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Mom_me

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  1. Mom-Me, Well done--thanks for sharing this. We all are fighting for our children, and I certainly understand your mother's heart--it comes across beautifully. I hope one day we meet in person, with children well and whole. My best, Tmom:) Thank you Tmom, I apologize for not having responded sooner. Yes, I would love it if we all could say that our children are well and whole. I feel that this thing can be fought and won. Although it’s very scary in the mean-time. Wishing nothing but happiness for you and your family. With love….
  2. It’s just the tooth. Don’t give him anything else and let his body work a little. I know it’s scary, but my son does this every time he catches a cold, or if a tooth breaks though. I used to want to run for the nearest quick help option, but found it’s best to just let his body adjust. If it’s just the hyper behavior and you’re sure it’s nothing to do with strep or bacteria. He’ll come down in about three days. I’ve been keeping notes, and for (our son) it seems any activation of the immune system (aka a scrape, cold, bite, etc) brings with it a few days of hyperactivity. I started considering this a good thing, because after waiting with fingers crossed, his body always handles it on it’s own. With no outside assistance, just the way it should. I know it’s scary, but giving more medicine is going to cause his body to have to adjust to that again, as well the tooth skin repair. Still ask your doctor, but this is a common behavior for us as well. Hope it helps some to make you feel a little better. ;-)
  3. PhillyPA. You’re so sweet… I don’t feel I did anything more than any other mother fueled by pure desperation. Thank you so much for the kind words. :-)
  4. S&S Thank you for caring enough to read it. :-) I thought maybe it would be too long, but I couldn’t stop. I know I sound desperate at times, but I just care SO much, and I can’t imagine someone’s child is out there suffering tonight. It makes me very sad for them if they feel anything the way we did. I don’t think I’ll ever get over the fear of impending danger, it was very traumatizing for our family, but we now live happily in the moment, yet on guard, and are thankful for the extended time given to us.
  5. Wow! I'm watching my first video from the Dr. you mentioned. "Susan K. Schulman". She seems to be a Smart lady! Yes, she needs to be heard, I agree.
  6. Hi WorriedDadNMom, dcmom, T Mom, and everyone else as well… We saw a “Dr’ here in Florida. My son is currently what I would consider PANDAS free, and has been for quite some time now (although I know it’s always lurking). Occasionally he will get sick with a cold or a tick bite, mosquito bite or something that compromises his immune system, and have slight elevations in his behaviors and tics, but we now know what to look for, and understand serious from regular behaviors that will clear on their own, and if it looks serious we get a Strep Test, if that comes out clear we wait it out. Usually a few days and all is back to normal. The pediatrician said at our first visit that she thought he had tourretts, and so we left the doctor with a paper and which didn’t help in the slightest. I researched tourretts and nothing matched up. Which was really hard to do because I had to sit with him in my lap the entire time, being that he was so afraid and needed constant support and someone in which he could confide his thoughts and fears. Our son could not speak clearly at this point, when prior he would get complements on his ability to speak so clearly, he was saying moom and ump at 2 months. (Which meant Mom and up) once getting strep he began staggering into things like walls chairs, banging his head, slurring his words, obsessive thoughts, OCD style hording etc... and completely stopped eating. He would walk up to buildings after 15 minutes of trying to cross the parking lot with people staring, then place his back against the wall and attempt to slide through the doors with high unstable steps; (note: At the time he had just turned four years old, and was very small because he hadn’t been eating, ANYTHING) most of the time I would have to carry him through just to get it over with and to avoid the weird looks from people. In which case he would begin crying uncontrollably as if the world was going to end. And I had NO IDEA what was going on…. All this for just a trip to the store, he would make weird noises and flick his tongue as if he was brain damaged from birth, and roll his eyes back, and act like a baby, and , and and…. IT WAS HORRIBLE! And that’s just a handful of the problems; I have a whole bag full that would take this entire page to tell you. He would stay up all night for months fearful of everything, telling on himself, and think everything was a swear word, he couldn’t throw ANYTHING in the trash, or even play with other children. We’ve been to many doctors and psychiatrists, but truthfully, I didn’t feel in my heart that they had the best interest for my son in mind, and still don’t. When I called the “Dr” (a PANDAS specialist, and Psychiatric Center which was by accident because I had no idea what PANDAS was at the time of the call) and asked for help, they said, “We can help you, who’s you insurance provider?” I paid cash because my son was not on our families insurance plan, and we really never had a need for him to be, affording his medical bills wasn’t a concern at that point, but it got me wondering, for people who may not be able to afford their childs care, what happens to them? Do they get nothing? Are they dismissed to go die quietly in a corner somewhere? Are they so unimportant? So anyway, the appointment for the “Dr” would take approximately three months to schedule us in, after telling them that our four year old was suffering so badly that he couldn’t sleep, and wanted to die so that “God will fix me.” I asked them what could I do in the meantime. They said they couldn’t give advice over the phone. Do you see how much they really care? I hung up and my son was left to suffer, he clung to me the whole conversation, and they could plainly here him and his concerns in the background. I felt so lost. The big worries of a tiny starving four year old. In three months he would probably be dead, and no one cared…. This is when I said to myself, it’s do or die, literally. So I vowed that I would stay awake ever night as long as it took until I died to help my baby, because the “Dr” would do nothing, not even in an emergency such as this. We ended up going to the emergency room many times within that month. They did blood tests, stool tests, CAT scans…. tests I’ve never even heard of, and nothing. The ER where the only people at this point who put any effort into helping us at all. Thank god the “Dr’ there opened his eyes to see my son was in a horrible state. He said something is seriously wrong, and he thought he was having seizures, but couldn’t find anything. Finally after multiple several hour visits we still have nothing. They sent us home with a paper on seizures, and recommended we see our pediatrician, who we’d been seeing to no avail. So my son finally fell asleep, as he’d been doing every night since this started, he’d stay up until around 3:30am scared and rambling incoherently, nothing I could do would put him out of his misery and he couldn’t eat or sleep. He finally fell asleep in a starved exhaustion, I worried he wouldn’t wake up. So I kept checking him to see if he was still breathing, (which was another reason I didn’t sleep). This is when I’d get on the computer, god I was so tired! I stayed up all night, and the next day, it would be the same thing, again… and again…… I didn’t sleep at all for a solid month. I think I dozed off while sitting up at night a few times, but that was all I would get, thank god we survived. Finally on October 10, 2010, one day to the month this all began. I found the answer I was looking for…. I decided to literally take every worry off my notes I’d been taking on his behaviors, and enter a huge string of text into the Google search bar (thank-you Google). And it returned to me something called PANDAS. It was the ONLY thing I’d not heard or seen anything about. And immediately what struck me was it was the only sickness that carried a common worry about Peeing. The more I read the more it matched, I felt a ray of hope, I finally felt in my heart this might be it! I was up before the roosters because I wasn’t sleeping anyway, and I felt a light in my heart, but I was scared at the same time, because if this wasn’t it, where was I going to look next. I felt my time was running out, and a feeding tube was going to be the next step, and if he had to see blood or a needle, or be alone at this point it would have killed him. I was SO scared for him. I called his pediatrician who was reluctant to see me at this point, but they let me in that day. I know she felt I was grasping at straws, but I was past the point of caring about embarrassment. This is my baby, and if I didn’t save him, it appeared as if no one would, or sure someone would, but in three months….if he was still alive. Which in my heart I know he wouldn’t have made it. So I asked he if she’d heard of PANDAS, and she said no, so I handed her the papers I downloaded off the Internet. She left and said she’d be back in a few minutes, guess she was going to read them. She came back with a Strep Test kit, and said “We’re going to test him for strep.” Remember this is one month later… She did the test, and left again. Less than five minutes later she came back and said, “The test was high positive.” But added that he could be a carrier. She gave him antibiotics, and by the third day he was able to walk out of the house, and by the forth day, he got into his dads truck and went for a short trip with him again. It was a personal test for us because he wouldn’t leave the house prior, without allot of crying. I’ve never in our 18 years of being together seen his dad cry, he tried to hide it but we looked at each other, and tears where just streaming down his face, he tried to hold our baby over his shoulder so he couldn’t see him. And my son looked over dads shoulder and said it his tiny voice, “Mommy, can we bring a snack?” I literally jumped into the air, with both fists up!!!! I saw dads knees buckle as though he was going to drop on the ground, and I heard him audibly crying, as quietly as he could. So he backed down the sidewalk toward me, and I handed out my son a small bag of Lays chips. Which his dad later told me he ate like he was starving; which is because he was. I made him his old favorite Steak and baked potatoes for dinner that night, and he ate so well we just kept looking at each other as if we couldn’t believe it. Anyway, that’s just some of what happened for us, there is so much more that to put it all into words would take a book. Which is why I make the audios for you tube. Yes I understand my information is not coming from a “Dr’, and what I say is not backed by a degree. However what I say is back by something a little more personal, “experience”, and actual love for the children who are forced to go through this horrible time in their lives, and need competent adults to save them. This is the only childhood they’re going to get. This isn’t a game, and time is crucial. Doctors do want to help, when it suits them, and the money is enough. But from my experience, waiting for someone to help because they actually care about your child, may not happen, or if it does it may be too late. And some people have NO MONEY, You know if someone really wants to help you, when they do it for nothing but your happiness. Ask your “Dr” if he or she will help for no charge. That should tell you if they really care about your baby. And yes I do understand that they need money too, but have a care… So yes, my videos may not be perfect, the wording isn’t always going to be correct, but my doctor’s degree comes from the Mommy school of love. So I put these videos up for those out there in need with no place to go, for those who may not receive any help or direction otherwise. Or who may just be searching, and perhaps find those videos as a light in the dark. Something to guide them to help; however they can find it. My advice my not be perfect, but Mommies school of PANDAS couldn’t have been too bad, because I now have an almost 6 year old son, who walked proudly into Kindergarten Career day today as a Scientist; and as he crumpled up his juice box and threw it into the trash with a smile on his face, he looked at me and said, “Remember when I couldn’t do that mom?” I debated taking down the videos or perhaps re-title them, but truthfully, a desperate mother is not dumb, and I’m not interested in babying people, as is the rest of the world has come to do. Information needs to be out there, mine worked for me, yours may work differently for you, but I’d like to have the option to pick and choose from ideas, things to try or dismiss. I personally do not want to be limited to a Doctors perspective only. If I’d wholeheartedly listened to the Doctors without question my son would currently be enrolled in a Psych ward, with daily medication. In my experience, a doctor DID NOT save us, or even help us. And none of these Doctors have the experience of living with a PANDAS child, or get to see what a full-blown break down is like. They know only what has been presented to them via us mothers and fathers. They know the results because we are their test subjects, and we are the answer producers. Doctor: How did he behave when I gave him this? Mother: He did better. Doctor: Try this and get back to me. Look at the big picture, it’s pro-active moms and dads who detect the problems and most of the time, resolve the problems as well. The doctors just prove or dis-prove what is presented to them, and then re-administer these ideas with a medicated cherry on top back to other mothers and fathers. So as I do understand your reason for wanting me to take down or re-title the videos, I personally believe that all information should be presented from all sides, including but not limited to, a babbling mother who may not be perfect, but probably cares more than any doctor, as my sympathy comes from having first hand experienced in suffering, and finding a solution that actually worked for ‘us’. How many people can say that? I pray all of you find a solution for your children. I wasn’t trying to turn people from Doctors, I just want to present my personal experience, and let people choose for themselves. Some of the wisest advice I’ve ever received came form real regular people, not a doctor. My son recently had a cold with a terrible cough, our doctor recommended, Tylenol cough for kids. It has about three different ingredients. He and I both took it. The next day I felt really jittery, my son said he felt “weird”. And it didn’t stop either of us from coughing the night before. My mom said, try honey. We both took 1 tbs honey before bed. He coughed, for about 15 minutes, and then nothing the rest of the night. And felt much better the next day. So it made me think, should we silence people’s ideas just because they have no degree? I am however going to stress on my videos that this is a 'personal' experience, and I will place a link to the Doctors’ videos in which you recommended. As I want help for the children, from any source they can receive it. And the sooner, the better the outcome. And of course I don’t take offence so don’t worry. Nothing could offend me after what we’ve been through…. I’m happy to have my son back, and he lived…. Thank God….
  7. Hello WorriedDadNMom, I made the following audio response for you. I'm limited on time and I speak faster than I type, lol. I hope your DD gets well soon, I'm so worried about our kids.... http://www.youtube.com/watch?v=wDDVSkO5Qek
  8. Yes, however the best antibiotic so far for us has been Penicillin VK.
  9. Maybe laundry soap related. Try using free clear. Big lots sells an off brand for only $6.00, compared to $14.00 for other brands, and it works great! Scented laundry soap can cause coughing as well, not sure if you've had any problems with coughing yet but just so you know....
  10. This helped for my son; maybe it will help for yours. Your children think of you as the boss, period. In the end they know deep down that you are the all-mighty-power and you can control them. So after my son had bad dreams and before I knew the cause was something called PANDAS, I told him one night as seriously as I could, “I’m the boss of you and you’re not allowed to have any more bad dreams”. I would say it as if I was talking to his brain directly, and not him, since I didn’t want him to feel he was causing the problem, but more place the bossing toward the brain. “Do you hear me brain? NO MORE BAD DREAMS….. My son loved it (as much as one could in his state of being). Every night before bed he’d ask me to tell him “no more bad dreams”. And it helped for a while. It’s worth a try for those of you who can’t get your child to sleep because they are afraid. Also trinkets help too, like dream catchers and magic rocks under the pillow, etc…. Sleep with them, who cares if someone else says you shouldn’t, you’re the parent, you know what’s best for your child. Reassure them ALLOT. Tell them you won’t leave all night, and will still be beside them in the morning. Upon hearing this my son would fall asleep within minutes. Do what ever you can think of, but make them feel secure, it’s SO important.
  11. If you haven't already, check out this link, it's on the front page of this site. It's about sugar and PANDAS, not everyone has a negative reaction with their childs PANDAS and sugar, but it's worth a listen. http://www.latitudes.org/forums/index.php?showtopic=15236
  12. Thanks for listening to the video/audio. I know I probably came off as absolute in the video, however I’d like to mention, that that is just ‘our’ experience. Each child suffers differently so what is my experience and what works for us, may not work for the next child. But it seemed relevant enough to make a video. Even if it helps just one person I’m happy. However if we could help them all, wouldn’t that be wonderful!! PANDAS is such a horrible burden for the little ones to bare. I hope now that light is being shed on this illness, something good comes of it.
  13. I think we need to start a PANDAS support for the kids. I see many children are old enough to use a computer and my son who is only 5 found comfort in knowing he was not alone in his worries, it helped by at least half if not more. Had he the ability to talk to someone face to face or virtually in his own age group who was having the same problems, it would have help him by leaps and bounds I’m sure. So I’m wondering if it might be a good idea to start a support group for the kids. Maybe a youtube account that caters to them conversing back and forth with others like them, and gives them the opportunity to help and be helped by peers in the same boat. The account would have to be password enabled or something of the sort of course. But we have to plant a seed somewhere. What are your ideas? We seem to find comfort in one another; they should be given the same opportunity since it is they who suffer the most.
  14. PANDAS kids are sensitive to sugar. Please listen to this video. http://www.youtube.com/watch?v=Pm_NcC_9C70
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