Advice. Strong suspicion of PANDAS/PANS in our 7 year old

[Jennyjumpup]

My daughter had sudden onset OCD, age 7, in September. I remember it down to the minute!

Before I start, here is her infection history from 2016, all ear infections. I am waiting for her medical records. I know some of the infections she was treated with abx but for sure she was not treated with abx. on 9/15/16. It was considered viral. She also has a history of enlarged tonsils...still to this day. Also, just chronic colds, sinus infections, allergies her whole life. Just prior to onset of symptoms, I was told by our primary to send her to ENT but then all this happened!

 

Ear Infection History 2016:

2/26/16

3/10/16

5/18/16

9/15/16 (onset of symptoms 3 days after this)

 

Vaccines: Heb B in April 2016, July 2016.

 

We did switch a school and she had excessive hand washing at age 5 for about 3 weeks (again, still waiting for all her medical records, I do not know if she had an infection prior to handwashing or if this is pertinent/coincidental). Not an "OCD" type symptom since then. Very social, smart kid. Loves friends. Very smart. No school problems. No defiance problems. No other diagnosis of ANY kind. An easy and fun kid!

 

Sept 18th: (3 days after ear infection diagnosis) Hoarding (things like her bloody tissues from a bloody nose! Bringing home her milk carton from lunch and making us save it!), making parents take pictures of everything she did (including things like using the restroom, even her urine and poop!), emotional, EXTREME separation anxiety. Per her teacher, crying 8 times a day in class and saying “I miss my mommy.”

Sept 22nd: First visit to a therapist who diagnosed her with "Generalized Anxiety."

Sept 25th: Severe compulsions. Bordering everything, fear of contamination, isolating herself, depressed, complaining of headaches, stomach aches, hyperactive at times (like she could not sit still on a couch or had to get up and down several times when doing homework). In addition, she cannot be in a room unless her mother is present. Literally followed mother into every room. Started walking backward and doing “starting from the beginning” type rituals. She also has to do everything symmetrically. If she touched something with the right arm it had to be touched with the left arm. Still could get to school but we would be late and drop off was a nightmare. Separating from mother was very hard.

Sept 26th: Took her back to the therapist (we were freaking out!) Diagnosed OCD.

Sept 29th: Stayed up until 2am doing wiping, tapping, bordering rituals (this was about 6 hours worth of rituals.) If her father came close to her to try to help her, she would scream as though she was being tortured. Having fits of rage. Hyperactivity.

Oct 7: . Hoarding spit in her mouth. Will not eat at school or gymnastics practice. Clenched fists ALL DAY. Sensitive to touch, sounds. If we played the radio in the car she would freak out. PLUS still all the above mentioned symptoms. Also, often times, in a "trance-like" state. Also by now she is hitting, kicking, and spitting. Also very immature behaviors. A little bit of baby talk, playing with her private parts (kinda like toddler does), sitting in childish type poses (hard to explain that unless you see...but trust me).

Oct 15th: Mother now on a leave of absence from work. She would not be without me. Still could get her to school. Urinating and defecating all over the house. Extreme bathroom fears and rituals.

Nov 3rd: First email to an intensive treatment program for OCD. Symptoms getting so severe.

Nov 28th: First day of intensive treatment. By this point, never wear clothes unless mother dresses her, severe contamination issues. Wont bathe in a bathroom (only in the sink in the kitchen with Dawn dish soap), complex walking patterns, rituals, throat clearing tic, wont walk on carpet, has urinated on her floor in her room at least 15 times, door rituals, still has extreme rage and emotional labile, will not step on a crack....plus more.

Ok, so when all this started, I looked into PANDAS. But to me, it didn't make sense. I said to myself "No history of Strep, we changed schools and she had a hand washing history for a few weeks." Fast forward to now. I will say she has made improvements for sure since we have started ERP. She eats and has conquered some of her rituals. She is now on Lexapro. But for sure OCD symptoms still remain. She wont use a restroom. She has to go outside or in a toddler potty. I spoke to the director of our program about PANDAS when we arrived, and she said "Its over diagnosed and the treatment is the same." For whatever reason last week though, I googled it. My mouth dropped. Now that I have a better timeline in place, to me this is it! It has to be! Especially ear infection 3 days prior to onset of symptoms. Her decline was so fast (which believe me, we took notice of when it was all happening but the "experts" in our lives said that it was pure OCD and nothing else.) We also did not sit around and watch this happen. She was in weekly therapy (sometimes 2 times a week). I know people who have OCD (Not the PANDAS type) can get really bad. But just 6 weeks after onset of symptoms I am looking into an intensive treatment program for my 7 year old! That's fast!

We went to a doctor yesterday. Very nice and allowed me to dictate what I wanted ordered. He also says he has treated some PANDAS. But after I showed him video footage of her defiance, emotional ups and downs, crying rages, he pulled me into his office without my daughter and asked if I thought she had been abused. Actually, we did look into that when this all started and we are confident that is not the case. He suggested Art Therapy for her. Art Therapy!? He also took notice of her immaturity, impulsivity and just kinda "wacky attitude." My brother visited last week and also noticed that. She has tantrums like a 2 year old when she does not get her way. All I keep telling these people is...."THIS IS NOT MY KID!"

I have an appointment with another doctor (Integrative Medicine Doctor in Irvine, Dr. K) and I have seen actually two reviews about her treatment of PANDAS and PANS and people have been happy. I don't get to see her for a couple weeks though and at least I have some labs done now (waiting for results).

Here are my questions:

1. Am I on the right track? For parents with kids with diagnosed PANDAS/PANS, have you experienced a similar timeline, symptoms etc?

2. Any recommendations for doctors who know how to diagnose and treat in Southern California. But I will go anywhere.

3. Is it coincidental we changed schools and this started? (My daughter was nervous about changing schools but it was not extreme at all. In fact, she was well liked and she even knew 2 kids in her class. Teacher was very sweet)

4. Just generalized thoughts on my post. Even a personal experience or 2!

Thank you for your time! I know this was a little long!

 

[pr40]

to me this seems like PANS, since the cause was the ear infection, which may not be strep.

my first question would not be if this is PANS or PANDAS condition but what you should do in addition to trying to find the right dr. who can help you understand the symptoms and offer some treatment.

Your child reminds me a lot of our son who was finally, at 8 years old, diagnosed with ASD -- highly functioning.

whatever it is, it seems that inflammation is a part of it and so, in your place, I would try to lower it. that would include changing food she eats at least for some time, and starting on antiinflammatories. we had some success with hi EPA fish oil, ibuprofen, and low sugar, no gluten or dairy.

[MamaBeartoCharlie]

Infection and that kind of onset definitely sounds like PANS/PANDAS. Any tics?

 

I'd go back and get pushy with that doctor whose treated pandas and ask for abx. Argue with him that what can it hurt to give her a trial. You may not receive the right abx at first but if she responds you will definitely know you're on the right track.

 

Your daughter's story is heartbreaking to read and I can only imagine the state you are in worrying about her. When we first figured this out the first parent with a PANDAS child I spoke to told me to get my badge on because I was the new sheriff in town - and that I'd have to lay down some law with doctors along the way. Go back and refuse to leave without a script!

[Jennyjumpup]

Yes she developed a throat clearing tic. That lasted 3-4 weeks. I just received her medical records from her pediatrician. Remember I mentioned the hand washing problem in kinder. I know for sure it was fall, 2014. Just don't remember the exact date. But in her medical records, she had URI/ear infection diagnosed 9/30/14. She was treated with Augmentin! Then, no hand washing problem.

 

I have called Amy Smith NP in Northern Cal. Waiting for a call back.

[qannie47]

Hmmm. I don't find myself saying this often, but your case sounds about as straight forward a case of Pandas as it can get. If I remember correctly, ear infections can be caused by strep bacteria. I do not think this most recent set of symptoms that started in september is the first episode either. Dr. K theorizes that Pandas is a slow building storm, with minor clues that don't catch a parents radar (like the 3 week hand washing episode..but then it goes away). Think back to any weird quirky behavior, that was Atypical, maybe lasted even only a few days, but then went away. Dr. K's research shows that there often seems to be that BIG Explosive episode right around ages 5-7. Also, once the first Dominoe is tipped over with Pandas, you do not have to have strep to trip off future flares...because the Immune System is now broken somewhat and is producing "misguided" antibodies whenever it is turned on.

[Jennyjumpup]

Qannie47: I agree. The more I build my timeline the more convinced I am. And thanks for the additional info. Those are some questions I have had. Wondering about it kinda "building up."

[Gpookie]

Qannie47, you've written the most perfect summary of PANDAS I've ever seen.

[MamaV]

Oh wow - sounds similar to my son's second flare at age 6 (first flare at age 4 not recognized as pandas). Overnight symptoms so familiar - the hoarding, having to do things symmetrically, worried everything was poison, fits of rage, extreme separation anxiety, wouldn't go to school, extreme sniffing tic... It's amazing to me that PANDAS is still being dismissed or overlooked with this classic presentation. My son didn't have any illness that we knew of prior to second flare - he tested negative for everything. Still, looking back I can't believe I didn't see PANDAS or PANS more clearly. My son has responded quite well to antibiotics! Pretty much tic and OCD free, though sensory issues, mood and hyperactivity will flare with illness - a work in progress. Good luck to you. Amy Smith is great

[MamaV]

Oh, and the very knowledgeable doc who finally diagnosed PANDAS in my son explained that strep tests (even blood tests) have significant error rates (i.e. false negatives), as do others, and our kids may react to such small exposures that tests can't detect. It is a clinical diagnosis. This seems to call for some trial and error with antibiotics.

[Jennyjumpup]

MamaV...turns out it is Mycoplasma and possible Lyme. But still so glad I was a crazy mama and researched nonstop. I figured this out on my own. Even found a doc who was willing to order labs I just had to tell them what to order based on my reading.

 

Thanks for your post 😀

[Timmy]

Jenny jump up, how is your daughter doing? You described my 7 yr old daughter and a very similar experience with the medical and psych field. My daughter ended up with a NGT because she completely stopped swallowing fluids and food and it was determined she must have had a near choking episode. I questioned PANDAS and everyone was so focused on the absence of a recent strep infection and stating that is is a controversial diagnosis that one don't believe in.

Things improved for several months but just returned last week, suddenly. Now I am trying to decide how to approach it.

[Jennyjumpup]

Jenny jump up, how is your daughter doing? You described my 7 yr old daughter and a very similar experience with the medical and psych field. My daughter ended up with a NGT because she completely stopped swallowing fluids and food and it was determined she must have had a near choking episode. I questioned PANDAS and everyone was so focused on the absence of a recent strep infection and stating that is is a controversial diagnosis that one don't believe in.

Things improved for several months but just returned last week, suddenly. Now I am trying to decide how to approach it.

Here is the update:

So its been about a month since I just started researching PANDAS/PANS. I have been eating and breathing all this info. I am on this site and three Facebook sites. Through all the info from all you amazing parents we have a diagnosis!

 

Mycoplasma and Lyme. MARCONS also came back positive. She has been started on Zithromax.

I have noticed a decrease in her hyperactivity, attention span and headaches....no question.

 

Here is the thing...when I started researching PANS, she actually had improved so much since her onset of symptoms in September. She had been started on Lexapro and started an Intensive OCD therapy program which was 3 hours a day, 4 days a week (all at 7 years old.....so sad). Even with the improvement, things didn't sit right with me. She was still very hyperactive, fatigued, had headaches and a short attention span. Her father and I just kept saying "This isn't her!" That's what lead me to PANS. FYI: when I brought up PANS to her Intensive Program, they basically said they don't believe in it.

 

In the last month, we have seen one PANDAS specialist but in my heart, that practitioner is not the right one for us. Very knowledgeable, but my gut says to keep searching. So now I am flying to see Dr. T at the end of the month. We also just had our house tested for mold yesterday. Today, I have a phone consult with a LLMD to discuss her labs to see how to proceed with that diagnosis.

 

Point is.....thank you to all of you. The main thing I have learned is to move quick and fast with this diagnosis. I don't want another exacerbation like we had last fall. The worst experience of my life. We might go broke as we treat this.....I don't care. I want to get my daughter right and I will do whatever it takes!