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Aidan is really having trouble lately with things like grabbing other kids and pulling them down, running off, throwing things, can’t stay in seat etc. This happens at home and school.

 

We believe that Aidan has congenital Lyme and possibly bartonella. He is developmentally delayed and is in a special needs classroom and has never been able to be mainstreamed due to his behavior. His speech is delayed making communication difficult. This behavior is not new but has been especially problematic lately and he has gotten quite physical. With treatment we have seen increased speech and cognitive ability, increased eye contact and have had some calmness along the way but a lot of downs too. We have seen patterns of herxing in the past. Our doctor pulses antibiotics and that often has enabled to see on and off herxing based on the treatment days. Right now though things seem pretty constant and reminds me of behavior from a couple of years ago before we started the first intervention that appeared to even helped with Aidan which was GFCF diet (before PANDAS then Lyme)

LLMD thinks it is herxing, especially with some recent changes in his antibiotics but I am not sure what to do about school. His teacher is really not knowing what to do about the behavior and has actually suggested that we go off all meds (translation – antibiotics) since “It can’t be any worse”. (I am tempted to do it and just see if it gets worse!!! It has been this bad in the past and possibly worse) I don’t think that she buys the Lyme diagnosis and she doesn’t understand herxing. However, she is an experienced special ed teacher and I think she really means well.

 

When I asked her if she has had anybody else like Aidan she said that there are other kids with behavioral issues but she can usually find the triggers and control the situation and that this is something that she specializes in. She said With Aidan there doesn’t seem to be a trigger and even things such as what he likes to do, etc. change from day to day. Actually I believe this information supports the Lyme diagnosis. The reason things are so variable – the trigger is the bacteria inside and the toxins from herxing throw in some GI symptoms and muscle/joint pain in there too. So…

 

1. How much should the school be involved in the medical aspect of Aidan’s condition? It is so frustrating to feel so isolated in trying to manage this alone without anyone in my area to help with this. I wish I could work with a team of people that can help me through this but there is no one in my circle who gets what this is like. This also makes me feel like I am in some kind of fairy tale world by treating Lyme and start doubting myself and what we are doing. I have been so strong with this for a year or so but am feeling so weak right now. I don’t want to be defensive and try to educate them to just have it fall on deaf ear but to me it seems like important info for whoever is educating him. If this was a doctor instead of a teacher, I would be moving on.

2. I agree with them that Aidan should not be hurting people at school but what are my alternatives? We also can have a problem with this in our daily live. We can be out some where and he is acting fine and all or a sudden he will grab someone’s wrist and not let go –w e don’t even need to know the person. Do I pull him out do school all together? I could not handle having 24/7care of Aidan – I don’t think I can handle all his meds, etc. with him being with me 24/7. Is there something that I can make the school district do? Home Bound? Special School? I know if he wasn't in special ed he would have been suspended by now.

3. Any Lyme/educational advocates out there that can help me with this situation?

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I'm sorry you're in this spot. But I wanted to reassure you that when you start to feel like Alice in Wonderland and the teachers look at you like you've lost your mind, try to shut that out. You're not insane. They're just uninformed. Don't waiver in what you know. When the teacher says "take him off meds, It can't get worse" - she's saying "make my job easier." It has nothing to do with whether the meds are making Aiden better or not. It can get worse and it was worse before you started this journey. You know that. Don't let her make you feel otherwise.

 

You say this is making you remember what it was like before GFCF. Could yeast be a problem? I had a strange experience yesterday. My DD has her LLMD appt today, so yesterday I was updating her symptom chart. I bring the graph to every appt. For the past month, I've only been punching in numbers into Excel without looking at how that was changing the corresponding graph. When I looked yesterday, I saw a significant drop in behaviors about 3 weeks ago and went to my notes to see what was so magical about the week March 13th - the time of the change. "Start Garlic" was my note. I think Garlic has done two things for DD - stopped yeast and helped digestion - both of which seem to have improved her behaviors. Today, I'll be asking about digestive enzymes and such. So when I read your reference to GFCF, it makes me wonder about yeast and/or gut inflammation/digestion. Have you looked into TMG/Betaine at mealtime?

 

As for your questions - #1 - The school shouldn't be involved in second guessing any medical decisions. That's why you pay a doctor who actually studies and practices this stuff. As for how much you share - I share next to nothing with my DDs school because they are just shy of hostile. I share a little with my DS's school because they seem more interested in helping but are still wary of the idea of long term abx. So I stop talking when I start to see the expressions on their faces change. They don't need to know the gory details. Their job is to educate the child in front of them, not give advice on treatments. You can try to explain that a medical condition will make his behaviors and abilities variable, but I personally avoid TMI.

 

2. Does your son have a dedicated assistant? is this a public school? Does he have an IEP? If so, you should be able to get him someone to shadow him and help avoid or manage physical outbursts. Yours certainly isn't the first to have this challenge and they shouldn't be making you feel like it's your job to figure it out. It's their.

 

3. As for advocates, you can contact Time for Lyme or Turn the Corner to see if they know of resources or you can go to Wright's Law website and in their yellow pages section, see if there any any advocates in your area. I do think even if you just had a consultation it would make you feel more sure of yourself.

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You say this is making you remember what it was like before GFCF. Could yeast be a problem? I had a strange experience yesterday. My DD has her LLMD appt today, so yesterday I was updating her symptom chart. I bring the graph to every appt. For the past month, I've only been punching in numbers into Excel without looking at how that was changing the corresponding graph. When I looked yesterday, I saw a significant drop in behaviors about 3 weeks ago and went to my notes to see what was so magical about the week March 13th - the time of the change. "Start Garlic" was my note. I think Garlic has done two things for DD - stopped yeast and helped digestion - both of which seem to have improved her behaviors. Today, I'll be asking about digestive enzymes and such. So when I read your reference to GFCF, it makes me wonder about yeast and/or gut inflammation/digestion. Have you looked into TMG/Betaine at mealtime?

Thanks LLM! I think we are OK with yeast but am not sure. His bottom was really deep red after we started riftabutin in Feb - not strep, maybe yeast but LLMD thought it might be irritation from herxing. We did go to 2 a day on the probiotic and added more Saccharomyces boulardii and did a few days of Nystatin cream and the redness faded away after a while. Do you do a garlic supplement? Is that good for yeast?

 

LLMD said that riftabutin goes after biofilms and may be stirring things up - hence the behavior might be herxing. Also when he started back on azith in at the beginning of this year it seemed to iritate him then adding the riftabutin was added on top of that tipped the boat even more.

 

He is in a contained multiple disabilities room, is very delayed - nowhere near grade level (although we really thing there he knows way more than he can demonstrate and what he does demonstrate seems to vary from day to day). So he is definetly on an IEP. The scheduled IEP meeting is tomorrow but we will also start dealing with the behavioral stuff too and I think it is unlikley that we sign off tomorrow. My husband and our support person from the county seem to think that it is not important to bring up the Lyme but I think it and treatment is a huge factor in why his behavior (and learning) varies from day to day and why they can not identify the triggers. Actually I am not all that worried about him educationally but I don't want him to be at home all day and isolated from others and I know I can not be a good care giver to him if I am with him 24/7. I wish I felt like I would be good at home schooling. But.. I really want to push through with the Lyme treatment so that perhaps he will be able to make some gains educationally. It just seems that if his illness was something recognized like cancer than we would be talking about hs specific illness and how it affects all aspects of his life including behavior.

 

LLM - I also may be PMing you on some of his blood tests that come back deficient in some minerals (if I can get to the point where I can address that) - I have noticed that you seem to be knowledgeable about that stuff!

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The only thing the school needs to know is that he has a chronic illness that happens to be called Lyme. They do not need to know his medications or when he is starting or stopping. It is controversial and cannot do anything but cause issues down the road. Telling them that certain meds may cause issues is inviting them to make recommendations to stop meds, and they are not qualified to do so.

 

We are in a similar situation and the school held an IEP and forced a move to a functional class which is what you are talking about. I could have fought it with a lawyer, but I took a step back because he was not doing well with the teacher at the time. Our son lasted one day in that functional school and went into a regression. So, we made the decision to push the lyme case and request for in-home hospital care which means we qualified for in home teaching. The reason that we did this is because our lyme treatments were getting more involved with rotating combinations and our son was riding a roller coaster like all others with good days and bad days ( a lot of herxing). We did not feel that a long term ride like that would make for a good learning environment for him and of course we were only getting bad reports daily anyhow. So, we decided to take control and give him the best care we could while not exposing him to a bad teaching environment which only stressed him worse. We could have pushed for many hours a week of in home teaching, but we are very busy with his abx schedule so we decided on one hour per day, which works for him. My wife wife administers the medicine and works with him also. The 1st yr of lyme tx brought a couple key improvements, but he did not progress overall like the LLMDs thought he should. Since he has autism also and his lyme is congenital, that makes him a neuro lyme case so the docs independently recommended we try IV abx therapy. After looking into it for 3 months, we agreed and we are two months into IV treatments. That is a big commitment, but we agree with the docs that he needed that and we have heard good reports from those who have tried this route. I tell you this story because since he is on in home hospital, we have the flexibility to try all kinds of different treatments without having to talk to the school about them and without worrying about whether he will get bad behavior reports every day. The largest benefit though are that our son does not have to deal with the stress of going to school while he is undergoing daily abx treatment. In addition, he does not have to be exposed to the constant barrage of illnesses at the schools. If you don't think you can handle a daily in home schedule, then maybe you can get some help. It is difficult and you really have to be organized about how you approach it, but there are many parents out there taking this route. Not because they want to, but more because they feel it is the best route to help their children heal. School is secondary at this point for us, at least for now.

 

Hope this gives you another perspective. Best of luck in whatever path you choose. John L

 

 

Aidan is really having trouble lately with things like grabbing other kids and pulling them down, running off, throwing things, can’t stay in seat etc. This happens at home and school.

 

We believe that Aidan has congenital Lyme and possibly bartonella. He is developmentally delayed and is in a special needs classroom and has never been able to be mainstreamed due to his behavior. His speech is delayed making communication difficult. This behavior is not new but has been especially problematic lately and he has gotten quite physical. With treatment we have seen increased speech and cognitive ability, increased eye contact and have had some calmness along the way but a lot of downs too. We have seen patterns of herxing in the past. Our doctor pulses antibiotics and that often has enabled to see on and off herxing based on the treatment days. Right now though things seem pretty constant and reminds me of behavior from a couple of years ago before we started the first intervention that appeared to even helped with Aidan which was GFCF diet (before PANDAS then Lyme)

LLMD thinks it is herxing, especially with some recent changes in his antibiotics but I am not sure what to do about school. His teacher is really not knowing what to do about the behavior and has actually suggested that we go off all meds (translation – antibiotics) since “It can’t be any worse”. (I am tempted to do it and just see if it gets worse!!! It has been this bad in the past and possibly worse) I don’t think that she buys the Lyme diagnosis and she doesn’t understand herxing. However, she is an experienced special ed teacher and I think she really means well.

 

When I asked her if she has had anybody else like Aidan she said that there are other kids with behavioral issues but she can usually find the triggers and control the situation and that this is something that she specializes in. She said With Aidan there doesn’t seem to be a trigger and even things such as what he likes to do, etc. change from day to day. Actually I believe this information supports the Lyme diagnosis. The reason things are so variable – the trigger is the bacteria inside and the toxins from herxing throw in some GI symptoms and muscle/joint pain in there too. So…

 

1. How much should the school be involved in the medical aspect of Aidan’s condition? It is so frustrating to feel so isolated in trying to manage this alone without anyone in my area to help with this. I wish I could work with a team of people that can help me through this but there is no one in my circle who gets what this is like. This also makes me feel like I am in some kind of fairy tale world by treating Lyme and start doubting myself and what we are doing. I have been so strong with this for a year or so but am feeling so weak right now. I don’t want to be defensive and try to educate them to just have it fall on deaf ear but to me it seems like important info for whoever is educating him. If this was a doctor instead of a teacher, I would be moving on.

2. I agree with them that Aidan should not be hurting people at school but what are my alternatives? We also can have a problem with this in our daily live. We can be out some where and he is acting fine and all or a sudden he will grab someone’s wrist and not let go –w e don’t even need to know the person. Do I pull him out do school all together? I could not handle having 24/7care of Aidan – I don’t think I can handle all his meds, etc. with him being with me 24/7. Is there something that I can make the school district do? Home Bound? Special School? I know if he wasn't in special ed he would have been suspended by now.

3. Any Lyme/educational advocates out there that can help me with this situation?

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