Jump to content
ACN Latitudes Forums

Parenting through a Rage


Recommended Posts

I am sitting here with goosebumps up and down and tears sliding down my cheeks. I truly have felt so alone in all of this - thinking we were so far from the norm that no one could relate - and if they heard our story - they would run the other direction. All of your responses have been so powerful and so grounding. I think the best part of hearing from all of you isn't just the validation I so badly needed, but that with your validation I tap into another fresh well of patience, calm and understanding to offer my son in the bad moments. I'm sure he would thank you too!

 

I love the rock smashing idea, and the rewards following non-preferred tasks, and knowing that other people have siblings that go to their room and lock the door ;-} I also am relieved to know that some other kids ask to hurt or break things ... My son always says he wants to hurt something.. and he doesnt mean an inanimate object... When I offer a punching bag, pillow, couch, anything- it makes him even more frustrated. I've even offered him my arm to pinch and squeeze just so he can get it out. Ouch.

 

How did anyone find an ABA therapist to come into your home? I'm thinking along those lines.. but every time I get close I think that with all of our "techniques" - they only work when he is not in the bad PANDAS rage stage. He is an AWESOME little guy and can make use of so much of the techniques etc outside of PANDAS flares - but literally our breathing bothers him in this rage stage. He has a cold and woke up an hour after finally going to sleep and had a HUGE tantrum just in his bed b/c the sniffles were bothering him. then our breathing bothered him. Ugh.

 

I feel so comforted to know that other people have this same feeling about these time- I honestly feel they are traumatizing. I have no control over when they will happen, how, how to make them stop, and worst - to not be able to mother my child and "make it all better". And oooh the guilt I feel for my little one!! (6 as of yesterday).

 

I read about Motrin on this board so gave it first thing yesterday morning to see if it helped him tolerate his brothers birthday.... WORKED like a CHARM!!!! Why didnt I know this sooner!!!

 

Finally- yes he is on psych meds. Abilify (an atypical antipsychotic) and Prozac. Sad to say the Prozac has been on board for years, at a sub-clinical dose (1o mgs). Our psychiatrist who I really like has been really hesitant to take him off it. He is my only Dr. in Charlotte that believes in PANDAS.. so I'm going to bring him all this new info about the meds. Thank you for that :-)

 

I know I'm lengthy - but I'm gushing with gratitude to you all - Thank you... and I'm going to keep reading all the responses!!

 

Steph

Link to post
Share on other sites
  • Replies 35
  • Created
  • Last Reply

Top Posters In This Topic

 

 

 

Finally- yes he is on psych meds. Abilify (an atypical antipsychotic) and Prozac. Sad to say the Prozac has been on board for years, at a sub-clinical dose (1o mgs). Our psychiatrist who I really like has been really hesitant to take him off it. He is my only Dr. in Charlotte that believes in PANDAS.. so I'm going to bring him all this new info about the meds. Thank you for that :-)

 

 

 

Don't feel bad about the prozac. My dd (now 10, 64 pounds) has been on 10mg/day for over 2 years. We've tried to take her off a couple of times and had increased irritability. I have seen some papers that discuss that prozac is anti-inflammatory/immune modulating, so I wonder if that might be part of the benefit (and not just the psych. properties).

 

This is from Wikipedia (which has a terrible writeup on PANDAS btw.) on SSRIs. http://en.wikipedia.org/wiki/Selective_serotonin_reuptake_inhibitor

 

Anti-inflammatory and immunomodulation

 

Recent studies show pro-inflammatory cytokine processes take place during depression, mania and bipolar disorder, in addition to somatic disease (such as autoimmune hypersensitivity) and it is possible that symptoms manifest in these psychiatric illnesses are being attenuated by pharmacological effect of antidepressants on the immune system.[18][19][20][21][22]

 

SSRIs have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[23][24][25][26]

 

Future serotonergic antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[27]

Edited by EAMom
Link to post
Share on other sites

Steph,

 

I'm so sorry you are dealing with this. Our son has had occasional rages and these were absolutely the hardest thing to deal with. I don't have a lot of advice about how to parent through them. I just hung on for dear life and tried to keep him/myself safe, because it often involved threats of killing himself, threatening to jump out of the car, grabbing knives, and running into the street in front of our house. There have also been a few times when he hit or threatened me with a knife or fireplace tool.

 

We have had two high dose IVIG's now (Dec '09 and July '10) and are now working with a Lyme-literate doctor to treat Bartonella and determine whether he has Lyme, so things are much better for us and he hasn't had a rage in months. But if it ever happens again, I will be referring back to this thread for all the great ideas others have given!

 

What I wanted to address is your younger son. Our son is an only child, but I grew up with a brother (6 yrs older) who started having rages at 14 (and clearly had problems before that), so my childhood was extremely stressful and scary at times. His behavior was so out of control that he had to be hospitalized several times and I lost two best friends (one in 5th and one in 8th grade) when their parents realized what was going on. I have much more empathy for my parents and what they were going through now, and obviously I see it through different eyes. But I can see in retropect the things they could have done better. I was the "good" child who got good grades, always behaved, wanted to please them, etc. But I often felt that they didn't acknowledge my successes and were so busy "dealing" with my brother, that I was forgotten. I was also confused, scared and angry, but never expressed it until I became a teenager, at which point I became depressed, isolated, and blew my GPA, eliminating my chances of going to a top college. They never talked to me separately about what was happening (I don't think they were emotionally able to as we were often in crisis mode). I would recommend you start a conversation with your daughter about what's happening and talk with her openly on an ongoing basis. I would ask her how she feels when her brother is raging and brainstorm on things you/she can do at those times to help her feel safer/more in control/or whatever else she needs when things are bad. Try to find time to get her out of the house for one-on-one time with you - let her choose an activity that's special to her, giving her some control. And, if you can afford it, get her into a good play therapist who can provide her with some support, give her an opportunity to express her feelings about what's happening, whether through play or talking, and provide you with advice on how best to support her. We have our son (10 years old) working with a play therapist, and this is a very non-threatening way for kids deal with their feelings. He would shut down if anyone tried to ask him about "how he felt" but he's developing an easy relationship with the therapist, based on playing (and she has a therapy dog, which helps a lot too). Also, I occasionally meet with her and she suggests great strategies that I never would have thought of on my own.

 

I do think the "typical" siblings suffer more than parents know and, though its hard to do during the chaos, need help too.

Link to post
Share on other sites

Thank you so much Steph for starting this thread. Boy did this ever touch home. I feel like I could have written your original post and I was so eager to read all the responses. My DS(7) has regular meltdowns and tantrums. He has many Asperger-like symptoms, but they are inconsistent. When he was 3 & 4 he had serious daily rages and I was terrified. The rages don't happen very often now. The last one was in January (we hadn't heard of PANDAS then, but he was treated for strep throat a week after that rage). By the end of that rage I had a gouged kitchen table, a broken window, a busted lip, and bruises all over my body from attempting to restrain him (all over doing homework). While all this was happening my 2 younger children were running around, turning lights on and off, and screaming. I was completely unaware of them, focusing everything I had into getting DS(7) and myself through the moment in once piece. I only know what they were doing because I had the presence of mind to flip on my video camera and toss it on the counter. I can hardly stand to watch that tape. They were terrified. I was so shaken up and realized how poorly equiped I am to handle a true, completely out-of-control rage. I live in dread of another rage ever happening, but I also plan on it occurring some day.

 

We are 4 years into the mental health system - boy I wish we had heard about PANDAS sooner. One good thing about those 4 years, is that we have a mental health worker who is familiar with our situation. We also have access to a mental health crisis line which alerts our mental health worker to meet us at the hospital. If a serious rage ever happens again I will call the crisis line and then 911. I also realized I needed more support, not just for myself, but for the safety of our whole family. I opened up to 2 neighbours and was completely shocked to find out they are sympathetic and willing to help with my younger children on short notice. I have taken each of them up on it in the past 2 weeks during DS(7)'s screaming fits (which I don't consider rage, but still very difficult and disturbing). Yes, he has strep throat again. I also made the school well-aware that this could happen at school and even showed them some of the video. We worked together to make a plan for the school in case a rage happens there. I took all these steps in shock and disbelief, feeling strangely detached and wondering if I was crazy (post traumatic stress?)

 

Back in January I had no plan, no clue, no help, and was very alone. I couldn't even imagine someone else finding out how horrible things could get. Now I am no less terrified of the thought of a rage, but I think I am as prepared as I can be.

 

Peglem - thank you for posting that website!

Mama2alex - a HUGE thank you for helping me see through my younger children's eyes.

Link to post
Share on other sites

Wow. This is pure GOLD. Thank you so much. We recently hired someone to be with our family several days a week so that when my oldest son goes into rage mode, my youngest son can be taken care of and go someplace safe and fun for him. I'm also having her go with my oldest son when he's calm/amenable so I can have one on one time with my younger son. We do talk a lot about Ben's rages, brain sickness, and Asperger's, but I think you have really reinforced my feelings that he needs an outside person to be with as well. I want to be so aware of how this effects him and never minimize it or lose sight of its impact. He needs just as much attention as his brother...but man does the squeaky wheel get the grease.

 

Thank you again for weighing in on that - it really keeps things in focus.

 

Steph

Link to post
Share on other sites

Hi MegsMom - tried to PM you re: Charlotte docs but it says you arent able to receive them.... I will try to find the others you mentioned, or feel free to PM me! I would LOVE some Charlotte rec's etc; thank you!

 

Charlotte NC? We have decent doctors here - PM me or Suzan or MDmom if you need some names.

Link to post
Share on other sites

So many great ideas. For my DD10 rages were the worst symptom of PITAND. I would plop my youngest DD7 infront of the tv or computer and struggle to carry my raging PITAND DD to her bedroom. I would stay in the room with her with my back against the door so she could not open it. Luckily our cat is curious and usually came around. While DD was raging I would not make direct eye contact or talk but would calmly (or as calmly as I could with shaking hands) dress our cat up. Whatever was in reach. Doll clothes, even dd's underwear and socks on time. DD would eventually notice our kitty dressed in her underwear and you could see the shift in her face. Slowly she would calm and eventually she would start laughing. The whole episode would take about 1-2 hours before she was calm enough to leave her room. Occasionally she would have to complete a complusion before she was completely settled but at that point we could discuss what she was going to do. (Most of her complusions included "doing something" to her sister) Before I discovered the trick with our cat the rages would go on for 3 - 4 hours. She was treated for Myco P. this spring and summer and since then we have only had a few minor episoded which have not escalated!

Link to post
Share on other sites

Wow. Everyone here speaks the same language. Now, if we could only get some docs to understand this!!

 

I find it very difficult to know what to do during my daughter's rages (she's 8 and all muscle - she's getting pretty strong!). My husband and I are at odds on everything, from disclipining her to her dx - even though she had problems with strep, mycoplasma and lyme and is a classic PANDAS case, he is a doubting Thomas. I fear this may very well end our marriage. But I will continue to fight this fight.

 

My husband sees her as more controlling and spoiled, since transitions, and "no" and school mornings often trigger her rages. I try (and fail) to convince him that this is indeed part of the illness. He wants to try Tenex (I have it here but am very resistant to the idea) and and feels nothing else will work, even though Biaxin has worked in the past. This wreaks havoc on a marriage, no doubt. (Apologies.. I'm venting here!!)

 

It's so hard to discipline these kids! I agree with the statement to treat it like a seizure. Truly, these kids don't want to behave this way - but it certainly is trying, to say the least, on everyone else in the home. However, it seems to create a consequence also creates blame, and, let's face it, it's not their fault. However, no one should ever be put in harm's way, so re-direction, whenever possible, seems to be the best solution, as far as I see it. I think we all lose our patience now and again, though. We're not perfect - we're all human.

 

So, we are all in the same boat. I only wish we saw a shoreline!!

 

This morning, it's pretty cold here in PA, yet I couldn't get my daughter to put socks on for school. She has a summer dress on with crocs, and I decided to let her go, since I'm trying to pick and choose battles with her. However, it still was a 1 1/2 hour struggle just to get her dressed and out the door. And she left kicking and screaming. Once in school, she is actually shy, bashful, quiet, and a great student. No teacher would believe me unless I showed them a video that this child behaved how she behaves at home!! The only thing the school is aware of is her many absences - and the fact that she has those red circles under her eyes (starting in Oct like clockwork every year). Otherwise, she is very well behaved in school.

 

I'm looking into the Cunningham test, and trying to stay away from antibiotics (Biaxin worked wonders for her) until I'm able to get it done. However, I don't know if we'll make it without treatment much longer!!

 

Best wishes to you and everyone else going through this.

Noelle

Link to post
Share on other sites

I knew, in theory, that other parents were dealing with this, but I didn't realize it was so common in the Pandas population. I got to practice my parenting during rage skills just last night, which was a great let-down because I thought we were doing so much better! Mostly, I tried to stay very calm and not let myself get dragged into feeling the same out-of-control emotions as my son. (Years of therapy for me to be able to do that.) Like your son, momcap, this was over homework. I think my son was obsessing over having his friends back over to play some more--don't even get me started on them knocking at the door after we told them that he had homework to finish--and just couldn't let go of that thought. He had already played for a pre-determined amount of time, and if we "give in" he'll play until well after dark and then he really is too tired for homework.

 

I would offer some hope to the other parents with younger children. My son's rages started at about age 6-7, and he was way out of control back then. He was very violent to both himself, with the dogs, and to me especially. With many years of play therapy during which really analyzed what his feelings and emotions were, and drew out a plan for what he could do when he feels like this, he is at least able to communicate somewhat during a rage. For example, last night while writhing on the floor he was able to tell me that he tried to calm down but it just didn't work. He said that he has only a few seconds to try to stop the rage from the stimulus or thought to the loss of control (but that's a few seconds more that he used to have!) At one point he picked up a dining chair to lob and when I reminded him "no physical violence" (a mantra in my household) he chose instead to balance the chair on his head. It was touch and go for an hour last night--going between mini-rage and calmer or at least distracted. Anyway, years of therapy have allowed my son to communicate more during a rage and to attempt to calm himself down, if only by distraction.

 

Actually, typing this all out has made me see that we've come a long way in the past few years! Thanks for the free therapy, guys! :)

 

P.S. Another thing that might help some of you guys: When he finally got started back on his Algebra, he had me write at the top of the page "I am very stressed out about doing this homework." Somehow having it written down what he was feeling helped him to let go and get to work.

Link to post
Share on other sites

I am never sure if I should respond to these rage posts or not, as we had a younger child, and I am not sure if we are talking about the same thing or not. For us, all rage was related to being unable to carry out a compulsion, or an overwhelming amount of intrusive thoughts hit her and she could not handle it. This triggered a panic attack, which if you have ever had one, is a very very frightening thing, even to an adult. The panic attacks caused a fight or flight reaction which is very intense. Learning tools to deal with a panic attack, for both her and for us, was key to handling them - and once we learned to have these horrible feelings without reacting (as much), we could then see the complex and overwhelming OCD that was causing them.

 

We also saw a window of opportunity right before the rage started. Once she learned to communicate this, we found 2 things would work - one was an OT technique of squashing, which we could do at home will firm pressure & pillows. She would ask for this. The second was hanging her upside down or having her stand on her head. This would calm her enough that the panic would resolve more quickly. We also learned some techniques to explain the panic attack to her & then some physical activities that we could do during the panic, as once triggered they would take about 20 minutes to receed. Pretty much, we needed to "wait" for it to stop. We did things like running, punching a bed, yelling, talking about how it felt, using a clock to measure when it would end, etc. After she got really good at this (about 3 months of practice), we were able to learn breathing techniques which we did together - she is too young to do on her own. This helped to reduce the time of the panic attack.

 

Panic attacks are very frightening. The feel both physical and emotional. The rage that can result is astounding if someone is thwarted while in a panic. To imagine how this feels, close your eyes, and imagine that you are watching someone grab your child from the playground & run to the car with them. Now imagine the feeling of panic & rage - you start to scream and run towards them to stop it from happening. But someone - perhaps a policeman - holds you back and refuses to let you go after your child. That is truely how it feels inside a person that is having a panic attack. Like their life depends on an action - but they don't really know what it is or how to stop it. Awful.

Link to post
Share on other sites
Panic attacks are very frightening. The feel both physical and emotional. The rage that can result is astounding if someone is thwarted while in a panic. To imagine how this feels, close your eyes, and imagine that you are watching someone grab your child from the playground & run to the car with them. Now imagine the feeling of panic & rage - you start to scream and run towards them to stop it from happening. But someone - perhaps a policeman - holds you back and refuses to let you go after your child. That is truely how it feels inside a person that is having a panic attack. Like their life depends on an action - but they don't really know what it is or how to stop it. Awful.

Meg's mom, that was so well said! Thank you!

Link to post
Share on other sites

Hi Noelle,

 

SO true about the marriage piece, and the perspective differences we can have at some points. And man, doesn't the perspective or understanding we make of our kids behavior determine how we react to it? So hard when we arent on the same page.

 

I wanted to respond though to the Tenex - Last spring before we knew my son had Lyme and was the root of this latest exacerbation,we put him on Intuniv, which is a time released form of Tenex. It did NOTHING for the rage/inflexibility/non-cooperativeness. It *may* have even made it worse. Our psychologist (NOT our prescribing dr) swears that Tenex and Intuniv had made some of his clients really aggressive unless they went up to 10mg or so. We only did 3, at most. We took him off of it 6 months later once we discovered Lyme, and finally broke through our denial bubble about PANDAS. Truly, I kept conceptualizing that we were treating Asperger meltdowns.... maybe Intuniv would help in that scenario, but they certainly NEVER touched the PANDAS rage we were truly dealing with. It did make him more tired for a bit, and maybe slowed him? settled him? a bit.... not in a really bad way, but in an unnecessary way for him. If he had ADHD, it might have been helpful..but he doesn't ;-)

 

Anyone know if Abilify makes PANDAS worse?

 

Steph

Wow. Everyone here speaks the same language. Now, if we could only get some docs to understand this!!

 

I find it very difficult to know what to do during my daughter's rages (she's 8 and all muscle - she's getting pretty strong!). My husband and I are at odds on everything, from disclipining her to her dx - even though she had problems with strep, mycoplasma and lyme and is a classic PANDAS case, he is a doubting Thomas. I fear this may very well end our marriage. But I will continue to fight this fight.

 

My husband sees her as more controlling and spoiled, since transitions, and "no" and school mornings often trigger her rages. I try (and fail) to convince him that this is indeed part of the illness. He wants to try Tenex (I have it here but am very resistant to the idea) and and feels nothing else will work, even though Biaxin has worked in the past. This wreaks havoc on a marriage, no doubt. (Apologies.. I'm venting here!!)

 

It's so hard to discipline these kids! I agree with the statement to treat it like a seizure. Truly, these kids don't want to behave this way - but it certainly is trying, to say the least, on everyone else in the home. However, it seems to create a consequence also creates blame, and, let's face it, it's not their fault. However, no one should ever be put in harm's way, so re-direction, whenever possible, seems to be the best solution, as far as I see it. I think we all lose our patience now and again, though. We're not perfect - we're all human.

 

So, we are all in the same boat. I only wish we saw a shoreline!!

 

This morning, it's pretty cold here in PA, yet I couldn't get my daughter to put socks on for school. She has a summer dress on with crocs, and I decided to let her go, since I'm trying to pick and choose battles with her. However, it still was a 1 1/2 hour struggle just to get her dressed and out the door. And she left kicking and screaming. Once in school, she is actually shy, bashful, quiet, and a great student. No teacher would believe me unless I showed them a video that this child behaved how she behaves at home!! The only thing the school is aware of is her many absences - and the fact that she has those red circles under her eyes (starting in Oct like clockwork every year). Otherwise, she is very well behaved in school.

 

I'm looking into the Cunningham test, and trying to stay away from antibiotics (Biaxin worked wonders for her) until I'm able to get it done. However, I don't know if we'll make it without treatment much longer!!

 

Best wishes to you and everyone else going through this.

Noelle

Link to post
Share on other sites

Steph- I could have written your exact same post. I don't have any thing to really offer you. We are trying to get a diagnosis of PANDAS for our son. Waiting on our CamKinase kit right now. We just returned from DC where my son was given a complete neuropsychological evaluation. He was diagnosed Aspergers, very high functioning, mildly affected. He's about to turn 7. This all started on year ago this month. Just wrote this to let you know you are not alone. We, too, are struggling.

 

Cindy

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...