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Hi all, I haven't posted in a while but I still check in every few days. After several years of aggressive treatment (with PEX and multiple IVIGs) my son is OK but he is still not neurotypical. He is excitable, hyper, often defiant, and generally more difficult than other kids-- he never adjusts his behavior based on past mistakes.

 

But he is also brilliant, empathic, and unusual in many ways that make me very proud of him.

 

I am realizing I have come out of this thing with my faith in the institutions central to a "normal" childhood-- medicine, schools-- absolutely shattered. My 9yo PANDAS kids is home schooled and the very sight of a school group at a museum makes my blood run a little colder with fear, resentment.... a whole slew of negative, defensive emotions that leave me on edge. Home schooling is not easy, but school is a place for my kid to be exposed to illness, berated, punished, rejected and misunderstood. It was a horrible experience.

 

Similarly, neither of my kids (I also have a 3yo) has been to the pediatrician in over a year and a half. When I thought I smelled strep on the little one's breath (I was right) I took him to the ER instead. The ER felt safer to me. The pediatrician's office is a dangerous microbe pit and a source of dangerous medical policies. Since the 3 yo is now not vaccinated and has no record of a relationship with a ped., it would appear I am drifting toward home schooling this one too...

 

I have never been much of a joiner, so my participation in these things was always pretty tenuous. I was not super PTA mom or anything. But sometimes I feel like I am hunkering down into some kind of weird survivalist mode-- I am not sure if this is a rational response or a symptom of the PTSD many of us feel we grapple with, or some combination of the two... The dire economic and environmental news in the world does not help. What kind of a future do our kids face, anyway? We are going to need independent thinkers more than anything, and schools do not seem to be producing independent thinkers.

 

By the way, I have communicated with Dr. T recently and he does indeed now view PANDAS as a condition of low brain histamine. He also believe it is far, far more common than anyone realizes.

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Bronx Mom - I just had my son's IEP meeting this week where the CSE committee spent a great deal of time talking about my son's potential. The chair said something to the effect of "Students who are straght As often are those who have learned to comply, not those who have learned to think or create. Your son will take a different road, no doubt, through high school, but it we are here to guide him and steer him in the right direction and we do not give up".

 

Ok.. I will admit that this was a very optimistic group who was trying to keep me happy after a horrible exacerbation last year... but they really did believe it and, somehow,I was fortunate enough to have 6 educators of varying backgrounds sit around a table and tell me that while they are all learning about PANDAS, they are dedicated to doing the best for my son.

 

This was one moment in his educational history. YES he has had horrible times and horrible teachers, YES he has been rejected by some of the kids, YES I have been marginalized by other parents to some extent... and YES the world is full of horrible, crummy, economic and political situations.

 

You have every right to home school your children and to educate them in the best environment for them. I truly believe homeschooling is the best option for some of our kids. What worries me though (honestly) is the sort of despair I am hearing in your tone.

 

I really think that all of us PANDAS parents are at risk for PTSD, depression, anxiety disorders, and a host of phyisical issues. The recent news of a mother of a child with PANDAS who committed murder-suicide scared the bejebers out of me. I made an appontment with a counselor for myself just to have an objective person listen to me and tell me if I am doing OK... and help me going when the times are rough. You might want to think about doing the same. I think we all could use some help as we navigate this uncharted territory.

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Yes, Kimballout! Yes!

 

BronxMom2 -- I know how you feel. I've been there, too. And, in some respects, I'm still there. It's incredibly difficult to avoid feeling isolated, judged, pitied, and frustrated when it comes, especially, to the educational system and the schools, as well as some of the medical community. It all leads to us, I think, feeling very jaded and cautious when it comes to trusting that there's anybody else out there who can and will care for and about our kids one-tenth as much as we do!

 

But I have to echo Kimballout's experiences. In a school meeting, all you really need is that ONE person across the table who, on any level, "gets it." That one other person who sees your child's potential and feels some personal responsibility and joy in helping achieve it. Thus far, we've been fortunate that our DS14, more so than we, has been able to make that connection. To find that one educator, case worker or advocate who sees the depth of his intellect, creativity, passion, generousity, humor and goes the extra step for him when we can't or we're not there to do it.

 

More frustrating for me, even, than the schools is the medical system. Like you, despite living in a large, "progressive" metropolitan area, we have had a hard time finding pediatric medical care for our DS that is supportive of PANDAS treatment or "alternative" perspectives on immunology overall, let alone participatory in it. Our local problem, I think, is that the premier children's hospital group in the area has an infectious disease/immunology department headed up by one of the most vocal and obnoxious PANDAS nay-sayers, and the rest of the medical group is reluctant to run up against him when it comes to treatment and vaccination protocols. And then you have the notable "PANDAS docs" and other specialists such as DAN! doctors, etc., but they too frequently fall outside your insurance coverage, and/or they are unable or unwilling to be your child's ongoing, primary doctor, so you're still stuck with trying to find a pediatrician who will accept these other specialists input and keep the eye-rolling to a minimum.

 

But I have to say, as time goes on, I get less and less concerned about how I'm received or perceived by anyone outside the immediate situation, and that goes for teachers, administrators, doctors, therapists, other parents, etc. I've come to adopt a "need to know" basis on nearly all fronts, so I only tell each of them what they need to know for the time and situation, and I keep the rest to myself. But when I have to -- when I'm confronted with someone who has a particular perspective that I feel is going to be detrimental to DS's progression or health -- my Momma Tiger claws come out, and I take on the unavoidable fight. Thankfully, I have this forum and a select few other trusted people to turn to when the going gets tough!

 

Hang in there! As much as it may feel like it sometimes, you are NOT alone!

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I actually can't say I feel that way at all. Now I've been in probably more than 10 different childrens hospitals over the years and refused treatment by many many doctors. I understand the PSTD part, but am I angry or let down? Absolutely not. PANDAS is a new disease, there's no standard protocol yet. How can you be angry at doctors for not treating a disease that technically is still off the radar? The standard protocol for tics and OCD (which is how PANDAS typically presents) is still SSRIS. Doctors are just following the first lines of treatment. A protocol for PANDAS is developing slowly and that's great but if you know your child has a rare disease that isn't on the radar yet, why bother going to local doctors in the first place? They aren't going to know what to do. You need to go to the doctors who are associated with teaching hospitals and willing to do experimental treatments.

 

Pandas16, I greatly admire your courage and willingness to give the docs the benefit of the doubt. As the actual PANDAS patient, your perspective may be very different from a parent's, understandably. But I have to say that - as a parent trying to find treatment for a desperately ill child - I'm not so forgiving and echo MomWithOCDSon's feelings.

 

(Please forgive the rant in advance, or skip this, but this topic hits a nerve!)

 

I understand that this is a new illness, woefully ill-defined with no clear "standard of care" yet, but that should not (IMO) be an excuse for local docs to simply ignore a patient completely. Going to see a PANDAS expert is excellent advice - it was key for us as well - but when they're hundreds/thousands of miles away, they can't be your child's PCP. Dr. K made it clear to us that we needed to find a local doc who was willing to at least coordinate care with him, prescribe the necessary abx, etc. We searched for years - saw dozens of docs - to no avail. Even when we brought half a dozen published journal articles, plus contacts for expert clinicians/researchers around the country who had generously offered to speak with local docs on our son's behalf, these local docs declined to even read the materials or make the phone calls. That's inexcusable. The specialists we saw never even bothered to order a single test, just told us to see a psychiatrist and hustled us out as quickly as they could. They insisted it was a purely psychiatric issue despite the following:

 

  • Symptoms exploded out of nowhere after high fever
  • Blood tests showed consistent abnormalities (elevated RF, ANA, ASO) associated with either autoimmune or infectious illness
  • Had neurological symptoms in addition to psychiatric symptoms that developed simultaneously (excruciating headaches, muscle weaknesss / difficulty walking, enuresis, extreme sensory defensiveness, etc.)
  • PET scan showed inflammation in basal ganglia
  • Cunningham test results (admittedly research-based) placed ds in high PANDAS range
  • Consistent improvement on abx and IVIG (when we could get them)
  • Consistently adverse reaction to virtually all psych meds

 

Our son's PET scan was performed by Dr. Chugani - head of pediatric neurology at our state's largest children's hospital, unquestionably an expert in this field. When he tried to proactively contact our local specialists to recommend IVIG for our ds, they literally told us "since he (Dr. C) hasn't published his clinical results, his opinion is anecdotal and irrelevant."

 

Crowning blow: after another infection triggered relapse following 1st IVIG and Dr. K said we absolutely needed another round (but we couldn't afford to do it in Chicago again and pay up-front), we begged a local pediatric neurologist to order it per Dr. K's protocol and she said she would "arrange" it. The infusion clinic didn't follow Dr. K's protocol, though, infused far too rapidly, and our son had a bad reaction (dizzy, nauseous, racing heart). The infusion nurse paused the infusion so she could contact the ped neuro... who disavowed any responsibility for the procedure and refused to get involved at all, placing all responsibility on Dr. K (who was a thousand miles away). Her office was literally one floor up from the infusion center, but she would not get involved. So they sent us down to the ER for observation and then discharged us, canceling the IVIG. Shortly after that, our ds had his worst exacerbation ever and was literally in H-E-L-L. ( http://www.latitudes.org/forums/index.php?showtopic=4447 )

 

After starting the "Saving Sammy" dose of augmentin XR, our son began a dramatic and steady improvement. I wrote a letter documenting this to all of the local docs we had seen who declined to treat him (because "PANDAS doesn't exist," or "it may exist, but your son doesn't have it because it's too rare," or "he may have it, but there's no proven treatment so we can't do anything"). The letter wasn't accusatory: I just shared our experience in the hope that it would help other children in the future and offered to share more details with any of them at any time. Only heard back from one: a child psychiatrist who thanked us for the information and assured us it would help him in the future. The psychiatrists and psychologists we saw were actually wonderful: they consistently agreed that our son's illness was not primarily psychiatric, but the "normal" M.D.'s ignored this and said our son's condition was "not medical" (!). Never did find a local pediatrician: half a dozen who said they were accepting new patients turned our ds down because they "weren't equipped to deal" with something like PANDAS.

 

These are just variations on the theme common to so many family stories on here, I know. For our family, we all suffered terribly because we knew something awful was happening to ds but we could not find any local medical professional to help. We had to pay out of pocket for almost everything. It was like fighting the illness and the healthcare system at the same time, as the "war on 2 fronts" drained all of our energy, hope, and finances.

 

Obviously, we did find wonderful docs who were brave enough to stick their necks out and treat our ds despite the risks. Maybe the problem isn't the docs themselves but the system: are they terrified of litigation if they think "outside the box," advised by legal counsel to avoid anything controversial? I don't know. I just know that no suffering child or family should have to experience this!

 

Wish I knew how to fix this. But - for now - I have a deep distrust of our healthcare system that won't go away anytime soon.

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And the most unconscious part of all? That if you don't have some money, your child will not get treated, and will suffer greatly, very possibly never be able to get help. Honest to God, it all comes down to money.

Our healthcare system has some SERIOUS issues.

Bravo Worried Dad, you wrote it all out very clearly.

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WORRIED DAD: So well written! Our DS was diagnosed at age 2.5, and we took him from Ped to Ped (10 in all), trying to get someone to treat the PANDAS, not just throw a 10 day run of ABX at the Strep+. We even took him to a Neuropsychiatrist at DUKE Children's Hosp. in NC who examined him and said: "It is very suggestive of PANDAS, particularly with the symptoms subsiding when ABX are administered". Then he sent us away with nothing and told us to come back in 6 months. It seemed to me that the docs we saw were either poorly educated, arrogant, or just plain lazy. I worked in the MH field for many years and it was most certainly my responsibility to refer my patients to specialists if I did not have the education/skills to treat their particular MH issues. And I did - even though it may have taken me some digging to find a referral source. IT WAS MY JOB! Also, I cared enough about my patients to make sure that they had appropriate follow-up if I was unable to provide what they needed! This should be the norm for all. I find it disgusting that many doctors will not take the responsibility to at least refer their patients and to educate themselves.

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Then you go to another teaching hospital and try again. I went through 10 of them. You don't give up and feel sorry for yourself. Gotta forge on. Idk. Sorry, if that sounds unsympathetic. I just am not the type to give up. I get what I want and work like ###### to get it. My parents are the same way. That's why I'm well. Guess I just have that mentality. I only mean to imply to never give up.

 

I am disturbed by this - There are many parents who do not have the tools to continue to go from door to door as you apparently have been able to. Also, it takes an incredible amount of money to manage long trips, hotels, hospital/Dr/pharmaceutical costs (not to mention IVig or PEX). Many people do not have the luxury of receiving parental assistance, especially when they are parents themselves, perhaps to more than one child who is ill.

 

Some are more blessed than others in having some extra help. Some are alone in their quest for assistance. I do not think that there is a parent alive on this forum that would ever be "the type to give up" when it comes to trying to save his/her child.

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I am disturbed by this - There are many parents who do not have the tools to continue to go from door to door as you apparently have been able to. Also, it takes an incredible amount of money to manage long trips, hotels, hospital/Dr/pharmaceutical costs (not to mention IVig or PEX). Many people do not have the luxury of receiving parental assistance, especially when they are parents themselves, perhaps to more than one child who is ill.

 

Some are more blessed than others in having some extra help. Some are alone in their quest for assistance. I do not think that there is a parent alive on this forum that would ever be "the type to give up" when it comes to trying to save his/her child.

 

It is both true and sad that right now the kids with PANDAS who are getting treated are the kids with parents who are able to navigate the system financially, mentally, and physically to learn about treatments and get their child to the appropriate health care provider.

 

Right now we do not have protocols for mainstream docs to follow - even if they DID identify PANDAS. We are all individual cases. It is great that we are researching IVIG and researching antibodies and glutamate and all the other things we are discovering. But at the same time, hunderds of children with PANDAS are being treated each day - mainly on a trial and error basis. We cannot move beyond this without gathering information about what we all are doing. We need a major medical center/ university/ government agency (perhaps?) to track our children's symptoms, exposures, and treatments to help to develop some basic protocols for PANDAS. We need the treating doctors to share information so that we can learn about evaluation and treatment and so that we can train the pediatricians and psychiatrists in the trenches.

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You are never alone in any quest. You should never feel that way. There are so many different options out there for PANDAS even if finances aren't available. More and more research is coming out on glutamate and cortical striatal thalamic circuitry (basal ganglia) involved in OCD/Tourettes. There's clinical trials for glutamate modulating drugs, NPL 3100 and riluzoles for example. There's clinical trials for RTMS. Completely free treatment that could really help people. Really look at RTMS. The last time I checked it was available ages 10 and up. Even if you can't go the autoimmune route to manage symptoms, there's more and more ways to manage it. Homeopathy works well for some. I talked to Beth, the author of out of the fog and into the light. She said the homeopathic treatments are maybe 15 dollars. There's always a way out. Geez, I can't write anything here without offending anyone! Even if it's to keep going and have hope!

Pandas 16 - If my son can have your attitude and determination as an adult, I will consider myself to have been rewarded as a parent. YOU are the outcome we all strive for. Someday - all children with PANDAS will have the opportunity to have early intervention and positive outcomes. It CAN happen. Thank you.

Edited by kimballot
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You are never alone in any quest. You should never feel that way. There are so many different options out there for PANDAS even if finances aren't available. More and more research is coming out on glutamate and cortical striatal thalamic circuitry (basal ganglia) involved in OCD/Tourettes. There's clinical trials for glutamate modulating drugs, NPL 3100 and riluzoles for example. There's clinical trials for RTMS. Completely free treatment that could really help people. Really look at RTMS. The last time I checked it was available ages 10 and up. Even if you can't go the autoimmune route to manage symptoms, there's more and more ways to manage it. Homeopathy works well for some. I talked to Beth, the author of out of the fog and into the light. She said the homeopathic treatments are maybe 15 dollars. There's always a way out. Geez, I can't write anything here without offending anyone! Even if it's to keep going and have hope!

Pandas 16 - If my son can have your attitude and determination as an adult, I will consider myself to have been rewarded as a parent. YOU are the outcome we all strive for. Someday - all children with PANDAS will have the opportunity to have early intervention and positive outcomes. It CAN happen. Thank you.

 

 

Pandas16...I also agree with Kimballot. Thank for your your positive attitude, and I truly hope that both my DS's end up with the same attitude. You are so right. It's really only been in the past 2 years, actually, that so much has been found. I applaud you for everything you are doing.

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PANDAS-16, you have posted clearly your intent to encourage and point to hope! You are so right, and that is exactly why we are all here desperately trying to help our children--thank you.

 

I have followed this site for 3 years. It has provided great insights which we did not find ANYWHERE ELSE -- We will never, never be able to say "Thank you" enough to all the members of this forum.

 

PANDAS 16 I always enjoy your reflections as I hope our own children will be as understanding about their past struggles when they get to young-adulthood...

 

As a Ps parent, I can completely identify with Worried Dad's comments. (warning: rant coming.)

 

There is NO excuse for the failing of the medical community to recognize PANDAS -- except perhaps the guilt of self-interest and petty "historical" politics.

 

Our 5th grade daughter went from "talented and gifted" to literally OCD-imprisoned within 3 weeks during the summer before 5th grade.

 

At the worst of it we had to carry her, she did not speak for over 3 weeks, eyes shut, saliva held in her mouth, regressed, ticcing, need I go on? VERY severe.

 

At an early appt., as my suddenly non-verbal d was crawling around the floor and trying to get behind a radiator in the examining room -- our pediatrician had the nerve to tell me the zebra vs. horses story when I brough up Ps!!! I begged her to help us, to tell us what to do, and her only suggestion was to see a psych.

 

Just this morning I was reflecting on that time, 3 years ago, when we carried our d to the leading psych on OCD (historically THE guru in Washington DC) and paid $800 for the initial evaluation...She charged us $800 !!! and basically told us that our d was not psychotic, but was suffering from one of the most severe OCD "storms" she had ever seen...since she had been involved w/ Ps research I thought we HAD to go--(my husband almost fell off the chair when he wrote the check, I had not told him.) We were desperate. The caveat to that episode was that my d "walked out of the severe OCD storm" thanks to a steroid burst and antibiotics...neither prescibed by that psych.

 

After a string of doctors, we finally found Dr L and I cannot tell you the relief of hearing someone say they had treated Ps before. The current fact is that parents have to travel to find one of the very few doctors willing to TRY to treat.

 

We subsequently fought insurance this year tryitg to get pex or IVIG paid for, hundreds of hours sunk into that effort and pex was entirely denied and we paid out of pocket for IVIG--still not a dime of coverage from insurance. THAT is criminal as it means only those with the means to pay are able to get the treatments -- just plain wrong (not to mention the drain on the retirement funds.)

 

The NIH white paper, the small groups forming, raising awareness, etc. are all thanks to parents and a very small group of doctors. Will the medical field recognize Ps as a viable illness that merits treatment -- will insurance companies finally start paying for the desperately needed treatments? I hope so and shudder to think of the suffering that goes on for SO many who have no idea that "Ps" exists.

Edited by T.Mom
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I totally agree about the feeling like you're "hunkering down into some kind of weird survivalist mode." I don't always view happy things as happy anymore. And I'm much less likely to socialize with "normal" parents. I prefer my virtual friends since they get me & view my ups and downs as normal PANDAS Parent's behavior. Literally, four seasons in one day is not uncommon in my house. And I'm much more like to go TOTALLY NEGATIVE about any little setback vs. taking a wait & see approach. I definitely have a minor form of PTSD. I drove past my son's old elementary a few weeks ago & was delighted to see the whole front of it caved in & posted on Facebook that I thought maybe my telekinesis powers had kicked in...it was only a remodel. This thing changes US in ways that nobody knows. And it sucks all around. And my heart is nearly always breaking for someone who has it worse than I do. I've not been on the forum as much lately, but I appreciate the cathartic release and camaraderie here. :)

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