mini update on my son, possible PANS/PANDAS, etc

[ktgrok]

So, this is the summary I wrote up last night for today's follow neurology appointment:

Summary

Jack had a dramatic, sudden onset of OCD like intrusive thoughts, restricted eating, general anxiety, irritability, oppositional behavior, meltdowns, difficulty concentrating or following multistep directions, difficulty understanding math concepts he previously understood, fidgeting nearly constantly, hyperactivity, complaining that his hand was “wiggly” when doing handwriting, feeling that things were too hot that were fine to everyone else, saying people were being too loud, and extreme difficulty falling asleep.

Symptoms improved temporarily on ibuprofen, but returned when discontinued. Completed a round of Azithromycin on 12/17/18.

As of 1/17/19 the fidgeting and twitchiness has mostly gone away. The intrusive thoughts (he calls them “worries) have just recently decreased tremendously. There is still some difficulty cognitive and physical stamina, with following multistep directions, and irritability/frustration, although that is also somewhat improved. The restricted eating continues with no real change.

 

 

The appointment itself was....not very helpful.  In good news, EEG is normal (well, going to go over the report myself because I trust no one, but that's what it says). In bad news, the doctor said he can't say it is neurological as he can't find anything, so he has to say it is psychiatric, except he thinks a  psychiatrist may very well say it isn't psychiatric. Um, okay. Meanwhile  he can't/won't say it is PANDAS,  but he's not a PANDAS specialist and someone who is a specialist may say that it is, and I may want to get a second opinion from a specialist, and oh, by the way, he just quit and is moving to California because he's sick of being a generalist and having  to see everything from autism to epilepsy to ADHD tobrain injury etc etc and not being able to give any one of them the attention it deserves. He's actually moving to Stanford, where the top PANDAS clinic is, and said he looks forward to learning about it. He did seem to indicate that had my son's strep titers or mycoplasma titers been high he might have felt comfortable diagnosing, but without that just wouldn't/couldn't. At least he was honest that he was in over his head, and advised a specialist, but dude, that would have been helpful to know a month ago when I first saw you!!!!! Or hey, when I freaking called to set up the appointment and specifically asked if they treated PANDAS.

Now, the other issue is that my son is significantly improved from where he was although still irritable, lack of cognitive stamina, and serious food restriction but that could be from the celiac, if he has it. Do I try to find a specialist, potentially Dr. Reuven Bromberg in Miami (a 4 hour drive, and I'd have to bring my 1 yr old along), or the clinic in Tuscon that works with your PCP (assuming I can get my PCP on board), or just wait and see if he  keeps getting better? Wait until we have celiac biopsy results and repeated lyme test results (first one was positive for band 41 both IGG and IGM so lab advised retesting)? At this point, other than the food restriction, he's doing pretty well comparatively. But then again, today he's cranky, tired, says that he wants to do something fun but things that used to be fun aren't anymore, crying hysterically because I won't let him veg out on screens all day, doesn't want to even go outside and play, etc. And being very oppositional in general (saying no for the sake of no). But he was up super early to make the doctor's appointment, and has a cold, so that is effecting everything too. 

I think maybe I'll give myself the weekend to think on things. Maybe message his primary and get her input for whatever that is worth as well. Oddly, so far the only doctor willing to say PANDAS out loud and think he may have it is his gastroenterologist! But she can't diagnose it. Sigh.

 

 

 

 

 

Edited January 18, 2019 by Ktgrok

[Carol in Cal.]

Is Jack your 7 yo?  Because that tends to be the age where kids start to argue a lot anyway, judging from these boards.  And the cold is undoubtedly making him cranky.  

Having said that, it’s great that you put PANDAS on the table, because it sounds so textbook but doctors are not always tuned it to it because it’s a more recent diagnostic pattern.  Especially the improvements with anti inflammatories are classic.  

[ktgrok]

I’m definitely open to other explanations, just haven’t found them yet. We saw an ENT yesterday to explore if his issues could be caused by enlarged adenoids - ent doesn’t think so but is sending him for an X-ray to check the adenoids just in case. And we have an appointment with a recommended child psychiatrist on March first, the soonest we could get an appointment. We also did an allergy panel but that was unexceptional- very minor reaction to one mold and nearly undetectable to dust mites and that’s it. Have also checked blood sugar, thyroid, b12, etc so definitely  casting a wide net. 

And yeah, that’s where we are at. If the ocd was still as bad as it was I’d be calling the specialist for sure. Where he is now....I am not sure.

[ktgrok]

29 minutes ago, Carol in Cal. said:

Is Jack your 7 yo?  Because that tends to be the age where kids start to argue a lot anyway, judging from these boards.  And the cold is undoubtedly making him cranky.  

Having said that, it’s great that you put PANDAS on the table, because it sounds so textbook but doctors are not always tuned it to it because it’s a more recent diagnostic pattern.  Especially the improvements with anti inflammatories are classic.  

He turned six in September:)

and it’s not the sassy backtalk type stuff that the oldest did- more shutting down and refusing anything/everything like a hungry tired toddler. 

[fairfarmhand]

How’s he sleeping?

[prairiewindmomma]

In your shoes, if you've already done the celiac biopsy and other GI stuff that you need to, I'd be tempted to put him on the autoimmune paleo protocol and get him out in the sunshine doing sensory work and give it a few weeks and see what happens. I'd stick to a routine as much as possible and focus on quality sleep.  I mention this because at about that same age we discovered that certain food dyes and other things really kinda tweaked Oldest in a way that wasn't a food allergy but definitely affected his ability to focus and be comfortable in his own body.  The autoimmune paleo protocol is very close to food trials to suss out food sensitivities/allergies and it will have the benefit of 1. resetting his tastebuds to celiac protocols, 2. building healthy bacteria in his gut and 3. allowing some healing to happen in his gut lining.  

It's going to kinda suck putting a 6 yo through that (Youngest is newly 6), but if he *is* self selecting food because his gut feels crappy in general, you should see some more foods adding back to his diet as you move along and his gut heals or you're going to sort out what's triggering behavior.  If you *don't*, then I think you've got a decent baseline for saying this must be either a sensory or psych thing and you can focus on food chaining.  Staying on a super limited number of foods like that isn't sustainable long-term nutritionally, especially when you've got celiac on the table. 

I'd also look at adding vitamin D, a B spectrum, and some other safe vitamins to his diet..... When you have autoimmune issues those are both commonly affected and even if your labs look decent in that regard, I personally feel a boost in energy and stamina when I go beyond decent into optimal.  

If all of that doesn't settle down in a few months, I think you've got some really good baseline info to really push for more answers....but I'd look at gut and sensory stuff because I think things further down the road if this doesn't resolve could look like more meds. I'd be hesitant to do abx unless needed because it messes up the gut and I'd be hesitant to do psych meds unless I was sure they were needed. The gut/sensory stuff would give me peace of mind either way. 

------adding......the half life of milk protein is 17 days.  For Youngest, we really didn't see her behavior improve until nearly 3 weeks after going off of dairy. It REALLY sucked putting a 3 yo through the food trials, but it proved that dairy was causing her reflux and insane meltdowns.   You might be surprised by what you find out.

[ktgrok]

Right now if I put him on auto immune Paleo he would starve to death. I’m not kidding. At this point we are just trying to get food into him so he doesn’t starve. And we don’t have the biopsy for the celiac yet. That is being done on the 28th. He may not even have celiac. Fun times. Lots of questions, very few answers.

[cintinative]

9 minutes ago, Ktgrok said:

Right now if I put him on auto immune Paleo he would starve to death. I’m not kidding. At this point we are just trying to get food into him so he doesn’t starve. And we don’t have the biopsy for the celiac yet. That is being done on the 28th. He may not even have celiac. Fun times. Lots of questions, very few answers.

 

You don't want to put him on a gluten free diet before the endoscopy either. It would change the results. So he needs to stay on gluten until the day of the endoscopy. Once the endoscopy is done, you can put him on a gluten-free diet right away. It won't hurt. 

What did his celiac panel blood work look like?

[ktgrok]

Yes, we still have him on gluten. So of course that may be a huge chunk of this. We just won’t know until we have those results. His TTG-IgA was 6 with reference being <6. He’s slightly anemic with slightly low ferritin and low vitamin D (25). The anemia and vitamin D could very well be causing what we are seeing now, the low mental and physical stamina, irritability, brain fog, etc. I do not believe they could’ve caused the sudden onset OCD. Which now seems to be pretty much gone in the last few days, nor the sudden on set twitching and fidgeting and hyperkinesis that also are much better, but maybe? We will be re-checking all his levels when we do the endoscopy. That way he doesn’t have to be stuck again while awake. Oh, and B 12 was very good, I cannot remember if she did folate. So maybe all of it was some Bizzarre manifestation of very slight anemia? But the time range also fits for a pandas flare which I’m reading is about 6 weeks typically. My thought at this point is maybe to find out how long it takes to get into the specialists. If it’s going to be a months long wait maybe I’ll go ahead and schedule and then see how he is closer to then. And cancel if we are continuing to improve.

[ktgrok]

Yes I’ve joined national and local groups. There used to be a pandas clinic much closer but the Doctor Who runs it is on medical leave and definitely. So really the closest is Miami. At least that I found so far. I’m not willing to go to someone who doesn’t take insurance and can’t prescribe medication, etc. Some people on these forms are convinced you can correct scoliosis with essential oil’s so I am being careful to take everything with a grain of salt, LOL.

[Carol in Cal.]

59 minutes ago, Ktgrok said:

He turned six in September:)

and it’s not the sassy backtalk type stuff that the oldest did- more shutting down and refusing anything/everything like a hungry tired toddler. 

Poor little guy!  It sounds like you’re on the right track, though.

[prairiewindmomma]

Are you on the cancellation list for the biopsy?  I thought you were already post-biopsy and GF.   Odds are a good chunk of this may be celiac disease. All of my friends who have had it and then gone GF say that they had no idea that they were feeling so very, very bad until they had a baseline of what normal felt like. The bad was physical and mental.

Poor little guy. I'll keep praying for y'all.

[ktgrok]

18 minutes ago, prairiewindmomma said:

Are you on the cancellation list for the biopsy?  I thought you were already post-biopsy and GF.   Odds are a good chunk of this may be celiac disease. All of my friends who have had it and then gone GF say that they had no idea that they were feeling so very, very bad until they had a baseline of what normal felt like. The bad was physical and mental.

Poor little guy. I'll keep praying for y'all.

The doctor we want to use (the only one my son is comfortable with, and since he is the patient, I'm going with that) only does them a few times a month. We were on the cancellation list for the 7th, but there were no cancellations so the earliest is the 28th. Our follow up appointment to get biopsy results is february 5th, although she will post the report to the patient portal as soon as she gets it, I think. 

And I actually initially asked for celiac testing because I also had heard it could present as mental health/psychiatric symptoms in children. It has been linked to depression and anxiety and irritability. But no one seems ready to say that the sudden onset OCD and weird fidgeting/twitchy motions could be because of celiac. Including the gastroenterologist who is, ironically, the one doctor who is the most suspicious of him having PANS/PANDAS. So if the GI doctor doesn't think celiac is the cause of that stuff, that leaves me looking back at PANS. And when I asked the one of the leading researchers on PANS at Stanford about celiac, and if that would be considered a rule out for PANS she said actually it is something that can co-exist, that 20 percent of kids with PANS have another autoimmune illness such as celiac, thyroid, diabetes, etc. But again, we don't even know if he HAS celiac at this point. (we did pretty much rule out IBD though)

15 minutes ago, Indigo Blue said:

Take this with a grain of salt if you need to, but I've somewhere read that gluten intolerance causes dark circles under the eyes. Don't know if it's really true. Of course, it could be caused by other things. Just a thought.

Yes, or anemia. 

[ktgrok]

Basically, we've pretty much ruled out absence seizures, other neurological issues (sort of...it was a pretty half hearted neuro exam in all honesty), and IBD at this point. Celiac is likely but not sure, lyme is probably not but need to retest to be sure, anemia is known but not severe enough o explain all symptoms, vitamin D is low but not super low, and no one seems to think that the anemia or vitamin D were low enough to cause the severe symptoms were were seeing at onset, but they may be enough to explain what we see now. Clear as mud, lol. 

I do think at this point I need a definitive answer to the celiac question before seeing anyone else or doing anything else. 

Edited January 18, 2019 by Ktgrok

[Noreen Claire]

I haven't read the other responses, sorry, but wanted to mention that my DS9 with suspected PANDAS (doctor is iffy on the diagnosis in general) has smaller, less-severe 'relapses' of symptoms when he has a cold, had a vaccination, or has a loose tooth. Basically, any time he has inflammation of any kind, his symptoms come back, though milder, for a time.

[SurfingTurtle]

Hi there, I just wanted to share something I've been looking into. The Nemecheck Protocol. I'm looking into it because of a similar issue:  medical problems that cant be pinned down, possible neurological or psychological. It is interesting because it doesn't really require any diet sacrifices and seems very safe. The science discussed on his you tube channel is fascinating. 

[ktgrok]

So it seems that the Rothman Center at USF in Tampa MIGHT maybe maybe still be taking PANS/PANDAS  patients despite the lead doctor leaving. I'm going to look into that, as it is about 2 hours or a bit less, and the aquarium that we like is there so we could make a day out of it or something. 

[Crimson Wife]

My special needs child has been dealing with suspected PANS for a couple of years. Her integrative doctor believes it is PANS based on symptoms and response to treatment but as the source of the triggering infection was never identified, he's calling it "suspected PANS" rather than giving the official diagnosis. Anyways, we have seen improvement with resveratrol, turmeric, and a high EPA fish oil. We may go the IVIG route as soon as we are able to get in to see a doctor willing to order it for her (our current integrative doctor doesn't do IVIG).