Parenting through a Rage

[tired mom]

I always found comfort listening to this song. Thought this was a good post to share it with everyone.

 

http://www.youtube.com/watch?v=mmfvaLKR6Is

[mbruin]

Ohhh.. this is such a wonderful song. I've not heard Sarah M. sing it before. Do you know the name?

I always found comfort listening to this song. Thought this was a good post to share it with everyone.

 

http://www.youtube.com/watch?v=mmfvaLKR6Is

[Worried_Dad]

This is "Do What You Have to Do" from the album Surfacing. Awesome song - I love Sarah's stuff!

 

 

Ohhh.. this is such a wonderful song. I've not heard Sarah M. sing it before. Do you know the name?

I always found comfort listening to this song. Thought this was a good post to share it with everyone.

 

http://www.youtube.com/watch?v=mmfvaLKR6Is

[emst]

That threat haunts my conscience sometimes, but it did seem to work for our son: it brought him back from the brink.

 

 

HTH Sometimes all you can count on is that deep down he knows you love him and that that love stronger than PANDAS. The not so empty threats are all you got -- been there -- we're all working hard to not need them. You get a pass.

[Priscilla]

We had VERY SERIOUS RAGE issues. My dh and I were covered in scratches and bruises for about 2 mos. She bit me, punched me, kicked me all day long.My dd 8 broke the glass off of our entertainment center, and kicked a hole in her bedroom door.I can not describe it any other way than it looked like possesion. We live in a townhome so I had to tell several of our neighbors what was happening, they were hearing it all the time. I know what you mean when you feel guilty, I could not always stay patient with that. I had to sit on her, restrain her, push her away when she tried to attack me, hold the door to her room. Anyway, I have to say IVIG is helping immensely, we have done 3 so far, and have 1 left next week. During those darkest months, my dh and I loved to listen to a song that just reminded us of who our little girl really was. Sorry I don't have a link, but you can probably google it, it would actually make me smile through all of the horror. It is called "patient with me" by a band called Wilco. Hope it helps. Alot of us know what you are going through, I am so happy to be seeing my real child again, I am not crying as often, but I still do, and I think it is mostly tears of greatfulness and fear. She is not 100%, but any improvement is huge when you are living the darkest days. My prayers go out to you.

[SearchingMom]

Hello all,

 

I’ve read the posts on this thread three times because we deal with rage every day. Thank you mbruin for your courage to post, and to everyone for sharing! I wanted to ask about rages when I first joined, but I was afraid nobody would understand. ☹ My ds11's rages are horrible: biting, scratching, kicking, head-butting, hitting, using an “evil” voice, punching, cursing, and all the while he cries, “Help me, Mommy” or “Why are you hurting me?” Afterward he never remembers hurting us (me, my mom, sometimes my dad). It’s making sense to me that his rages are like seizures. Every night all he can to do is argue and fight for hours before finally collapsing into sleep. Like something is preventing him….

 

I’m a single mom, and DS11 thinks I'm the problem. In May 2010 he started to attack me physically. Then, on Aug. 6th I put us on no contact to give me a short break. Before his rages were set off when I set limits or told him no, but now he can’t even hear my voice. I tried over the past weeks to reconnect with him but he goes into a panic and starts attacking me almost immediately. He says he can’t be calm if he has contact with me. He demonizes me, calls me horrible names, plugs his ears if I'm talking. He NEVER did these things before May 2010. My poor mother is trapped because she takes care of him exclusively and gets no time to herself unless I leave the house. DS11 hasn't attacked my mom as often as me, but when he has, and I go to help her, he loses it even more! So she asks me not to help because it makes it worse. My dad works out of town most of the time, so he hasn’t been around to help out very much.

 

We don’t have a perfect method of dealing with the rages, but my mom tries to avoid getting them started, so if he’s in a bad place, she doesn’t push shower or brushing teeth, doing usual chores, or adhering to getting off TV, computer games, etc. [she’s 64, so to keep her as safe as possible, it’s been our only option due to having no contact with me and my dad.] But most times it doesn’t matter; almost anything we do or say has triggered a rage. [One time I read the title of a chapter "wrong."] That’s why my mom and I are more convinced every day that this is caused by something physical or some chemical imbalance. DS11 used to be sociable, gentle, funny, kind, helpful, polite, curious. He was definitely a gifted kid. I almost can't even remember what he used to be like which always brings tears. He also just started puberty, and I've read that some kids have PANDAS onset with puberty.

 

A month ago we went to a dr who was supposed to know PANDAS (I found out he's treated only a few kids), but ds11's case is not "textbook," so the dr said ds11 does not have PANDAS. He didn't even consider the rages as a PANDAS symptom!! I told him about PANDAS kids on the forum who rage, but he dismissed it. Although he said we could do the Cunningham test, I was still really upset when we left, so I gave up. Now I'm thinking we should get the test done, but how to convince ds11 to have blood drawn again will be so hard.

 

I’ve read about co-infections and Lyme and related conditions, so I know it's possible ds11 could have other things going on. I think he probably has Lyme because he's had a dozen embedded ticks in the past five years, but I relate to so much in [undiagnosed] ds11 that matches what folks write about their diagnosed PANDAS kids. I hate not knowing what to do or what step to take next. Do I keep pursuing PANDAS, or do I seek out an LLMD? Or both? I have good insurance, but I don't make much money for traveling and paying without insurance. I desperately want my son back, but with so many possibilities, I don't want to waste time. Time is really critical, and I'm trying to trust my instincts. It seems every situation is a bit different for each PANDAS kid/family, so I keep telling myself we have to find the way that works for us, even if it might seem crazy to or wouldn’t work for others.

 

For now we’re trying natural treatments, one substance at a time, because maybe seeing the effects of each substance will point us in the right direction. It’s my firm belief that if we are on the right track, we will see some improvement. And so far these have yielded steady and clear results [in order of treatment]: B-complex vitamins, probioitics, extra thiamine, grapefruit seed extract [major herxing on higher doses, no herxing with steady lower doses], omega-3s, magnesium, and enzymes [3 days so far]. I’ve been learning about herxing, but Sammy Maloney improved very quickly on Augmentin if I recall correctly. [Did he even do any herxing?] So I think when a diagnosis is correct, the treatment will show clear results within a reasonable time.

 

I researched dilated pupils [ds11's symptom when raging] and discovered phenol poisoning/sensitivity. Phenol can accumulate in body tissues, and build-up of this substance can occur if the body doesn’t have the needed enzymes to eliminate it [which fits why his rages seem random, but I always saw a correlation between when he ate junk food and was “out of sorts.”]. And symptoms are a bit different when categorized as “sensitivity” versus “poisoning.” His symptoms match phenol poisoning closer than anything else (except for Lyme). So the longer his body ingests phenols [and salicylates], eventually they reach toxic levels. My mom keeps a food diary, including when he rages/argues, when he goes to bed/wakes, what he does during the day, etc. We've noticed a very strong correlation between when he has ketchup (tomatoes are very high in phenol), and raging within several hours. We've eaten organic food most of our lives, but phenol occurs naturally in many foods, like tomatoes, apples, berries, etc. A few days ago he started the chewable TriEnza enzyme product. We’re not sure if it’s working or not. He’s also been on grapefruit seed extract for a few weeks, but my mom was worried he wouldn’t take the enzymes along with the GSE, so we took him off because she didn’t want to battle him again (which I understand), but now I have to find another way to get GSE (or another antibiotic) in him. He’s raged more often being off of it. Ten days ago I started him (secretly in juice) on magnesium which is supposed to help Lyme and is a natural stress reliever. It has had a noticeable effect. But ds11 can taste it, and sometimes we can't get any in him at all [and his mood is worse]. Every day he refuses something, and since he can’t swallow pills, our natural treatment options are very limited.

 

Sorry this is such a long and random post! It's late, I'm weary, and I'm waiting for my mom to tell me ds11 is finally asleep. It's typical for him to get to bed at 1:00 a.m. or later. He's so hyperactive and argumentative at night [which I believe is also a Lyme symptom?]. I don't remember reading if PANDAS kids do this, too. And he wakes up around 8:00 a.m. every day, no matter when he gets to sleep. This has been such a nightmare all the way around. Anyway, thanks again to all of you for sharing. I’m sure we all wish there was a simple and quick answer to help our kids; instead it's a long and winding road - if we're lucky enough to even find any roads to take.

 

Hopeful thoughts to all,

SearchingMom