Seeking Input About This Case History

[astridrobi]

Hi there,

I'm new here, and would like some input into my dd's history; I'm wondering whether it's worth pursuing a PANDAS diagnosis, and whether there's enough "evidence" that points to PANDAS.

 

In a nutshell:

 

Dd is 15 and a sophomore in high school.

 

In winter of 2nd grade, she had a routine head cold/sore throat virus. Soon after, she developed cold urticaria. (Hives brought on by cold air.) Ped. said it was just a strange autoimmune reaction to the cold virus, and was most likely transient. It was. But our previously happy, bright, normally-developing daughter developed anxiety and trichotillomania (hair pulling.) She said she was anxious in school when kids were behaving badly and not listening to the teacher. In an effort to curb the anxiety and the trich, we pulled her out to homeschool her, with the plan that she'd return school for high school in our small, semi-private high school. The anxiety and trich stopped completely.

 

In her 8th grade year, the hives came back following a sore throat and cold virus. They would come and go, and we saw an allergist. Full battery of allergy testing revealed no allergies or sensitivities whatsoever, so the dr. did some sort of blood test (I don't have the name of it here.....) to test for an autoimmune issue. It came back positive for some sort of antibodies (again, no access to the report here at work) and the hives seemed to resolve over time.

 

The next year was last year, 9th grade. Dd was a freshman in high school and was doing well- happy, no anxiety, successful. Over Christmas break of that year, she had mycoplasmic pneumonia. Hot on heels of that, her anxiety and trich came back with a vengeance. We've been battling them ever since. Celexa helped with the anxiety for a while, but now she's up to 40 mg. and it's not seeming to be very effective. Her trich is pretty out of control, and in looking at list of PANDAS symptoms, she's got the following:

 

Tics or other abnormal movements YES: TRICH, AND A HOARSE, DRY COUGH THAT SEEMS TO HAVE NO CAUSE AND/OR RESPONSE TO TREATMENT

Severe separation anxiety, Generalized anxiety YES: SEPARATION ANXIETY FROM HER FATHER AND I, AND GENERAL ANXIETY.

Irritability, Emotional lability, Aggression, Personality Changes YES, STRESSED AND ANXIOUS, PRONE TO CRYING

ADHD, Inability to concentrate YES-- INABILITY TO FOCUS IN SCHOOL, ON HOMEWORK. NO HISTORY OF ADHD OR SCHOOL/LEARNING DISABILITIES

Sensory sensitivities YES: LOUD NOISES. EASILY STARTLED.

Deterioration in learning abilities and school performance YES-- GRADES HAVE TANKED. LOTS OF TEST ANXIETY.

Developmental and age regression (inc. Deterioration in handwriting) YES: HANDWRITING HAS GOTTEN TERRIBLE, BUT IT HASN'T BEEN A BATTLE I'VE CHOSEN TO PICK. HAD NO IDEA IT COULD BE A SYMPTOM UNTIL FINDING PANDAS.

Sleep and night time difficulties YES: TROUBLE FALLING ASLEEP.

Urinary Frequency or Daytime or night-time secondary enuresis NO.

 

If you've read this far, I thank you. I'm wondering if I should push my ped. or go back to the rheumatologist/allergist. I did bring the subject up over the phone with our ped. whose exact words were, "I'm not even going to have that conversation." HUH?

 

So anyway, I'd love a yea/nay opinion on whether to push.

 

Thanks tons,

astrid

[MomWithOCDSon]

Yes, Astrid. You not only have more than 90% of the behavioral signs, you have a direct temporal association with infection and onset of the symptoms.

 

I would seek some PANDAS/PANS help sooner, rather than later!

 

Good luck!

[Ebersolk]

I agree. Your daughter definitely sounds like she has Pandas or more likely PANS as it is now called. If you let us know what state you are in, people can let you know who is the closest Pandas/pans specialist.

[mpsloan]

I am new to this forum, but not new to PANDAS! I have a son 16 whom I am sure is/was PANDAS, back then they (dr's) basically told me it was OCD, however, WHENEVER strep was around- even if he did not have it- his behavior was off the charts, worries,fear, adhd. Unfortunatly, he struggled endless years and has been on Zoloft and adhd meds for 10 years. No one ever suggested antibiotics! He has seemed to "outgrown" most of his ocd issues- or perhaps just learned to manage them- but I don't believe that is the case for most. I trusted the dr.'s, we managed his "issues" with an IEP and years of school modifications- He is now in 11th grade and has a 3.75 GPA, I think of all the years he struggled and wish I knew then what I know now.

 

Now I know better, I have a 6 year old who has just been dx. with PANDAS and it apprears he also has lyme desiese blood work also came back that he was extremly deficient in Vitamin D. More and more I believe that any auto immune issue esaserbates the ocd symtoms. This forum has been a Godsend and I will now not take no for an answer from DR.'s.

 

My strong suggestion is to get a new pediatrition immediatly! This was hard for me because I had put all my faith and trust into our family ped. for the last 10 years. I think we are programed to believe that they know best......THAT is not the case. You need to trust your instincs and find a PANDAS literate dr.

I am not sure what area you live in but you can check on the PANDAS.ORG website and it will give you a list of Dr.'s.

 

We changed our ped. we searched out a Lyme literate dr and my son is already showing some progress on antibiotics. Still to early to tell and we are still doing more blood tests, but I think he is better....at least I feel like there is hope now that we are on the road to recovery!

 

I would never of suspected lyme until I did some research on this forum and all the folks were suggesting to check for co-infections. We are new in our journey with my 6 year old, however I am now of the strong belief that the lyme is also a trigger to the ocd and also my son showed he had walking mycoplasmic pneumonia in the past as well.

 

Good luck, God bless you and keep pushing until you get a doctor to listen to you!

[cobbiemommy]

I would say you need to get to an immunonologist, especially one that specializes in PANDAs. If not that, at least an immunologist. You already have a history of autoimmune activity, so they should be able to build on that nugget of information. I don't know where you live, but if it is in the Midwest, I can tell you one hospital not to go to if you PM me.

 

The parents on here are great and know that you are not alone!

[astridrobi]

Thank you all so much for your replies!

We live in Connecticut, and my gut is just telling me that this is not just anxiety and OCD. I'm concerned though that she doesn't have a definitive list of positive strep tests with all the illnesses I've listed. The mycoplasmic pneumonia was diagnosed on New Year's Day last year when our ped met us at the office at 6 pm and said, "I think it's mycplasmic pneumonia..... here are two prescriptions. Call me tomorrow and we'll decide whether to hospitalize her based on her condition tomorrow." He used the term "mycplasmic pneumonia." But never mentioned a test for it?

 

Would she still have markers a year later? We have an appointment to go back and see the rheumatologist/allergist on Thursdays just because I want to have a conversation with him to go over his findings from a year ago, which at the time just didn't seem too earth-shattering because by the time the test results came back, her hives had kind of disappeared. Now I"m going back in time in my mind and wondering....

 

Would love any CT resources you might have!

 

astrid

[nicklemama]

You are in the land of Dr Bouboulis and I would call tomorrow and get an appt. it may take a few months to be seen.

[JAG10]

Dr. Nancy O'Hara is 20 min from Dr. Bouboulis in Wilton, CT. The two of them share several patients. You can likely get in with her before 6 months, but she is private pay.(Someone on FB said a new patient appt with Dr. b is late August)

 

 

Whether your child has PANS or pandas or none of the above, that pediatrician's response to your concerns and observations was very telling of his approach to medicine and patients. The Ped we had at the time of diagnosis wasn't a completely on board doc either, but she listened and gave me her "this is what I know and this is what I don't know" which is fair. We did end up leaving her and getting another doctor who is also a DAN doctor. Even though my girls are not autistic, DAN doctors tend to be more open-minded than chapter and verse from the AAP and don't you dare lower my practice vaccination stats.

 

 

Edited February 26, 2013 by JAG10

[astridrobi]

Dr. Nancy O'Hara is 20 min from Dr. Bouboulis in Wilton, CT. The two of them share several patients. You can likely get in with her before 6 months, but she is private pay.(Someone on FB said a new patient appt with Dr. b is late August)

 

 

Whether your child has PANS or pandas or none of the above, that pediatrician's response to your concerns and observations was very telling of his approach to medicine and patients. The Ped we had at the time of diagnosis wasn't a completely on board doc either, but she listened and gave me her "this is what I know and this is what I don't know" which is fair. We did end up leaving her and getting another doctor who is also a DAN doctor. Even though my girls are not autistic, DAN doctors tend to be more open-minded than chapter and verse from the AAP and don't you dare lower my practice vaccination stats.

 

We have good insurance; Dr. O'Hara doesn't take insurance? What exactly are we talking about in terms of dollar amounts for a visit to her? We're already paying out of pocket for dd's hypnotherapist to get a handle on the trich. Not sure we can swing another giant chunk of money. :-/

 

Dr. Bouboulis--- off to google!

 

Thanks,

astrid

Edited February 26, 2013 by astridrobi

[JAG10]

I think between $600-700 for the initial evaluation and blood work. When I say she doesn't take insurance, I mean you have to pay up front and then you submit for reimbursement.

She'll get you started on a treatment plan and then follow-up 4-6 weeks later which runs $475/hr or portion thereof. You email her an update ahead of time so she keeps the appt tight. She will not replace a pediatric doc tho.....none of these guys will.

I've spent a lot of money on a lot of specialists and Dr O'Hara is worth her weight in gold.

[Kathy4Him]

Thank you all so much for your replies!

We live in Connecticut, and my gut is just telling me that this is not just anxiety and OCD. I'm concerned though that she doesn't have a definitive list of positive strep tests with all the illnesses I've listed. The mycoplasmic pneumonia was diagnosed on New Year's Day last year when our ped met us at the office at 6 pm and said, "I think it's mycplasmic pneumonia..... here are two prescriptions. Call me tomorrow and we'll decide whether to hospitalize her based on her condition tomorrow." He used the term "mycplasmic pneumonia." But never mentioned a test for it?

 

Would she still have markers a year later? We have an appointment to go back and see the rheumatologist/allergist on Thursdays just because I want to have a conversation with him to go over his findings from a year ago, which at the time just didn't seem too earth-shattering because by the time the test results came back, her hives had kind of disappeared. Now I"m going back in time in my mind and wondering....

 

Would love any CT resources you might have!

 

astrid

 

 

 

Our ds 23 is being treated by a rheumatologist. Maybe you can convince yours to treat at lest with antibiotics. We are using steroids, antibiotics and immunosuppressant - cellcept. on our 4th month now, will do at least 9 mths. just a thought if it takes a while to see someone else, since you have an appt. thursday.

[Hopeny]

I second the Dr O'Hara/Dr B suggestion. They are both phenomenal and will add different things.Sorry to tell you this but I took out 401K loans last year to pay for it all and DD is improving, its all worth it. There is no gentle way to say this and I don't mean to sound harsh but it is good to put a financial plan in place for treatment. Last year I think all in was probably $15k or so for us, including meds, supplements, psychiatrist, psychologist and all of my high deductible co-pays (wow what a bad year to choose that plan!!!!). With Dr. O', my insurance reimbursed me about 25% of the initial consult. She is worth every penny. Dr. B. takes my insurance. We also have a lyme doctor who is very pricey too. Many doctors do not take insurance because they spend lots of time with you and would have to battle insurance for reimbursment. First consult with Dr. O I think was 1.5 hours no interuptions, her full attention, and she actually read DD's history and lab work before the visit. My hope is that this investment will help my DD live a better, happier life...There is sticker shock in the beginning so once I accepted that is the way it is it really enabled me to find the best care that we could manage, even though it has meant many sacrifices and a lot of flack I take from my husband.

[astridrobi]

I second the Dr O'Hara/Dr B suggestion. They are both phenomenal and will add different things.Sorry to tell you this but I took out 401K loans last year to pay for it all and DD is improving, its all worth it. There is no gentle way to say this and I don't mean to sound harsh but it is good to put a financial plan in place for treatment. Last year I think all in was probably $15k or so for us, including meds, supplements, psychiatrist, psychologist and all of my high deductible co-pays (wow what a bad year to choose that plan!!!!). With Dr. O', my insurance reimbursed me about 25% of the initial consult. She is worth every penny. Dr. B. takes my insurance. We also have a lyme doctor who is very pricey too. Many doctors do not take insurance because they spend lots of time with you and would have to battle insurance for reimbursment. First consult with Dr. O I think was 1.5 hours no interuptions, her full attention, and she actually read DD's history and lab work before the visit. My hope is that this investment will help my DD live a better, happier life...There is sticker shock in the beginning so once I accepted that is the way it is it really enabled me to find the best care that we could manage, even though it has meant many sacrifices and a lot of flack I take from my husband.

 

 

So BOTH Dr. O'Hara and Dr. B? Do they specialize differently?

 

astrid

[nicklemama]

I hate to break this to you, but between my DS and myself (I have rheumatoid arthritis), we see three docs who do not take insurance. These docs do not treat us for everyday variety stuff. The sad reality is, if you want an open minded doc who will spend more than 15 min with you, you may very well have to pay out of pocket. Our insurance reimburses 60% for these docs. I pay upfront and fill out the form and submit the receipts. DS's PANS doc does take insurance, fortunately.

[Hopeny]

Dr B, IMO, is a brilliant immunologist. He has given me great insights for my pans and non pans kids. I find his knowledge of antibiotics invaluable. Dr. O' is an integrative pediatrician, I count on her for the non antibiotic stuff and guidance on the antibiotics too. She is incredibly knowledgable. I have three core md's for my dd, I share with all what the other is doing. I don't put all my eggs in one basket with any one of them, these are complex conditions and they require a thorough approach. Think of a house that has storm damage. A general contractor may do done simple stuff but if you have to rewire the electric panel you would probably bring in an electrician. Your contractor would bring in someone specific to lay tile etc. every specialist will contribute something to you and your child's condition