mama2alex

Thanks for this post! How did you find him? How far is he willing to travel for consultations? Would you mind sharing how much he charged? Or you could pm me if you don't want to share publicly. My son's been sleeping in a metal-framed bunk bed that our neighbor gave us - since he was 3. Maybe its time to buy him a new bed. Thanks again!

Just a quick update, for anyone who's interested - after speaking with Dr. Lewin at USF today, we've decided to look further for a local CBT therapist and try that before taking Alex out of school for 3 weeks and venturing all the way to Florida. Dr. Lewin gave me a couple of names to start with, but if we can't find anyone who seems like a fit or the therapy isn't effective, we'll then schedule the intensive treatment at USF. The reason for this decision is that Dr. Lewin felt its ideal for the child to be in school while going through therapy for school refusal, so they can practice what they're working through the therapy (and the parents can practice too) on a daily basis. I don't think our previous therapist was the best at treating school refusal, so we're hoping someone with more experience (if we can find them) will be able to help. Obviously, the intensive treatment outside of school attendance can work, as it has worked so well for others, but we are going to give local therapy one more try before going this route.

I spoke with Dr. Storch on Wednesday - he is amazing. To see a therapist who works with PANDAS/PANS kids and who is in network for us, we have to wait until late September. I don't have an exact date yet. We've decided to do it, even though it means pulling him out of school. I hope we're making the right decision. Its a big commitment!

That makes sense, thanks. I will try to be patient. Getting nervous about the start of 6th grade.

Thanks to everyone who replied! We are looking into the USF program and after some delays due to miscommunication as well as the IOCDF conference, are waiting for a call back from Dr. Storch. I was hoping that if we did this, we'd be able to get in before the end of summer, but school is now 3 weeks away, so I don't think that will happen. I don't like the idea of taking him out of school to work on school refusal, but we'll see what they say about that. Maybe we can wait and go over the holiday break in December, we'll see. MichiganPandas, How are things going two weeks post therapy? Are you seeing good results? Also, has anyone else found that communication is difficult with USF? I have been trying to set this up for almost 3 weeks now, and we seem to have had more than our share of delays and miscommunications. It certainly could be me, as I have brain fog at the moment, but I thought I was being pretty clear about what I needed.

Love this book! If you read very carefully, Pamela Weintraub hints that one of her sons had psychiatric symptoms from Lyme, but doesn't provide any details.

Our Lyme doc said Alinia kills a bunch of different bugs, as others have said, but he didn't specify. He also said that 90% of his Autism and/or PANDAS kids benefit from it. As for detox, we use Burbur and bentonite clay, as well as a couple of homeopathic remedies and lemon water. Also, our ds was recently having leg pain that seemed like it might be a herx, though we weren't sure, and our doctor said to try a magnesium lotion. We haven't tried it yet though.

My ds, 80lbs, takes LDN 1mg (pill form from Koshland Pharm) at bedtime (btwen 8:30 and 9:30). We had no negative side effects. He is sleeping through the night, but I'm not sure if that's from the LDN or not. It's possible it has helped his asthma - he was taken off his controller (steroid) med in April because his lungs were doing so well - but again, not sure. I'm keeping him on it just in case its helping his immune system, and am going to ask whether he should be on a higher dose for his weight. Good luck - hope it helps your child!

We did try this in 3rd grade, but our school really gave us a hard time and the tutor was constantly talking about her "really sick" students (in front of my son), like those with leukemia, who would give anything to go to school, work really hard, ya da ya da. My son was very oppositional with her and sometimes refused to come to the table and work with her. Secretly I didn't really blame him as she was an idiot and clearly thought he was a faker and we were gullible and enabling. I think to do this, you really need a school that believes your child is ill and a good tutor. I'm glad its working out for you. We ended up switching to a small private school after that year, and while they won't home-tutor, they are working really hard to help him get in to school and succeed and are very understanding and accepting when he is too anxious to get in.

Hi and thank you! I've been thinking about you lately! Email me some time if you have a few minutes and the energy to go with it.

Thanks for posting! DS finally learned to tie his laces at age 9, but has always struggled with tying them tightly and not taking forever. Now at age 12 he usually just walks around with them untied. I think once they come untied, he's too impatient and embarrassed to tie them in front of others. Our school actually added a clause to their dress code for next year stating that everyone's shoes must be tied at all times and I suspect my ds may have had something to do with that! I'm going to order a set and see if this helps. Thanks again.

This is a great tip - thanks for mentioning!

Thanks for this comment! I am going to look into the USF clinic. Was her school refusal due to a very specific fear/OCD, or was it more complicated? Do you stay with them, or at a hotel while you are doing the 3 week clinic?

I tend to agree with this - at least this is my gut feeling for our situation. I don't want to be mean and force him to do something that is awful for him. But at the same time, when he gets in he usually has an overall positive experience and seems to get so much joy out of the friendships, field trips, special events, weekly chapel/singing, etc, that I don't want him to be deprived of that in the long run. And he is a kid who gets in big time ruts, so I feel if we homeschool for one year, we will never get him back into regular school. Our school is, relatively speaking, a very safe, loving environment, so I feel comfortable pushing him to get back to going full-time/regularly. I just have to figure out HOW to do that. But the homeschool info is great to have as a back-up if we just absolutely can't overcome this.

He's at a small private school, and has the equivalent of an IEP/504. This is a VERY interesting concept. How did he keep up with the classes he wasn't attending before you got him back full time? I think if we asked for a plan like this, they might be willing to try - especially if he continues to miss at least one day a week next year. Or maybe we might be better off starting 6th grade this way. Not sure yet, but I'm getting many interesting ideas to work with here. Should have put this out to the forum long ago!

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!

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?

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.

Yes, please do!

Thanks Smarty (I've always thought that was a very apt screen name for you ) What is a "2E" kid? This does in many ways sounds like my son. Can you tell me more about this or do you have a link? In terms of schools, I don't think an asperger school would be the right fit for him. He gets along very well with "typical" kids, although he radiates toward the ones I can see have some subtle issues. If we keep him in a typical classroom, his current school is the best place. I have looked at a one-on-one school (Fusion Academy), but its expensive and I think most of those kids are at the end of the line, so I hesitate to put him there. Beyond that, I think homeschool would be our last resort.

Thanks Linda. I would be interested in what you think of the K-12 program - I've heard good things. For now, I'm looking at homeschooling as a last resort. Is your 7th grader having trouble getting into school? Is that why you are considering homeschooling?

DCmom, Its so surprising and strange that your dd cleared all symptoms except school refusal. What did USF say about this and how did they help her? We would be willing to go out of state for help, but I had assumed a therapist would need to work with him while he was attending school, and that it would be a much longer process than 3 weeks. Yes, we are worried about all the things you mentioned. As for the exact reason for the anxiety around school, it is murky and can change daily. He seems to have panic attacks right before drop off on the days he doesn't get in. He had a rough time with his teacher this past year, and he does struggle to get along with a few of the kids. I also think on some level, it is OCD - its become a habit to react to anxiety by not going to school. Thanks for your response. If you have a minute, can you provide some info on the USF program, and whether you think it would be appropriate for us?

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.

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.

You shouldn't have to prove to her that your child shouldn't get a vaccine. Its your decision as a parent. Instead of trying to prove why your daughter shouldn't get the vaccine, maybe ask your doc to show you the double-blind, placebo controlled study that definitively proves that kids need 5 tetanus, 5 pertussis and 5 diptheria shots by the time they are twelve to convey immunity. And does she have long-term safety data for the current vaccine schedule on kids with autoimmune disorders? I'm guessing she doesn't want to check titers because there's a good chance your daughter still has immunity and she will lose the argument with you for good. And why can't kids just get a tetanus booster if they get a cut, like we used to do? Is there a study proving that isn't effective? And what doesn't she think you "understand" about the pertussis vaccine? Glad you got the exemption. They haven't decided yet, but I think there's a good chance we will need a doctor's signature for the philosophical exemption in the near future. And it doesn't sound like your ped would necessarily sign off.