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Everything posted by thereishope

  1. My husband also received prednisone for his poison sumac and he got a 2 week course. he's on the last of it today. He's been having headaches for the last few days. I wondered if there's a connection. Since it's his last day, we're not even going to ask the dr. But if it's a child, that would be a totally different situation, esp for med history. My 5 yr old son received it for 5 days and had no negative reaction. But it was only for 5 days and it did help give him relief. As for Michele's point, my son's neurologist gave the steroid w/ no intention of IVIG. He gave it because my son's behaviors were worsening dramatically even after being an antibiotic for strep for many days. I was too distraught to ask at the time, but when I look back the steroid was given to either lower inflamation until the brain itself had a little more time to heal or maybe it was to suppress his immune system so antibodies would stop being produced, if they were still being produced at that time. Finally, from other discussions I've had w/ my son's neurologist, I don't think he'd ever give a steroid unless it was shortly after a strep infection.
  2. My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?
  3. I've had to appeal insurance companies before for non related things. It's hard. One time it worked, two times it did not. All I can say id be ready for a fight. Get names of everyone you talk to with dates and always ask to speak to a supervisor. Your doctor will have to be part of the process too. He can write the appropriate letter explaining how it was not preexisting and the benefits/necessity of the tests and IVIG. Maybe even email a non profit autoimmune organization and ask if they will assist you in the process. Try the American Autoimmune Realted Disease Association at www.aarda.org.
  4. I have a question. Even if you were to give your child a steroid burst solely on your own and saw good results, then what? Would you walk into a doctor's office and tell them you did that? You can't lie and said a dr prescribed it for you. They'll ask for the name and contact info. They can report you to child services.
  5. I can't help with the med question, but the fear of bugs may be related to OCD. It's common for a child to be "exposed" to something then run with it. OCD is very manipulative. I broke my toe a few weeks ago and since then my son is convinced and worried that he's broken a bone every time he trips, falls, gets hit, etc. If it's a bad fall, I will reassure him once his bone isn't broken. But only one time. If it's obvious he could have not broken a bone because he simply did a little trip. I tell him I'm not answering him. He only tripped. I agree, this is all so confusing. I feel I have to dissect everything he does or says. But you can't attack every issue at once either. That will overload them. Just follow you Mommy instinct. It will follow you in the right direction. Is she convinced bugs on her? That's not OCD, but my son had that twice during a PANDAS epsiode. That is a scary thing to experince as a parent. My son would stand there screaming, "There's bugs on me. Get them off!" And there wouln't be a bug in the room.
  6. Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it? One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again.
  7. Did she have a vaccine or any virus/bacterial infection shortly prior to her behavior changes? Even a month prior? A high amount of kids see improvement with a steroid. It bring the inflamation down on the basal ganglia.Did someone metion Ibruprofen. Sometimes you can see a slight improvement with that as well since it is a NSAID. When my son had a cold, his behaviors returned slightly, and Ibruprofen really helped. As for improving her anxiety, have you adjusted her diet? In terms of watching how much high fructose corn syrup is in her diet, limiting how much food dye is in her diet, etc? I ask because that may make her hyper and, in turn, if she doesn't sleep, that will obviously add to everything and make it worse. One more question about her sleeping, does she snore a lot? My one suggestion to you is to specifically related to the OCD. Really try not eliminate any if you can and work on it. That can become so ingrained in them that it ultimately can stay. My son also had sensory problems, separation anxiety, OCD, and ADHD surface w/ PANDAS.
  8. My son got overly hyper from Claritin. He did ok w/ dye free Benadryl. These kids have so much in common, but so different at the same time. Just a thought. Have you ruled out whether the dyes are making her hyper. There is a definite connection between food dye and ADHD and behavior problems. They often put dyes in meds.
  9. You said your daughter was last diagnosed with a strep infection in Jan. Did you see ANY improvement from the antibiotics? At least a plateau in symptoms? Meaning it didn't worsen over a sapn of weeks and months? Have you gotten a negative strep test at some point after the strepw as believed to be killed? As others will mention, you can always try a steroid and see if that helps improvement. It should bring down some inflammation. When my son was getting worse instead of better, he received a 5 day course of prednisone. It didn't solve all the problems, but by the end of the course of steroids, I saw him at least plataeu and being improvement. To be honest, I think the average in "getting your child back" (meaning your child is more themself than not themself) averages around 2-3 months, at least with a first episode. What are her symptoms/behavior changes?
  10. To You, My Sisters by Maureen K. Higgins - Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland " and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
  11. Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination. Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None. I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS. My son is also not on any psych meds and it is not being recommended at this time.
  12. First off, know you are not alone. I noticed my son's creativity decrease w/ PANDAS and even though his first episode w/ it was 9+ months ago, it's hasn't fully returned. He use to love playing w/ action figures (he's 5). He'd play w/ them for hours. When I ask him now why he doesn't play w/ any of them, he's says he's different now and doesn't want to. His imagination has improved dramatically. He is back to pretend playing. drawing, cracking jokes, etc. But the way that interest win his favorite toys went away is sad. My son was also considered an extreme case. His behavior problems went away the first 2 times and he, overall, got better the 3rd time, but not completely. The OCD stayed and we are working on that. His last + strep was in March 2009.From speaking to others, you can give Omega 3's, DHA, choline to improve OCD behaviors. If he has allergies, don't give Claritin, give Benadryl. Stay away from HFC and food coloring. I can't always do it, but I try my best. Others have experienced problems w/ vaccines as well. I know some have seen worsening of symptoms w/ them. My son has yet to recieve a vaccine since his PANDAS diagnosis. I do know 7 others (including my son) who have specifically had reactions to chicken pox vaccine.
  13. Kayanne, Our children sound similar. My 5 yr old son wouldn't eat either. It got to the point I ad to spoon feed him for a bit. That is one of the reasons he did the steroid. That and rages. Since PANDAS, he too won't often give yes or no answers. He can definitely make decisions a heck of a lot better now (I wouldn't even say decision making is a problem anymore), but he just won't admit to a decision to anyone. He says things are secrets, he doesnt know (even though he does) and "maybe yes, maybe no". My son also had issues w/ doing things like getting dressed, getting hsoes on, etc. It would take him 3 hours in the mroning to just eat, go bathroom, get dressed. Luckily, that problem has passed. There were times I actually had to go in the room and dress him myself when he was at his rock bottom. As for friends...well, for some reason he doesn't want to go outside to play that much anymore. He doesn't want his friend to come in because he's scared the boy will put his toys in his mouth (something the boy has done before). It's gotten to the point that when his "friend" knocks on the door, he only asks for the older brother and doesn't even request that my 5 yr old comes out. I am still working on this and hope it will stop over time.
  14. I remembered reading about it on this forum before. Here's the link to a previous discussion. http://www.latitudes.org/forums/index.php?...mp;hl=magnesium
  15. AARDA needs every autoimmune patient, family member, and friend to contact their U.S. Representative in support of H.R. 2084, also called the "Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009." This important legislation was introduced by Patrick J. Kennedy on April 23, 2009. Please go to our Advocacy Page for information on ways you can help. http://www.aarda.org/issue_display.php?ID=22
  16. No, someone else. She's very sweet and very bright. She's even at a point where she can poke fun at PANDAS. She has been strep free and free of PANDAS symptoms for about a year and a half now. She said she has a great life. I feel this would be very helpful for others. I see the forum being a place of optimism and support.
  17. When my son went on prednisone for 5 days, he did so because he was extreme. He had violent rages , not eating, and spiralling downward. After being on them for 3 days, it didn't stop the rages but it toned them down and stopped the spiralling down. We finally plateaued and began recovery. I don't even want to think what would have been like if he didn't go on them. However, let me add, that my son also had two other episodes of strep and PANDAS. Those times he did not get the steroid. He was not at that "point of no return" and was not considered extreme. So not every child , every time needs a steroid. Let me also add, my son controls his temper now, rarely hits, etc. even when he doe sget mad, on occassion. The rages did not stay with him.
  18. I came across this young lady on facebook who is interested in starting a group for People with PANDAS. She is 19 years old, has PANDAS, and is doing great now. I told her I would post on the forums I am in and see if anyone has an older child who would interested in joining such thing. Probably teens and young adults. She would love to touch base with others who have experienced it. She has yet to set up the group. I think she just wants to know if there would be others intersted before she does so.
  19. The gummy fish I saw didn't have a sugar coating, but I made the mistake of reading the label out loud in front of my 5 yr old and when I said fish oil, he wanted nothing to do w/ it. So, since an 8 yr old can read, hide whatever you buy:) Do you know what store the Barlean's is sold at?
  20. There's a gummie vitamin at Target w/ fish oils and Omega 3's. No artificial dyes either. Just don't let her see the bottle. They are shaped like fish, so if she questions it, tell her they're suppose to be like Swedish fish candy.
  21. My son is not on antibiotics for preventing strep. His neurologist, which has been in PANDAS studies and knows an infectiuos disease specialist who has been in on PANDAS studies, does not back it up. My son has had strep and PANDAS behavior changes 3 times. He was put on a preventative antibiotic between 2nd and 3rd cases of strep while we were waiting for his t and a surgery. A low dose amox.But once that surgery was performed, he was taken off. I worry every day that he is a sitting duck waiting for strep to strike. But I also see some positive that he still gets a 10 day course of amoxicillan to kill strep when he DOES have strep and it still works. I at least know there are so many stronger antibiotics out there he can take if a resistant strain ever develops. I have heard for at least one mom in a different group how strep breaks through her son's long term antibiotics sometimes. So, if your child is on antibiotics and the behaviors flare up big time, do still take them in for a test. If the opportunity ever came and a dr did offer to put my son on long term, I would probably do it at least in the winter when strep is more common. But I would still stay w/ just my good ole amoxicillan.
  22. I was also wondering about this (and where I'm going to come up w/ $200.00). It was phrased as a request for a donation, but I wonder if they'll still send results w/o the donation. Its also the 1st time I've ever heard of paying to be in a study. I've encountered unrelated studies where they make you pay to have the exams, labs, etc. If they are considering it a donation, ask for a reciept and claim it as a donation on taxes.
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