whyPANDAS reacted to BeeRae22 in Tired-Tired-Tired
I feel the same right now. Dd10 is raging daily again and we're throwing more abx at her. I'm ready to quit all meds and see what happens. Thing is, she was 100% toward the end of summer until just before Christmas when we had strep in the house- been flaring since and getting worse. What does that mean after 2+ years of abx and treatment? We see a respected Pans/pandas llmd who, like you said, seems to care and I do trust, but he obviously doesn't know the sure answers--so am I making a mistake by keeping my 10 year old on all of these long term abx? And trying different meds and herbals all the time? Maybe the rages are my fault because I'm "letting her get away with things" like my mother and husband suggest lately? Do "normal" kids go into a full-on hitting, kicking, biting, swearing tantrum because they have to watch the tv in the bedroom instead of the living room because their sibling is watching something? Or because their father ate the first cookie out of the batch instead of them? (Granted, she was looking forward to this after her bath tonight, and the rest of us were waiting for her to get out too, but her father didnt know and accidentally ate the first one, and like an idiot, I pointed it out to her- not using my brain! She flipped the f--k out). Is she just "spoiled"? Thing is, she was fine a month ago! Down to 1 abx and NO problems..... How do you go from that, to psychotic over a cookie being eaten?? she threw out the batch, and raged for an hour- and when I finally told her father to get the Xanax, she cried and cooperated when she realized I was serious about making her take it (I've only given it to her once, about a year ago? She didn't like that- it knocked her in her little butt!) -- but what does that mean? That I "scared her straight"?
Not trying to high jack your thread- but I am in the same place as you tonight. Within the past 24 hours I've had 2 of my friends and my mother tell me that she "should see a therapist". That it seems "she can control herself". Maybe I'm the one that's crazy, I don't know. But I'm so sick and tired if more appointments, more money, more meds and no real answers. There aren't any decent "therapists" within a 20 mle radius that take our insurance that I've found... And you can't just go once to see someone-- you have to invest.... Time, money, emotions. I'm tired too. And so fed up with all of it.
whyPANDAS reacted to dasu in Tired-Tired-Tired
Very sad, but well put. It would be a good read for the naysayers if they would only read.
I have I have nothing to add except that we are in similar straights. The kids are still mired in flares, exhausted, stressed out and watching all of our money fly away. Our bodies feel like they are going to break, we hardly get any time to care for ourselves. Our marriage is stressed but OK, but then we don't do anything normal couples do. We are isolated. The people that should be there for us - doctors, insurers, family, friends, church - are absent. They just bring the added burden of trying to "get them on board". There are so many that offer authoritative plans without following through - but are always looking for money.
whyPANDAS reacted to HopeinHIM in Tired-Tired-Tired
Going on 3rd year with PANS/Bart diagnoses for now 12 yr old and Pandas/Babs for 22 yr old. Tired, tired tired! We have done months and months of anti B's and gone to top Pans docs here on East Coast and several diff LLMD/LLND from here to Connecticut. All sincere decent doctors who seem to care but make it clear that ultimately "they just know what works completely"! My kids are guinea pigs for meds, herbs and Methly supplements on a regular bases. It's Auto immune encephalopathy, post infection encephalopathy or reoccurring encephalopathy. Pick one or all of the above! We did Anti b's until their stomachs got turned inside out (stopped the raging thankfully) then moved to herbal Byron White and Buhner protocols. Some success here and there but ultimately life is gone as we know it. My eldest can only go to college a course at a time but even at that feels tired and overwhelmed often. My little one has had NO school for 2 years now and went form straight A student to IEP special Ed a few hours a week if we are lucky. No covered dishes come to the house only naysayers and doubters. Thankful we have a supportive family that listens with sympathic but helpless ears. It's best, I find it best to just keep quiet about the illness and be vague because most people don't understand and don't want to.Including the pediatricians or GP's that we need to go to on occasion. The best (worst) part is that most of the entire medical community involved in this mess have different strong opinions and protocols. One says, " take this and that", others say "oh no that's hard on kidneys or liver" another says" give methyl B's only to quickly say stop methyl B's. Treat parasites, don't treat parasites Blah, blah blah. I actually had a phone consult with our Pandas doc who very honestly admitted that all the anti B's may ultimately not be the best for the immune systems in the long run. That's after I spend $800 for the phone consult! He clearly admitted sadly that "he just doesn't have any idea in the long haul and that we are all in the genesis of this disease unfortunately . Forget the money we spend on all of the docs, meds and herbs. The marital stress it puts on us is unbearable. I attempt to go to Gym , pray , eat right and so on but what mom really wants to spend time on herself when her children are constantly telling her "I DONT'T FELL WELL!!!" I am thankful that the raging is gone but both children are NOT thriving they are just surviving! If I had unlimited resources I would keep going and never stop until they healed but we are depleted and need to make 2016 the year that we just adjust to the NEW NORMAL!!
Did I say I was tired?