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Shouldn't we see some improvement?


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Today I saw a therapist for the second time. Like all of you, I'm exhausted and needed to be able to see things clearly all around...The therapist talked with me about my daughter's situation and after a while asked if we had ever considered an rtc. I have talked with Rogers before.

 

Of course, I don't want to do that, but I don't know what to do to give her some relief and the rest of my family some momentary peace. We saw a Lyme doc in co on April 9, and she has been taking mepron, zitthromax, cefdinir, noni, mora, para a, nystatin, vira graphics, engystol, another parAsite med, and I probably forgot a few. NO CHANGE.

 

One of my friends has a daughter who had the same rage and clothing sensitivity issues, and they saw our doc in co. They never saw an improvement until after eight months when she was taken off of all meds and made a remarkable recovery.

 

But I am having such a difficult time believing that she is getting better since I see absolutely no change in her raging. She routinely wishes me dead, spits water for her meds in my face when I am trying to convince her to take them, calls all of us names, etc. I still can't get her to do anything at all and can't get her out of the house without an enormous fight that she doean't have anything to wear. She rips up everything that I buy her and calls me names for buying it. Then calls me more names because she doean't have anything to wear. Our house is screaming from the time she gets up until we go to bed (I can't get her to sleep, and melatonin and valerian root seem to have stopped working).

 

I saw a brief herx on cefdinir and another brief one on noni. Other than that absolutely no change.

 

Any ideas?

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Ugh. You poor thing. I have a very similar situation. My nerves are shot. Things that have helped for my girl...treating with Vancomycen and Amphoceterin for clostridia. Adding walunt oil for parasites. Upping probiotics and keeping yeast under control. She is off the antibiotics for a bit, since we didn't see any improvement. We will try some other combination after treating clostridia. Good God, I hope things get better for you!

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How does your daughter behave out in the world, away from her family - does she keep it together? if she has the inner resources to do that, maybe an rtc would be a viable option for her. I often wonder if the fact that I homeschool my daughter might inhibit her ability to keep herself together, even when she doesn't feel like it or think she can do it. She's surprised me in that regard. I wonder at what point my helping and bending over backwards, often at the expense of my mental and physical health, my relationship with my husband, friends and extended family is actually enabling the negative behaviors I see. Yes, I know my daughter is fighting an illness and deserves all my empathy and help, but am I doing her justice by relaxing all standards of character and decent behavior? Can she help just a little of how she is acting? Or not? I know I'm constantly re-evaluating how much to allow and when to put my foot down. Hourly. Daily. I just don't know. I do understand the place you're in.

 

Maybe and old fashioned list of all the pros and cons of an rtc might help. Then, you have to know that whatever decision you make, you have done the best you can do with what you know right now. Try to be honest with yourself about what you can live with in terms of behavior and what will put you under. I know this is incredibly hard to do and I don't want to be glib about it. When this stuff first starts, adrenaline keeps you going, doing research, learning to deal with the rages, fighting for your child. When the battle goes on and on, it's as if we're cycling through the five stages of grief over and over again: denial, anger, bargaining, depression and acceptance. It is mentally and physically exhausting.

 

When I was fried one night I turned on the tv and landed on a channel where Suze Orman was talking about people and their relationship to money. She framed the idea of generosity in a way I hadn't thought of before. She said people confuse giving and true generosity; the latter can only exist if the act is kind to both the recipient and the giver. I realize the analogy doesn't quite fly when talking about our relationship with our children, for whom we would do anything, but there may be a nugget in there worth considering for that relationship too. What value are we going to bring to them if we have depleted ourselves completely on their behalf? Again, no easy answers here but another point of view.

 

A big cyber-hug to you,

 

Heather

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my child went to Rogers for 4 months last year. it was wonderful for her and for us also.

however, a year later, she is back to square one. sadly, I think the most severe kids with pans may be battling this for a long long time.

feel free to PM me for more information.

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