Could my son have PANS/PANDAS?

[QueLinda]

I keep reading about the extreme cases of PANS/PANDAS, as in Saving Sammy. My son is nine, and can function just fine, but looking back I remember his behavior changing like a switch was flipped when he was about four -- suddenly defiant, aggressive & on sensory overload. He is not like that as much anymore (he still has a bit of SPD and some occasional emotional breakdowns), but it's the OCD symptoms of late that are really worrying me. I wrote up a timeline (including all the times *I* had strep throat) to try to make it clear in my head. I'm sorry that it's long, but if anyone would look through it and tell me what they think I would SO appreciate it.

12-2008: (Age 3 years.) Mom has strep throat.

8-2009: Henry turns 4 years old. Mom remembers him suddenly becoming aggressive & defiant soon after, as though a switch had flipped.

 

Winter 2010-11: (Age 5 years.) Mom has strep throat. Henry has a hard time with his baby brother (born 11-2010), screaming & running away whenever the baby looks at him. He blocks our path and demands we say the “password.” Every time he shows defiance he looks terrified, like he can’t control himself.

 

3-2011: (Age 5 years.) Henry starts school (K5) after being homeschooled. He cries and begs not to go. He follows the adult supervisors around on the playground and talks to them or wanders around by himself.

 

12-2011: (Age 6 years.) Henry is sick with a sore throat & soon after Mom has strep throat. Mom writes in a Facebook message that “Henry just threw an absolute FIT over my husband trying to take down the Christmas tree, and now he’s freaking out that Silas is LOOKING AT HIM.” This is a dark time, as Henry seems out of control. Dad wonders if he should be medicated & thinks there’s something really wrong with him.

 

1-2012: (Age 6 years.) Occupational therapy initial exam (for suspected sensory processing disorder) notes that Henry does not tolerate other people touching him, resulting in him screaming & running away; will only wear two pairs of pants; has poor coordination & a low frustration level; is unable to drink from an open cup without spilling or choking; has difficulty managing fasteners on his clothes; can’t blow his nose; is behind his peers with fine motor & written work at school.

 

2-2012: (Age 6 years.) Henry is on xifaxamin for 14 days for suspected SIBO.

 

5-2012: (Age 6 years.) Henry is diagnosed with fructose malabsorption, though it was suspected for six months or so prior.

 

6-2013: (Age 7 years.) Mom has strep throat.

 

5-2014: (Age 8 years.) Mom notices that Henry is stuttering the last word or syllable when he speaks. The speech therapist at school says she’s never seen this type of speech irregularity before. Mom also notices that Henry has started spending up to an hour in the bathroom. He says he is wiping. Much later we find out he is using piece of toilet paper after piece of toilet paper to try to clean every trace of stool from himself. He begins to pull stuffed animals (which he never played with previously) from the basement, name all of them, and keep them on his bed.

 

2-2015: (Age 9 years.) A virus hits our household and although Henry never becomes really ill, he complains about a sore/dry throat. Mom notices that he washes his hands sometimes multiple times after using the bathroom. He begins to obsess about urinating, mainly right before bed. He says he feels like he has more urine waiting to come out. He will come out the bathroom and then get an anguished look on his face and run back in, sometimes multiple times. He cries and sobs and says he can’t stop. He begs Mom to help him.

 

Present: (Age 9 years.) Henry’s been complaining of a sore throat on & off for over a month, including starting up again Friday. The obsession with wiping & urinating continues. He has a tiny pee accident at school & insists Mom brings him clean clothes, though she can find only the slightest drop of dampness in his underwear. The stuttering continues. His emotional instability, though MUCH improved from when he was five or six, continues on occasion. He is very attached to his bedtime routine (Mom reads to him & watches a BrainPop movie with him; he goes to the bathroom multiple times, puts on lotion, puts on lip balm, drinks some water, gets hugs & kisses, drinks more water, gets hugs & kisses, checks water bottle for level of water, then does more checking & drinking of his water while Mom waits for him to turn out the light).

 

(It's the weird urinary frequency thing that really made me suspect PANDAS. It seems like that comes up a lot as a symptom.)

[Chemar]

Hello

I am bumping up your first post so others can respond

[bigmighty]

You are describing my child's early childhood exactly. He has PANDAS - diagnosed at age 12 at the time of his 1st (extremely) major exacerbation. It took 17 1/2 months to get him into remission. Definitely see a PANS-friendly doc, get a throat culture and some labs and discuss your concerns now. Better to be on top of possible strep immediately after it emerges than to go down the rabbit hole we ended up falling into.

[melmix]

Definitely sounds like PANDAS.

Have you considered getting his tonsils out?

My son also has a hard time with wiping. His solution is just to not wipe at all so he doesn't have to touch it and then

throws his underwear in the back of his closet. Ugh.

Melmix

DS 8 PANDAS/PANS/Lyme

[MaryAW]

Here is a link to a thread about doctors who have helped with PANS/PANDAS. You need to get your child to a knowledgeable PANS dr. and have him evaluated.

 

http://latitudes.org/forums/index.php?showtopic=5023&hl=+pandas +doctors&page=1

[QueLinda]

Thank you so much for your replies.

I didn't include in the timeline that Henry had colic as a baby, has numerous food intolerances (including gluten & corn) & has always seemed *slightly* on the spectrum to me. He inherited one copy of the MTHFR defect C677T as well (I have two). There are also multiple autoimmune disorders in the family, and I'm being tested for Lyme right now.

 

We're in Wisconsin, and unfortunately I cannot seem to find a practitioner close to us who is PANDAS-knowledgeable. I did e-mail the timeline to Dr. Kovacevic in Chicago, who is about two hours away, and he said, "On the basis of information provided it is VERY likely that your son does indeed have PANDAS. Although he appears currently relatively functional it is possible that things may turn for the worse in the future. I would definitely keep on eye on him and his symptoms."

 

Bigmighty, that sounds like what you warned about. Scary stuff. But then I second-guess myself, too, because Henry is seems like a NT kid on the surface. I've chased so many rabbit holes regarding his health throughout the years that I fear I'm making something of nothing. But...I don't really think that, in my heart.

I'm also having an e-mail exchange with Amy Joy Smith, in California, and waiting to see if she works with clients long-distance.

 

Our family doctor is fairly open-minded (she's a DO with an interest in functional medicine, but she works in a traditional practice and doesn't have any experience with PANDAS). I'm hoping to find someone knowledgeable to guide us and have our doctor run the tests so we don't have to travel. At the very least, our doctor said she would sign off on the IgeneX Lyme test for Henry, though I sort of want to wait for my results first.

 

Also, our doctor ran both strep blood tests, and they fell in the normal range. (I know that doesn't mean he doesn't have PANDAS, though.) However, the ranges used in this paper http://online.liebertpub.com/doi/pdfplus/10.1089/cap.2014.0062 are much lower, and by their definition he would test positive. Not sure what to make of that.

Edited March 24, 2015 by QueLinda

[dasu]

My daughter presented in the classic overnight change pattern. My son was another story; he demonstrated episodic ODD, minor urinary issues and inappropriate behavior coupled with anxiety/fears. This went on for about two years before he started to show other signs like OCD and tics and then major violent aggression and we got him into a PANDAS doctor.

 

You may also want to pay particular attention to your second child, this tends to run in families.

[QueLinda]

I just made an appointment with Dr. K in Chicago for Monday. We're pulling Henry out of school for the day and my husband is taking off work. I'm going to start a new thread asking what I should bring with me, what to ask, etc. I'm freaking out, but also glad to have a path to walk. Thank you for all your input.

[bigmighty]

My son had no elevated labs whatsoever, even though the labs were taken the same day his throat culture popped positive for strep. Did you guys actually do a throat culture, or just the labs for your DS?

[QueLinda]

We just did the blood draw for the two tests. Our doctor indicated she would not do the throat culture.

[bigmighty]

Same thing happened w/DS. Initially consulted therapist about anxiety. She called our Ped and asked them to send lab slip. They did and tests were all negative. Assumed no strep connection. Finally got to PANS-friendly doc six weeks later. She did throat culture, which was positive. Ran labs again same day and they all came back negative. If you have a throat culture now, I am guessing it still may be positive for strep in spite of neg labs.

[QueLinda]

If you have a throat culture now, I am guessing it still may be positive for strep in spite of neg labs.

Do you think Dr. K will order a throat culture? I'm not sure I could push our doctor for a swab today or tomorrow. I could try...

[bigmighty]

If you ask, I am certain Dr, K will do it.