Rage and lack of coping skills? Need advice/experiences for a relative

[lyme_mom]

I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

[adkmom]

I know this all too well. I have a ds5 dx with pandas and lyme (suspected Bartonella but unsure). However, it did not start with the rage/frustration (in our case). There was a sudden onset of tics and what we now realize was mild OCD behaviors. My son had strep but none of the symptoms of it. His rage/anger has subsided greatly after antibiotic treatment (he is also on ADHD meds which have helped)

 

 

 

 

I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

[rowingmom]

My DD10 had a lot of rage and a great lack of coping skills for the two years after a non-EM 1 inch diameter rash. Motor tics started soon after the bite, but pain symptoms did not develop for another two years. She had trouble concentrating and would become frustrated very easily, screaming and pounding herself if she had trouble with homework or piano lessons. The piano teacher could not put up with it, and we ended up quitting. Although she was do pretty well after she mastered a piece it was generally too frustrating to practice, and each session would end with screaming and crying. The raging increased with strep infections but subsided with Abx. She has greatly improved with lyme/bartonella treatment, although we do have rage/frustration setbacks with herx reactions.

Edited November 26, 2011 by rowingmom

[lyme_mom]

My DD10 had a lot of rage and a great lack of coping skills for the two years after a non-EM 1 inch diameter rash. Motor tics started soon after the bite, but pain symptoms did not develop for another two years. She had trouble concentrating and would become frustrated very easily, screaming and pounding herself if she had trouble with homework or piano lessons. The piano teacher could not put up with it, and we ended up quitting. Although she was do pretty well after she mastered a piece it was generally too frustrating to practice, and each session would end with screaming and crying. The raging increased with strep infections but subsided with Abx. She has greatly improved with lyme/bartonella treatment, although we do have rage/frustration setbacks with herx reactions.

THanks adkmom and rowingmom for your responses. I will pass this on. That is good to hear that the symptoms have improved with treatment.

[LNN]

While bartonella is a good one to check for, there are things beyond TBIs that should be considered as well - heavy metals, mold toxins and vitamin deficiencies. We have seen rages disappear in DS from bartonella/lyme and pyroluria tx. We are starting to see the mood swing, bi-polar she-devil anger subside in DD now that we are treating methylation issues with methyl-folate and other vitamin supplements.

 

Regardless of cause, cognitive behavior therapy has helped both my kids take responsibility for their feelings and how they allow those feelings to control their actions. I personally feel a two pronged approach - medical and psychological treatments - have the greatest impact.

[smartyjones]

hey lyme mom!! please update on your kids and yourself!

 

for the immediate coping skills, i recommend The Explosive Child by Ross Greene. he also has a couple web sites -- lives in the balance - is one. you can google search. there are techniques we have found successful in calming a rage. there is discussion of emergency problem solving in the heat of the moment and proactive problem solving.

we've had good success even in exacerbations. not always, but most times.

 

most importantly, it gives the parent something positive to do and a guide for not getting dragged into the rage/explosion. the kid is out of control, it's imperative the adult stay in control -- but when you're dealing with a rage, that's next to impossible without a clear plan of steps. i've posted ad nauseum about it -- you could search the pandas forum with 'explosive child' as the key.

 

these illnesses are such steps in learning -- i've only recently reached another level of understanding of the word 'unfounded' used often in symptom lists with fear for pandas. 'unfounded' should not mean irrational, unknown or without cause -- it may be that the level of the reaction is unfounded to the cause -- but there is more than likely an underlying cause that is quite reasonable. or even if it is not reasonable to the general public -- it seems so to the person with the rage or frustration. you need to deal with that to get to the real root of the rage.

[lyme_mom]

While bartonella is a good one to check for, there are things beyond TBIs that should be considered as well - heavy metals, mold toxins and vitamin deficiencies. We have seen rages disappear in DS from bartonella/lyme and pyroluria tx. We are starting to see the mood swing, bi-polar she-devil anger subside in DD now that we are treating methylation issues with methyl-folate and other vitamin supplements.

 

Regardless of cause, cognitive behavior therapy has helped both my kids take responsibility for their feelings and how they allow those feelings to control their actions. I personally feel a two pronged approach - medical and psychological treatments - have the greatest impact.

Thank you for your post. How did you test for the vitamin and mineral deficiencies and the mold toxins? We recently tested our family using Analytical Research Labs hair test to identify vitamin and mineral ratio imbalances. The report you get from their hair test is pretty interesting. Our chiropractor uses this lab. You order the supplements they recommend (which are based on your results, weight and age) and within a couple months you can get balanced. Apparently once you are balanced you start dumping the toxins. We are giving it a try. My kids have aluminum toxicity that I want to get rid of. My llmd uses Doctors Data but the ARL test gives you more insight into the results and also offers supplements customized to your results.

[LNN]

How did you test for the vitamin and mineral deficiencies and the mold toxins? We recently tested our family using Analytical Research Labs hair test to identify vitamin and mineral ratio imbalances. The report you get from their hair test is pretty interesting. Our chiropractor uses this lab. You order the supplements they recommend (which are based on your results, weight and age) and within a couple months you can get balanced. Apparently once you are balanced you start dumping the toxins. We are giving it a try. My kids have aluminum toxicity that I want to get rid of. My llmd uses Doctors Data but the ARL test gives you more insight into the results and also offers supplements customized to your results.

We did the Shoemaker tests http://www.survivingmold.com/diagnosis/lab-tests which tells you about your body's genetic ability to handle toxins (the HLA DR gene) from mold and lyme and whether either could be contributing to your issues. We used Labcorp for these.

 

We did a little mold hunting but didn't feel it was the "biggie" issue for us. So we tested for KPu/pyroluria using Vitamin Diagnostics. This turned out to be a huge issue for DS (an issue for DD too but less so). We saw big improvement in the first week of treatment.

 

Next I stumbled onto researching methylation and focused on what vitamins/minerals/amino acids have various cause/effects in the body. You can do genetic testing for various mutations that effect various points in the cycle. These genetic tests can be done by any lab (research Amy Yasko for a list of various genes that are involved in mehtylation - she has a lot to say about aluminum too). Given limited funds, I've focused on the points in the cycle that seem to be an issue for us and I've started adding supplements that impact that point. It's a little trial and error, but trying a bottle of niacinamide is cheaper than testing lots of genes. We just don't have the funds for chasing every trail the way we used to.

 

The approach you've taken might be just as enlightening. I'm just not familiar with it. The only caution is that the real issue with some of these deficiencies is that it's a deficiency within the cell that matters. Blood tests generally measure what's in the plasma, not what's in the cell. So in the case of KPU/pyroluria, my son has a normal zinc level in his plasma. But he pees it away without the cells being able to use it. So we never would have found the deficiency with a traditional vitamin/mineral test. It had to be a specific test for KPU, which looks for a byproduct of heme syntheis called mauve factor. I know infections can cause you to have similar "hidden" inter-cellular deficiencies. So my personal hesitation would be that you could miss some things. But...it seems every thing we've ever investigated have imperfect tests, so you have to start somewhere...I hope it gives you some really good results!

[lyme_mom]

hey lyme mom!! please update on your kids and yourself!

 

for the immediate coping skills, i recommend The Explosive Child by Ross Greene. he also has a couple web sites -- lives in the balance - is one. you can google search. there are techniques we have found successful in calming a rage. there is discussion of emergency problem solving in the heat of the moment and proactive problem solving.

we've had good success even in exacerbations. not always, but most times.

 

most importantly, it gives the parent something positive to do and a guide for not getting dragged into the rage/explosion. the kid is out of control, it's imperative the adult stay in control -- but when you're dealing with a rage, that's next to impossible without a clear plan of steps. i've posted ad nauseum about it -- you could search the pandas forum with 'explosive child' as the key.

 

these illnesses are such steps in learning -- i've only recently reached another level of understanding of the word 'unfounded' used often in symptom lists with fear for pandas. 'unfounded' should not mean irrational, unknown or without cause -- it may be that the level of the reaction is unfounded to the cause -- but there is more than likely an underlying cause that is quite reasonable. or even if it is not reasonable to the general public -- it seems so to the person with the rage or frustration. you need to deal with that to get to the real root of the rage.

Hi Smartyjones :-)! Thanks for your great info! We are all doing well and are still off lyme treatment now a year and four months. I will do an update in another thread. So how much of the rage is related to the infections do you think?

[lyme_mom]

How did you test for the vitamin and mineral deficiencies and the mold toxins? We recently tested our family using Analytical Research Labs hair test to identify vitamin and mineral ratio imbalances. The report you get from their hair test is pretty interesting. Our chiropractor uses this lab. You order the supplements they recommend (which are based on your results, weight and age) and within a couple months you can get balanced. Apparently once you are balanced you start dumping the toxins. We are giving it a try. My kids have aluminum toxicity that I want to get rid of. My llmd uses Doctors Data but the ARL test gives you more insight into the results and also offers supplements customized to your results.

We did the Shoemaker tests http://www.survivingmold.com/diagnosis/lab-tests which tells you about your body's genetic ability to handle toxins (the HLA DR gene) from mold and lyme and whether either could be contributing to your issues. We used Labcorp for these.

 

We did a little mold hunting but didn't feel it was the "biggie" issue for us. So we tested for KPu/pyroluria using Vitamin Diagnostics. This turned out to be a huge issue for DS (an issue for DD too but less so). We saw big improvement in the first week of treatment.

 

Next I stumbled onto researching methylation and focused on what vitamins/minerals/amino acids have various cause/effects in the body. You can do genetic testing for various mutations that effect various points in the cycle. These genetic tests can be done by any lab (research Amy Yasko for a list of various genes that are involved in mehtylation - she has a lot to say about aluminum too). Given limited funds, I've focused on the points in the cycle that seem to be an issue for us and I've started adding supplements that impact that point. It's a little trial and error, but trying a bottle of niacinamide is cheaper than testing lots of genes. We just don't have the funds for chasing every trail the way we used to.

 

The approach you've taken might be just as enlightening. I'm just not familiar with it. The only caution is that the real issue with some of these deficiencies is that it's a deficiency within the cell that matters. Blood tests generally measure what's in the plasma, not what's in the cell. So in the case of KPU/pyroluria, my son has a normal zinc level in his plasma. But he pees it away without the cells being able to use it. So we never would have found the deficiency with a traditional vitamin/mineral test. It had to be a specific test for KPU, which looks for a byproduct of heme syntheis called mauve factor. I know infections can cause you to have similar "hidden" inter-cellular deficiencies. So my personal hesitation would be that you could miss some things. But...it seems every thing we've ever investigated have imperfect tests, so you have to start somewhere...I hope it gives you some really good results!

Thanks for all the info LLM. I would like to do the kpu test b/c so many lyme patients have this issue. I think my kids had the hla testing with dr jones and it was negative. I think he does it on everyone. I don't know enough about all of this to know but it seems to me that the hair test we did suggest something similar. If you are not balanced with your minerals you will not dump toxins. My oldest has either too much or not enough copper (can't remember) and my other two have a sodium/potassium imbalance. They dont have any symptoms from it yet but I'd like to work on it if it helps dump toxins and strengthen the immune system so we never deal with lyme again. We tested our house for mold too (w a mold sniffing dog) just to be sure it wasn't a factor in our long lyme treatment. There was no mold issue but I wanted to check that off our list knowing how much of a factor it can be with lyme. This hair test says that fixing the imbalances are not what you would think..that to fix an imbalance of two minerals you add to the mineral that they have more of. It is not what you would think. The results of the hair test tell you what kind of oxidation rate you are (slow, fast or mixed), what stage of stress you are in adrenal wise (alarm, resistance or exhaustion), your glandular health, dietary patterns (sugar and carb tolerance, protein synthesis, digestion, etc., the autonomic state, the immune system, liver and kidney stress, inflammation, cell permeability, metabolic trends and eloctrolyte patterns. All of us need work according to the test so we are going to give it a try and see if we notice anything or if the hair tests show that they dump more metals after a few months. Seems like there has to be some overlap with KPU in this b/c KPU means you can't detoxify, right? That seems to be one of the goals of supplementation through this lab-to get balanced so you detoxify. Also the report says something similar to what you said-a high level of sodium in the hair does not necessarily mean you have too much sodium in your diet. Here is a link to the arl website and an article entitled "Insights into Children's Health." http://www.arltma.com/ChildrensDoc.htm. If we never had been sick with lyme I would never have gotten interested in all of this. Thanks again for the info!

[mama2alex]

Hi Lyme Mom!

 

Looking forward to reading your update. I'm sorry your relatives are dealing with this - its so hard. Our ds had difficulty coping with anger/frustration/transitions his entire life, then it escalated to more intense meltdowns and rages once PANDAS hit. He never had telltale pains of Lyme, but he occasionally complained of mild "growing pains." He also had stomach aches that became more frequent with PANDAS and headaches after start of PANDAS. After we started Lyme treatment, he had joint pains briefly with addition of Cipro about 6 months in. All of these symptoms have faded (no more rages, copes better with anger/frustration; no more headaches or stomach aches) with treatment for Lyme/Bartonella. Things got worse, then better for a couple of months, then worse again after first IVIG, but only Lyme/Bartonella treatment has given us sustained and continuing improvement.

[lyme_mom]

Hi Lyme Mom!

 

Looking forward to reading your update. I'm sorry your relatives are dealing with this - its so hard. Our ds had difficulty coping with anger/frustration/transitions his entire life, then it escalated to more intense meltdowns and rages once PANDAS hit. He never had telltale pains of Lyme, but he occasionally complained of mild "growing pains." He also had stomach aches that became more frequent with PANDAS and headaches after start of PANDAS. After we started Lyme treatment, he had joint pains briefly with addition of Cipro about 6 months in. All of these symptoms have faded (no more rages, copes better with anger/frustration; no more headaches or stomach aches) with treatment for Lyme/Bartonella. Things got worse, then better for a couple of months, then worse again after first IVIG, but only Lyme/Bartonella treatment has given us sustained and continuing improvement.

That's wonderful that your son is doing so much better mama2alex. Lyme sure can be subtle and sneaky and not obvious. What is so difficult about a symptom like rage is that it is not something people usually think of as a sign of an infection unless you are really aware of PANDAS, TBDs, etc. Thanks for posting!

[momcap]

I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

 

Rage and inability to cope with frustration was DS8's main symptom all along. He did have pains, but they were vague kid-type complaints - growing pains, tummy aches, that we didn't connect to the behaviour at first. The pains eventually became very severe, but not until at least a year after the raging started when he was 3. We saw at least a dozen docs who could find nothing wrong, and we were referred repeatedly to psychiatrists. DS ended up with an alphabet soup of psych diagnoses - the final one being mood disorder (bipolar). We tried psych meds, and loads of therapy for YEARS. Nothing helped. Until we found out about PANDAS last year. Initial low-dose antibiotics made an amazing difference, but only for a week or two. High dose antibiotics made him rage non-stop. THen we found out about lyme/bart/babs and started treatment in August. Now DS8 is not even the same kid. Even this past week my neighbour commented over the fence that he is so different - so relaxed and more social. He still struggles with anger and frustration occassionally, but he doesn't lose his head anymore. He is able to engage in therapy now. His pupils don't dilate into the "crazy cat eyes" that he had when he raged before.

 

I'm sure there could be many different reasons for the rage in your relative's child, but infectious-triggers would be high on my list of things to look into because of our personal experience. If I could go back in time I wish someone would have told me at the beginning to test for ASO, do Cunningham's, and test for lyme via IGeneX. We got very abnormal results on all these test, but none of the dozens of docs we saw ever thought to order these tests. I had to research and ask for them myself.

 

I hope they will find some answers and healing. There is nothing quite as terrifying as watching a child's uncontrollable rage.

[smartyjones]

Hi Smartyjones :-)! Thanks for your great info! We are all doing well and are still off lyme treatment now a year and four months. I will do an update in another thread. So how much of the rage is related to the infections do you think?

 

 

hmmm --- the extended million dollar question -- on the initial surface, i'd guess the rages are totally related to infection -- or at least, the process started by the infection. so - i'd say your relative should fully explore strep/TBI/myco and all the various infections. but with the thought that the infection is triggering some faulty thinking that can also respond, at least in part, to coping strategies such as ERP and learning new skills or strategies. with the disclaimer that sometimes, the brain is just not able to respond b/c it's so overwhelmed. i do think there are situations that the brain needs to calm first to be able to deal with the strategies.

 

as the infectious process goes on -- to what extent is the body affected in an autoimmune manner and what does that bring on? to me, that's the bigger one without the 'easy' answers. unfortunately, i fully realize the ridiculousness of stating healing these infections in and of themselves as the 'easy' answers!

 

for my ds, we're still in the process of peeling away the layers of infections. he's not 100% as far as infection, but was very much improved. we have seen a wild herx to an antiviral that included extreme behaviors that i attribute totally to infection. he's also only 7, we've been at this 3 years -- what inept processing and coping does he have from that that may be learned brain function but aren't infection driven?

 

with recent extreme stress, he went into a pandas-like exacerbation. we saw great results with motrin therapy. what does that show? clearly not so much infection. i think it's got to do with inflammation in the brain or of the BBB. but -- what is driving that -- stress or further infection?

 

just last night, i saw his interior nose inflammed and he's coughing and throat clearing this morning. i'll take him tomorrow to see if it's a sinus infection. could that have been what i was seeing that is just coincidental to extreme stress and it really is infection based?

 

so, just this morning, he was out of control with upset that his brother had an extra cinnamon roll more than him. only one solution that we get more. angry and inconsolable except for that solution. unable to really work problem solving model that has been a gem in last few months. 20 min after 1 does of motrin -- calm, interested in activities and doesn't care about the roll. when i asked if he had anything to eat this morning, "yeah, i had a cinnamon roll" with a smile.

 

how familiar is your relative with the infectious-neuropsych world? maybe you could suggest a mortin trial during time of rage or upset, just to see what happens. many pandas parents have success with it. that's not to say that if it has no effect, it's not strep or infection related.unfortunately, it's a stop-gap and not a long term solution, but can be helpful at times.

[lyme_mom]

I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

 

Rage and inability to cope with frustration was DS8's main symptom all along. He did have pains, but they were vague kid-type complaints - growing pains, tummy aches, that we didn't connect to the behaviour at first. The pains eventually became very severe, but not until at least a year after the raging started when he was 3. We saw at least a dozen docs who could find nothing wrong, and we were referred repeatedly to psychiatrists. DS ended up with an alphabet soup of psych diagnoses - the final one being mood disorder (bipolar). We tried psych meds, and loads of therapy for YEARS. Nothing helped. Until we found out about PANDAS last year. Initial low-dose antibiotics made an amazing difference, but only for a week or two. High dose antibiotics made him rage non-stop. THen we found out about lyme/bart/babs and started treatment in August. Now DS8 is not even the same kid. Even this past week my neighbour commented over the fence that he is so different - so relaxed and more social. He still struggles with anger and frustration occassionally, but he doesn't lose his head anymore. He is able to engage in therapy now. His pupils don't dilate into the "crazy cat eyes" that he had when he raged before.

 

I'm sure there could be many different reasons for the rage in your relative's child, but infectious-triggers would be high on my list of things to look into because of our personal experience. If I could go back in time I wish someone would have told me at the beginning to test for ASO, do Cunningham's, and test for lyme via IGeneX. We got very abnormal results on all these test, but none of the dozens of docs we saw ever thought to order these tests. I had to research and ask for them myself.

 

I hope they will find some answers and healing. There is nothing quite as terrifying as watching a child's uncontrollable rage.

Momcap, thank you so much for your great summary. I can relate to getting the wrong information from doctors! It is truly amazing how clueless most doctors are about these latent infections and what the symptoms look like. Getting the right combo of antibiotics sure seems to be critical for so many kids. Thanks again for your note.