My son w PANDAS is much better – what we did

[MC2]

Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible.  I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!)

Background of Symptoms/Onset

What I now know to be classic PANDAS symptoms started up when our son had just turned 9 (following a 103.8 fever, we don’t know what the virus/bacteria was bc our urgent care only tested for influenza which was negative). He had no prior health issues and was a great student/very social/sporty etc. All around super easy kid. First symptoms were withdrawing from normal activities and wanting to be on iPad all the time, strong separation anxiety, and restlessness/fidgetiness. Soon, he began to have major panic attacks, often several in a day, dilated pupils, look of terror on his face, frequent urination, extreme irritability and oppositionality, weird emotional regression and inappropriate smiling when something bad/upsetting happening, handwriting issues, refusal to go to school (I now fully understand why), inability to fall asleep (but then sleeping 12 hrs), extreme restlessness/moving around (doing summersaults on bed, standing on head while on sofa etc, but not a pure “tic”), major light and noise sensitivity, complaints of blurry vision, and major joint pain.  We finally dug out of him that he had intrusive images. This was like a game of whack a mole. Entire family a wreck. Pscyhologist/Psychiatrist said he had severe anxiety and possibly late-onset ADHD (and that these other symptoms were just his way of expressing his anxiety as pain etc), and so we chased down the anxiety/psychological symptoms with cog behav’l therapy and everything only got worse. Tried Zoloft, did nothing other than major side effects/whole body hurt. 

Footnote Re When This All Started

While it is very clear that his big fever/infection set off this major flare, we realize now that our son probably had smaller flares in previous years. They were minor enough and he was a high functioning kid, such that he “hid” them well or managed around them etc. The main symptoms of these earlier, smaller flares were separation anxiety, complaints of scary images (we assumed from commercials for horror movies etc but now think they were the intrusive images) and frequency of urination (especially following strep 2 years prior to this flare). The thing that was always odd to us was that he was such an outgoing, easy, great student etc, that we never understood the separation anxiety bc it didn’t match his personality profile. Our PANDAS doctors have explained that this illness can creep up with each strep exposure (or later, other viruses/bacteria) until you get an illness that “puts the straw on the camel’s/child’s back” and the immune system gets over some sort of tipping point. I think some of what is out there in the literature about PANDAS makes too much of the suddenness of onset. I think the final, full blown, horrible flare that leads you to treatment can come on suddenly, but a child might have been “ramping up” over years, with each infection getting them higher on the rung of a saw tooth formation.  This is important bc I think it very often delays proper diagnosis (see also observations below relating to difficultly in diagnosing kids who don’t get tics or ritual based OCD).

Other Observations in Diagnosing PANDAS

Three other observations that might help other parents, especially those in the diagnosis phase. This is based purely on personal experience (I am no doctor), observations from reading the literature, and input from several other families I have come to know with PANDAS.  I think all of us lose sleep at night knowing that there are children out there who are not getting properly diagnosed, and meanwhile recovery gets more complicated the longer diagnosis is delayed (and worse, usually there are incorrect diagnoses along the way…)

1)   1. OCD, which is one of the primary diagnostics for PANDAS, can take many different forms. I thought that OCD would be extremely obvious, like hand-washing or other rituals that are repetitive. I came to learn only after months of psychologist apptmts and talking with my son that he was having what is called “pure O” where there are no rituals, but rather intrusive thoughts or images. This OCD is far more “invisible” and further, the children often don’t want to talk about it bc they are embarrassed about what their intrusive images or thoughts are about if they are taboo subjects. When children have PANDAS with tics or the type of OCD with rituals, they might get diagnosed more quickly because tics and rituals are (painfully) visible. I remember in one of my many pre-diagnosis 1am google searches coming across PANDAS and thinking it sounded like a possibility, but since we didn’t have “OCD” or tics that we didn’t have PANDAS (though I also now wonder if the fidgety/restlessness is sort of the same type of brain response to swelling as tics)

2  2. Our expert PANDAS doctors explained to us that with PANS/PANDAS there seem to be two groups of patients: a) those for whom antibiotics alone will help – these are likely children who are diagnosed relatively early on (my own suspicion is that these kids often have tics, which are obvious, or perhaps are even reacting to a current strep infection), and those whose immune systems have gotten so whacky from years worth of miss-firing autoantibodies that they will need second line treatments to get the brain swelling down and to tamp down the immune system’s hyperactivity (steroids and “steroid extenders” like plaqenil/cellcept/ritux are key here etc). I wish I had understood this a little more earlier on because I initially read so much about children who were basically completely cured from simply taking antibiotics (perhaps in combo with Naproxen). But when your child takes antibiotics and it doesn’t help, this can be very confusing/disheartening and can perhaps even lead a parent/doctor to think it is not PANDAS despite all other signs pointing there. 

3)   3) Regarding other co-infections…. In our son’s case, his diagnosis was relatively straightforward once we got to the experts. He had no pre-existing health or behavioral challenges etc., and he tested negative on the usual set of co-infections (e.g. lyme).  That said (and again I am no doctor, just sharing info I have gotten from our drs and from reading), it seems like there are quite a number of of bacteria and viruses that can lead to inflammation of the brain with the same litany of awful symptoms (e.g. the worst-off Lyme patients seem to me to be identical to /are PANS patients). Other posts on this forum have far more info about these other bacteria and viruses. It is honestly rather overwhelming when in the diagnosis phase of this. The main point I want to share is that what I have garnered from our doctors: for any sort of post infections autoimmune brain inflammation is suspected, you will want to follow a protocol of i) treating the infection if it is ongoing and since they can be hard to find, you typically treat as though it is active (generally this is done w antibiotics – though getting the right one matters), ii) bringing down the brain swelling (often with steroid type drugs if it doesn’t happen on abx alone, which is very often the case, or at a minimum, with Naproxen), and iii) preventing future infections and hyperactive autoimmune responses (often long term abx plus a steroid extender of whatever potency deemed necessary). In some cases patients aren’t given ii, but those seem to me to be early treatment cases (or cases where drs haven’t realized there is brain swelling/or have health conditions preventing use of steriods). Some people will try homeopathic options or diet changes for i or iii, but this may or may not be strong enough to get the immune system to behave properly (e.g. there are children who don’t make enough vit B12 (MTHFR mutation etc) where a lot can be gained with B12 supplements or who are too low on vit D etc).

What We Did

Like many of you, we did all the cog behav’l therapy and SSRi stuff. This was of zero help whatsoever. I remember trying to get him to attend school: I would go into the classroom and sit in the corner and that is when I realized he literally could not do the work. I saw his handwriting – it was like a 4 year old version of himself. He was slipping away even with cognitive abilities. We realized at this point something very awful was happening and started to fear a brain tumor (though never had any seizures so we were put off by most drs on this). We kept going to our pediatrician who has known him since birth. She was surprised by all this since he was a “very straightforward” kid prior, and thankfully she ordered blood work including strep titer levels. Found elevated strep titer level (435 on a test where 300 was max of normal) but no active strep or mycoplasma infections, low Vit D, and elevated monocyte levels. She said could be this thing called PANDAS and put him on Keflex. Didn’t help, he got worse every week. Did one oral steroid 5 day course (60mg/day) and we saw a glimmer of improvement. Then, thankfully we got in with experts at Stanford. We owe them our child’s life (treatment details below).

The Stanford PANDAS experts did an extremely thorough exam (done regularly throughout treatment) and even more bloodwork (negative on Lyme and various other coinfections, had elevated levels in 3 out of 4 on Cunningham panel, and again high monocyte, low vit D and high titers). He had choriform movements when his hands were stretched out (apparently you need to look for even slight movements/it is rarely what you see on YouTube videos as that gets diagnosed sooner these days), and movements with his tongue. Also could see it in the “milkmaid test.” Very distressing to watch. Joint pain all over the place. Skin rash indications of some sort (I never really followed that part of exax). They also did handwriting evaluation - also affected. They were very certain he had PANDAS/it was a clear case. Ordered MRI to rule out brain tumor and vasculitis. Meanwhile he was put on Augmentin and 880mg Naproxen/day (kept on Zoloft mainly so as not to have more than one medication change). No improvement. Took weeks to get in for MRI (huge overload at hospital due to need for anesthesia). Immediately following MRI/ruling out of brain tumor or vasculitis, we commenced a 3 day high dose Solumedrol infusion. (Major issues getting him to hospital for this – massive fear of needles/hospitals etc, had to have police escort and used valium - barely helped).  But thank goodness we got him there, we could tell he was better even by the third day of infusions. (Note he had allergic reaction to the HD Solumedrol, but we found that if we kept him on Benadryl before, during, and for 2 days after, he was fine, also cut out Naproxen and used Tylenol instead for that time period). By 7 days post infusion, we could see significant improvement. That improvement went like this: very up and down, 2 steps forward, 1 step back, the first symptoms to be relieved were the extreme oppositionality and some of the crazy restlessness/fidgeting, he was maybe 30% better overall). Overall, through below-detailed treatments, his symptoms disappated in the reverse order in which they arrived. Weird, but I guess makes some sense based on the brain swelling and then de-swelling.

After the first HD Solumedrol 3 day infusion, we did the following:

-       As soon as we could tell the Solumedrol was helping, we started him on Plaqenil (RH drug used for long time, goal is for it to help calm immune system generally and also “hold” the effects of the steroids).

-       Continued on antibiotics, but we switched to Amoxycillin which is supposed to be 100% strep effective (eventually to a phrophelactic level dose)

-       Stayed on the 880mg/day Naproxen and existing Zoloft

-       4 weeks after first set of infusions, did another 3 day HD Solumedrol infusion

-       Then, for the next 4 months, we did 1day HD Solumedrol infusions, spaced out by 4 weeks. (fortunately we did not see “slippage” between infusions, which I think is why we were only put on Plaquenil instead of one of the other, stronger steroid extenders like Cellcept or Rituximab, which are also being used in combo with the HD Sol). The 1 day infusions were far more tolerable (better with sleep and not feeling awful). Our son improved with each infusion by day 7, though there were side effects (weight gain, cognitive fog, a different kind of inability to fall asleep – we used Benadryl every night); these side effects tended to subside the further out we got from every infusion so week 3 and 4 always the best.

-       We never did IVIG. We were told that it is currently only working in 20% of patients our drs were treating – perhaps b/c too many in the donor pool have PANDAS or b/c of particular strain of strep around here. I also see that very often IVIG is prescribed together with HD Sol, so maybe the latter is the more key med. (Also, our insurance wouldn’t have covered IVIG, at least without a fight – good news is HD Sol is very common for autoimmune disease/is not hard to get approved like IVIG). We were told that the HD Sol pulsing was a more aggressive treatment protocol anyway.

Other non-medical things we did that I think helped:

-We had his friends over as much as possible, even when he was super sick and really could only play video games (his friends were great and helped with that, and I have never found a 9 yr old boy who doesn’t want to play video games).  Gaming was his favorite thing to do b/c he said he didn’t have to deal with his intrusive images/feelings of fear/sunlight. The social was a big big help I keeping him as normalized as you can be when not attending school, and later, in getting him back to school (that is how to see your friends the most!)

-I think one of the best things we did, in retrospect, was take vacations that were in the sun/lots of swimming/with other kids. This got him back in better shape, but the sun exposure also seemed extremely helpful. I have since heard there is lots of research on the role of Vit D in other autoimmune diseases like MS (maternal grandmother has this), so we are giving 5000 IU of Vit D/day.  Also, I think our vacations are helpful b/c of getting them out into a different routine/change of scene helps the brain forge new pathways.

-We tried getting him to do academic work, but this really never worked at all… Best was Kahn Academy, which he would do some of but only review of stuff he already had learned before getting sick/he would always stop where “new learning” would start. We really struggled with this b/c the advice is to push them and this is hard if your kid won’t even let you read to him). We only got him back to academics/school after done with all HD Sol infusions (perhaps brain fog lifting)

- Nightly Benadryl was big help for sleep. Have stopped now, but drs said to fine to use as needed.

Today

Son is so much better (outside the academic context I would say 95% back). Anxiety/fear sensation/intrusive images, joint pain, fidgeting, restlessness, irritability, handwriting - all the other symptoms much much better.  Back in school! Very social. Main remaining issues have to do with cognitive functioning/cognitive fatigue, specifically with short-term memory and processing speed.  The anxiety he still has is actually what I would term reasonable anxiety at having missed so much school and not having his brain fully back up and running academically. I would be anxious about that too.  We are not sure how best to help the cognitive functioning come back other than to wait. This is our challenge today. We also have not had a major test of his immune system (no major illnesses in our house since he got so sick) so we will have to see if his immune system “holds.”

Questions we would love help with

1.     How to help cog functioning (anyone tried “cog med” or neurofeedback? Anything else other than time?)

2.     I still don’t feel like I have a clear sense of whether this is supposed to improve with puberty? Any insights there would be very welcome!!!

[ABdualPT]

Thanks for posting. This is really helpful and encouraging. 

[MountainMom]

Thank you so much for sharing your story. I really appreciate your insights. How long did it take from beginning treatment until you were at 95%? As someone in the beginning stages of all this, working on diagnosis, I'd love to know about length of recovery. 

Thank you so much.

[MC2]

From the start of HD Sol and Plaqenil until he was significantly better was about 4 months, but then it has gradually improved in smaller increments since then.

[bobh]

On 9/2/2017 at 4:08 PM, MC2 said:

what is out there in the literature about PANDAS makes too much of the suddenness of onset.

Amen.

[jenact64]

Hi, MC2,

Thank you so much for your detailed story... much of it is similar to ours with DD(10). I too, dismissed PANDAS almost two years ago (late-night searches on anxiety in children) as she was not presenting with tics, or "obvious" OCD (she has irrational fears, mostly surrounding our house catching fire and other threats to me, her mom, and we were already 1.5 years in from what I believe was onset when she admitted to a therapist she was having this). I also could not name the date it started, though I sensed it was fall of 2014, but my husband had just lost his younger sister, DD had a very strict teacher and she later admitted to being bullied on the bus... so the diagnosis of anxiety we first got that October made sense... too bad they failed to note the strep diagnosis three days following (she was complaining of stomach aches when we went in for the anxiety diagnosis... she does not get the classic sore throat, so I feel certain she already HAD the strep.)

We see our first specialist in two days... my question now is, how do you hold the school district (and your spouse) at bay when she has been pulled from school and they all expect her to just go along willingly with the assigned four hours a week of tutoring? She was exhausted after the first session (2 hours straight) and has had MAJOR meltdowns each morning we've tried since, necessitating the session to be canceled... though I believe she is simply not capable of the work right now, I am certain everyone thinks she's "playing" us... her dad even thinks it is "calculated." I'm hoping a diagnosis on Tuesday will help, but I still don't know what to tell the school... how long was it before your son could do schoolwork, and did he have to repeat a grade? Not the end of the world, but she's isolated enough already between missing school and the age regression, which has deterred her from playing with some of her friends (she's leaning toward the kids who play a bit younger)... I'd hate to see her miss out on returning to her current classmates.

 

 

[bws1565]

The one thing that I can't get over is the police escort to the hospital.....

We had serious issues getting blood drawn.  We needed 4 people to hold her down.  Although PANDAS wise she is much better, this is one issue that we cannot get past.  We will need some bloodwork soon.  Any ideas?  I think the perceived fear is greater than the pain.....

[eacampbell67]

very helpful, we are just starting treatment for dd, thanks for sharing

[Smac]

On 11/5/2017 at 3:11 PM, jenact64 said:

Hi, MC2,

Thank you so much for your detailed story... much of it is similar to ours with DD(10). I too, dismissed PANDAS almost two years ago (late-night searches on anxiety in children) as she was not presenting with tics, or "obvious" OCD (she has irrational fears, mostly surrounding our house catching fire and other threats to me, her mom, and we were already 1.5 years in from what I believe was onset when she admitted to a therapist she was having this). I also could not name the date it started, though I sensed it was fall of 2014, but my husband had just lost his younger sister, DD had a very strict teacher and she later admitted to being bullied on the bus... so the diagnosis of anxiety we first got that October made sense... too bad they failed to note the strep diagnosis three days following (she was complaining of stomach aches when we went in for the anxiety diagnosis... she does not get the classic sore throat, so I feel certain she already HAD the strep.)

We see our first specialist in two days... my question now is, how do you hold the school district (and your spouse) at bay when she has been pulled from school and they all expect her to just go along willingly with the assigned four hours a week of tutoring? She was exhausted after the first session (2 hours straight) and has had MAJOR meltdowns each morning we've tried since, necessitating the session to be canceled... though I believe she is simply not capable of the work right now, I am certain everyone thinks she's "playing" us... her dad even thinks it is "calculated." I'm hoping a diagnosis on Tuesday will help, but I still don't know what to tell the school... how long was it before your son could do schoolwork, and did he have to repeat a grade? Not the end of the world, but she's isolated enough already between missing school and the age regression, which has deterred her from playing with some of her friends (she's leaning toward the kids who play a bit younger)... I'd hate to see her miss out on returning to her current classmates.

 

 

Regarding your daughter who is refusing to see the tutor - my son who is now 13 had this same issue two years ago.  He would cry and hide when the tutor came to the house, and she was a friend of the family's that he knew well.  Your daughter is not playing you - she probably finds it very hard to concentrate for that long.  The kids' concentration is severely affected by the brain inflammation PANDAS causes.  Consider trying what we did while you wait for treatment from the specialist - we removed our son from his brick and mortar school and put him in online school for a year.  Check to see if your school district has an online option as some do.  If not, there are both private and public online options you can try.  We used Laurel Spings Academy - which is private (so you do have an extra cost involved) -  but the good thing about it was since Laurel Springs has a revolving enrollment there is not a solid start and end for completing the grade.  Thus, your child has ultimate flexibility.   If they are having a bad day (or week) - you can lighten their load.  If they feel better - see if they can handle a little more to catch up with work.  My son had a very bad year that year and there was a whole month (after he rejected his tutors) that he couldn't get any work done at all.  But once he started to respond to treatment, he started working again. He had to work into the summer to finish 5th grade (I think just until the end of June), but it was worth it to have that flexibility and to not worry about the school and tutors breathing down our necks.