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School is out of the question for my ds16 right now. Can you chime in and let me know if your child is in or out, particularly if it's a middle school or older child.

 

If out, how aggressive did you need to be with the school to arrange homebound services?

 

How do you handle schools, docs, family and casual onlookers who think you've just got a rotten kid or are chasing a quick fix regardless of the amount of research effort you've expended?

 

Hearing how others handle it will help me to maintain my foothold and stability.

 

Many thanks,

Gat's mom.

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School is out of the question for my ds16 right now. Can you chime in and let me know if your child is in or out, particularly if it's a middle school or older child.

 

If out, how aggressive did you need to be with the school to arrange homebound services?

 

How do you handle schools, docs, family and casual onlookers who think you've just got a rotten kid or are chasing a quick fix regardless of the amount of research effort you've expended?

 

Hearing how others handle it will help me to maintain my foothold and stability.

 

Many thanks,

Gat's mom.

 

 

My son (now 14) was out of school for about 3 months in the 6th grade due to exacerbation. He developed panic attacks and school phobia. Initially, our therapist met with the school to explain things to them and try a "baby steps" approach - one hour, two hours etc. Because it was coming from a psychologist, not "just" his mom, they accepted her plan. It didn't work. It made things worse. Our psychiatrist strongly suggested we give up this approach and go homebound for a while. He wrote a letter or "script" for homebound, I turned it into the prinicipal and the ball was set in motion. Thing is, they have 30 days to arrange the homebound service...It took 3 weeks to find someone. My son decided that rather than have the teacher come to the home, he wanted to meet with the teacher after school hours for his tutoring, so we set it up that way. They provided only 3 hours a week!!!!!!!! It lasted 2 weeks and then my son was re-hospitalized.

 

Following hospitalization, we got an IEP and a new therapist. This time, the therapist took more of a flooding approach, where my son was to stay in school all day,but could take as many breaks as he needed to call the therapist, call home, see the school counselor etc. His goal on the IEP was simply to BE there. None of the work really mattered. Some days he spent all day in the counselors office. But it worked! The idea was to continually re-expose himself to his fear. We also had a reward system at the time, where he earned points for every hour he was in class, and earned a TV set for his room. He was only 12 at the time.

 

Does your son have an IEP or 504 plan? We would not have survived this latest exacerbation in 8th grade without it. I am very communicative with all his teachers, call or email them when I think homework or tests need to be thrown out, reduced etc. I have to stay on top of all the details as if I was going to 8th grade myself. My son can no longer read a novel, and so I have to read them to him when they are assigned. Some times I have to write out his homework for him while he dictates, when he just isn't coping. And our school counselor is completely understanding and the only person who gets him to school when he starts doing the school refusal thing again. Without this IEP and my close management of all things school related, I am sure he would be back to homebound again. My family is fairly supportive as we have been discussing PANDAS for years, although like you , I am only now again getting aggressive about it. Mind you, none of them actually have offered to give my husband or I a break....Casual onlookers I managed to stop giving a hoot about a long time ago, because if they walked even one day in my (in any of our) shoes, they would run and never look back. I simply no longer care. Its the local doctors I have the hardest time with, to be honest. Our therapist and psych are pretty supportive, but the others (pediatrician, immunologist etc) are skeptical.. I know my peds office thinks I am trolling for antibiotics and I'm sure there's something in my son's chart by now indicating I'm a difficult parent. I used to care, or let myself be swayed by their skepticism. Really, reading Beth Maloney's book, and her experiences with unhelpful docs, inspired me to trust my gut and keep fighting for the answer. It has been VERY draining dealing with the doctors and my son's meltdowns/rages and other behaviors and many days I feel like I'm ready to give up. But then he lays on the floor sobbing for me to help him, and that no one is helping him get better, and that he wants to die because this keeps happening. So I pick myself up to let him know I have not stopped searching for answers. Foot hold and stability are a tough thing to find....

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Wornoutmom, I have a question about schooling. My DD is only 4 and the thought of real school scares me to death. When your son was in and out of the classroom to take breaks and call his therapist, what did that do to his image in school? I can only imagine the other kids weren't always too great about that. Or was your son truly not able to care? I can imagine the kids in my grade school and high school having a hey day at your child's expense. This is the exact scenario that I am terrified about and think I don't want DD to go to a mainstream school because of it. But if she doesn't, then I have to deal with her all day... I'm sort of just thinking out loud here. I am probably in la la land...

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My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

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Fallingapart - my son went from a boy who never would have cried in front of his classmates (unless maybe he was hurt and blood was involved) to crying through days at a time non stop when his first bout of seperation anxiety hit with a strep infection this year. Dr told me we couldn't give in to the fear and that he had to go to school even if he ended up sitting in the nurses office all day. His classmates of course were curious and asked questions and the teacher explained to the class that my son was "really sad" and that he probably would be for a few days and that everyone just needed to give him a little extra attention. Nobody teased him or bullied him and he is still one of the most popular kids in his class. I don't think kids get really mean for the most part until middle school years.

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Mine are in school, but they are little (3 and 6).

 

Around here (geographically) anyway, you see plenty of kids going in and out of homeschooling. At least in our district, there are clear options for stints of homeschooling while still maintaining connection with the school district. The district website even has a whole section on it and the logistics are pretty simple. We had friends who did this in NY, too. It is not too uncommon with illnesses, or e.g. families in the entertainment industry that travel a lot (also see a lot of that in LA/NY). I think it will depend a lot on how cooperative your school is, but I do believe that they are required to make some kind of effort.

 

Re. onlookers, I have struggled with this sometimes. If one of my kids has a breakdown somewhere or sasses uncharacteristically, and I explain to another parent or teacher that he is having a reaction to an infection, I do wonder if they think that I'm just a lousy parent looking for an excuse for my kid's "bad behavior" or that I'm trying to "medicalize" an emotional/psychological issue and overmedicate my child rather than deal with it. I have had some good responses, though. Ds6's teachers have all been great, as have his friends' parents. Truth is, I think that it helps spread the word about the condition, which is something that we need. I explained it to his kindergarten teacher last year, and she was very grateful because she had noticed, during the one episode he had in K, that he very suddenly became a dramatically different child. She said that normally they would start questioning re. an evaluation/investigation of some sort in such a circumstance because they assume that something traumatic happened in the kid's life to elicit such a pronounced, sudden change. But then, 2 weeks later, "the lights came back on" as she put it, and he was back to being normal. It helped her a lot to understand the situation so that she was able to support him during it.

 

His karate teacher, on the other hand, sees it as a discipline issue, and that sucks. But what can you do? There will always be the unenlightened. You can't really blame them. As a society, we are not very good at thinking about behavior medically - we are too stuck with Freud. Nevertheless, the unenlightened are just wrong in these cases. I stand my ground and don't negotiate with them on the explanations for the behaviors. I do explain the facts if it seems called for, since I'm 100% confident in the facts and my feeling is that the only way to get rid of the stigmas and misunderstandings is to get the information out there. That's also why I'm very plain about having the condition myself. If we don't want it to be shameful, then we can't be ashamed of it. I want my kids to see that I'm not ashamed of it. I also think it helps my ds's self-esteem when they see me just rationally dealing with this as a condition, not a weakness. We speak of it as "allergies" to "certain kinds of germs." My kids also get dermatologic manifestations and drippy noses when it happens, so it really does look like a classic allergy. People -- even little kids -- understand allergies, since so many have them, and they are not seen as weaknesses. Luckily for us the behavioral issues have been relatively mild and infrequent since diagnosis so we haven't had to make decisions about e.g. quitting karate.

 

Re. explanations about being out of school: he has a stubborn infection that his immune system isn't dealing with properly, and he's having a bad reaction to it. Period. If anyone chooses to believe otherwise, well, at least you have tried to educate them, and your son has seen that you aren't skirting around the explanation as if it's shameful, and you aren't deep down questioning whether it may actually be a weakness on his part. Sooner or later I do believe that this kind of thing will become part of public knowledge.

 

Rambling reply! Another emotional area for me.

 

 

School is out of the question for my ds16 right now. Can you chime in and let me know if your child is in or out, particularly if it's a middle school or older child.

 

If out, how aggressive did you need to be with the school to arrange homebound services?

 

How do you handle schools, docs, family and casual onlookers who think you've just got a rotten kid or are chasing a quick fix regardless of the amount of research effort you've expended?

 

Hearing how others handle it will help me to maintain my foothold and stability.

 

Many thanks,

Gat's mom.

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Wornoutmom, I have a question about schooling. My DD is only 4 and the thought of real school scares me to death. When your son was in and out of the classroom to take breaks and call his therapist, what did that do to his image in school? I can only imagine the other kids weren't always too great about that. Or was your son truly not able to care? I can imagine the kids in my grade school and high school having a hey day at your child's expense. This is the exact scenario that I am terrified about and think I don't want DD to go to a mainstream school because of it. But if she doesn't, then I have to deal with her all day... I'm sort of just thinking out loud here. I am probably in la la land...

 

 

At the time we worried about the stigma as well. But he was so overwhelmed and so anxious at that point that he truly didn't care. He was very nervous on his return to school about what to say re: his long absences and his attempts to return. The school counselor told him it was no one's business at all, and we suggested he say he had been very sick, got better, but sick again, and now he was back. What happened to him socially, is that the other kids had moved on in his abscense. No one really gave him a hard time, just ignored him. He became a bit invisible. He made some of that up in 7th grade when he was healthier, but still struggles socially. He has no close friends at school. He says people pick on him or don't like him, but I think it's 85% his own perception. He is, after all, in Jr.High, where the social pressure is enormous for ALL kids at that age. It is easier to mask in Jr High because they all switch classes, so no one knows much except he's not there that day. Or he's gone to the bathroom.. When he had his first episode in kindergarten, a few of the kids asked me what was wrong with him, why was I in the class with him, why didn't he want to play with them anymore. All I know, is homework is hard enough, I would never survive home schooling!

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Fallingapart- I wouldn't worry so much about school. I agree, that kids aren't mean untill around 4th grade and up. For my dd Julia, she could hold it together at school pretty well. She missed a lot of school, and does show some anxiety at school. This has actually endeared her to the other kids, and they all LOVE her and watch out for her. It is very special to see. She is in first grade, it was like this last year also.

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My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

 

Familyof4 - Our ds10 is covered under a 504 plan. I know that every school and administration is different, but it was pretty easy for us. I went in before school started in August and told them about that he was diagnosed over the summer with PANDAS and was not recoved yet. They told me about the 504, they completed the form for me and I signed. I did however have to provide a letter from our ped with the diagnosis. I guess if a family doesn't have a dr that will give them a diagnosis that would be a road block. However, he was only in school for several weeks and we realized that he wasn't able to attend and we decided to homeschool for the first semester. He did return to school last week for the second semester. We are still under the 504 Plan. Until we tell the school otherwise, he will always be under the 504 Plan.

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My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

 

Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh.....

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My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

 

Familyof4 - Our ds10 is covered under a 504 plan. I know that every school and administration is different, but it was pretty easy for us. I went in before school started in August and told them about that he was diagnosed over the summer with PANDAS and was not recoved yet. They told me about the 504, they completed the form for me and I signed. I did however have to provide a letter from our ped with the diagnosis. I guess if a family doesn't have a dr that will give them a diagnosis that would be a road block. However, he was only in school for several weeks and we realized that he wasn't able to attend and we decided to homeschool for the first semester. He did return to school last week for the second semester. We are still under the 504 Plan. Until we tell the school otherwise, he will always be under the 504 Plan.

 

Do you have a copy of your 504 plan that you would be willing to share? My school doesn't feel it is necessary until middle school but I disagree. I don't think I would have a problem getting a letter from a doctor. Did the letter from the doctor go into any detail or just confirm the diagnosis?

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I'm sure I'm "hypervigilant," too. So be it. I wish someone had been hypervigilant on my behalf as a kid. I know families with kids that clearly have these issues and that aren't hypervigilant, and their kids get smacked upside the head at the dinner table for refusing to eat.

 

 

My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

 

Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh.....

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My son is only 6. His big PANDAS excaerbations occurred last year while in preschool at age 5. I realize how "lucky" i was that he was only in preschool and wasn't a big deal if he missed school. There were days he just couldn't go. I know you guys know what I mean. We did always try to make it to school and actually,for him, he seemed to do better in the class environment. he wouldn't really participate but he was calm. He only had one big meltdown at the preschool. It was bad, but compared to what we experienced at home, one is good.

 

My son is in kindergarten now. He is doing better. He goes there fine and comes home happy. I make it known at the school that he has PANDAS and I am trying to get PANDAS more known throughout the district.

 

My son has an IEP for speech and PANDAS is cited in health history along with an explanation. He does not have it cited as "OHI" for reasons that aggravate me.

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I agree with Vickie. I'm not concerned about DD's perception at this point. But, if this is still happening in jr high/high school, I will be really concerned for how the other kids will treat her. I'm glad to hear that you are saying it isn't horrible.

 

As for the hypervigilant, I wonder what word they use for me in our chart!!!

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My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

 

I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

 

I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

 

Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh.....

 

 

We have a 504 for my son, have since the 6th grade flare. We, too, are under "otherwise health impaired". We have a mtg set for 1/21 to make changes to the 504 to accommodate what's going on right now if we can get him in the building. I've begun the first steps of obtaining homebound services again. Last time this was a massive stumbling block. I'm more educated now, though, and feel pretty confident I will get the services he needs. Regarding the term "hypervigilent mom"...thank God we are. After 23 years of full time parenting, I'm ready to retire more than I can say but much like wornoutmom when he's sobbing, his life a fraction of what it was just a few weeks before, saying he'd rather be dead than live like this the rest of his life I know that giving up is simply not an option. I am thankful everyday for the intelligence and tenacity the push me forward. He deserves nothing less than a parent who is dedicated to finding the answer that I KNOW is out there.

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