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Everything posted by thereishope

  1. If your ped can get her in for an appointment the same day, I'd probably call them first. If they can't get her in, take her to urgent care. Contact the neurologist when you find out the results.
  2. I did what it seems like others did as well. When he was out of control, I would tackle him to the floor, wrap my legs around his, and bear hig him I would sing in a soft voice while rocking back and forth, reassuring him that I loved him. But he would also punch me on me, kick, spit, etc. He acted possesed.I would also tell him that no matter what he did that I would always love him. If he was just mad and saying awful things without the hitting, I would follow him around until he calmed down, especially if he was threatening to jump out of the window. He's 5 and I knew in my heart he wouldn't hurt himself, but I also needed to be responsible and make sure. If the threats of hurting themself or hurting you (mine would say he wanted me to go to heaven), I would just be very honest with him. "You don't know what heaven is like" or "once you're dead, you can't come back if you don't like it". I know those are harsh words for a 5 year old, but a good deal of the time it worked. It got him to stop. After awhile when he would say he wanted me dead, I would ask him if he meant it and he'd say "no". Let me add that those behaviors did eventually go away.
  3. When my son was very bad off he received a 5 days worth of oral prednisone (steroid) from his neurologist. He took it at noon every day. On day 4 (after 3 doses had been taken) I saw a big improvement. I'm not saying he was back to normal, but it was like it gave his improvement a jump start. He also did not worsen over those days either.
  4. I have not, but my son is extremely picky too. He use to be more open to stuff until the whole PANDAS thing surfaced. How old is she? My son is 5. I thought I saw a new juicy juice on the market too. I think it would be by the pediasure. I haven't looked at it yet, but it's wort walking down the aisle to see what it's about.
  5. Keep in mind before buying that rapids can come back negative even when someone has strep. That was the case for my son and my husband.The rapids were neg, but the cultures came back positive. And they did not have the classic strep symptoms. Have you had her tonsils taken out to try to prevent it? As for other areas, I'm not sure. Did you rule out that she's not wiping herself good enough? Regardless of age, perhaps try diaper cream or an antibiotic cream for a few days.
  6. Another bit of info about IEP's. According to my son's slp and special ed itinerant teacher is it's easier to qualify for services when your child is still young enough for Early Childhood. That is, I believe, from age 3-6. After that, once they are in kindergarten, it becomes harder to qualify. The disability must affect the education and learning at that point to an extreme. My 8 year old has speech problems, but won't evene get evaluated because they deem he is still learning up to speed. Frustrating sicne it does affect his spelling. But I cannot get him therapy on my own since my insurance will not cover any, even if I meet my deductible.Whereas, my 5 year old (the one w/PANDAS) even got an eval for sensory even though I didn't even think it was an issue, but the slp wanted to rule it out. They rushed that one to be done since this is the last year he qualifies for Ealry Childhood. Long story, if your child is under 6, get any evaluation you think your child would benefit from now before the are in kindergarten. Don't wait and remember it is a very long process that takes months so allow time for it.
  7. My son has an IEP and PANDAS is mentioned in it. I have a feeling that right now one may only be able to get PANDAS acknowledged on an IEP (as medical background) if the child qualifies for some service. Even if your child has sensory problems,symptoms of OCD, ADD, etc they might qualify for help. My son was already getting speech services from the district and the slp and special ed teacher noticed the change in him and have very patient and helpful with it. From now on, he has it in writing that the teachers are suppose to be aware of PANDAS. You might want to contact the district heads directly and skip the teacher. They will ask for her input but also explain your problems with her. They are the ones who make the ultimate decision, not the teacher. You also need to put a formal complaint in about her.
  8. That's something I should add after reading Caryn's link. My son never had tics, only behavior changes. So that may be the reason he's not having negative affects from Claritin? Thanks for that link, Caryn!
  9. I've been giving my son Claritin for allergies for over a week now and he's doing well. I also starting giving it to him when he was having a setback in recovery and his behavior was awful. Connection or coincidence? Who knows at this point, but I am thankful for it:)
  10. I sent an email the other day. If no response is given to anyone, one last try is to priority mail a typed letter to Oprah studios. Have a signature by staff be required. Also, the person in charge of writing the letter can post the letter and and do an electronic petition. Give contact info for each person who "signs" it. If you want, each person signing it can give their brief personal story since everyone's experiences have similarities, but also differences. That's one thing the show will look for. The opportunity for more guests and more discussion.Print it off and include it in the written letter. It's tedious process, but at least it's something to do if you feel you're hitting a dead end with Oprah. I did not notice if there was a time frame for response listed anywhere n the website. I would think it could take months. Not really sure.
  11. My son NEVER had symptoms of strep. We bring him to the dr because of the behavior changes. My dr will do a strep if we ask., regardless of what his throat looks like. It's standard procedure at my peds office to run cultures on neg strep tests. Once, my son's rapid came back neg but the culture was positive. Same with my husband. The two other times, the rapids did come back positive. He's had it 3 times. I would have never suspected the strep if his behavior didn't change. My son has separation anxiety from me, not my husband. So far, all I have ever dealt with was me pediatrician and pediatric neurologist. The neurologist was the one who officially diagnosed him with PANDAS. A lot of Children's Hospitals have websites where you can read the bios of the doctors to try to find a decent match. That's how I found out ours was in PANDAS studies. There are a variety of symptoms with PANDAS. My son never had tics. He had OCD (this time only slight), oppositon to authority, and other things. Many other people would not pick upon his OCD. Even at 5 years old, he's learn to lie and hide it. But I know him and I can see when he's thinking it. Like I can tell he's counting to a certain number in his head but not out loud so I don't say anything.
  12. http://theprojectcharity.org/about/about.php I stumbled on this charity a few months ago. It's called The Project Charity.I contacted them and asked whether they had a database where I could contact otehr families dealing with PANDAS. They said that they are a new charity and that is one of their goals...to create a database where you can network with others. I believe they had not heard of PANDAS before I contacted them. If have a moment, I would suggest visiting their website, telling them your story, and giving them your name. They want to help children with rare diseases by connecting parents with appropriate doctors, giving finanacial support to research, etc. Here's a brief overview of what they say on their website... http://theprojectcharity.org/about/about.php MISSION STATEMENT To impact the lives of children with rare disease, their families and the organizations that support them by building greater awareness related to the prevalence of rare diseases and by becoming a catalyst for funding their critical efforts. THE PROBLEM A rare disease by definition afflicts less than 200,000 people. This can make it difficult to find a diagnosis and treatment. It can also create substantial financial burdens for families. Charities and researchers seeking funding often find it difficult to garner the attention and the resources they need because the diseases they focus on may affect so few people. The reality though, is that there is nothing rare about rare diseases. While individually they affect few people, there are more than 6,000 rare diseases affecting over 25 million children and their families nationwide. THE SOLUTION The Project is creating an online community where children with rare diseases, their families, and the organizations that support them will have the opportunity to communicate, collaborate, become educated and tap existing resources, helping them with their daily challenges - introducing The Children’s Rare Disease Network. Children and their families need information, resources and a coherent voice to speak to issues common to children who suffer from a rare disease. The Network will seek to work collaboratively with other organizations and raise the profile of the problems faced by people with rare diseases so that more funding can be directed into this area of great need. The Network will work with skilled journalists to build and establish a central website with focused content about research, policy and other developments around rare disease initiatives for individuals and the organizations that support them. The Network will serve as an online home for people with rare diseases that will bring together families, organizations, physicians and researchers to exchange information and to help each other. The Project will raise awareness about the prevalence of rare diseases, by providing a platform that will allow these people to share common problems, provide access to relevant information, and create introductions to those who can help.
  13. My son twice said he saw bugs and they were on him. He would hit himself to get them off.
  14. Thanks for the info. We already ruled out strep carriers in the family. We also go for follow up strep tests days after being off antibiotics to make sure the strep is gone. I am wondering whether there is a carrier in his class. He never had strep until he started preschool this year. When we suspect strep, we wait until he has 2-3 days of questionable behavior, as recommended to us by his neurologist. The pediatrician told us it can take 3-5 days from when you contract strep to get the + result. So I guess the question is, how long after contracting strep does it take for the damage to be done and the behaviors to change. Right now, we are being very lucky and he seems to be improving. Whether it's because he's been on Claritin for 5 days now... who knows. I hope this improvement continues and I think I will just have to map out his progress. I am also monitoring his diet and see what he ate days prior if he has another setback. As for any connection to allergies and behavior, I may have to wait until he's taken off the Claritin or until allergy season next year to find out. Also, because he is improving, I have a feeling the neg strep test was correct. I don't think we'd see any improvement without treating strep if he did in fact have it. I am just tired of living in fear of strep and illness!
  15. My son is the same about school. Once he gets there and we leave, he's fine. Getting him there is the struggle. I have to wake him up at 6:30am to have him ready to leave the house at 8:45am. Do they just say there's no need for evaluations since it doesn't affect his school work? That's what they tell me about my older son who has a speech delay. They won't even evaluate him. Have you gotten specfic and, in writing, asked for a sensory profile (for any OCD) and an eval from the school pyschologist? The Early Childhood people told me it's easier to get your foot in the door before they are in kindergarten. So that may be why I am being "lucky" with my son's IEP.Once they are enrolled in elementary, you "play by different rules" and it's hard to get what you need.
  16. Saying your child is spoiled, time outs, or good behavior charts would not work my son. If they tell me that, I don't think I could keep a straight face. On my own, I've tried, the "hit the pillow when your mad" approach, that never worked. I tried lists of what he needs to do. Telling him he could choose the order, but he must complete all of it. All he would do is add things to the list like watch tv and play. After calling 13 psychologists in my area, I found a masters level clinician that says she has seen 2 PANDAS patients. I get paranoid that some may fib to get a patient, but I must trust she is telling me the truth. My conversation with her was better than the psychologists who laughed and poked fun at the situation. I was left speechless on those phone calls. I am worried that one psychologist told me that CBT wouldn't really work with a 5 year old. I am going to be very curious what they end up suggesting to me. Even those his meltdowns have stopped (for now), he still has OCD, the NEED to be in control, and the need for routine. He also has such a disgust of his two year old sister. If his routine is broken and he has not "okayed" it, we run into problems. But, like I said, he has been meltdown free for about 4 or 5 days now. That is promising. I am also nervous because my son has a speech disorder and is difficult to understand. She doesn't want me in the room with them. What if she can't understand him? Let's add to my stress. One thing I find interesting is that I have not heard many others refer to rage. My son's rage was horrible the second time. He would just punch me, choke him, tell me to go to heaven. Luckily, the rage was never really put towads my other children. I remember the saddest day was when I had to hide the knives because I just couldn't take a chance. I knew in my heart he wouldn't do anything, but I couldn't chance it either. In that time, I began to be very honest with my son, even though he was only five. If you do this, I can die. You can die.I don't know what it is like to die. At times if I threatened to bring him to the police station and so they can tell him what happens to people who act like that Sometimes, he would calm down. During some rages, I would tackle him, hold his arms down, and hug him rock him and sing. Amazingly, he would calm down in time. How old is your son? Does he have an IEP for this and do you get support through your school system? Since my son has a bad speech disorder, he gets speech therapy through the school district. Once PANDAS arose, they were very kind. PANDAS is now reflected in his IEP and they now know to keep a close eye on him that once he starts kindergarten. I have some comfort in that.
  17. I live in Cincinnati, thus Dr Gilbert.My last email to him was him saying to have my son see a psychiatrist and psychologist since he had a setback coinciding w/ a neg strep test. But it was only a month after a pos strep test,PANDAS resurfacing and allergies starting. I know those behavior changes were related to PANDAS, but Dr Gilbert isn't convinced.I'm thinking Dr Gilbert may think my son is having residual symtoms because he had strep/PANDAS so many times in such a short period. Since I last spoke to him, my son is already doing dramatically better w/o any outside help,but I am playing by the rules and following through on these appointments. I am going to see a therapist tomorrow to give background and I have a psych consut on 6/8 w/ a Dr Harris. She's worked w/ Dr Gilbert before. I also need to make an appointment w/Dr Gilbert and speak to him in person. I am trying hard to stay local because of my two other kids. Like many others, I am just tired of phone call after phone call and email after email explaining our "situation".But it must be done. I am so happy I have never made an appointment w/o interviewing people first. Some are jerks!
  18. I read that one Mom (Michele) referred to Dr Don Gilbert in a post. If you are reading this, is he your child's neurologist? I ask because he is my son's doctor. I appreciated all his help over the last few months, but I feel I must now branch out. He wouldn't back my request for preventative antibiotics even when my son had strep 3 times in 6 months. The last time was one month after having his tonsils out. Once he said no" to it, my ped automatically turned me down. I feel I am hitting a dead end. Have you had an luck finding anyone else in OH who has helped?
  19. 1. My son was symptoms free and back to regular behavior for 6 weeks until he caught strep again. Very devastating because of the long time it took for him to get back to normal. 2.Well, my neurologist told me it may or may not. There are dif strains of strep. My son, has had strep 3 times in 6 months. Each time, behavior changes due to PANDAS occurred. Interestingly, each time, his behavior changes varied. First time, heavy OCD, second time, rage with a sprinkling of OCD and food problems. This time, opposition, needing to be in control, and a sprinkling of OCD. Each time, we did see ADD come and go and a general change in him that is hard to explain.
  20. When my son was dealing with his second bout of strep and PANDAS, he did not eat for 3 or more days. I have no idea why. He wouldn't tell me. This was while he was still on antibiotics for a +strep test. My neurologist prescribed steroids for him and I believe after day 3 he started to show improvement. But I think he only did the steroids becasue of the timeline. With my son, he was 5. I sat him on my lap and spoon fed him. That's how bad it got. Sounds so sad, but I knew he needed the nourishment. At first , he refused and just sat there like a zombie. I touched the spoon to his mouth and after a few tries, HE ATE! I fed him applesauce and yogurt until he began feeding himself again. Then, when he began to eat, he refused warm food and any food that someone else tounched it needed to be single serving things. So, what I am saying is if he won't eat and won't tell you why, explore the possibilities. Now, my son is fine with all food. It just took time and a lot of patience.
  21. My neurologist was the one who told me to get any pets tested for strep. He's seen it before. Luckily, I have no pets.
  22. Hi. I'm new to this group.My 5 year old has had strep 3 times in 6 months. Every time,he had behavior changes due to PANDAS.The second time he was considered an extreme case.He actually never gets symptoms of strep. We bring him in for the test when his behavior changes. His last bout with strep was about a month ago. His behavior was getting better then all of a sudden it took huge leaps backwards. We took him for another strep test and this was the first time it came back neg. I am left wondering why this has happened. The only thing I can even think of mentioning is that I noticed my son's seasonal allergies kicking in. I know this correlaton is a long shot, but I must rule it out. Has anyone else ever noticed behaviors worsening while allergies are surfacing?
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