Son is raging

[cobbiemommy]

This will be long, so bear with me. DS, 13, has been treated for Lyme Bartonella, PANDAs, and Mycoplasma for two and a half years. He was being treated for Primary Immunodeficiency with IVIg until the RAT******* at Cigna decided not to pay for any of his IVIG even though it was precertified. We are in the appeals process right now. He is also being treated for possible mitochondrial disorder. He just got the prescription strength mito supplements this week. His Bartonella rash has really flared up in the last week. Could this be a herx, maybe, but it is H*** on earth for our household.

 

Every Friday, they play dodge ball at PE time. It seems a cop-out to me as far as lesson planning, but public school is what it is. DS, gets very riled up and competitive (sometimes nasty) when they play dodge ball. Today, another boy targeted him and kept gunning for him at Dodge ball and hit him at least once in the face and bent his glasses. My son complained to the teacher as he does often (not good, I know, but he does not do well about solving the problem on his own.) That is part of his OCD; fixating on someone who has "wronged" him. In a way it is a kind of evening up, you got me now I am going to get you.

 

Anyway, DS complained to the Vice principal and spent a lot of time in the office, getting worked up, going round and round in circles with this whole situation. They would not bring in the other kid, so the boys could work it out and now they are removing him from PE until they can think of a better alternative. This is his favorite class, so to be taken out of PE is horrible for him. He hates school for the most part, and that is one thing he looks forward to.

 

He has been raging since I picked him up at school. I'm not sure what to do other that DH is calling the school on Monday to talk about the situation. DS is a big boy, 5'9" and 200 lbs; he needs PE both for his health and to get some of his energy used up.

 

Could the mito cocktail be amping up his bodies response to antibiotics? We cannot do any kind of steroid taper because we have an appt with a new immunologist for a second opinion for the insurance and we need for him to be able to get a clear picture of the physical situation.

 

I just feel like no one cares about him and us; not the insurance company, not the school, not even the doctor since the insurance does not want to pay.

[rowingmom]

I would definately think the mito supplements could be causing a herx. Perhaps back off them a little and wean up, address inflammation and increase detox. I also feel like no one cares. We don't have insurance and can't afford IVIG, at least you live in a country where it is possible. I hope your appeals go through.

[tpotter]

I am just curious if you have tried doing supplementation/homeopathy, ART, etc? The reason I am asking is that I feel like these are the things that have helped my children "turn the corner" if you will. They are not cured by any means, but I do feel like (and so do they) that things have gotten better. Also, diet is a huge thing (one that my children...17 and 20...know they should be doing, but aren't willing to at this time (like an anti-inflammatory diet, such as no gluten, dairy, yeast or sugar.) IVIG and PEX certainly helped...A LOT! But, then they basically got "stuck" until we added in the alternative things. We no longer do IVIG, because insurance stopped paying for it, but I also feel like it wasn't needed anymore once we added in the other things.

 

Interestingly, we just did a viral panel...one that we have done before, and many of my children's and my IgG titers, which were extremely high in the past (and going up), have actually gone back to normal! We are still dealing with HHV-6 (DS20), Parvo (looks like I've been re-infected), and coxsackie (DS-17 and me), but other than those, the rest went back to normal. I asked our holistic chiropractor today if she had any idea what would have helped to make the viruses go down like they did, since we only started targeting viruses within the past 2 weeks, and she said that dealing with the immune system would have helped. Makes sense to me.

 

To deal with the immune system, we are doing ART (my 17 yo, and getting ready to start with the 20 yo), plus regular holistic chiropractics, and some additional supplementation. I have been having good luck with supplementation and acupuncture. I don't know if you can afford these, but it's certainly something to consider. At any rate, I truly believe that the immune system has to be supported, as does the gut (we are using a lot of probiotics.)

[LNN]

My son has the same sense of "injustice" and will fixate on being "wronged" - won't/can't let it go. While it is worse when he's flaring, it's part of his personality and always will be to some degree. Fortunately, my son isn't large in stature - about average - and doesn't get physical "revenge" but he will fume about it for way longer than most. A once or twice supplement dose of Gaba or tryptophan helps a bit. Deep breathing. Mostly what really helps is feeling understood.

 

I totally understand your frustration and agree that a better solution has to be found to not punish your son. It sounds like the other boy may have been baiting him, just "begging" for your son to respond predictably. Maybe try to help your son see that by reacting so severely, he's letting the other kid "win" and manipulate your son. He probably won't be able to be objective about it, but maybe the change in perspective and your son's competitiveness will help him not want to be "played" by the situation.

 

Being devil's advocate, I can see that the school needs to be cautious in letting your son, with his anger over the situation, back into the same situation next week. However, I also think that Dodgeball hardly encourages the kinds of behaviors that are politically correct these days. It's pretty much picking on the weakest, bullying with a few rules as window dressing. It doesn't belong in the school at all IMO. Your son was as much a victim (glasses bent) as an aggressor. Perhaps the best solution is to stop Dodgeball for everyone and have them do a more productive, less aggressive activity. Still physical but less prone to individual grudge matches. Volleyball, floor hockey...IDK.

 

I agree with rowingmom. Maybe back down on dosing of the mito cocktail, more detox...and maybe let him stay home next Friday or take him out for lunch or a bagel while the rest of the class goes to PE. Turn it into something good instead of a punishment?