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Hello,

 

This is going to be a random - just too much going on. My ds11 has been raging again for two days and we haven't seen this level of attack since Nov. 1st while on 5-HTP and off additives/dyes. And lyme has a 3-4 week cycle, yes? I'm crying all day long, not eating or sleeping again, just like when we started in May. My parents (in their 60s) have been living here helping me (single mom), and ds11 has caused repeated serious injuries using objects - even before he never ever did this even a month ago! He carries around curtain rods, vacuum tubes, hard drives, to hit us with or throw at us. What do you folks do when your kid attacks? I feel huge torment because when ds11 gets out of control, we try to hold him on the bed or floor until the seizure passes. But ds11 has a traumatic history with 1) hospitals recently holding him down to give sedatives, and 2) because (with an APGAR of 9) a pediatrician (not physically present at the hospital) suspected sepsis after 36 hours of labor, for the first 10 days ds11 was tortured with multiple IV sites on his head, hands, feet, legs. I really feel like I'm going insane every second. And all ds11 says while raging is "Why are you hurting me?" He grabs me and clings to me and begs me not to hold him again.

 

So do you ever find yourselves needing to hold your raging kids, or do you just let them hit you as long as the episode lasts? I feel terrible every time because ds11 says he can't trust us to not hurt him when we're only trying to minimize injuries to all of us. This all came out of the blue after over one month of NO RAGES AT ALL!! Once again what's happening is ds11 is getting to bed and something "wakes him up" while he's ALMOST OR ACTUALLY ASLEEP and he starts to rage. MAJORLY HUGE PUPILS during rages AND when not raging. Which is why we started the 5-HTP.

 

We went to Dr. R in Plano on 11/29/10 and got bloodwork for lyme, bartonella, and babesia (ILISA through LabCorp?). I wanted a more detailed explanation of testing options but he was hard to follow. Maybe we caught him on a bad day. We won't get results until after New Year's. Maybe someone can explain the science of this next part? While we were there ds11 complained of a sore throat, and Dr. R confirmed it was inflamed. But he didn't do a test for strep even though PANDAS was still on the table. He recommended Mucinex because ds11 already had ASO and DNase-B titers run in mid-September which were very low. So Dr. R said he obviously didn't have strep. My only thought was couldn't ds11 have caught strep (even for the first time?), and there was a good reason to run a strep test even though his Sept. titers were low? I asked questions but I really didn't get very clear answers even in a 2-hour appt. And we couldn't reveal to Dr. R that ds11 has been on 5-HTP or it would have ruined our ability to continue. We told Dr. R the raging was better, but I never had a chance to speak with him alone. And it didn't really seem that he supported the idea that dyes/additives could cause raging. And Dr. R didn't give abx in the meantime because it could mess things up if we needed to do more testing later.

 

Also, on the trip to Plano from Houston, ds11 wanted Lay's potato chips he saw at a rest stop. We checked the label which said "potatoes, sunflower oil/corn oil, and salt - no preservatives." And ds11 has not had any chemical additives during the month he didn't rage. The worst episode with ds11 was with yellow dye in aspirin, and I would NOT be surprised if Lay's used yellow dye in their oils. It appeared they might be okay, but now we know differently. So it could be a strep (re)infection or the chips or both. And he missed his dose of 5-HTP the day we traveled, and he keeps saying food and drinks taste funny. For the last week we can only get about 100-200 mg a day in ds11 - he used to get closer to 400-500 daily. He has a huge issue with sedatives as I mentioned, so we have been sneaking the 5-HTP into anything we can.

 

I also called Dr. N in Denver for an appt. but have not heard back yet after leaving one message. Their message service clearly said to leave only one message, but I haven't heard anything since Nov. 11th. I suppose I should call again. I just didn't want to jeopardize our chances of seeing him. Sounds stupid I know. My judgment is not clear anymore. Just barely hanging on. I feel so alone in all this.

 

I'm just needing to know someone is out there who knows what this is like, please?

SearchingMom

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Hi SM,

 

Oiye! Sounds like you are being literally and figuratively hit from every angle! My girl doesn't rage, so I don't have any nuggets of wisdom there, but I've read others post about peanuts and ibuprofen helping. Hopefully folks will chime in soon. I also don't know the doctors you are referring to, but they don't sound like a good match thus far. I'd keep looking and keep calling until you have a plan and some reasonable answers that make sense to you. When I've felt great despair with this in the past, having a plan of action and options helps me cope, although I'm terrible at waiting and constantly am praying for patience!

 

You are not alone, you're not crazy and you are not a bad parent. Find some super-mom-glue and piece yourself back together.

 

Hopefully your cyber-friends can help you piece together an action plan for the immediate and short term.

 

Jill

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I agree that the peanuts and ibuprofen help with rages (at least it did for us). BUT, you will need to get them to take it prior to the rage beginning. I do know how hard that is... as they can go from 1 to 10 in seconds with the rages. My youngest son, suffered from rages, he has both babesia and bartonella and with proper antibiotics we have seen rapid resolution to rages although they were worse when we first started treatment. He started treatment for the co-infections on Oct. 28th and his last rage was November 7th. I recommend contacting Dr. N office again first thing tomorrow, as you know he has helped several from the forum and so sorry they have not gotten back to you.

 

Another short term solution... often kids with multiple co-infections have high histamine levels. Although you do not know how your child is co-infected yet. Maybe a nightly trail of benadryl would help. It might take up to two weeks to notice a difference. We use histamine reducers with all our kids. Growth/herxing cycles for the following: Bartonella (1 to 2 weeks), babesia (2 to 3 weeks), Lyme (3 to 4 weeks)

 

-Wendy

Edited by SF Mom
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I'm so sorry!! Been going through the same stuff lately...no way to live. We even ended up in a "treatment center" for a few days. My elderly mother also helps me which scares me to no end!! While at her house, trying to cool off after the treatment center and because he does so much better there, a homeopathic doctor fell into our path. She put him on a yeast free diet and gave us some kind of herbal alkalizer to help balance out his ph levels. Within 18-24 hours he was like a different child...not perfect by all means, but at least bearable. I think between the high-dose antibiotics, not enough probiotics, food compulsions which cause too much sugar in his diet (which feeds the yeast), and Halloween candy he went over the edge. I'm not doing the diet strictly because...well, I have a kid with compulsions capable of raging...so we are doing it as much as we can. It got easier after the first few days when the craving for sugar goes away. Of course, I took him off the antibiotics temporarily, just to get a handle on the situation. I started thinking about his diet and he really doesn't crave foods with yeast in them so I figured it must be the antibiotics. Now the other day I gave him one antibiotic and by the end of the day he started raging again, so I'm not really sure what to do. I have another antibiotic now, but I guess we still need time to get over the yeast so I'm slightly scared to give it to him.

 

Anyway, I got off subject with my concern...sorry!! Just wanted to put this info out there!! I know the desperation cause I'm in it too!! I would never forgive myself if I didn't pass the info on!! At least we aren't scared to be around him at the moment!! I will say prayers for you!! All I know is it sucks to be too scared to put up the Christmas decorations because they will be destroyed and that is how I feel!!

Edited by forjpj
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Have you tried any cognitive behavior therapy? It's a strategy that helps your child recognize the feelings as they're building and develop strategies to manage them instead of being victim to them. You can try naming the rage (we used Edgar the Angry) and then you and your son address "edgar" whenever he is raging. It turns the behavior into a 3rd party and gives you and your son a common enemy. It helps your son understand when you are angry at the behavior yet you can still love him. It also allows your son to see the behavior/illness as separate from himself (i.e. my behavior is bad, not "I am a bad person".

 

I realize that an 11 year old can be very strong. But if you don't establish yourself as the one in charge, it will only get worse as he gets older. During a rage, a person can be terrified at feeling out of control. If the people around him are also acting like they are not in control, it can make the fear and anger even worse. You cannot come across as a victim and you cannot put your parents in a position of being victims either. You have more than just your son to protect. Initially, this may mean restraining him, or at least physically protecting yourself, although I completely understand your reluctance to do so. But as I said, you are responsible for the safety of everyone. Your son's emotional well being is important, but it is no more important than the well being of the rest of the family.

 

I would strongly encourage you to work with a therapist trained in CBT (and ERP if OCD is also present). A person in a rage is often unable to control themselves. But after a rage, there need to be discussions and there need to be limits set. It can be ok for your son to get angry. But he should punch a pillow or a punching bag or go to a designated room and scream his lungs out. But if he throws something, or tries to injure someone or breaks a valuable, then there should be firm consequences, not negotiable. He needs to learn acceptable ways to vent anger. It's a life skill. The rest of the world will not tolerate having floppy drives thrown at them, regardless of any mental or physical illness.

 

I don't mean to sound so unsympathetic. I've lived with rages, albeit with a smaller child. But I've seen the damage an uncontrolled rage can do - physically and emotionally, both to the child and to the rest of the family. I know it's exhausting and without proper medical support, it's no wonder you're at the end of your rope. But one step toward recovery is in taking back control. It may take awhile to find the cause of all of this. But personal and emotional safety can't wait for that. If your son isn't normally like this, than build on his understanding when he's calm and explain that the rules don't change when he's angry. If you see him walking around with a "weapon" (which carries an element of premeditation), let him know he will lose privileges that matter to him. You will feel empowered and he will feel better knowing someone is taking steps to keep everyone safe and is in charge.

 

As a second step, I agree with the others. It doesn't sound like you've hit upon the right doctors yet. A doctor looking at your son's symptoms and not swabbing a red throat is not on board. We had our ELISA lyme results back from Quest in a week, not 4-5 weeks, but either way, ELISA isn't going to give you reliable results anyway. If you suspect Lyme, you really need to have lyme testing done thru a specialty lab. You can also test for yeast with blood tests and stool tests. But you need to be under the care of a doctor who understands what tests to order and what to do with the results. I'd suggest a lyme doctor from www.ilads.org (go to the "contact us" tab and send them an email with your location) or a DAN doctor (http://www.autism.com/fam_whatisautism.asp - in the middle of the page is a "find a physician" search bar). Since you've seen times where rages weren't like this, keep following your instincts to uncover the medical trigger. But in the meantime, realize you and your son can take steps (on your own or with a therapist) to take back control of what I know is a very scary and horrible situation.

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Lots, tons of experience w/ rages here. What has worked for us, in a haphazard combination-do whatever works way:

 

1) have a discussion when child is calm @ how you know he can't help it when that happens to him, but you need a plan to deal with it when it does happen.

 

2) Make a safe place to rage- if he will go there until he can get it under control, there will be no need for hold down. I think many times, the hold downs do make the rager feel more threatened and can prolong rages.

 

3) My daughter is usually amenable to me holding her during rages- she will hit me when I do, but pulls me on top of her if I begin to back off. I can tell, though, even hitting me, that she is trying not to hurt me. Its like she is trying not to hit me, but needs to?! I've built up a level of trust w/ her- that she knows I'm trying to help her- when her dad does the same thing, because he hasn't worked on it with her as much, she tends to feel more threatened and it'll often get worse.

 

4) If you can possibly do it, debrief after a rage attack and see if you & your son can figure out what made the rage diminish-to identify tools or strategies to use next time.

 

A good website for tools/techniques for dealing with rage:

http://www.pivot.net/~childsafe/rage.htm

Edited by peglem
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Dear Jill,

 

Thanks for responding! I do feel like a bad parent and that it's all my fault all the time, so thanks for supporting me that I'm not a bad parent or crazy. Right now, this very moment, I don't know how to go from here with a plan. Everything feels so urgent and horrible all the time. I'll try.

 

We have so much trouble getting anything into him voluntarily that offering something like ibuprofen we've been afraid to try. He can't swallow pills either, so in the past we usually only have the option to give liquid ibuprofen (dyes!) which is not an option now. Do they make non-dye ibuprofen? We considered last night while talking with ds11 to get hockey goalie masks and other gear to protect ourselves because he's so terrified of being held, and each time we do it, it erodes any trust we might have been building. Things were REALLY GOOD for about two weeks, and then BAM! total raging again. It really threw us off track, although we should always be prepared. I will look for another doctor, but Dr. R was #5, and it's hard to keep going and not be discouraged.

 

Thank you again,

SearchingMom

 

Hi SM,

 

Oiye! Sounds like you are being literally and figuratively hit from every angle! My girl doesn't rage, so I don't have any nuggets of wisdom there, but I've read others post about peanuts and ibuprofen helping. Hopefully folks will chime in soon. I also don't know the doctors you are referring to, but they don't sound like a good match thus far. I'd keep looking and keep calling until you have a plan and some reasonable answers that make sense to you. When I've felt great despair with this in the past, having a plan of action and options helps me cope, although I'm terrible at waiting and constantly am praying for patience!

 

You are not alone, you're not crazy and you are not a bad parent. Find some super-mom-glue and piece yourself back together.

 

Hopefully your cyber-friends can help you piece together an action plan for the immediate and short term.

 

Jill

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Dear Wendy,

 

Thanks for responding. I will call Dr. N again tomorrow. I think that's a good idea. I'm just not sure I can give benadryl because the dyes in chewables/liquid made him rage before. Do they make dye-free benadryl? I'll try to remember to check. I'm in tears even as I write this. And if you know more about the growth/herxing cycles, or somewhere I can read more, that would help. I keep repeating I just don't understand. There has been a pattern to follow before now, and there are too many possibilities for what caused this exacerbation: not enough HTP? resurgence of lyme growth? additives in potato chips? strep (re)infection?

 

Does your son have trouble with additives/dyes, too? And what test did you use for babesia and bartonella? Will the ELISA tell me about them? Someone else just posted that ELISA doesn't work.

 

Anyway, thanks for sharing info and wisdom with me.

 

SearchingMom

 

I agree that the peanuts and ibuprofen help with rages (at least it did for us). BUT, you will need to get them to take it prior to the rage beginning. I do know how hard that is... as they can go from 1 to 10 in seconds with the rages. My youngest son, suffered from rages, he has both babesia and bartonella and with proper antibiotics we have seen rapid resolution to rages although they were worse when we first started treatment. He started treatment for the co-infections on Oct. 28th and his last rage was November 7th. I recommend contacting Dr. N office again first thing tomorrow, as you know he has helped several from the forum and so sorry they have not gotten back to you.

 

Another short term solution... often kids with multiple co-infections have high histamine levels. Although you do not know how your child is co-infected yet. Maybe a nightly trail of benadryl would help. It might take up to two weeks to notice a difference. We use histamine reducers with all our kids. Growth/herxing cycles for the following: Bartonella (1 to 2 weeks), babesia (2 to 3 weeks), Lyme (3 to 4 weeks)

 

-Wendy

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Dear forjpj,

 

Yes, it's been awful. There's no word to describe what this is like. He's been on probiotics since May (no trouble getting him to take that), but we've had no antibiotics except for about two weeks of grapefruit seed extract which did exacerbate symptoms. That made me think if his immune system was responding in some way, there was probably an immune thing going on. I just wish we could live normally again. We got to for about 2-3 weeks, and then it all fell apart again.

 

We have been working since early this morning putting up anything that ds11 could use as a weapon. And ds11 has been getting less gluten in his diet, but he has had pizza for three days now, so I suppose that could be a factor, too. But no dr seems to be able to help us before things get bad again. I just don't understand why this is happening. I went to a homeopathic dr who said to give ds11 inositol and it made him much worse!! There went $50 down the drain because I can't return the stuff. All the time and money wasted it seems. I just want our lives back.

 

Thanks for sharing. I hope you get relief soon, too.

 

SearchingMom

 

 

I'm so sorry!! Been going through the same stuff lately...no way to live. We even ended up in a "treatment center" for a few days. My elderly mother also helps me which scares me to no end!! While at her house, trying to cool off after the treatment center and because he does so much better there, a homeopathic doctor fell into our path. She put him on a yeast free diet and gave us some kind of herbal alkalizer to help balance out his ph levels. Within 18-24 hours he was like a different child...not perfect by all means, but at least bearable. I think between the high-dose antibiotics, not enough probiotics, food compulsions which cause too much sugar in his diet (which feeds the yeast), and Halloween candy he went over the edge. I'm not doing the diet strictly because...well, I have a kid with compulsions capable of raging...so we are doing it as much as we can. It got easier after the first few days when the craving for sugar goes away. Of course, I took him off the antibiotics temporarily, just to get a handle on the situation. I started thinking about his diet and he really doesn't crave foods with yeast in them so I figured it must be the antibiotics. Now the other day I gave him one antibiotic and by the end of the day he started raging again, so I'm not really sure what to do. I have another antibiotic now, but I guess we still need time to get over the yeast so I'm slightly scared to give it to him.

 

Anyway, I got off subject with my concern...sorry!! Just wanted to put this info out there!! I know the desperation cause I'm in it too!! I would never forgive myself if I didn't pass the info on!! At least we aren't scared to be around him at the moment!! I will say prayers for you!! All I know is it sucks to be too scared to put up the Christmas decorations because they will be destroyed and that is how I feel!!

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Dear Me,

 

Thank you for replying! I could really feel your understanding, even over the net! I don't have any friends now. I don't have any kind of social life at all. Just work and home, and trying to get food and sleep, and hoping we don't have to deal with a rage. I tell people about it, but they don't want to talk about it, and they rarely ask how things are going. I'm sorry you've lost family over this. I sometimes worry if that will happen to me, too, but so far, my parents have really tried to help as much as they can. It's a really hard situation for all of us. Even ds11, I know. But he doesn't seem to have any sense of what's happening. Even when he causes us injury, all he can say is why are you hurting me?

 

Have you found a good dr? Has your child been diagnosed with or treated for anything yet?

 

And I may send you a PM sometime. I sure could use some friends!

 

Thanks,

SearchingMom

 

I'm sorry that you feel this way. I have felt this way for a very long time. I have lost family members because they don't believe what I'm going through. How can they really? I can't believe what is going on in my house and I'm living in it. I swear it's like living in a movie, right? Who could write this movie? Who, who could make up this disease, and why? Everywhere I turn I am confronted with opinions and people turning their backs on me. Between doctors, teachers and family members. Then I come home and I have to watch my child suffer. Horrible.

 

I'm not crazy and either are YOU. We are living in this movie. It's hard to keep on path and I'm the last one to give positive advice but I try. HOPE. I pray for all of us that we keep holding onto HOPE. I wish I could give you a hug and a friendship that would carry you through these moments. I'm here if you ever just need a friend. :wub:

 

Love,

Me

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Dear LLM,

 

Thanks for replying. I pursued therapy for ds11 back in August, but the folks we've tried to work with won't work with ds11 unless he's medicated, and I can't even get him to take 5-HTP without sneaking it into his food. We recently learned about a play therapist, so that might be a start for ds11.

 

Before ds11 ever came down with whatever this is, I had very good boundaries and limits in place, and we had a solid routine for years. Never any issues with combativeness or arguing at all. I have worked with him since he could talk about feelings and how to make him feel safe. Yesterday I found a letter he wrote to me when he was six saying when you come home mommy I want us to talk and hug and have lovies because I'm worried. I haven't seen that child in a really long time, and I'm crying even now. When will I ever see him again? I posted once before that this occurred right about the time he started puberty. Others said they encountered this with the older kids, too. Big changes in the brain at this time. Less melatonin and swings in hormones, obviously. I've been wondering if I should take him to an endocrinologist. His adrenaline seems way out of whack, too. Dilated pupils all the time.

 

We are trying to keep everyone safe; we've had plans that worked before that aren't working now. And we do need a good doctor. It just takes so much time to figure that part out, and in the meantime, our lives keep falling apart. To build trust we tried promising him we wouldn't hold him again, but then he interpreted that as he could do anything to us and we wouldn't protect ourselves. He says he has a right to hurt us and defending ourselves (by simply blocking blows or ducking or sometimes holding him briefly to remove objects from his hands) is attacking him. Completely irrational! Never did this before. And I should clarify that I don't feel victimized because I do stand my ground with him. This is what sets off the rages sometimes. But for the last 2-3 weeks when I stood my ground we were able to talk and did not encounter raging AT ALL. One day he's mad about getting off his video games after his designated time, the next day he's not mad like it never happened. Then that day he's mad about something else that he wasn't mad about before. None of it EVER makes sense and it cannot be purely psychiatric in origin. I believe there are emotional issues to address later or when he's lucid (which we do), but it won't work when you can't even talk to him or reason with him. He repeats the same thing over and over for hours. Nothing gets in. Losing privileges has no effect. We've tried. When he rages, there's nothing to do but to wait for it to pass and minimize injury.

 

Can you elaborate about why the ELISA test won't be effective? I want to pursue a better testing method if that is going to lead nowhere. Dr. R didn't give me any info to work with. When I asked which test would be better (ELISA or Igenex) he said it was a financial decision. He said we would still get a good idea from the ELISA. That was it. I asked if I should try the Igenex, too, to compare the results. It's a financial decision, he said. Maybe I didn't push hard enough. Always second guessing myself on everything. If you can help about the ELISA test, I would be most grateful.

 

Thanks,

SearchingMom

 

 

 

Have you tried any cognitive behavior therapy? It's a strategy that helps your child recognize the feelings as they're building and develop strategies to manage them instead of being victim to them. You can try naming the rage (we used Edgar the Angry) and then you and your son address "edgar" whenever he is raging. It turns the behavior into a 3rd party and gives you and your son a common enemy. It helps your son understand when you are angry at the behavior yet you can still love him. It also allows your son to see the behavior/illness as separate from himself (i.e. my behavior is bad, not "I am a bad person".

 

I realize that an 11 year old can be very strong. But if you don't establish yourself as the one in charge, it will only get worse as he gets older. During a rage, a person can be terrified at feeling out of control. If the people around him are also acting like they are not in control, it can make the fear and anger even worse. You cannot come across as a victim and you cannot put your parents in a position of being victims either. You have more than just your son to protect. Initially, this may mean restraining him, or at least physically protecting yourself, although I completely understand your reluctance to do so. But as I said, you are responsible for the safety of everyone. Your son's emotional well being is important, but it is no more important than the well being of the rest of the family.

 

I would strongly encourage you to work with a therapist trained in CBT (and ERP if OCD is also present). A person in a rage is often unable to control themselves. But after a rage, there need to be discussions and there need to be limits set. It can be ok for your son to get angry. But he should punch a pillow or a punching bag or go to a designated room and scream his lungs out. But if he throws something, or tries to injure someone or breaks a valuable, then there should be firm consequences, not negotiable. He needs to learn acceptable ways to vent anger. It's a life skill. The rest of the world will not tolerate having floppy drives thrown at them, regardless of any mental or physical illness.

 

I don't mean to sound so unsympathetic. I've lived with rages, albeit with a smaller child. But I've seen the damage an uncontrolled rage can do - physically and emotionally, both to the child and to the rest of the family. I know it's exhausting and without proper medical support, it's no wonder you're at the end of your rope. But one step toward recovery is in taking back control. It may take awhile to find the cause of all of this. But personal and emotional safety can't wait for that. If your son isn't normally like this, than build on his understanding when he's calm and explain that the rules don't change when he's angry. If you see him walking around with a "weapon" (which carries an element of premeditation), let him know he will lose privileges that matter to him. You will feel empowered and he will feel better knowing someone is taking steps to keep everyone safe and is in charge.

 

As a second step, I agree with the others. It doesn't sound like you've hit upon the right doctors yet. A doctor looking at your son's symptoms and not swabbing a red throat is not on board. We had our ELISA lyme results back from Quest in a week, not 4-5 weeks, but either way, ELISA isn't going to give you reliable results anyway. If you suspect Lyme, you really need to have lyme testing done thru a specialty lab. You can also test for yeast with blood tests and stool tests. But you need to be under the care of a doctor who understands what tests to order and what to do with the results. I'd suggest a lyme doctor from www.ilads.org (go to the "contact us" tab and send them an email with your location) or a DAN doctor (http://www.autism.com/fam_whatisautism.asp - in the middle of the page is a "find a physician" search bar). Since you've seen times where rages weren't like this, keep following your instincts to uncover the medical trigger. But in the meantime, realize you and your son can take steps (on your own or with a therapist) to take back control of what I know is a very scary and horrible situation.

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Dear peglem,

 

Thank you! Some really good concise ideas here. We had already been thinking of clearing out a room so he could go there to calm down. Just a little concerned we'll have to lock him in which could traumatize him more and make it good for only one time. We'll probably have to go in with him which would be better with no objects for him to use against us. My mom and I have tried to hold him, rock him, but he pushes us away, then he grabs us desperately for help but won't let us comfort him. We're going to try today to talk to him about a plan, but the exacerbation has been so huge this time, I'm not sure it will have any effect. And he wouldn't eat today what had the 5-HTP in it. He always finds a way to not eat it. I'm wondering if his body is rejecting it for some reason. It's so hard to know what to do without a good doctor to help.

 

The only thing that helps him de-escalate at all is promising not to hold him and saying we know he's really scared. It works for a few minutes, then he switches to something else he's upset about. Makes no sense. It's all so random, at least from where we are sitting. And I know what you mean about male energy. My dad sometimes makes things worse inadvertently. He has this stance that you shouldn't let an 11-year-old call the shots. And I fully agree, but I don't see how ds11 is really in control here. I have come to a place that we'll have to do what we can to keep ourselves safe and keep looking for help and support from a doctor, but we might be in a position to hold him sometimes when he gets way out of control. And he is very strong. He's already over 5 feet tall. Our new plan is sketchy at best. It's so hard having to adjust to the changes this situation brings on a daily basis.

 

Appreciate the support,

SearchingMom

 

 

Lots, tons of experience w/ rages here. What has worked for us, in a haphazard combination-do whatever works way:

 

1) have a discussion when child is calm @ how you know he can't help it when that happens to him, but you need a plan to deal with it when it does happen.

 

2) Make a safe place to rage- if he will go there until he can get it under control, there will be no need for hold down. I think many times, the hold downs do make the rager feel more threatened and can prolong rages.

 

3) My daughter is usually amenable to me holding her during rages- she will hit me when I do, but pulls me on top of her if I begin to back off. I can tell, though, even hitting me, that she is trying not to hurt me. Its like she is trying not to hit me, but needs to?! I've built up a level of trust w/ her- that she knows I'm trying to help her- when her dad does the same thing, because he hasn't worked on it with her as much, she tends to feel more threatened and it'll often get worse.

 

4) If you can possibly do it, debrief after a rage attack and see if you & your son can figure out what made the rage diminish-to identify tools or strategies to use next time.

 

A good website for tools/techniques for dealing with rage:

http://www.pivot.net/~childsafe/rage.htm

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Dear mama2alex,

 

I'm very much looking forward to whatever insights you have! Thanks for taking the time to let me know you understand with such short time on your hands.

 

Thanks,

SearchingMom

 

I just wanted to give you a virtual HUG before I go - I have to be somewhere in 10 minutes. I will post later - I have some thoughts on what you've shared. Hang in there! You are NOT alone.

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Can you elaborate about why the ELISA test won't be effective? I want to pursue a better testing method if that is going to lead nowhere. Dr. R didn't give me any info to work with. When I asked which test would be better (ELISA or Igenex) he said it was a financial decision. He said we would still get a good idea from the ELISA. That was it. I asked if I should try the Igenex, too, to compare the results. It's a financial decision, he said. Maybe I didn't push hard enough. Always second guessing myself on everything. If you can help about the ELISA test, I would be most grateful.

 

 

This may help-

Elisa Test

 

The Enzyme-Linked Immunosorbant Serum Assay is the simplest, least expensive, easiest to perform, and most common Lyme test ordered. It is a test based on detecting the antibodies that our bodies make in response to being exposed to Borrelia burgdorferi (Bb). It is a preferred test by laboratories, not because it is more accurate than other Lyme tests, but because it is automated. Many different patient samples can be performed by a single machine simultaneously. This allows for a faster turnover, less costs, and theoretically, standardized test results that are consistent from lab to lab.

 

We are told by manufacturers, health departments and clinics that the Lyme ELISA tests are good, useful tests, but in two blinded studies that tested laboratories for accuracy, they failed miserably. Lorie Bakken, MS/MPH, showed in her studies that there was not only inaccuracy and inconsistency between competing laboratories, but also between identical triple samples sent to the same lab. In other words, identical samples often resulted in different results! In the first study, forty-five labs correctly identified the samples only 55% of the time.

 

In the latest study by the College of American Pathologists, 516 labs were tested. The overall result was terrible! There were almost equal numbers of false positives as false negatives. Overall, the labs were 55% inaccurate. The labs could only give a correct result 45% of the time. You are actually better off to flip a coin!

 

In the quest for specificity, most ELISA tests have become so specific that the test may fail to detect antibodies from related strains of Borrelia.

 

What makes this test so misleading is that many doctors accept high readings as an indication that the patient must really be sick. This logic is exactly backwards. If a patient is really infected with lots of bacteria, that means they have a lot of bacterial antigens floating around in the blood that are complexing free antibodies. So, as free antigen increases, free antibody decreases. Since the ELISA test detects only free antibody, a negative test might actually indicate a more serious infection.

 

from http://www.canlyme.com/labtests.html if you want more info on ELISA and Western Blot...

 

The other problem with ELISA and standard Western Blots from the common labs is that they follow CDC guidelines and only screen for certain antibodies to lyme and ignore the ones that are most unique to lyme. This is because they were trying to develop a vaccine to lyme in the 90's and recommended that labs not look for antibodies that would show up in a general population that had been vaccinated. The vaccine failed but mostlabs still ignore the most tell-tale lyme antibodies. Labs like Igenex and Specialty Labs do screen for these specific bands of antibodies (bands 31, 34, 39) and that's why they're preferred by lyme doctors. But even these tests are not fool proof. Lyme remains a clinical diagnosis. Blood work helps but doesn't tell the whole picture. A doctor who says the difference between tests is only financial doesn't understand what the tests are measuring or how to treat lyme (IMO).

 

I'm sorry if I came across harshly before. I understand how painful this is and how impossible it feels to deal with sudden irrational anger. It sounds like finding the proper medical treatment will be key. Just keep yourself safe in the meantime.

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