Cycles of symptoms

[babsmom]

we are at our wits end with our child. he was a fine young man (11) and suddenly started became confused and a little mute, mildly catatonic, minor ocd. he returned to baseline after 6 days and then was fine for 6 months, now he is having 6 day episode regularly (every 4-6 weeks) and then returning to his baseline with no symptoms... the confused state has gotten milder while he is on zithromax but he does have rages... the wierd thing is it lasts 5-6 days the whole state and then he returns.. he can go to school between 'episodes'

 

he is taking ibuprofen and zithromax

has lots of sinus infections

had has a runny nose since birth

has no history of mental illness in the family

CF, MRI CBC all negative

igenex babesia microti came back positive and lyme was inconclusive

 

the boy was seen by neurologists, psychiatrists, psychologists, therapists, pediatricians with no diagnosis....

 

we are going to duke university for brain health

and going to dr j in connecticut for lyme

 

looking to hear from others if there is anything you have seen that goes on and off like a switch not wax/wane style...seriously he can go into the shower like a psycho and exit the shower like a cute, normal kid... or he can be reading a book after school one minute and ten minutes later his shoes are too small, he is picking at his toes and all his clothing need to come off (sensory?!) raging..

 

[Chemar]

Hi and welcome to the forum.

I am bumping your first post up so others can see and respond.

[MomWithOCDSon]

We saw some of that rapid cycling behavior in our DS when he was your son's age. He, too, had lots of sinus/upper respiratory issues leading up and into a PANDAS dx and treatment.

 

I don't really have any explanation except to offer the concept that, maybe, it's like there's a glass for immune response or "maintaining" behavior, or both, and that glass just gets filled up within the "normal" time frame you're seeing, and then it spills over and your DS can't successfully combat the onslaught any longer?

 

With the sinus, sniffling, etc. issues, you might want to look into whether or not myco p or strep may have "colonized" in his sinuses; some families have found almost cyst-like bacterial colonies in their kids' sinuses. Sometimes protected by biofilms, that bacteria can survive and induce an immune response for a protracted period.

 

You're headed toward some very highly-qualified medical providers, so hopefully they'll help you get to the root of this. Just a couple of things to maybe pose to them, if they don't offer them up themselves. Good luck!

[ibcdbwc]

We have a very similar situation. Prior to puberty our son was classic PANDAS which then morphed to PANS - but flares were compulsions and brain fog and some hyperactivity. It was indeed switch like. They resolved with zithromax and were manageable. They occurred about 4 times a year. At age 11 we were symptom free for almost a year and a half. Then, in 7th grade, our son began monthly flares. Extreme anxiety, OCD, personality change, and severe slowing of processing speed. His cognition and speech processing would dramatically decline. He became like a little professor and though he wasn't depressed he would philosophize about the worlds end. Each time, we would see very swollen nasal turbinates and suprax would be added for sinus infection. Each time the flare would last about a week. It was our week from .

 

After 7 months of monthly flares, we finally found that he had antibodies to gluten. His tissue transglutaminase was elevated. At the time he was on two antibiotics - not flaring - but not quite right either - though he could complete his work at school well. His IgG levels also were very low - his immune system was tanking. We removed gluten and dairy (dairy just because I had always suspected he was sensitive). We witnessed dramatic results! The flares stopped. His health improved. We were golden for a year!

 

Sadly, in 9th grade this past summer, our flares have returned. We are on a 6 week cycle. His steep cognitive decline lasts for about 4-5 days - his OCD - about 7-10 days. He has some spaceyness coming out of a flare. Some rage on either end of a flare. He is frustrated, confused and feels powerless. He still struggles with sinus issues. His whole body is declining again.

 

Like Nancy said, I believe in the cup theory. He can handle some toxins to the body. He can handle maybe a food dye here, and some dairy there. He can handle some exposure to virus here or maybe strep there. But when he is exposed to stressor after stressor after stressor his cup overflows. His body shuts down. He's not able to detoxify and he flares. Add puberty to that mix and the enormous energy that it takes to grow a body-- it's a recipe for disaster.

 

Here is what we are planning: we are working with micronutrient therapy and methylation - to try to balance and strengthen his detoxification systems. We are working on gut health and digestive health as his flares do indeed come with profound constipation. We have just completed new rounds of stool studies and OAT and food allergy tests to widen our scope of treatment. We are adding digestive enzymes. We are also planning to see Dr. L in Feb who will no doubt send us to her ENT colleague. We know his sinus issues contribute to the problem. He has purple circles under his eyes when he flares as well. We are resuming CBT as past trauma plays a role. He feels a flare coming on -- and his past experiences get all wrapped up in the flare. We need him to accept that while we are doing everything to help him, he himself is not powerless.

 

These kids are like onions and the layers need peeling and peeling. The cycling always leads everyone to say Lyme and parasites. So if you have Dr. J on board you should be in good shape to have that covered.

 

You mentioned Duke. Feel free to PM me. We live in NC and have not been to Duke. Would love to know who you see.

 

Oh lastly, I just wanted to share that I found online a man who had the same presentation -- every 6 week cycles- on and off like a switch. He had posted a an online letter when he was 16 because he wanted to help inform others. I tracked him down -- the wonders of facebook -- and he kindly responded. Today, he is a resident in medical school. His "cure" came in the form of gluten free/dairy free/sugar free, probiotics and treatment for lyme. Interestingly his symptoms started at age 12 as well.

[dasu]

Can you clarify: Are your son's cycles absolute or (perhaps and?) does he toggle back and forth seemingly randomly?

 

@ibcdbw did you ever do the contrasting blood work in and out of a flare?

 

 

Our kids also have the purple circles under their eyes and flushed cheeks during a flare...interesting. So many unconnected dots.

Edited January 19, 2016 by dasu

[babsmom]

typical scenario he has been going to school getting A's for 25 days he comes home and reviews schoolwork with dad, dad will tell me he wasn't on top of his game as far as comprehension and tell me something might be looming, he'll then throw something if I criticize him (not in character) and me and dad will exchange worried glances... he will then go to bed but come out 2-3 times to draw a picture, or roam... and then go to bed and wake up as though he is in a fod with limited interaction, if any then at a preschool level... he'll have a different voice and get agitated quickly, rage a bit, get very sensory about his clothing, he'll complain his shoes are too tight and rage that he needs new ones right now and then try on every shoe in the store only to not find a pair that 'fits' - he will eat cheerios for breakfast which he wouldn't touch any other week of the year....this behavior will last a week and then suddenly he will pop back to himself in middle of dinner or reading... with his normal facial expressions, voice, personality... he will remember incidence that occurred but deny anything weird about it...for example his shoes fit fine, he didn't buy new ones bec nothing in the store was his size...he missed his cousins birthday party because "it was too far".... (untrue) either denying the episode or not recalling it at all... no purple eyes

he will be healthy and well, cute for another 28 days only to have this happen again...

[ibcdbwc]

@dasu - we have contrasts from prior flare to a recent normal week - (but have yet to do back to back comparison from the same "cycle." Next on the list. Hard to convince so many blood draws). We did note a very high IgE with one set of "flare labs" - no change in neutrophils, basophils, lymph et cetera. Recently onto an ammonia connection perhaps as in flare - BUN elevated and BUN/Creatinine also elevated despite normal creatinine. Had always just though "dehydrated" despite drinking but now think trouble with clearance due to genetic polymorphism and gut microbes.

 

@babsmom- dasu's suggestions is a good one -- to do labs on your normal day and then on day 3-4 of your "flare week." See if anything is different.

[Rosen_Rot]

Hi, I am new to the forum and I found this thread while searching for cycling behaviors pattern. It's been 2 years now, @babsmom, @ibcdbwc, I hope you found help for your children and would appreciate if you can share how your boys are doing now.

My 10 yo son, with ASD diagnosis, flares every 4-6 weeks with OCD, separation anxiety, severe irritability, SIBs and crying. Excessive urination and thirst, cold hands. This is how it looks like, but the core issue seems severe migraine headache that he was not able to communicate in the past. The onset is always sudden - within minutes - and it lasts a week, then resolves spontaneously. I am aware these are all PANS symptoms, but I tend to hear/read about much longer flares.

The flares used to happen during full moon, but it doesn’t happen anymore since he’s been on high dose melatonin for migraine prevention. He has Mast Cell Activation Syndrome and does have mast cell related symptoms e.g. flushing and increased MCAS lab results during flares. Treatments for MCAS help him, but not for flares.

It all started at 5 yo together with chronic diarrhea, regression of skills and cognitive decline to moderate intellectual disability. These were all reversed with treatments, but flares - only partially or for some time. Now they are getting worse. Does it sound like PANS? Does it happen in PANS to have so severe flares resolving on its own within a week and cycling with that regular pattern?

I would really appreciate to talk to parents who experienced something similar…