QueLinda

My son saw Dr. K in Chicago several weeks ago & he put him on 14 days of Augmentin as a test to see if he could have PANDAS. The abx trial is over and we're supposed to e-mail Dr. K with our observations, and then he may have us do a steroid burst as well. I just found out yesterday that I have chronic Lyme -- I'm guessing I've had it for a long, long time, if not from birth, so I could very well have passed it on to my son. I've heard that steroids are a bad idea if Lyme is suspected. Is this true? Why? FWIW my son's symptoms seems to get mildly better at first on the abx, but were pretty much back at the end of the 14 days.

It's day 13 of the 14-day trial, and I honestly don't know if he's better or not. He's been in the bathroom less (obsessively wiping is one of his symptoms), but he also says he hasn't been pooping as much. I'm wondering if the Augmentin is constipating him -- I know it's supposed to cause diarrhea, but he tends toward constipation with things. And he seems to be washing his hands less, but he still won't use the bathroom towel because it's "too linty." I'm guessing Dr. K will have him do the steroid burst, which I'm not nuts about, but maybe it will give us a clearer picture of what's going on.

It's Augmentin.

My son is on a 14-day trial of antibiotics. We saw Dr. K outside of Chicago & he wasn't sure if my son actually has PANDAS or not, but he ordered bloodwork & this trial of abx. We're supposed to e-mail him at the end of it and let him know if we've seen any changes. My son was not severely affected, but definitely had some OCD and anxiety. I think he seems better, but it's not a night and day difference. Do the abx work slowly, if they do work? Is it just too soon to say for sure?

Just got back from taking Henry to see Dr. Kovacevic. Almost four hours in the car total...I'm exhausted & I didn't even drive. Dr. K is a really different kind of doctor -- really messed with the kids, called the boys girls, called them "Mary Lou," asked random questions & circled back to questions he'd already asked. He pretty much ignored me & DH while he talked to Henry. I guess he was trying to provoke a response from him by saying nonsensical things. Then he booted both boys out of the room (the receptionist watched them) to talk to us. He said that Henry is not normal. He has Asperger-like traits. Barely looked at him & when he did, he looked through him & not at him. Has almost a mask over his face when he talks, like a puppet. And interacting with him is not like interacting with a nine-year old, but with a five-year old. I knew all this, but it was still very blunt. Of all the doctors we've seen no one has really LOOKED at Henry; no one has mentioned Asperger's, even though I've long suspected it. I tell people that Henry is still very innocent, like a little kid. The mask/puppet thing -- IDK. Maybe I'm just too close to Henry? I mean, he interacts with people. He gets along with other kids at school, including having a good friend. I think that's just when he's uncomfortable or with someone he doesn't know. He didn't like Dr. K -- he doesn't like it when he doesn't know what's going on. So...to find out if he has PANDAS or "just" Asperger traits or something else, he wants Henry to do 14 days of Augmentin, maybe some steroids after that, & report any changes we see. He said if it is PANDAS, & it's treated, Henry's Asperger-like traits would go away. Freaky. He thinks IVIG is the best treatment though, so if he decides it IS PANDAS we will have a lot to think about.

Thanks, bigmighty! I'm a little nervous about it. At the very least, if my son does have PANDAS, we'll have a diagnosis & can go from there.

Wow, thank you for posting that article. I have been giving my son Florajen4Kids which has Lactobacillus acidophilus and his behavior has worsened since I started. Going back to the Custom Probiotics d-lactate free.

Does he push for IVIG? My son is not as bad off as I've read some are, and I'd really like to *just* try antibiotics for awhile -- and hopefully not do IVIG. Will he support that?

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...

Thanks. I did e-mail him a timeline for my son before we made the appointment, and he responded saying it was very likely he had PANDAS. I replied to THAT e-mail again saying we'd be seeing him on Monday. So hopefully he'll actually read through it more carefully. Also...I'm reading mixed reviews on him, personality-wise. Just that he's knows his stuff but can be impatient with parents or downright rude. What did you think of him? He's possibly our only shot at treatment for our son if he does indeed have PANDAS, so we'll see him either way. I just want to be prepared.

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

Has anyone else here seen him? I'd love to hear impressions, what he might ask/order/prescribe. Also, in general, what should I bring or ask? I have the results of the strep blood tests my son had done last week, as well as some other tests he's had done over the years (Organic Acid Test, fructose malabsorption test). I will write down the supplements he's taking now. And I also wrote up a timeline of behaviors to try to make sense of everything. Anything else?

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.

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.

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.)