wouldn't have been directed to her if she wasn't taking new patients or wasn't in the office, but I don't know for sure.

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Never mind. Sorry about this.

My daughter just had some strange eye movement. Her eyeballs just kind of started moving around strangely. I started looking online, and maybe it's nystagmus? Maybe it's something else- I don't know. I looked at videos. Should I be going to the emergency room? I don't know what to do. I don't want to go and put the stress on her if they're not going to do anything for us. I don't want to wait if this is an emergency. I can't think clearly enough to find answers, and there's no advice nurse at the ER.

I think I messed up with the antibiotics I thought worked. Originally, she was prescribed Keflex for a week, and then after a week they sent in an order for Penecillin. I thought the Keflex didn't do much, since I started seeing drastic results as soon as she started the Penecillin. I think maybe I was seeing the results of Keflex. But then she was done and had nothing for two days, slight symptoms came back, pediatrician refilled Penecillin and it has been a whole day and I think she's getting worse. I think I really messed up by telling him this one worked. It doesn't make sense to me that a 2 day break would stop the progress once antibiotics started again. I'm so bummed about it. Now I'm starting to feel like I really am a crazy mom who read too much on the Internet.

VEGF- of course I still have to google everything to keep up understanding. What are the chances I would see it associated with the rare birthmark my son has, CMTC. Amazing.

Mama2alex, would it be possible for you to just be my doctor? 💕

I'm not trying to avoid going to a specialist. I just want to get antibiotics and whatever else can help me from this guy while I'm waiting. I wasn't even going to bring it up, and was just planning on straight up asking for more antibiotics, but he already had the Pandas information printed. But when he started saying things that weren't true, like no doctor will look at her about this if she isn't positive for strep, it was hard not to respond with information, because obviously I know that is not true. When I started referring to Pans, and then said, and if it's not that, then it's something like it. Something is happening to her that is helped by antibiotics, so there's something there- that's when I let it out about Lyme or mold or something else. When he said there's no test for mold, that's why I thought maybe I should be straight up telling him what tests to run, because I do not believe he will keep giving me antibiotics without something showing up on a test, but I do believe he believes there's something to this. I wasn't going to bring up the mutations until he had the chromosome test next on his list to suggest. I just got excited that we were both thinking the same things, but I'm still not totally educated enough to know what to say about it. He did have a neurologist he wanted to send me to who treats Pandas, and she is affiliated with Stanford, but she isn't the one I was planning on going to. I will take people on this site's suggestions on doctors any day over any pediatrician, because I have been shown in the past that they do not all care to get to the root of the problem. I guess the most important thing I'm looking for, if asking him to run specific tests isn't the answer, is how do I get him to find something so he can justify giving me antibiotics while I wait. I know he's willing, but possibly just doesn't realize that he might have to dig. I like the idea of making him a binder with information. I think that will help me show him that I'm not trying to invalidate his doctor suggestions when I go to a different person, even if in addition to his. I think he might actually be interested.

My daughter hasn't been diagnosed or treated for Pandas/ Pans or anything else. The wait to see a specialist seems to be long, but that is still my goal. In the meantime, my daughter just had two weeks of antibiotics for a urinary tract infection, and she has had amazing results and has come back to life in so many ways. I had my follow up for her infection today, with a new pediatrician who we had only seen a few times. In previous appointments, before finding information online, we had talked about referrals for autism evaluations for both of my kids. Things got worse and then better with my daughter in between. I went in today prepared to plead for more antibiotics, and to feel him out for how receptive he'd be. To my surprise, he had a blurb about Pandas printed out, and I pretty much cried and hugged him and didn't stop talking until the office was closed. Here are my questions for anyone who has any insight. This guy is an awesome person, and I can see he wants to help. He doesn't know about Pandas or Pans, and already said a lot of things that let me know he doesn't really get it, but he can order labs for me, and was eager to take notes to change the original labs he had written. I wasn't prepared for this at all, but I remembered I read something about the Cunningham Pannel, and blurted it out. He hadn't heard of it, and wrote it down. Was that dumb and totally not the right thing and should I not even be asking him for that? I want to get every bit of information that I can, and I want to be able to take it to whatever specialist I go to. Since the conversation kept falling back to bringing up things like Zoloft, and then me bringing up the antibiotics helped the symptoms, so I don't think I want my 3 year old on Zoloft, and then we were back to but if it's not Pandas- I just let it all out and said I want to see someone about bartonella and mold and I want every test I can get because I know this is what is going on, and no one is going to make me believe any differently now that I have once again verified the antibiotic connection. He wrote it down, but I don't think he knew what to do. Are there tests I can ask him for that signal any of it? He said you can't test for mold. I really have no idea. I just told him that there are these people online, and they know everything, and I'm going to ask them what I need. He gave me another week of Penecillin. He also gave me a child psychologist he wants me to consult with, and a neurologist, who he said knows Pandas. Should I believe this? I feel like part of me didn't trust that a neurologist that my insurance covers would solve the problem. I'm also concerned because she's not in the peak of her symptoms anymore, and I am constantly feeling like I have to defend myself if they don't see it for themselves. Do I just not bother with all this, and wait for who I think will be the most helpful, or is a neurologist someone who is going to be looking at what I want? Surprisingly, the pediatrician and I had another item on both of our lists, and that was chromosome testing. I don't know much about it, but I just felt like there was some things in common with mthfr, and he seemed to think that was important, along with fragile x. Is there anything in this kind of test I should be asking for or looking for? Really, I'm all over the place with what information I've taken in, and it has been so much at once, there are a lot of things that are probably obvious that I need spelled out for me. If you were in my position, what exactly would you be asking for, bringing up, anything at all. I suggested a different antibiotic, but I didn't have anything to back it up, and it made me look bad I think. I just know that she has tested negative before, and we were able to get antibiotics anyway, and the symptoms still got better.

Thank you so much. This gave me a lot to look into and think about, and I am currently trying to teach my daughter how to spit.

Thanks for responding. I always felt like the no fevers thing was some kind of signal, but I didn't know what, and expressing that to a doctor once again made me look crazy. The first time I brought it up, I was just casually saying that she has had multiple infections, she has been noticeably sick many times, and aren't fevers the body's way of fighting something off? Couldn't that mean something is wrong with her fighters? Her pediateician was not impressed, and the next time I brought it up he just said "she'll get a fever when she's sick enough." It has always bothered me though. I have read as much about Lyme, but it does seem like symptoms overlap. I am not aware of a tick bite. Any tips for ways I can tell at home before going into debt on the wrong Doctor?

I don't have a diagnosis for my daughter, but all of her symptoms started with a rash, and since then she gets rashy often. Her first one was all over light pink dots, almost like goosebumps, but pink. Then that changed into real red bumps throughout her body, but no longer on like the pores. Just random kind of everywhere. Then that changed into larger, blotchy areas, then that broke up and it looked like she had bad eczema on her face, behind her ears, behind knees and creases of elbows. Ever since then she gets eczema flare ups, but this was the first. Towards the end she also had bumps on her fingers and toes, and they eventually peeled. Ever since this first time she has periodic rashes, random bumps,never diagnosed.

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Would it be possible to get the Northern California doctors too? I'm in the Bay Area.

Thank you all for the responses. They are so helpful. I'm in the Bay Area-California. I got in touch with a specialist and he will make an appointment with me after I get paperwork back to him. Ibpropion is the only way she has been getting any sleep at all. I thought it was because it was easing some kind of pain, but the inflammation completely makes sense. This second antibiotic that was called in seems to have made a difference. I might be jumping the gun on that, but at least she is looking me in the eyes and smiling. I don't know why it's so hard to get an answer out of doctors. First they didn't want to test her at all because they said she didn't show any signs. Then I finally got a urine test and it showed positive for infection, and it took a week to find out what kind of infection it was. I kept asking if it was strep, and even before the test they kept saying no. But when they gave me the names, and one was anaerococcus, I figured I could google it myself. That's what they sent in Penicillin for, and they did it without asking how she was doing. When I google it, I'm so confused. It's also called postreptococcus? Since I had the urine test done at an urgent care, they just keep telling me to follow up with her pediatrician. The soonest appointment is still two weeks away. He's new for us anyway, since I left my last pediatrician after telling us there was no need for a test. And this wasn't the first time I had been denied a simple urine or blood test, then went to an urgent care and found that there was an infection. My head is still spinning, and I'm just watching my daughter eat a bowl of cereal right now like it's nothing. Like this is what she does, she doesn't flip bowls over and scream while clawing at any human who passes her.

After a year of a scary downward spiral of my daughter, I finally came across information about Pandas, and so many things have clicked. Besides just being desperate for people to talk to who will not think I am crazy, I am looking for information to deal with this as quickly and efficiently as possible. I am also looking for tips on how to/ what can be covered by insurance. My insurance has already played the game of trying to deny services in the past. I have so many questions, and I am so appreciative of any help or information at all. Is 3 too young to have Pandas? What makes me think my daughter has this is an extreme personality change with anxiety, sensory issues, repeating herself over and over (strange things), sudden outbursts of violence and frustration, very hyper, cannot focus, loss of communication skills, extremely rigid, obsessions-big time, no longer enjoys anything, trouble sleeping, extreme separation anxiety at night-sleeps with me now, have to push her to eat and drink, in times of frustration, banging head on wall or floor, biting hands, shrugs shoulders (tic?), I have noticed an eye roll with her 4 times, eyes moving back and forth very quickly in car at times (nystagmus?), eczema. This wasn't just one flip in personality, but a series of episodes over the last year. They were more mild at first. This last one was the one that started the violence, sleep trouble, and tics. In the past "flare ups" or "episodes", I attributed behavior changes to artificial colors, or other things. Over the past year, she has also been treated for 4 urinary tract infections, none of which showed the signs I was told to look for, like a fever. I believe the first time this may have started was with a rash that changed, but lasted 6 weeks. However, she was very sick with vomitting and diarrhea for two weeks about a month before the rash. I went in to see the doctor and urgent care multiple times with the rash, because I could also see she had completely lost the light in her eyes, but it was never diagnosed and I was told it could be such and such if she had a fever. My daughter never gets fevers. One urgent care doctor said it looked like a strep rash as soon as he saw her, and he swabbed her throat, but it came back negative. Eventually the rash broke up and she had bumps on her fingers and toes, and the pediatrician told me to watch for a fever because then we would think about Kawasaki disease. When everything had pretty much cleared up, she was left with eczema. I cut dairy, it helped. My daughter was acting like a completely different person. I cut artificial colors, it helped. She had a few infections that made her start acting crazy, I attributed it to pain. This last one was bad, and I attributed it to a change in schedule. We had just started going to classes for my son's speech delay. My daughter gets overstimulates, and I thought she was losing her mind from it all. But then she started getting worse, and very violent, and then it snowballed. My pediatrician didn't want to do a urine test when I first thought maybe it was a urinary tract infection. She also didn't want to refer her for any evaluations, because at that time I was begging for autism, ocd, anxiety-any kind of diagnosis or help. My son's teacher said she is an emergency and referred me to a different pediatrician. It took weeks to get an appointment, I tried desperately to explain all the symptoms. I asked for a urine test and he sent me home with a cup. I couldn't get my daughter to stop screaming and banging her head against the wall, let alone get her to pee in a cup. I went to urgent care. They said she showed no signs of infections. I begged for antibiotics, I finally got the urine test, and they found an infection. Today, a week later, after calling every single day to get the details of the infection that they said would take 2 days, I was told it was anaerococcus. I thought for sure it would be strep, but I don't even know what this bacteria is. Is this related to strep? Can this be pans? If I don't know the details of anything because I never got bloodwork every time this happened over the past year, what can I do? I couldn't even get bloodwork this time, and she has been so severely disturbed, I literally do not leave the house unless I absolutely have to. How can I get medical evidence and prove to my new pediatrician that there is a link between my daughter having infections and developing behavior problems and more? Do I just not try to talk to him about it and go to someone else? Who do I go to? I'm so afraid that her brain is swelling and she needs an MRI. Her head is very large. When she was younger, it was monitored. I was told to look for her being sleepy and incoherent as something being wrong. She's hyper and angry, and I still know something is wrong. Give it to me straight if I'm being crazy. I'm not trusting of doctors anymore since I have been denied tests so many times and there was an infection. I can't filter myself anymore because I'm so worried, and I look like a lunatic begging for antibiotics. If she's too young to have pandas, or something about this points away from it, it would be good for me to know it before I go ranting about it anymore. I'm one week down with antibiotics, and the immediate change I saw in my daughter the last times isn't there. She's slightly better. I just started round two tonight. Maybe this one will really help, or maybe this is just the new her. I'm desperate to get her back, but I also need a reality check if I'm just being crazy.