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Hi! I'm new to the forum. While my 17 y/o son has been “sick” to some degree since he was a preschooler, I am new to PANDAS. My child was once a very bright kid, working a full year above grade level. Now, he is a young man with a long list of diagnoses, so cognitively impaired and socially delayed that it is doubtful he will ever live on his own. I have been to many specialists over the years asking for the name of ONE disorder that would encompass all of my son's symptoms. I refuse to believe that one child can keep developing new illnesses/disorders. But each doctor only wanted to deal with their small piece of his “complicated case” (that's what they keep calling it.)

 

Last week, after the latest mystery symptom (reflux, nausea, gagging) landed my son in the hospital having lost 20 lbs in one month, we consulted yet one more specialist. And, finally, someone is willing to look at this. He wants ALL paperwork from EVERY doctor and lab. Finallyyy!

 

During the intake interview, the doctor offhandedly asked me if PANDAS had been considered. It had not. He mentioned a doctor in D.C. and the conversation moved on. Last night, I did some research on PANDAS. It is the first time in all my years of reasearch that I have found something that explains all of my son's symptoms. I couldn't believe it! See for yourself—my son is dx'd and treated for:

 

bipolar disorder

anxiety

Tourettes

adhd

insomnia

undifferentiated connective tissue disorder

severe fatigue (unable to attend school)

Aspergers

 

 

In addition, my son has joint pain, a history of migraines (age 4), peripheral neuropathy, upper and lower GI issues (despite normal colonoscopy and endoscopy,) AND when he was in elementary school, he lost handwriting skills, math skills, and 36 IQ points. Not one doctor has ever been able to explain to me how my gifted child became a low average, extremely learning disabled child.

 

My son's symptoms do not seem to come and go, although they get better and worse. But, something is always going on. He takes a lot of meds to control the symptoms. The hallmark of his mystery diagnosis is that every few years something new crops up. He did not start out with every problem at once. His picture grow as time goes by. I never know what will be next, and it scares me.

 

It is my mission to get an appt on the books by the end of tomorrow with someone who is qualified to evaluate for PANDAS. I am wondering what I can expect from such an eval.

 

Thank you! I am SO glad I found you!

 

1tiredmama

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Hi! I'm new to the forum. While my 17 y/o son has been “sick” to some degree since he was a preschooler, I am new to PANDAS. My child was once a very bright kid, working a full year above grade level. Now, he is a young man with a long list of diagnoses, so cognitively impaired and socially delayed that it is doubtful he will ever live on his own. I have been to many specialists over the years asking for the name of ONE disorder that would encompass all of my son's symptoms. I refuse to believe that one child can keep developing new illnesses/disorders. But each doctor only wanted to deal with their small piece of his “complicated case” (that's what they keep calling it.)

 

Last week, after the latest mystery symptom (reflux, nausea, gagging) landed my son in the hospital having lost 20 lbs in one month, we consulted yet one more specialist. And, finally, someone is willing to look at this. He wants ALL paperwork from EVERY doctor and lab. Finallyyy!

 

During the intake interview, the doctor offhandedly asked me if PANDAS had been considered. It had not. He mentioned a doctor in D.C. and the conversation moved on. Last night, I did some research on PANDAS. It is the first time in all my years of reasearch that I have found something that explains all of my son's symptoms. I couldn't believe it! See for yourself—my son is dx'd and treated for:

 

bipolar disorder

anxiety

Tourettes

adhd

insomnia

undifferentiated connective tissue disorder

severe fatigue (unable to attend school)

Aspergers

 

In addition, my son has joint pain, a history of migraines (age 4), peripheral neuropathy, upper and lower GI issues (despite normal colonoscopy and endoscopy,) AND when he was in elementary school, he lost handwriting skills, math skills, and 36 IQ points. Not one doctor has ever been able to explain to me how my gifted child became a low average, extremely learning disabled child.

 

My son's symptoms do not seem to come and go, although they get better and worse. But, something is always going on. He takes a lot of meds to control the symptoms. The hallmark of his mystery diagnosis is that every few years something new crops up. He did not start out with every problem at once. His picture grow as time goes by. I never know what will be next, and it scares me.

 

It is my mission to get an appt on the books by the end of tomorrow with someone who is qualified to evaluate for PANDAS. I am wondering what I can expect from such an eval.

 

Thank you! I am SO glad I found you!

 

1tiredmama

 

 

I am so sorry for everything you have been through, but I am very happy for you that you found us (like we all found each other.)

 

First off, I have 2 DS's with PANDAS...both present differently. One is now 19, and the other is now 16. My 16 yo was sudden onset, but still took 4 years to find a dr who would dx it. My 19 yo sounds just like your son (we figured it out when he was 15 only because his brother was just diagnosed, and we found the PANDAS drs.

 

My 19 yo looked like he had bipolar disorder. He is diagnosed with Asperger's, has anxiety, tics, OCD, has been diagnosed previously with ADHD, insomnia (particularly when he's getting sick again), undifferentiated connective tissue disorder (they ruled out Marfan's), severe fatigue, and so many more.

 

Hopefully, when you find the right doctor, your son will get treated properly, and many of the symptoms may go away (or at least be under control.) The fact that you are just now finding it, though, I have to tell you that you may be just trying to control it all his life (it's an autoimmune disorder), but it can be controlled, and that's the exciting part. My son's social skills jumped from approximately 7 years old to approximately 14 years old OVERNIGHT after IVIG treatment. Suicidal ideations (which is what triggered us to figure out it was PANDAS) went away within hours of taking the right antibiotic...3 seperate times.

 

So, there is hope, and great deal of it!

 

The doctor yours was probably referring to is Dr. L, who is a Pediatric Neurologist. She is in Bethesda, MD (just outside DC), there is also an immunologist in Darien, Ct. (Dr. B.), and Dr. K. is a pediatrician in Chicago, IL, who has been treating PANDAS longer than all others. They, and several others are excellent. Check the beginning of the PANDAS board for a list of doctors, and/or PM me, and I'll send you information.

 

What we now know is that PANDAS is not only caused by strep...it can be caused by just about any infection, where the blood brain barrier was penetrated, and the antibodies attacks the basal ganglia. MATH AND HANDWRITING problems are a very specific problem, as are all the other symptoms you described. Many of us are now finding that our children do not only have one infection, especially those of us who's children have been sick a long time. Mine for instance, have been affected by strep, mycoplasma pneumonia (turns out I was/am the carrier for this one), multiple viruses, Lyme, Bartonella, Erlichiosis, and possibly Babesia (the latter 3 are tick borne diseases, and the latter 4 all cause similar symptoms.)

 

I don't want to scare you, but rather offer you hope that things can and do change with treatment. There is traditional medicine, homeopathy, alternative medicine and so many other things that many of us have figured out help and we all share it. with each other.

 

And, just to give you more hope, my 19 year old is now in college, majoring in engineering. He is not cured, but certainly is under control.

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Welcome to the forum... It sounds like you have been going at this for a while, and I hope you find some answers and a new perspective here. My DS is 14 and has had PANDAS nearly all of his life. Had a really really bad exacerbation last year with many of the symptoms your son has. It has been a VERY LONG haul, but he is so much better and is really feeling mentally healthy. Still has a way to go to get physically fit and to get his cognitive skills and attention up to the task of being a high school student... but it is no longer dark and scary for us and I am feeling optimistic. He sleeps at night, gets up in the morning, goes to school, and does something most days after school. ""boring" and "routine" are wonderful things!

 

I think the biggest step for us was finding a doctor who really understands PANDAS (PANS) and was willing to look closely at my son's immune system, see what infections and deficiencies were there, and treat those. Remember - it is not just strep that is the culprit.

 

Best wishes as you navigate the system! The "pinned threads" at the top of this page are very helpful - and there is a private messaging option next to your name in the upper right corner if you want to message with anyone on the forum. Good luck!

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Wow, reading your post was almost like a carbon copy of my ds 9!! The list of diagnosis lengthening every year and me thinking how can one child have so many different ailements, and exact same thing - each specialist looking at their system with blinkers on, like the body's not all connected!! So far I've done antibiotics, steroids, Ts & As planned for next week and I'm proceeding with ivig by hook or by crook, that's what he needs. And after reading your post, I'm determined even more than ever, to get off this track we're on. So glad you found us and praying your son is going to get on the right track now also!

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Yes, Kiera, be persistent, assertive, and aggressive, if need be. I look back at all the lost years, time my child will never get back, and it makes me cry sometimes. As hard as I tried to find the answer, I still feel guilty. I feel like I should have found it sooner--even though I know I did all that I could. I sincerely hope that your child recovers while he is still a little boy. He is so lucky to have a mom like you fighting for him.

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Thank you tpotter, kimballot, and kiera for the warm welcome. The more personal stories I read, the more conviction I have in going after diagnosis and treatment. I won't take no for an answer any more, I can't! My son needs help, and for the first time, it feels within reach.

 

Tpotter, I cried when I read your post. I shared it with my husband. Your son's story gives me hope, real hope. I'm not looking for a cure. I know how autoimmune disorders work, as I have Lupus myself. But I want for my son to have a chance at life. I want him to wake up and be a full participant in life--to go to school, to play soccer, drive, date... I want him to brush his teeth without fussing and fighting, to remember to brush his hair, wear deodorant, and take his meds. I'd LOVE to have the child I lost back, but I'd settle for half that! Your post gives me hope that some improvement is possible. Thank you!

 

I still CANNOT believe that there are children out there like my son! I'm trying to wrap my head around it. After all these years, we are not alone any more. THAT'S HUGE!!!

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Hi. Your story is so sad and so motivational. I really hope you find help in a PANDAS doctor. And I love that you have never given up faith that there must be a reason for all of your son's diagnosis.

 

Our daughter, by age 7, was diagnosed with OCD, agoraphobia, panic disorder, GAD, sensory integration disorder - and showed signs of eating disorders and depression. She was struggling with any kind of writing, and was incredibly socially awkward for a variety of reasons. This was a sudden and complete reversal from who she used to be.

 

We were lucky and found answers after only a few years. Today, she is a vibrant happy child, with only very mild blips with respiratory illnesses. We hope that continues - but more than that, hope she will always be able to find help if she has a futre exacerbation.

 

Every step towards health will be so significant for your son. I hope he is able to find much progress.

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While your child may well have PANDAS, when you start mentioning undifferentiated connective tissue disorder, severe fatigue (unable to attend school), Aspergers, joint pain, peripheral neuropathy, and upper and lower GI issues, those things just scream out loud to me that lyme disease is the underlying issue. Hopefully you will find a doctor versed in that. Note that you can also read how lyme disease is sometimes misdiagnosed as lupus, and how lyme disease can be passed from mother to child in uterus.

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There's a WEALTH of great information in this thread from each and every one of you! I'm always learning more from you all. Thank you.

 

One additional thought I was reminded of, is this:

 

Several years ago, I asked a question on a gluten sensitivity forum, "Does eating gluten, by accident, by gluten-sensitive people, cause an increase in tics?"

 

The answer from gluten sensitive people or parents of gluten sensitive kids, seemed to be YES, in many cases.

 

Gluten sensitivity can masquerade as lots of things, including LUPUS.

 

Here's an idea, as food for thought, in addition to everyone's excellent advice:

 

Try going gluten-free, for a month, and see if this helps, at all.

 

There's a Gastroenterologist (Dr. Kenneth Fine, MD), who has a lab called EnteroLab, in Dallas, TX, ( http://www.finerhealth.com ), that is highly reliable in spotting undiagnosed (so far) gluten sensitivity.

 

Gluten "sensitivity" involves not only Celiac Disease, but, from Dr. Fine's research over many years, (and he's one of these folks) the majority of gluten sensitive people have a NON-CELIAC type of gluten sensitivity.

 

One "caveat"/warning, about his stool sample testing, that Dr. Fine says:

 

In about 500 truly gluten-sensitive people, about 499 will come out "positive" on his stool sample test results (bioassay), that looks for elevated numbers of IgA antibodies to gluten (or to milk proteins, or to soy proteins, or to yeast proteins, or to egg proteins, or to corn proteins, if he got the corn test ready yet).

 

Then, there's the 1 out of 500 truly gluten-sensitive people, who IS "sensitive" to gluten, but who comes out "false negative" on EnteroLab's stool sample tests, for this reason:

 

"IgA deficiency", meaning, as I understand it, the person's immune system doesn't (or is not able to) direct/instruct the large intestine (colon/gut) to make those IgA antibodies to gluten, etc.), and therefore both blood & stool sample tests, show a "false negative result".

 

Dr. Fine's EnteroLab people (972-686-6869) told me once, not that long ago, that there is a simple blood test, that can be done by one's doctor, to determine if someone is or isn't "IgA deficient".

 

Then, if NOT IgA deficient, (meaning that excessive numbers of IgA antibodies to the proteins a person is "sensitive" to, will be able to be found in one's large intestine--where stool is made!), then:

 

Dr. Fine's stool sample testing at his lab, EnteroLab can, with high reliability, point towards specific food protein "sensitivities".

 

Ironically (maybe more than ironically?), EnteroLab's test kits are banned in NEW YORK STATE!!!, so that a person would have to go to a neighboring state to receive the test sample kits, and also to send back the stool sample to EnteroLab.

 

Dr. Fine said that if someone were to come out negative on his stool sample testing (or, finds out in advance, that s/he is "IgA deficient"), then the true test, in the final analysis, is to not eat the suspected protein(s) for 3 months, and see if symptoms improve (decrease).

 

Gluten sensitivity can mimic not only Lupus, but can mimic (seem like & get misdiagnosed as) MANY other things, and gluten sensitivity (& sensitivity to milk proteins, soy proteins, yeast proteins, milk proteins, corn proteins, etc.) can cause REFLUX, too, when ingested (in foods &/or beverages, &/or even in the air, like in a glutenous bakery, etc.) by those "sensitive" to any of these food proteins.

 

If anyone is interested in the possible gluten connection, please see my website, for some "tips" on eating gluten-free, with links to those who have been there, done that.

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

Edited by concerned lady
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Hi Newbie,

Welcome. :)

 

I'm glad you found us here!

 

With some of the listed symptoms (joint pain, fatigue), this makes me think your son may not have a "simple" case of PANDAS. I wonder if lyme (or other tick borne disease) and/or mycoplasma or a chronic virus (I know less about this, but I know viruses have been implicated in CFS) may be playing a role.

 

So, in addition to seeing Dr. Latimer (I assume is the PANDAS doc in DC) you might want to consider seeing a Lyme doc.

 

Also, the joint pain might be consistent with an acute rheumatic fever or sydenham's chorea-like illness.

 

BTW...I really wonder how many "bi-polar" kids are actually misdiagnosed PANDAS. sigh

Edited by EAMom
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Dear nicklemama,

 

Thanks for trying to help me find Kiera's private message (pm).

 

I looked to the right of my "name", and it said "0", and when I tried to find any new messages, I couldn't find any.

 

Hopefully Kiera will send me an email.

 

I hope many from this forum will ask pointed questions on the live "show", early this evening, with the DENT "docs".

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

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