Tired-Tired-Tired

[HopeinHIM]

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?

[dasu]

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.

[sf_mom]

Here is a great video on one person's success treating Lyme et al with alternative therapies. He is very relatable guy. My 11 year old son watched the video and loved it.

 

It is a hopeful story and puts forth some very affordable suggestions.

 

Edited January 21, 2016 by sf_mom

[BeeRae22]

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.

[HopeinHIM]

Beerae 22 I had a tough week so henceforth the venting! I can clearly say that therapy has helped my sons. Had to go through a few awful ones (tell your story and look at blank faces) before I found one that was willing to research, listen and with kindness and compassion take us on. i might suggest sitting down one day and call through your" participating therapist LIST" and one by one interview and see if they are experienced with the condition or even brain injury patients. You will go through the list fast bc most don't call back or immediately let you know that it's not their expertise. But the one that listens and is willing, may be the person who can help. Our children walk around with inflamed brains most of the time. They live in crushed glass rooms with their little feet bare. They walk through most days on a pile of unstable barrels and at any moment (like the cookie was eaten) the barrels go tumbling down and all breaks lose. I constantly educate our therapist. I found a great resource psychologist in NY state who was very helpful. She works with children/adults with Lyme and has lots of helpful suggestions. She told me to throw out all my old expectations and be flexible. I made copies of her paper and sent to the school and his therapist. My point is we are always educating ( professionals, family, friends and Doctors) bc WE are on the fronts waging WAR with our children against this disease. My son will also flip out if someone eats his ice cream. Entire nites are ruined because no pizza is left. BUT, BUT when he is not inflamed, he handles it fine and i use those times to quickly point out appropriate behavior and encourage. The raging or fragile times (and they are still around) I just do what I need to do to get by, keep peace and what not. Very easy for well intention-ed Mom's (I have one) and husband's to resort to thinking our children are normal and normal traditional discipline works. IT doesn't most times. They need love, kindness and compassion more than most because their brains have been hijacked and they are fragile little butterflies trying to "survive" childhood. The "picture" of us disciplining looks different. WE do have to direct and discipline YES but it's just going to look different with these kids. Some days they look like spoiled brats getting away with murder but those days are NOT the days you can reason with their broken brains. Even though my family lives with these children, I find that i need to constantly educate them as well. Everyone goes back to their lives, jobs and so forth but we (you and I) stay in the mess with the hurting children day in and day out: Celebrating the good days and falling off cliffs on the bad. So, Yes a therapist might be very helpful. OCD and rages come and go but a few strategies may be useful to learn with them for coping. I am backing off anti B and going Buhner herbs. Cant tell you if it is a good idea or not but it is where I feel led. Stay strong and know that your daughter IS IN THERE. WE just need to pray that some day these precious children return to us healed. Thank you for sharing your story and helping me to see I am NOT alone. God Bless us all!

[dcmom]

Hi ladies- you definitely are not alone. The good news, from where I stand, seven years from onset and diagnosis, is that even though my kids still flare, they are getting milder. We are going through an especially rough patch right now because both girls, ages 12 and 15 are flaring, and out of school due to ocd. That being said- the ocd is not impacting every minor area of their life. Seven years ago, when I brought my younger daughter to the doctor it was- wearing footed pajamas, no underwear and rubber boots (that is all she could wear), carried by myself or husband (most likely screaming, after attempts at escaping moving car), not eating, not looking at people, unbathed, just total "crazy" is the only way to describe it. There was no mistaking, we walked in and the doc knew pandas. Fast forward seven years, many flare-free years, many difficult flares, many types of treatment, to todays doctor trip. No one would ever know she has anything wrong with her. Bathed, dressed nicely, poised, impeccably behaved, cute, happy, out for lunch after, etc. She is having debilitating ocd, but it is restricted to a few areas of her life. So there is hope, if my girls continue down this path, their flares will be hardly noticeable in a few years. So hang in there and do your best- just love them- that is it.

 

That being said- I am tired too. It is SO hard to see your kids suffer. I worry about their self esteem. I worry about their future. I cannot work- had to quit a job that I loved- because with two, it seems that one is always either not in school or on the edge. I have gained weight. I am angry at my husband much of the time because he has the luxury of not "getting it" when he doesn't feel like it. (some days he blames them and me, mostly if he is stressed I think. He yells sometimes, even if it is ocd and not behavior- sometimes it makes me think HE has pandas too). I ALWAYS, every minute have to be the level head in the house. I have to do ALL research, go to all doctor appts (mostly alone), make all decisions. We have spent an unimaginable amount of money that we do not have. So I feel not only do my kids suffer with this illness and all it brings- but also we cannot DO vacations, broadway shows, pony leases, etc.- because the money for that is spent on treatment. We probably have averaged 5-10K per year for 7 years. In 2015 it was probably $25-30K, plus $10k for an attorney to deal with the school. And believe me, I am thankful we were able to spend all of this- but we are barely making it.

 

Therapy has been SO helpful- but to be honest I would probably not waste money on it unless you are going to the Rothman Center or Rogers. We have gone to Rothman several times, and now realize what a waste and money suck local therapists are. By us, there are NONE that you would want to see that take insurance. We have been trying someone now, but the way I see it, local therapists (not in an intensive program setting), have no fire under them. They figure they will work on issues over the next six months to year, while charging $165 per week. They will spend several appointments "getting to know the child", making lists, getting updates. All the while, in between weekly appts, the child is NOT FUNCTIONING. Don't see me for a pleasant 45 min and then give me a smile and say see you next week. It doesn't work. I really think our kids need QUALITY ERP done quickly- and that seems to be mostly only available in these intense programs. Our doc at Rothman knows he has the kid for 3 weeks, only, and he wants to just get in there and FIX it.

 

My kids were on daily antibiotics for many years, and off for many years. Being on or off has not really changed the course of their illness. I am happy that they are off, as I do worry about unintended consequences, but believe me, if they helped- they would be on them.

 

Both of my kids are on prozac. They have been for almost two years. We have had NO negative effects, and I potentially credit the prozac for really CALMING down the flare ups- as that did coincide. My younger daughter always had a baseline of being very shy, and somewhat anxious- the prozac made that go away (mostly). We are in the process of raising the dosage for both of them, in hopes it will touch the ocd.

 

It is so helpful to hear and share stories with everyone- it is hard to find others who really get it. If you are on FB- many pandas parents just shared photos of their pandas kids- and it really was beautiful and touching.

 

Take care!

[demeter]

I so empathize with you all! We were at our wits end and I am not sure how much longer we could have gone on in the same manner. We were all stressed, and our marriage was suffering. My husband and I even see the same on the Pans front, but my son's behaviors had hijacked the family. He is a Pans kids, we did antibiotics, steroids, and a T&A, which worked well for the first few years. Then when he flared again almost two years ago it was horrendous and nothing seemed to work. He has had combo antibiotics targeting strep, mycoplasm, Lyme, Babesia, and Bartonella. He has had 12 IViG's over a year from Dr B in Connecticut. He had been treated during that time by Dr M in Connecticut as well. Nothing seemed to help and he was either in a constant flare or herx from the treatments. His Pans behaviors became so bad at one point we thought he would end up in the psyche ward. He had intrusive thoughts, separation anxiety, rituals, unrealistic fears, eating issues, and on and on. He has never had tics. No Pans doctor ever suggested intensive CBT/ERP, I truly don't think they know how much or families suffer and tolerate.

We chased doctors, we spent massive amount of money, we altered our living situation and drastically changed the way we had been as a family, goodbye normal relationships. We were all suffering.

We did not know what to do so I contacted Rogers Behavioral Health in Tampa. I had seen it posted here a few times in the past and it really was the only thing left we hadn't tried! OMG, it truly saved our family, I mean it! I cannot thank the therapists and the program enough. This is a Pans friendly and knowledgeable clinic, that realizes appropriate CBT/ERP will help kids like ours regardless of the initial trigger. This therapy does not preclude one from continuing down the medical path at the same time, which we will continue to do. The other key is to make sure it is CBT/ERP, no amount of talking would have worked for my son. Also beware of the thousands of "CBT" therapists, of which only a few hundred are good! I wish CBT/ERP was included in the treatment hierarchy when a parent researches Pans. This traditional path works for many Pans kids, I can vouch for this. I only wish I had added this years ago, I can only imagine where we would have been both emotionally, medically, and financially. I know the logistics of 4 plus weeks in Florida seems like a nightmare, but with the results it is so worth it! I also don't think we would have had the same outcome with a few hours a week of therapy.

The best thing is my son feels so empowered, and confident that he can beat and has control over his "Pans" behaviors! He is no longer beholden to doctor after doctor visit, and treatment after treatment waiting hopelessly for something to work. I on the other hand am not so terrified for the next dip, I too have confidence and skills that we can handle Pans. The other awesome thing is he is medication free after all these years! He is only on basic supplements.

Please see my recent post about 100 percent ritual free in six weeks! I know this is redundant but I feel like shouting from the roof top, "run to Rogers". Truly after five years of up and downs and chasing Pans, we are finally where we want to be, my kid is 100 percent back to baseline and we have never acheived that before, although we got close but never here. I will keep you posted as to his progress. For now he sees a good CBT/ERP psychologist once a week as we don't want the behaviors to creep back. He is enjoying his childhood again! I chuckle to myself when I yell at him for stupid normal kid things! We are back as a strong healthy family!

[HopeinHIM]

Hi ladies- you definitely are not alone. The good news, from where I stand, seven years from onset and diagnosis, is that even though my kids still flare, they are getting milder. We are going through an especially rough patch right now because both girls, ages 12 and 15 are flaring, and out of school due to ocd. That being said- the ocd is not impacting every minor area of their life. Seven years ago, when I brought my younger daughter to the doctor it was- wearing footed pajamas, no underwear and rubber boots (that is all she could wear), carried by myself or husband (most likely screaming, after attempts at escaping moving car), not eating, not looking at people, unbathed, just total "crazy" is the only way to describe it. There was no mistaking, we walked in and the doc knew pandas. Fast forward seven years, many flare-free years, many difficult flares, many types of treatment, to todays doctor trip. No one would ever know she has anything wrong with her. Bathed, dressed nicely, poised, impeccably behaved, cute, happy, out for lunch after, etc. She is having debilitating ocd, but it is restricted to a few areas of her life. So there is hope, if my girls continue down this path, their flares will be hardly noticeable in a few years. So hang in there and do your best- just love them- that is it.

 

That being said- I am tired too. It is SO hard to see your kids suffer. I worry about their self esteem. I worry about their future. I cannot work- had to quit a job that I loved- because with two, it seems that one is always either not in school or on the edge. I have gained weight. I am angry at my husband much of the time because he has the luxury of not "getting it" when he doesn't feel like it. (some days he blames them and me, mostly if he is stressed I think. He yells sometimes, even if it is ocd and not behavior- sometimes it makes me think HE has pandas too). I ALWAYS, every minute have to be the level head in the house. I have to do ALL research, go to all doctor appts (mostly alone), make all decisions. We have spent an unimaginable amount of money that we do not have. So I feel not only do my kids suffer with this illness and all it brings- but also we cannot DO vacations, broadway shows, pony leases, etc.- because the money for that is spent on treatment. We probably have averaged 5-10K per year for 7 years. In 2015 it was probably $25-30K, plus $10k for an attorney to deal with the school. And believe me, I am thankful we were able to spend all of this- but we are barely making it.

 

Therapy has been SO helpful- but to be honest I would probably not waste money on it unless you are going to the Rothman Center or Rogers. We have gone to Rothman several times, and now realize what a waste and money suck local therapists are. By us, there are NONE that you would want to see that take insurance. We have been trying someone now, but the way I see it, local therapists (not in an intensive program setting), have no fire under them. They figure they will work on issues over the next six months to year, while charging $165 per week. They will spend several appointments "getting to know the child", making lists, getting updates. All the while, in between weekly appts, the child is NOT FUNCTIONING. Don't see me for a pleasant 45 min and then give me a smile and say see you next week. It doesn't work. I really think our kids need QUALITY ERP done quickly- and that seems to be mostly only available in these intense programs. Our doc at Rothman knows he has the kid for 3 weeks, only, and he wants to just get in there and FIX it.

 

My kids were on daily antibiotics for many years, and off for many years. Being on or off has not really changed the course of their illness. I am happy that they are off, as I do worry about unintended consequences, but believe me, if they helped- they would be on them.

 

Both of my kids are on prozac. They have been for almost two years. We have had NO negative effects, and I potentially credit the prozac for really CALMING down the flare ups- as that did coincide. My younger daughter always had a baseline of being very shy, and somewhat anxious- the prozac made that go away (mostly). We are in the process of raising the dosage for both of them, in hopes it will touch the ocd.

 

It is so helpful to hear and share stories with everyone- it is hard to find others who really get it. If you are on FB- many pandas parents just shared photos of their pandas kids- and it really was beautiful and touching.

 

Take care!

Hi. I wonder if there are any facilities like that in Tri Sate area? My one n is 22 and (pandas) and this might be useful IF it is covered under insurance. That's what everything comes down to now. I know we all can relate to spending 1000's and 1000's . Thanks for the hopeful post!

[dcmom]

hopeinhim-

 

I have found NOTHING- esp covered by insurance- comparable in NJ/NY area. UPenn has a program that sounds similar- they don't take insurance- and I think it costs $12k-WHAT! - yeah, they really want to help people.

 

However- Rothman does take insurance which has been a lifesaver for us. Rogers takes insurance also- they also treat young adults- I would consider looking into both Rothman and Rogers and see if one fits. Rogers has residential programs which some on this forum have done. Rothman may see 22yo, and you could probably find reasonable accommodations in FL.

[demeter]

Rogers took our insurance, Aetna, for their PHP (partial hospitalization program) that ran from 8:00 till 2:30 M-F. They also have an IOP (intensive outpatient program) that runs either morning or afternoon, for 4 hours M-F. This is in Tampa. They have a kid side and an adult side. Rogers residential program is located in Wisconsin. When I contacted Rothman I was told it was 1 1/2 hours M-F. We opted for Rogers, figured if we were going through all the coordination to get there we might as well go "all in". Dr Storch now runs Rogers, after being with Rothman. Both places are Pans friendly. Seeing how the full day went at Rogers we are very happy with our choice, as it allowed for kids to meet others, have fun while working hard. I also liked how much our family was able to participate in the process!

[Sirena]

Us too! This crap makes life So so crazy and draining. While we feel fairly supported, it's still unbelievably exhausting. It takes so much energy to keep it together while kiddo is raging over whatever triggered him. I just learned about how severe chronic pain can strain the adrenal axis and cause a cascade of health issues. It would be interesting to see if the family stress shows up in parent hormone levels or even our kiddos for that matter.

[michelleb]

We have only been in this marathon for 2 years - one year pre-diagnosis when my poor kids was told he was crazy and health with therapy, psych meds and CBT that did not really help because it was just not being done well if you ask means another year of being treated by a PANDAS doc.

Since being diagnosed we have tried lots of things and the rages and constant obsession with suicide seem to have passed (for now) but he is still crippled: unable to leave the house, dress, or interact with anyone other then his sister, my husband, and I.

 

We considered Rogers last year when we were extremely concerned we just couldn't keep him safe at home. The Miami program wouldn't take him and referred us to the residential program in Wisconsin. We never went - but only because I honestly couldn't figure out how to get him there. We have since gotten at appointment at the Rothman Center but I have had to postpone three times because again, I cannot figure out how to get him there. We are in a much better place now and I am hoping that as we continue to see slow incremental improvements I will find a way.

 

So my question to house of you who have done Rothman and or Rogers is whether we should try again for the Rogers Center in Florida with Sr. Storch since it is more intensive. They wouldn't' take him last year because he was just too sick - but he is better now so maybe a 4 hours program would be better than the 1 hour at Rothman. Or, maybe given how hard it is to get him to go anywhere, one hour is all he would be able to handle.

 

His deal is that he hates and distrusts all doctors (he has been down a pretty rough road), he has debilitating OCD and is terrified of leaving the house, extreme sensory issues - noise - talking, chewing, ticking clocks all drive him crazy, smell issues - very sensitive to smells and gags frequently, can't stand the feeling of clothes on his body so really refuses to wear anything but underwear, on and on. When we try to take him to appointments we really need to weigh whether it is worth the risk - he will jump out of moving cars bite scratch, punch, spit anything he can do to prevent you from takiing him in. Once he is there - he is self conscious enough with strangers usually that he cooperates - but the second he is alone in the room with my husband or I he goes nuts.

When we leave him alone and don't make him do things he is afraid of - he is sweet and cooperative.

 

Does anyone have experience or thoughts on this? Hee had rituxin a few months ago and I am seeing some improvements I am hoping it will get us well enough to convince him to try this - so assuming we do get him to go - I want to do everything I can to make it to the right program. I feel like I have one shot at this and if it goes wrong we will have a of a time trying anything else.

 

 

 

[MyLighthouse]

We too found CBT helpful. This was before we knew it was PANS. I don't know how or why, but our rages, anger, anxiety quieted so much. If you are in the Midwest, consider looking at Mayo Clinic in Rochester, MN. They have a one week intensive that takes insurance. We had people in our group from all over the country and Canada.

[4Nikki]

DD's flares are relentless. The family gets wreaked, but we manage to keep it going. DD has better self-control over her symptoms when I'm around, but she feeds the rage symptom when I'm not. I've concluded that we have to prepare for DD flares and setup a safe room. I've been looking for office cubicle partitions but haven't found any good cheap ones yet. Tired? well.... If I close my eyes for 5 minutes, I'm out. When I awake, I'm still tired and the stress doesn't pass. DD's tics are going about 3/4 speed, while I write this, and I'm ....

[rowingmom]

They walk through most days on a pile of unstable barrels and at any moment (like the cookie was eaten) the barrels go tumbling down and all ###### breaks lose.

 

My son will also flip out if someone eats his ice cream. Entire nites are ruined because no pizza is left.

 

You can't allow your children to eat pesticide laden crap and expect their gut microbiome (and thus immune response) to function.

 

Environmental toxins (and that includes vaccinations) are slowly killing our children and producing improper immune response. We all need to WAKE UP to this fact.

 

http://people.csail.mit.edu/seneff/

 

We need to detoxify them (see Gerson in the video) and support proper immune response using nutritionally dense diet (see Terry Wahls). The problem is not the infections.

 

Thanks for the video sf_mom. I have been contemplating prophylactic Sota for a while, even though DD14 is now totally asymptomatic.

Edited February 22, 2016 by rowingmom