"give up" post...locked ;)

[eljomom]

I appreciate many of the replies, and some I could have done without, but that's what this forum is for. To support, to vent, to listen.

 

Tampicc---you are one I watch often because of our similar situations with ticcers. I ask...maybe in a panicked way...because I go through periods where I am able to be thankful that she is happy more than not, and then I get thinking again about now it's NOT NORMAL...even if she is happy. I ask the same questions over and over, because philosophies and responses to treatments change like the wind on this forum. First it was Dr. K's 1-2 IVIG protocol...now it's Dr. B's repeated. Then it was a big LYME explosion. Just so many different things...and I want to know what is current. Maybe someone has more info. now, since all of this is truly just coming about.

 

When dr. latimer first mentioned steroids, or dr. t---can't remember....a BUNCH!!! of people here jumped quickly on that and STRONGLY recommended ruling out any chronic infections prior to steroids.....lyme, myco p, viruses....I got PM's galore on that one. So that gave me pause, and concern, about steroids. This forum has helped and possibly hindered (not BLAMING, for those who are jolted by that statement...I truly am not)...maybe "steered a different direction" would be a better way to put it....but that steered me away from trying steroids until ruling out infections, etc. "You seem so frightened and unable to make a decision." You are correct. I am. Frightened and unable to make a decision. Wow, hearing that out loud makes me really feel like a loser mom.

 

mama2lex---you are correct. I won't give up until I am told "there is nothing else to do"---and I have yet to be told that. It was just another of my many paralyzed, overwhelmed moments. Seeing another child with it in our family....it's just too much sometimes. And you are correct again, that the biggest thing for us, like you said, is to "not rock the boat." I know it can get worse....I've read about it here, and my heart breaks for those kids. At this point, my daughter has TS and ocd. What we will do about it, not do about it, or what caused it, remains to be seen.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[eljomom]

No worries tampicc! I really do try to keep close eye on your situation, and am happy that the ivig has helped you. I have gotten PM's from a few parents who's kids tic, and IVIG has not helped, nor has pex, so I keep a keen ear out. Thanks for all your encouragement you've given me in my crazy moments..which is pretty much on a regular basis. Starting to wonder if I'm an adult pandas-gone-wrong person. Seriously.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[nevergiveup]

Eljomom, I went thru what u are going thru many times, but clearly I can never give up. Its in our motherly nature to always be supporting our children. Weeding thru all of this great information on the forum is difficult and trying to figure out which apply to ur daughter is very complicated. Sometimes u feel like u are constantly making knee jerk decisions based off of ones person success. My suggestion to u is to find a doctor u believe in, one that follows your own philosophical view point (examples: aggressively treat, treat only in emergencies, limit treatment) one that has had successes, one that regularly sees ur child so u know they are the ones treating. I now monitor the forum on occasion to get the great info always supplied by the moms, I pass the info on to my doc if I feel they apply to us. I see my dd's doc every 9 weeks, and relay info and talk. I have never given up, but I have been able to relax a little since I know my dd is consistently monitored and followed by someone whom follows my philosophical medical approach that works for me. (My philosophical approach has always been to treat as aggresive as possible).

[eljomom]

No....not at all Used to exercise ever yday, haven't done it since this hit....almost a year and a half. I do NOTHING to take care of myself, good point!

 

Are you taking care of yourself? Sleeping well, taking some vitamins, eating well? I've recently upped my vitamins and am finding that B complex and zinc are really helping with my anxiety, stress, fatigue, lack of quality sleep, and staying healthy (not catching every cold).

You've got to be well yourself in order to help your child.

[Stephanie2]

eljomom, I have not really been following this or the other thread but I did see you mention that maybe you have pandas. I can tell you that I have suspected for over a year now that I have pandas, and recently was presented with some situations that absolutely confirmed in my and my husband's minds that yes I do have pandas and it can be quite debilitating for me until I get treated, just the same way it is for the kids. Just thought I would mention it, I suspect that many of us on this forum do have it and don't know it cuz we blame our own "fallout" on the kid's pandas...