Frightening personal article ultimately about PANDAS

[Tanaqui]

(Maybe.)

 

If your child gets sick, hope for something mechanical. Failing that, wish for something commonplace. This is a mother’s quest to find her daughter a diagnosis.

 

What a scary thing to read! That poor girl. Things seem to have turned around, though, so that's all right.

 

[wapiti]

.

Edited March 31, 2016 by wapiti

[Tanaqui]

*hugs*

 

I hope things get better soon, wapiti.

[Luckymama]

Oh wapiti :grouphug:

[goldberry]

Wow.  I had no knowledge about PANDAS, it sounds horrible.

[EmseB]

I identify with a lot in that article, not as a parent, though. At this point, I feel like it is pointless to go to the doctor unless I already know they will know what the problem is. And forget about them listening to a complete history when you think things might be related or connected to each other.

 

Oh and the part about how a well read journalist is a specialist in their field, but a well read patient is a nutcase who spends too much time on the internet? EXACTLY YES.

Edited March 27, 2016 by JodiSue

[NatureMomma]

I haven't read the article yet... My daughter had PANDAS for years. It was living h***. She's doing much better, but when she gets sick, we still see the symptoms Come back.

[MercyA]

Thanks for sharing this, Tanaqui. I wish more doctors were better informed.

[OneStepAtATime]

Thanks for sharing.  Scary.

[Soror]

Thanks for sharing, unbelievable in so many ways :(

[Tiramisu]

I don't know if I ever read a first hand account of a family with PANDAS. But this story is eerily similar to what we went through last winter and spring with my youngest dd. We even asked the same questions. Was it the fall when she hit her head? Was it the virus that hit on her birthday? We had the therapist who recommended we stop therapy because it was too traumatic for her. We had the psych eval that led nowhere. We also got a lot of bloodwork done, including tests for strep antibodies. Through that testing we found out she had had mono recently, which might have explained it, but the ped told us no meds would help for that. Out of desperation, I finally got a script for prozac but never gave it to her, because shortly after she started VT and she was inexplicably improving. I don't know why VT triggered a turn around but I do believe it helps the brain work better and creates new neural pathways. It was just a miracle that she went at all and that was only because dh took it over since I was more of a target of her negative feelings.

 

My oldest also went through extreme periods of separation anxiety that began after a bad strep infection that turned into scarlet fever because she never had a sore throat to alert us it was anything more than a typical virus. That was many years ago and while we were living abroad, so no one would have ever thought about PANDAS then.

[Murphy101]

It was an interesting and hard read.

 

I've often been terrified about what I'd do if something awful befell one of my kids. Like she points out, it helped tremendously that they were science journalist, so they had a significant leg up on research ability and foundational knowledge to start with. But even so, it was uphill all the way every day for everything. Even in a country with universal healthcare. Which turned out to be no so universal for her needs. The impact in employment too.

 

And in many ways she even got tremendously lucky.

 

Now picture a couple without that employment flexibility, no universal healthcare (tho that doesn't seem to have helped her much), lacking her medical connections and medical research background.

 

What picture do you get?

 

A very very scary and screwed family.

 

And yes to the way we as a society talk about illness and disease in general.

 

"She fought her cancer."

"She lost her battle."

"He isn't ready to accept treatment."

 

We send flowers and card and make hospital visits for gallbladder surgery. To let them know we miss them and are thinking of them for the few days to a week they are out of our routines.

 

But prolonged illness that doesn't seem to mean immenient death, mental or otherwise, gets very little support and becomes quickly isolating.

 

Her comment about how lucky they were their daughter was much loved at her school...that the teachers wanted her back..

 

That's all well and good I guess. But it'd be interesting to see if they would have been so accommodating if they had only known her has the child with mental illness. The child that they had to constantly accommodate and deal with. What if this couple had just moved there and this was a new school?

Edited March 27, 2016 by Murphy101

[TranquilMind]

Wow.  I had no knowledge about PANDAS, it sounds horrible.

Sounds eerily similar to what I have read about Lyme, except this girl's reaction was more mental than physical symptoms. 

 

Awful.  So glad she is better.  And doctors should totally listen to parents and do what parents tell them is necessary in regard to medications, in my view.  Parents should not have to fight for what they need, as these parents needed to fight for antibiotics. 

[Tanaqui]

Awful.  So glad she is better.  And doctors should totally listen to parents and do what parents tell them is necessary in regard to medications, in my view.  Parents should not have to fight for what they need, as these parents needed to fight for antibiotics.

 

Mmm. Lots of parents ask for ridiculous things, because lots of parents simply aren't all that well-educated. It's not completely unreasonable for doctors to defer to their medical knowledge rather than simply doing whatever the patients tell them - otherwise, why have doctors at all?

[TranquilMind]

Mmm. Lots of parents ask for ridiculous things, because lots of parents simply aren't all that well-educated. It's not completely unreasonable for doctors to defer to their medical knowledge rather than simply doing whatever the patients tell them - otherwise, why have doctors at all?

I assume you are quoting me, though since you refuse to attribute your quotes, despite repeated requests that you do so, no one else would know, nor would I be notified someone had replied to me, if I had not seen it.  But whatever.

 

Apparently, you haven't been through too many medical things in your family.  Consider yourself very lucky.  Those of us who lived it in various capacities know we have to take control and not simply hand the reins to doctors, as this woman found out too. 

 

My dying sibling once found an experimental treatment overseas (not easy in the days before internet) and had to lobby the doctors to try it.  They hadn't even heard of it.  It's amazing what motivation will do.  We just lived it again, this year - with another member.  No way were we just giving up passively.  Now this member is healed, praise the Lord. 

 

You had better take control and not be passive about it, is my long, long experience in several capacities.  YMMV

 

Glad it worked out for this family in the article, but someone above stated that well-read journalists were taken seriously, while well-read parents were often not.  Truer words were never spoken, and most good doctors will admit that. 

Edited March 27, 2016 by TranquilMind

[Farrar]

On a moms group I'm on a few weeks ago, someone posted about her daughter's very sudden descent into severe anxiety. There were tons of responses about dealing with anxiety before finally I was like, um, please check for PANDAS. Such scary stuff.

 

I'm definitely in the fight the doctors mode. I wish I wasn't... but too many bad experiences.

[Guest]

I assume you are quoting me, though since you refuse to attribute your quotes, despite repeated requests that you do so, no one else would know, nor would I be notified someone had replied to me, if I had not seen it. But whatever.

 

Apparently, you haven't been through too many medical things in your family. Consider yourself very lucky. Those of us who lived it in various capacities know we have to take control and not simply hand the reins to doctors, as this woman found out too.

 

My dying sibling once found an experimental treatment overseas (not easy in the days before internet) and had to lobby the doctors to try it. They hadn't even heard of it. It's amazing what motivation will do. We just lived it again, this year - with another member. No way were we just giving up passively. Now this member is healed, praise the Lord.

 

You had better take control and not be passive about it, is my long, long experience in several capacities. YMMV

 

Glad it worked out for this family in the article, but someone above stated that well-read journalists were taken seriously, while well-read parents were often not. Truer words were never spoken, and most good doctors will admit that.

And why do you think that is? Do you think most doctors are arrogant a-holes, just looking for a paycheck? No, for every well-read mother that comes in there are 6 total nut jobs who want to cure their cancer with hemp and coconut oil.

[Farrar]

And why do you think that is? Do you think most doctors are arrogant a-holes, just looking for a paycheck? No, for every well-read mother that comes in there are 6 total nut jobs who want to cure their cancer with hemp and coconut oil.

 

So then they treat every parent and patient pre-emptively like they're trying to cure cancer with coconut oil, at least in my experience. I know they deal with idiots, but it's not an excuse for not taking health concerns seriously. Last time I went to the doctor I said, "These are the symptoms I'm experiencing." You know what the doctor said, "No you're not." And left the bleeping room.

Edited March 27, 2016 by Farrar

[TranquilMind]

And why do you think that is? Do you think most doctors are arrogant a-holes, just looking for a paycheck? No, for every well-read mother that comes in there are 6 total nut jobs who want to cure their cancer with hemp and coconut oil.

That's a stupid comparison, as you well know. No one is lobbying the doctor to write prescriptions for hemp or coconut oil.  I think you might not understand how this works. 

 

 

I'm not talking about nutcases who don't want their kids to be healedor want to heal them only with things outside of medicine (in which case the point here would be moot as the person can acquire whatever item he wishes to try, at least right now).  I'm talking about parents who can't get a doctor to treat for Lyme, for example, because it is "controversial" to give a month of antibiotics to a person with every symptom, who didn't happen to have the bullseye rash.  This has happened to lots of people.  Read about it.  Or cases like this mom in the article where she has to go out of state to get a simple couple of z-paks to treat her kid before trying the much more invasive IV treatment.

 

This is so ridiculous.  Clearly this mom was well-educated on the issue and legitimately seeking answers and wishing to try easier things before harder things, not asking for "hemp and coconut oil" as you state so dismissively. 

 

Being a well-educated parent who will know every single symptom and have read every single paper out there before entering a doctor's office on an issue, I know I expect better than this, and so did this mom in the article.  And she deserved it.    I don't even know how one can argue against this, but I'm not interested in continuing it today. 

[Murphy101]

I also thought it was chilling how even though she knew better, she definitely hints at being very nervous about being accused of child abuse for disagreeing with professionals. Professionals who were basing their opinion on very little actual facts related specificly to her dd. Professionals who even refuse to state where the line is, because often the line is very blurry in these cases.

 

I think lots of parents worry about that. With reason.

 

Otoh, we are told being informed about our own and our children's medical care is THE best way to take care of them and make decisions about their care.

 

But if we actually try to do that? What the hell kind of abusive nut job are we to dare to question the professionals? Maybe Tptb just need to step in and make the decisions for us....

Edited March 27, 2016 by Murphy101

[Murphy101]

Yeah.

 

In this case she was lobbying for antibiotics.

 

Not coconut oil.

 

I think if patients are expected to be understanding that doctors professionally treat all clients like nut job morons, then yeah, they are just going to have to be equally understanding for why their patients view them as incompetent assholes.

 

Personally I don't think that's conductive to anyone on either side, bc in theory they are supposed to be on the same side of healing a patient.

 

I'm well aware how far afield of reality it often seem that theory is.

[Tanaqui]

That's a stupid comparison, as you well know. No one is lobbying the doctor to write prescriptions for hemp or coconut oil.  I think you might not understand how this works.

 

Well, I can see the pediatrician's point of view. Parents ask for antibiotics all the time for disease that don't require them, and overuse of antibiotics is a serious problem.

 

The pediatrician had never heard of PANDAS, but did see that the daughter had a history of anxiety. (A bit of reading shows that a family history of anxiety and/or depression is common in these cases, and no doubt so is an individual history of same.) Then he called some other experts and was told that PANDAS is a new and super-controversial diagnosis. Nobody, not even the people who believe in PANDAS, could explain to him a mechanism by which antibiotics, after the original infection is gone, could reduce symptoms, but he did agree to give antibiotics for one round in case the infection wasn't gone - obviously, something was still going on with that ear.

 

From his perspective, a request for more antibiotics is almost as strange and novel as a request to treat cancer with coconut oil. And indeed, the writer of this piece notes that her daughter didn't exactly regress between the first and second round of antibiotics (that is, the first and second round after the initial infection). I'm not saying that the doctor's conclusion is correct, but I can understand why he might be reluctant to try a new and unproven technique (even among people who accept PANDAS as a valid diagnosis) on a disease he had only recently heard of and that most people thought was just code word for "hypochondriac helicopter parents".

 

I don't know what the solution is here. Doctors can't spend all their time doing research, after all - if they did, they wouldn't have time to be doctors. And while greater patient access to research does help many people come up with diagnoses they would never have gotten before... it also allows a lot of people to spread truly crackpot ideas around that deceive the gullible or just desperate.

 

I know that it would have helped, a lot, if any of the doctors they saw had been willing to sit down and take a full case history. That's a pretty strong indictment of their medical ethics right there. But again, it's not their fault that they have other patients to see and other things to do.

Edited March 27, 2016 by Tanaqui

[EmseB]

The thing is that in this case, the doctor wouldn't even do the swab or culture to see if antibiotics are necessary.

 

Much like what farrar said above, I find doctors will, in general, be quick to even dismiss the possibility that the patient could be accurately describing their symptoms and circumstances if it doesn't fit some preconceived idea of how a case "should" present.

[Murphy101]

Doctors prescribe medications for off label uses every single day.

 

They do it regularly without any medical evidence or personal knowledge of why it has the desired effect or even if there are long term side effects. Sometimes it is controversial, which doesn't make it illegal, but usually it is not controversial at all in and of itself.

 

This is especially true of the care of mental illness in general and especially of minors. Two groups it is very difficult to do large studies on or long term experimentation for ethical reasons.

 

It's not a new or even controversial thing for doctors to do. Because sometimes the explaination of exactly why and how a medical condition works and thus exactly why and how something does or does not work is not knowledge we have yet.

 

I suspect that one day we will learn that some people have genetic markers that make them more suseptable to some things than other people and treatment will be more easily targeted. Or maybe we will learn that there is a combination of factors than when joined cause a major problem for some people.

 

As for a dr not knowing that antibiotics are in fact routinely used for more than fighting infection, I was stunned to read that part bc I have known that for... Gosh decades? I've heard of lots of cases where doctors routinely prescribed antibiotics of injected antibiotics into patients for reasons other than infection fear, tho that's a nifty bonus too.

[Murphy101]

Doctors seem to be under the misguided theory that medical science is an if then equation.

 

If all patients must present in ___ manner then do ____.

 

But then when a patient does not present in that manner the dr just has nothing to do. He just looks at them like a zebra walked in and he only knows how to treat horses.

 

And what always gets me about that analogy is that zebras ARE horses.

 

It's no different than a vet who treats all dogs like a Weiner dogs and then says to the random English mastiff that comes in that they are crazy because they don't present like Weiner dogs.

 

Btw, I have never met such an incompetent vet. For the most part, I'm usually really jealous of the medical care my pets can get and often joke that I kinda wish my vet took human patients.

[wapiti]

.

Edited March 31, 2016 by wapiti

[Tanaqui]

I DO think that a good doctor has gotten over his or her anti-mother bias. Actually, it's a pretty good test of a GP - do they listen to you and take your concerns seriously as a mother ? If not, find another GP.

 

That's why I like our pediatrician. I can go in and say the most ridiculous things, and he never lets me know he thinks they're ridiculous. He always takes my statements seriously, and sometimes I *know* they're ridiculous things to say, like "I think this kid who is showing no symptoms whatsoever has strep". (She DID have strep, as it turns out, and yeah, she was completely asymptomatic. This was the case that convinced me to order my own strep tests, though, because I felt like a moron just making the appointment. This wasn't the doctor's fault, he was a professional even though I felt silly.)

 

Doctors prescribe medications for off label uses every single day.

 

Maybe not this one. Or maybe in this province they're making a big push not to overprescribe antibiotics, so that's always his primary concern when doling them out.

[OneStepAtATime]

At this point, I wish this condition were only about antibiotics.  Unfortunately, it can get way, way, way more complicated than that, though I don't have time to elaborate right now.  The big picture involves the fact that the nervous system and the immune system are connected (one such connection was only published last summer, the lymph vessels to the brain, quite a paradigm shift).  The little picture goes beyond germs, antibodies and molecular mimicry with the basal ganglia; it seems to go all the way down to processes involving intra- and extra-cellular Ca2+ and the hexosamine biosynthesis pathway, among many, many other things (why the elevated CamKII, e.g.).

 

We were set to be enrolled in a new clinical study we've been waiting months to begin (not for antibiotics - got plenty of those).  We found out last week that corporate restructuring means the study has been put on hold indefinitely.

:crying:   I am so sorry Wapiti.   :grouphug:  :grouphug:  :grouphug:

[Tanaqui]

At this point, I wish this condition were only about antibiotics.  Unfortunately, it can get way, way, way more complicated than that, though I don't have time to elaborate right now.  The big picture involves the fact that the nervous system and the immune system are connected (one such connection was only published last summer, the lymph vessels to the brain, quite a paradigm shift).  The little picture goes beyond germs, antibodies and molecular mimicry with the basal ganglia; it seems to go all the way down to processes involving intra- and extra-cellular Ca2+ and the hexosamine biosynthesis pathway, among many, many other things (why the elevated CamKII, e.g.).

 

We were set to be enrolled in a new clinical study we've been waiting months to begin (not for antibiotics - got plenty of those).  We found out last week that corporate restructuring means the study has been put on hold indefinitely.

 

Oh, no. I'm really sorry to hear that.

 

[Murphy101]

As someone whose life depends on antibiotics being effective, it never bothers me to hear that doctors are being super cautious with prescribing. If they'd been that cautious for the last few decades, we wouldn't be in the resistance emergency we're in now.

 

I haven't read the article. It's obvious that garden variety illnesses take less time to diagnose. And more unusual presentations take longer. I had chronic pain for 3 years that was unable to be diagnosed or treated - after the third year, a paper describing my symptoms, cause and treatment was published, and luckily, my GP just happened to have read it. And with treatment, the pain was gone in 8 weeks.

 

The doctors weren't lying to me or mistreating me for the previous three years though.

 

Health is a difficult field. Diagnosis is not always easy, even for the best of practitioners.

 

I DO think that a good doctor has gotten over his or her anti-mother bias. Actually, it's a pretty good test of a GP - do they listen to you and take your concerns seriously as a mother ? If not, find another GP.

 

In any case, not taking mothers seriously isn't a problem confined to GP's.

I actually think the mom in the OP article got treatment very quickly. Less than a year. That's like a miracle for treating mental illness in general, not even going into wrong dx or anything. Most people newly dx with mental illness go through a very long and arduous time of desperately trying to seek the right treatment and the right balance of treatments.

 

To me, it wasn't misdiagnoses that was the highlight of the article.

 

It was how very little help there is for anyone who doesn't fit the IF/THEN equation. Even with a medical journalist tenaciously fighting for her care, it was really really hard. There just weren't any resources open to her really.

 

I can totally see how many caregivers of loved ones in these situations could not have managed to do all that. And to do it for YEARS.

 

Because really she got tremendously lucky. She found answers and for the most part a CURE.

 

Now imagine she hadn't. Imagine her dd had some unresponsive to treatment mental illness and she didn't find a cause or a remedy. And so she had to do what she did, constantly seek and constantly fight for help and answers for years. Look at how it left her feeling after 6 months.

 

To me, that's the real cautionary tale to the story.

Edited March 27, 2016 by Murphy101

[wapiti]

ETA, for purposes of understanding, it can be thought of as rheumatic fever of the brain, though that is an oversimplification.  For those interested in getting into the weeds, an intro can be read here:  https://www.ncbi.nlm.nih.gov/books/NBK333433/

Edited March 31, 2016 by wapiti

[G5052]

Idk. Chronic illness may have left me slightly callous, because that's just what happens with unusual presentations. It takes a long time, you need to advocate a lot, it exhausts you and your entire family, treatments have crappy side effects, and a cure is a pipe dream.

 

Yes, it is terrible for quality of life.  But yeah, it happens. And it doesn't always happen because the medical profession sucks. Sometimes it happens because that's the nature of the beast, kwim ?

 

I agree treatment in less than a year is actually pretty good going. My best friend has been engaged in the bolded for the last four years, so I don't have to imagine it, I see it. 

 

Not PANDAS, but we live in that world. Unusual presentation, no cure for the last twelve years. Even the nationally-ranked doctors can only do so much.

 

It was good article in that it showed how consuming these things can be. People have no idea what it's like to live amid all-consuming medical issues for years and years. She's brave to be this open about it.

[Mimm]

Fascinating. And terrifying.

 

She's right about how merciless people are about "misbehaving" children. I remember seeing a video of a child pitching the mother of all tantrums in the back seat of the cat. It sounded like what the article described about driving her daughter to the group therapy session. The comments on the video were a bunch of people calling for the child to be beaten into submission. I was sickened at how many adults can see a terrified, out of control child, and the only thing they want is for the child to be hit.

[Tiramisu]

Indeed.  We are 23 months in.

 

ETA, for purposes of understanding, it can be thought of as rheumatic fever of the brain, though that is an oversimplification.  For those interested in getting into the weeds, an intro can be read here:  https://www.ncbi.nlm.nih.gov/books/NBK333433/

 

My simple understanding is that the strep triggers what basically becomes and autoimmune disease. So the original trigger is often gone even before the neuropsychiatric symptoms emerge.

 

There's also a push to not use PANDAS in favor of PANS because PANDAS is strep specific but the same reaction could potentially occur from a number of illnesses, like mono or the flu.

 

When we were going through our ordeal, I spoke with a developmental pediatrician about what was going on and her said mono can definitely affect the brain.

[Tiramisu]

As someone whose life depends on antibiotics being effective, it never bothers me to hear that doctors are being super cautious with prescribing. If they'd been that cautious for the last few decades, we wouldn't be in the resistance emergency we're in now.

 

I haven't read the article. It's obvious that garden variety illnesses take less time to diagnose. And more unusual presentations take longer. I had chronic pain for 3 years that was unable to be diagnosed or treated - after the third year, a paper describing my symptoms, cause and treatment was published, and luckily, my GP just happened to have read it. And with treatment, the pain was gone in 8 weeks. 

 

The doctors weren't lying to me or mistreating me for the previous three years though. 

 

Health is a difficult field. Diagnosis is not always easy, even for the best of practitioners.

 

I DO think that a good doctor has gotten over his or her anti-mother bias. Actually, it's a pretty good test of a GP - do they listen to you and take your concerns seriously as a mother ? If not, find another GP. 

 

In any case, not taking mothers seriously isn't a problem confined to GP's. 

 

I went thirteen years before getting a POTS dx. Thirteen years of being told it was just anxiety. It was really demeaning. 

 

Then an article was published in a major medical journal. I left my current gp and went to one who I had seen before, who I knew to be very thorough. I gave him a copy of the article, and he read it and apologized for his misinterpretation of my symptoms years before.  

 

Meanwhile, in the last year two of my kids were diagnosed with similar issues. This time the process was quick because the results of my dd's 24 hour monitor were so bad that we were immediately sent to an electrophysiologist who KNEW heart rhythm irregularities. After that dd's dx, I decided to check another dd, because I was concerned about whether a medication she was on could trigger any underlying problem, and sure enough, she has issues, too.

 

But I have to say, at the initial appointments, we were still not taken seriously. Thankfully, the first cardiologist ordered an echo which picked up the problem. Even then, the tech who did the echo didn't make note of the irregularities so the doctor was ready to send us on our way, until dd and I both had to ask if he saw the record of her rhythm while the echo was done. He was sure that if it was irregular the tech would have noted it. To his credit, he listened to us, checked the recording of the echo, and came back and said dd needed a 48 hour monitor immediately. Then when the next dd was brought in, it was back to the anxiety thing. Arrghh! I think that cardiologist did the monitor just to appease me and to prove it was anxiety. Then he called me a week later with the results. The monitor had shown two disturbing irregularities that would have to be monitored. 

 

After all of this, I felt like saying, do you think I make up this stuff for fun?!! It's as though having four kids and hsing isn't enough; I have nothing better to do than to run to the doctor all the time for fun.

[kbutton]

Btw, I have never met such an incompetent vet. For the most part, I'm usually really jealous of the medical care my pets can get and often joke that I kinda wish my vet took human patients.

 

Vets have to be a lot more intuitive about their patients because their patients don't use words. 

 

Well, I can see the pediatrician's point of view. Parents ask for antibiotics all the time for disease that don't require them, and overuse of antibiotics is a serious problem.

 

Not to negate what you are saying, but I seem to be more worried about antibiotic resistance than most of the doctors I've seen. I can't tell you how many times I've been handed an Rx for one when I had bronchitis, which almost never has a bacterial component. I like to use the walk-in clinic--they have signs up educating people about what kinds of things require antibiotics and what kinds of things do not. 

 

DH works in the medical field, and we debate this stuff a lot. It's not all that encouraging at times to hear his real-world examples of this stuff! He does have some amazing stories of professionalism too though. He does keep me from completely throwing in the towel on the whole medical field. 

[creekland]

And why do you think that is? Do you think most doctors are arrogant a-holes, just looking for a paycheck? No, for every well-read mother that comes in there are 6 total nut jobs who want to cure their cancer with hemp and coconut oil.

 

Therefore the solution is to lump them all together - just like homeschoolers are all unsocialized (or fill in your favorite homeschooler stereotype)?  Or southerners/northerners are all _______? Or all of one gender/race/religion?

 

If I can look at each and every student I get at school as individuals and work with them accordingly, is it so tough to expect the same from other professionals?  One might not have their homework completed due to laziness, another due to lack of understanding, yet a third because they spent the evening before in the hospital?  Am I supposed to generalize all to laziness because the first or even majority was that way?

 

I'll admit to being a little jaded due to past (& perhaps present) experience.  One is quite naive if they expect the medical world that appears on TV to be that which is found all the time in the read world.

 

And no, the alternative isn't to think all doctors are arrogant and merely looking for paychecks.  The alternative is to understand they are human and can only know what they've seen or experienced.  That is generally NOT everything out there.  Then the frustration comes when one needs them to do more than they see fit when it is our bodies we're talking about and we may be more inclined than they are to actually try to fix something.  They are not the ones living with "whatever."  It's super easy for them to say, "it's nothing" (or stress or similar).  Sure, it's nothing affecting them. We also tend to have more time to research and intimately know what we are feeling vs just guessing or being led astray through poor communication.

[G5052]

Sorry to hear that :(

 

Yes, it is good to be open about how much time, energy, persistence and money it takes, how many people don't have access to the support they need to deal with the process, and how cures, or even effective treatments aren't guaranteed at the end of it. 

 

I am grateful for support and effective treatment, but I acknowledge that's just the luck of the draw, and things could have been so much harder - and for many people, often are.

 

Thanks. We never get a break. Truly. 

 

We have support among our relatives, but honestly nearly all of our friends don't get it.

 

Sometimes it gets very tiresome. "Is X better?" "No, X will never get better as far as we know." "Why don't you go to another specialist?" "We go to dozens of specialists including several nationally-ranked ones, and they agree that nothing can be done." "Oh. (changes the subject)"

 

We all had the flu/bronchitis this week along with the regular mess. Among four people, we had eight medical appointments amid major house repairs last week. I thought I might go batty.

 

I spent nearly three hours on Friday dealing with one bill because of multiple issues. I pay bills every week, and on Saturday, there were six medical bills I paid.

 

On top of this I homeschool and work full-time because of the medical bills.

 

I think that's pretty much what the article expressed. There are lessons to be learned though. We sometimes get overwhelmed by people like us looking for support and encouragement, and that's our calling if you will. People know that we live it, and they come to us out of the woodwork. People with horrible, unsolvable medical problems.

[Murphy101]

Idk. Chronic illness may have left me slightly callous, because that's just what happens with unusual presentations. It takes a long time, you need to advocate a lot, it exhausts you and your entire family, treatments have crappy side effects, and a cure is a pipe dream.

 

Yes, it is terrible for quality of life. But yeah, it happens. And it doesn't always happen because the medical profession sucks. Sometimes it happens because that's the nature of the beast, kwim ?

 

I agree treatment in less than a year is actually pretty good going. My best friend has been engaged in the bolded for the last four years, so I don't have to imagine it, I see it.

I have not said that it is ALL bc the medical profession sucks.

 

But when the medical profession sucks, it sure as heck doesn't help. <--- making it suck less would improve a lot of things that otherwise can't always be improved. I understand we have not created cures or easy cures for all of life's lengthy ills humans might face.

Edited March 28, 2016 by Murphy101

[Murphy101]

My simple understanding is that the strep triggers what basically becomes and autoimmune disease. So the original trigger is often gone even before the neuropsychiatric symptoms emerge.

 

There's also a push to not use PANDAS in favor of PANS because PANDAS is strep specific but the same reaction could potentially occur from a number of illnesses, like mono or the flu.

 

When we were going through our ordeal, I spoke with a developmental pediatrician about what was going on and her said mono can definitely affect the brain.

I admit until one of my sons got mono I had never actually met someone with it or dealt with it personally. How awful could something called a kissing disease possibly be, kwim?

 

So son was really feeling like crap. Like really really awful and ZERO energy. So I hauled him and the dr said tested and confirmed mono. He did Rx antibiotics just as a safety measure for secondary illness coming up to a severely lowered immune system. And told me DS needed to rest as much as he could. Alrighty. No big deal.

 

So son went to his college classes and went to work and took his meds and when he wasn't doing that we of course didn't say anything about him sleeping.

 

So while at work son's dr sees him working and gets pretty upset. Tells son he needs to leave work ASAP and go home and SLEEP.

 

And then dr calls me chews me out in his thick accent and says I told you he needed to REST as much as possible. He has mono. This is serious stuff. Continuing to work and be active is not going to only prolong his illness, it could cause serious permanent damage.

 

I was honestly shocked. To me rest as much as possible means just that. Deal with it and rest when you can, not a red flag of Hail Mary's bc this is serious take medical leave from work and school stuff.

 

I really was unaware mono can take 3-18 MONTHs or longer and can rebound for some time if not given due caution.

 

Really. No idea. Dh didn't know either. We just thought it made you really tired for a while and you got teased for kissing and a week or so later life was back to normal.

 

A prime example, like strep, where we have gotten used to taking it as no serious thing, just a typical minor and usually brief illness, forgetting or never learning that it can be a lot more serious than that.

 

And we hear such awful things all the time that we are almost relieved to know its "just" strep or mono or some such thing. Because in our minds these things are simple and easily treated and not threatening.

 

Except for when they are actually very threatening.

[TranquilMind]

I admit until one of my sons got mono I had never actually met someone with it or dealt with it personally. How awful could something called a kissing disease possibly be, kwim?

 

So son was really feeling like crap. Like really really awful and ZERO energy. So I hauled him and the dr said tested and confirmed mono. He did Rx antibiotics just as a safety measure for secondary illness coming up to a severely lowered immune system. And told me DS needed to rest as much as he could. Alrighty. No big deal.

 

So son went to his college classes and went to work and took his meds and when he wasn't doing that we of course didn't say anything about him sleeping.

 

So while at work son's dr sees him working and gets pretty upset. Tells son he needs to leave work ASAP and go home and SLEEP.

 

And then dr calls me chews me out in his thick accent and says I told you he needed to REST as much as possible. He has mono. This is serious stuff. Continuing to work and be active is not going to only prolong his illness, it could cause serious permanent damage.

 

I was honestly shocked. To me rest as much as possible means just that. Deal with it and rest when you can, not a red flag of Hail Mary's bc this is serious take medical leave from work and school stuff.

 

I really was unaware mono can take 3-18 MONTHs or longer and can rebound for some time if not given due caution.

 

Really. No idea. Dh didn't know either. We just thought it made you really tired for a while and you got teased for kissing and a week or so later life was back to normal.

 

A prime example, like strep, where we have gotten used to taking it as no serious thing, just a typical minor and usually brief illness, forgetting or never learning that it can be a lot more serious than that.

 

And we hear such awful things all the time that we are almost relieved to know its "just" strep or mono or some such thing. Because in our minds these things are simple and easily treated and not threatening.

 

Except for when they are actually very threatening.

I had mono in my mid-thirties, inexplicably.  Married, working from home, not interacting a whole lot with people.  The doctor never even considered it at first. 

 

I was down for nearly a year.  It hit me like a ton of bricks.  No idea why. I would have had to drop out of school, had I been enrolled at that time. 

 

You are right.  It is a week or two for many people, but not all. 

[Dmmetler]

Staph, too-Not even MRSA. DH still has problems with his knee after a staph infection from a bug bite last July, which put him in the hospital for several days. You think of Staph as a "take an antibiotic and it's gone", but honestly, it's hard to kill, especially in joints.

[creekland]

I think, for the majority of us, we get our expectations from the medical world via media.  In media every problem is found and solved within an hour or two - no matter how obscure it is.  Treatments decided upon work.  Everyone lives happily ever after.  (Or we learn how much of a death sentence cancer always is, etc.)

 

Look at how many on here are quick to suggest "Go to the doctor" at the slightest issues, because, after all, doctors have or will find all the answers.

 

It boggles the mind to think it doesn't necessarily work this way.

 

And actually, for most basics and well known things it does work that way most of the time.  Vaccines often work.  Appendixes can come out pretty easily for most.  Broken bones can be repaired and do well afterward many times.

 

But we (myself included at the beginning) get angry when we head down that path and find it doesn't always work like it does on TV or in the movies.  We have such high expectations that anything less is "awful treatment/knowledge."

 

In reality our bodies and the things that plague them are often complex.  As I stated before, humans can't know what they haven't experienced or seen.  They might be able to guess, but their guesses can actually be incorrect too.

 

Mistakes can also happen.  Pure, genuine, mistakes.  We're all human.  None of us are perfect.  Not a single one of us.

 

My mental thoughts on the whole process have changed from expectations to anger to frustration.  I'm over anger at doctors (usually).  I respect that they are human.  I keep anger at the system that doesn't allow wider exploration without "permission" and frustration about what is known/unknown.

 

Then I find more humor in medical deals shown on TV or in the movies.

 

Best wishes to all on here who are searching or hoping for better answers.

[maize]

There really is so much unknown in the medical field.

 

In another life I would love to be a medical researcher.

[Pandabearmom]

Coming out of lurkdom again. I've been living this hellish nightmare for almost two years. We've been to some of the best specialists out there, yet we're from from recovery (discovered an underlying immunodeficiency). The hardest part of this journey, aside from watching my precious child deteriorate before my eyes, is that it's so controversial in the medical community, and a lot of the specialists out there aren't covered by insurance and/or require travel out of state. I wouldn't wish this on my worst enemy...

[G5052]

Staph, too-Not even MRSA. DH still has problems with his knee after a staph infection from a bug bite last July, which put him in the hospital for several days. You think of Staph as a "take an antibiotic and it's gone", but honestly, it's hard to kill, especially in joints.

 

Yes, that's one of the many issues. Every surgery, procedure, and dental visit is wrought with concern and requires an antibiotic prescription.

 

Long-term antibiotic use through the initial infection also resulted in permanent hearing loss, the type that a hearing aid won't help.

[AmyontheFarm]

When we asked about PANDAS for our eldest daughter.  I was told no, impossible she was 19 years old, she's an adult.  It's called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  

 

I looked at the dr and asked if disorders or diseases know when a human body turns from 17 to age 18?

 

The dr agreed to let us use ibuphren for 1 month in a twice a day low dose to see if her symptoms improved.  She was less combative, better able to deal with stress, even able to say, "I'm stressed/anxious/fearful, I need to do xyz right now". This was a huge improvement.  But the psychiatrists had sent a report stating that dd was bipolar so after that they would only treat the bipolar diagnosis.

[Denisemomof4]

This was painful to read. Many old timers supported me as I walked the scariest journey of my life trying to find answers for my daughter's health problems. 4.5 years of symptoms, SCARY symptomswhich never made sense to doctor after doctor after specialist after specialist, a million tubes of blood draws on a truly skeletal child who's veins never cooperated, causing heart wrenching, painful attempts to get blood, and ensuing anxiety, numerous specialists at all the best hospitals, numerous invasive and physically taxing tests and procedures, odd symptoms which were very serious but nobody knew what to do about.....

 

Thank god we finally got our answers after about 32 doctors. We've now seen ..... 40?

 

Lymes treatment turned my daughter's life around. The journey has scarred her. Just last week I found out how traumatized she is by all she went through, how much she hates her body in every way - a body most girls her age envy. She has learned to hate her body which failed her for so long.

 

She will be fine, I am sure, but we have a lot of work ahead and need the support of a good therapist who can help her process this and her RAD sibling in a healthy way. We're only three sessions in, but I keepy fingers and toes crossed so tight I just may cut off circulation.

 

Health wise - I am so thankful for where she is. She seems to be totally healthy, but the memories, the trauma - we need to get these fixed. She is such a beautiful young woman inside and out and she needs to see that and appreciate that.

 

I l

[AFwife Claire]

When we asked about PANDAS for our eldest daughter.  I was told no, impossible she was 19 years old, she's an adult.  It's called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  

 

 

I wondered about this too.  I knew someone who had a similar out-of-the-blue descent into OCD/anxiety/crying jags, etc., after what we think was an undiagnosed strep infection.  But this was an adult man.  It was very scary to watch, and everything about this article rang true for his family.  If he had cancer or something, everyone around would have rallied, but when someone just all of a sudden mentally goes off the deep end, with absolutely no previous warning or depression or any other sign of impending mental problems--well, no one really offers any support, and doctors don't know what to do either.  Doctors were asked about an "adult" PANDAS, but everyone just pooh-poohed the idea.  

 

After 8 months of increasing OCD and increasing sleeplessness, he was finally put on prozac, I believe, and started taking sleeping pills.  Once he started sleeping again, things began turning around, and eventually, probably 6 months later, he was more or less back to normal.  Except he doesn't really remember much of the details of his slide downward, or any of his OCD behaviors or anything, so he just thinks everyone else was "over-reacting".  

 

Mental issues are scary.  I really hope we can learn more about adult triggers.