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School Refusal Hasn't Resolved


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DS12 had sudden severe onset of PANS 3 years ago while sick with pneumonia. After almost 2 years of Lyme/Bartonella/Babesia/Staph treatment, many of his symptoms have completely or mostly resolved. He had rages, severe separation anxiety, severe OCD, insomnia, bipolar-like mood swings, phobias, aversions, mild food restrictions, and other issues I (thankfully) cannot think of right now. He is not completely well yet, but in most ways we have our lives back and I am so grateful. However, the one problem that hasn't budged is school anxiety/refusal. He misses anywhere from 1/2 day to 3 days a week due to school refusal, with a typical week being 1-2 missed days. He is also frequently ill at times (a lot in the fall, but not as often in the spring this past year), which adds to his absences. Our school has been proactive and compassionate about working with us/him, but nothing we've tried has had lasting results. He's going into 6th grade and the principal has warned me that the pace is going to pick up and he will have 5 teachers now, so it will be very difficult for him to do well academically if he is missing a lot of school. I have tried to find an expert on school refusal in our area, with no success so far. We are in the SF Bay Area.

 

If anyone has dealt with this problem or has any suggestions, please let me know. I am desperate for help/solutions and school is now 6 1/2 weeks away. Maybe its time to try anxiety medication? So unsure what to do.

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Hi MomtoAlex,

Oh yeah, we have been, are still there. Can I PM you?

 

DS12 had sudden severe onset of PANS 3 years ago while sick with pneumonia. After almost 2 years of Lyme/Bartonella/Babesia/Staph treatment, many of his symptoms have completely or mostly resolved. He had rages, severe separation anxiety, severe OCD, insomnia, bipolar-like mood swings, phobias, aversions, mild food restrictions, and other issues I (thankfully) cannot think of right now. He is not completely well yet, but in most ways we have our lives back and I am so grateful. However, the one problem that hasn't budged is school anxiety/refusal. He misses anywhere from 1/2 day to 3 days a week due to school refusal, with a typical week being 1-2 missed days. He is also frequently ill at times (a lot in the fall, but not as often in the spring this past year), which adds to his absences. Our school has been proactive and compassionate about working with us/him, but nothing we've tried has had lasting results. He's going into 6th grade and the principal has warned me that the pace is going to pick up and he will have 5 teachers now, so it will be very difficult for him to do well academically if he is missing a lot of school. I have tried to find an expert on school refusal in our area, with no success so far. We are in the SF Bay Area.

 

If anyone has dealt with this problem or has any suggestions, please let me know. I am desperate for help/solutions and school is now 6 1/2 weeks away. Maybe its time to try anxiety medication? So unsure what to do.

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The first thing I wondered when reading your post was if you have checked for lingering viruses which is very common among lyme patients. It sounds like there could be more there yet to be treated.

 

My son's PANDA dr recommended biofeedback to get things working in the brain better. Have not done it yet but maybe others on the forum have.

 

Son will be trying to return to 9th grade this yr after being out for 2yrs. (tried for month last year but similar problems like your son).

 

19 months of treatment and not all the way there with treatment just yet so will see.

 

Best wishes, will be thinking of you.

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I have to wonder if there might have been some bullying going on at school? It is not uncommon, and he may not have reported it to you. My son also had school refusal/phobia at his worst, and we ended up having to put him in a private school. We tried to ease him back to the public school, but it just didn't work, because there actually was bullying going on that the school was not dealing with. It is quite possible, that something may have been happening, that the school may not have perceived as bullying (or may have considered it "normal" for the social skills of that age group,) but your son either perceived it as bullying or it might actually have been so.

 

That being said, we absolutely could not get our son back to the school, because every time he thinks of those kids (who would have moved on to the high school by now), he gets extremely anxious.

 

My son is at a private school that caters to children with severe anxiety. It's been a godsend, because otherwise, we would have had to homeschool him, and he needs the social interaction.

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Have you looked into a charter program? We have a couple here (San Diego area) that meet 2x a week with the rest of the work being completed at home. We found it best to homeschool 2 of ours and add supplemental classes as needed :-)

 

Good luck with whatever you choose,

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Yes, please do!

 

Hi MomtoAlex,

Oh yeah, we have been, are still there. Can I PM you?

 

DS12 had sudden severe onset of PANS 3 years ago while sick with pneumonia. After almost 2 years of Lyme/Bartonella/Babesia/Staph treatment, many of his symptoms have completely or mostly resolved. He had rages, severe separation anxiety, severe OCD, insomnia, bipolar-like mood swings, phobias, aversions, mild food restrictions, and other issues I (thankfully) cannot think of right now. He is not completely well yet, but in most ways we have our lives back and I am so grateful. However, the one problem that hasn't budged is school anxiety/refusal. He misses anywhere from 1/2 day to 3 days a week due to school refusal, with a typical week being 1-2 missed days. He is also frequently ill at times (a lot in the fall, but not as often in the spring this past year), which adds to his absences. Our school has been proactive and compassionate about working with us/him, but nothing we've tried has had lasting results. He's going into 6th grade and the principal has warned me that the pace is going to pick up and he will have 5 teachers now, so it will be very difficult for him to do well academically if he is missing a lot of school. I have tried to find an expert on school refusal in our area, with no success so far. We are in the SF Bay Area.

 

If anyone has dealt with this problem or has any suggestions, please let me know. I am desperate for help/solutions and school is now 6 1/2 weeks away. Maybe its time to try anxiety medication? So unsure what to do.

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No, we tested for viruses early on and nothing much came up. They have had him on IMNV from Beyond Balance for a long time, but no targeted protocol per se. I will ask at our appointment in a few weeks if we can recheck.

 

Good luck with 9th grade. I hope it works out for him. Aside from rages and severe OCD, I've found school refusal to be one of the hardest things to deal with. It is so public and many people just assume your kid is willful and manipulative. Thankfully our current school is on our side and doesn't see it that way.

 

As for the treatment length, I always remind myself that it took Sammy Maloney 4 years of medication, and by all indications, he just had strep. So 19 month, or 22 in our case, isn't that long.

 

The first thing I wondered when reading your post was if you have checked for lingering viruses which is very common among lyme patients. It sounds like there could be more there yet to be treated.

 

My son's PANDA dr recommended biofeedback to get things working in the brain better. Have not done it yet but maybe others on the forum have.

 

Son will be trying to return to 9th grade this yr after being out for 2yrs. (tried for month last year but similar problems like your son).

 

19 months of treatment and not all the way there with treatment just yet so will see.

 

Best wishes, will be thinking of you.

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No, I've never heard of such a thing. I applied to a charter school, but it was similar to public and met 5 days a week. A school that meets 2 days a week could be perfect for us! Do you know how I can find out if we have one in our area?

 

Have you looked into a charter program? We have a couple here (San Diego area) that meet 2x a week with the rest of the work being completed at home. We found it best to homeschool 2 of ours and add supplemental classes as needed :-)

 

Good luck with whatever you choose,

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Yes, he talked a lot about being bullied this past year. It was his second year in a small Christian school. He was being bullied by students (and adults in my estimation) at his public school, and the school wouldn't help us, so we left. This year he said his teacher was bullying him, and some of the boys in his class too. But when we dug deeper, he was getting in trouble for things he was doing in class and other kids were getting in the same trouble for the same types of behavior. But he was always convinced he was being singled out. The kids were being hard on him, and others, in the way 5th grade boys will do if you don't know how to escape becoming a target. The school's Student Services Director and principal have both spoken to these boys repeately, and they have gotten together as a group outside the classroom with the SSD moderating to discuss the teasing. There are only 10 boys in his grade, and 23 in the class, so not much escapes the school and they work closely with the kids to treat each other in a "Christ-like manner."

 

Where did you find a school that caters to kids with anxiety? That sounds perfect!

 

I have to wonder if there might have been some bullying going on at school? It is not uncommon, and he may not have reported it to you. My son also had school refusal/phobia at his worst, and we ended up having to put him in a private school. We tried to ease him back to the public school, but it just didn't work, because there actually was bullying going on that the school was not dealing with. It is quite possible, that something may have been happening, that the school may not have perceived as bullying (or may have considered it "normal" for the social skills of that age group,) but your son either perceived it as bullying or it might actually have been so.

 

That being said, we absolutely could not get our son back to the school, because every time he thinks of those kids (who would have moved on to the high school by now), he gets extremely anxious.

 

My son is at a private school that caters to children with severe anxiety. It's been a godsend, because otherwise, we would have had to homeschool him, and he needs the social interaction.

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If there are issues at school IMO it is warranted to switch schools. My DDs school had some minor bullying issues, in her right frame of mind she probably could have managed it but it just became a train wreck. I literally decided during the last week of school to move her. She is as sensitive as an open wound and everything hurts her deeply, there is a lot of mental baggage at her old school. The day we signed her up for private school it was like a huge weight lifted from my shoulders, and hers. We have had to make major changes and borrow money to make it work financially but I am hopeful that taking this step will help her continue to heal, along with everything else we are doing.

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We had a similar problem in 5th grade. Very high anxiety and DD was being bullied at school. Eventually she refused to go back and I had her tutored at home (paid for by the district) while I fought for and won an out of district placement to a small private school for students with anxiety and other social/emotional issues. Our district pays for the placement and she gets transportation. She'll graduate from there in two years and go on to college. They have small class sizes (8-10), good counselor support, and everything is tailored to your individual style of learning.

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Yes, he talked a lot about being bullied this past year. It was his second year in a small Christian school. He was being bullied by students (and adults in my estimation) at his public school, and the school wouldn't help us, so we left. This year he said his teacher was bullying him, and some of the boys in his class too. But when we dug deeper, he was getting in trouble for things he was doing in class and other kids were getting in the same trouble for the same types of behavior. But he was always convinced he was being singled out. The kids were being hard on him, and others, in the way 5th grade boys will do if you don't know how to escape becoming a target. The school's Student Services Director and principal have both spoken to these boys repeately, and they have gotten together as a group outside the classroom with the SSD moderating to discuss the teasing. There are only 10 boys in his grade, and 23 in the class, so not much escapes the school and they work closely with the kids to treat each other in a "Christ-like manner."

 

Where did you find a school that caters to kids with anxiety? That sounds perfect!

 

I have to wonder if there might have been some bullying going on at school? It is not uncommon, and he may not have reported it to you. My son also had school refusal/phobia at his worst, and we ended up having to put him in a private school. We tried to ease him back to the public school, but it just didn't work, because there actually was bullying going on that the school was not dealing with. It is quite possible, that something may have been happening, that the school may not have perceived as bullying (or may have considered it "normal" for the social skills of that age group,) but your son either perceived it as bullying or it might actually have been so.

 

That being said, we absolutely could not get our son back to the school, because every time he thinks of those kids (who would have moved on to the high school by now), he gets extremely anxious.

 

My son is at a private school that caters to children with severe anxiety. It's been a godsend, because otherwise, we would have had to homeschool him, and he needs the social interaction.

 

I'll PM you. Unfortunately, our kids tend to be the targets, and that's part of the problem. My son was teased horribly in a religious day school, as well. In public elementary school it was his teacher, who just couldn't understand that he wasn't perfect (she was an extreme perfectionist.) Unfortunately, many of our kids don't understand the typical teasing, and frequently it really does go too far.

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