ADHD, PLMD, PANDAS and digestive/growth issues

[530044]

Hi- this is my first post on this forum though I've been reading and following to try to figure out the puzzle of my my son's behaviors. He's 9 and was diagnosed with ADHD and anxiety, and sensory processing disorder   with a neuopsych when he was 6 though behaviors had been around for many years starting around age 2. He was also diagnosed with Periodic Limb Movement Disorder at age 6 after a sleep study. Recently he has shown new "tic" behaviors like repeating swear words words over and over (under his breath) and making repetitive sounds. We are seeing a new doctor and he ordered a test for PANDAS. His strep titters came back as 382. He took a five day course of amoxicillin -the tics do seem lower but his frequent rage issues continue to increase by the day, as well as extreme irritability and defiance, temper tantrum and emotional reactions. 

On top of this is a craving for and or /refusal to eat many foods and chronic constipation. We tried a two week trial of gluten free followed by 2 weeks of dairy free. Dairy free seemed better but very difficult because milk is what he craves. He has poor weight gain and has fallen off the growth chart. 

His sensory behavior has increased and he can only have very soft materials touching his skin (takes off clothes and wraps himself in a blanket whenever he is at home.)

He is taking foculin xr, Kapvay and Prozac. We are stopping Prozac in 10 days to see if that helps.  He also takes Zyrtec for seasonal allergies and miralax. We just restarted iron supplements for PLMD as his serum ferritin levels are at 30 (way below the 70 his doctor would like to see.) 

I'm wondering about the connection between ADHD, PLMD, anxiety, SPD, PANDAS and digestive/growth issues. Does anyone have a child with a similar profile? Thank you for your help!

 

[bobh]

We have had ADHD-like symptoms, lots of anxiety, PANS, digestive troubles, and at one point sensory issues with clothing - missing the PLMD (though never tested for that) and growth issues.  Our symptoms have morphed many times over the last 4 years, with only OCD and anxiety being truly consistent - followed by stomach aches that have come and gone.  My feeling is that each PANS/PANDAS kid reacts differently because the immune system (and brain) are both so complex.  Its remarkable (to me) that there is as much commonality as there is in PANS symptoms, but they are still many and broad, and therefore, so many labels applied before PANS or PANDAS is discovered.

My comments:
1) it is often very hard to know if any changes during any specific one-time trial (e.g. gluten-free, dairy free, Prozac, etc.) are due to that change or something else (like allergies, exposure to someone sick at school) that happened to come along.  When I really care about checking out a particular drug or supplement, I try to get him on, off, and on again (more if possible), and record (preferably measureable) symptoms all the way through (including off before the start).  Nobody else that I know has the patience for this, but it has proven a couple of things quite definitively for our kid over the years.  It is unfortunately impracticle to do this for drugs or trials that require weeks for symptoms to change (Prozac is touted that way, but it also has been known to act within days for some cases).

2) The recommendation at https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf  (which is a website for doctors) is to try an abx for at least 2 weeks, and then try another one if the first one doesn't seem to work.  At http://www.pandasnetwork.org/understanding-pandaspans/antibiotics/ , it suggests that some patients don't see a significant result until 6 week on abx.

3) There has been some discussion in some PANS/PANDAS groups about low iron in these patients, and how giving more iron might not be the right thing to do.  Can't explain further right now, but if you don't find anything with a search here on that issue, I can dig out where I read that.

[530044]

Thank you Bobh for replying! I figured I'd give you a snapshot of our story just to elaborate : I have two boys 10 and 9. 10 year old was extremely active as a toddler and aggressive / sensory seeking. He was a normal baby but changed around age 15 months. He was finally diagnosed with ADHD and sensory at age 5 and we worked with a nutritionist (Kelly Dorfman) on his diet (we lived in Bethesda) and a therapist/OT too and he had a good last year of preschool and seemed to start growing out of his behaviors. 
As he grew older his aggression lessened but he did have a throat clearing tic and asked the same question over and over for several years up to about age 7. He developed an extreme aversion to meat. Lots of cases of strep and croup (every time he gets sick he has croup cough.) He has a 504 plan but school is generally good -is still hyper (occasionally, when he is sick or possibly when allergies are bad) and is on 15 mg foculin. Sensory issues seem gone. 

My 9 year old developed normally until about age 2.5 when he started showing similar hyperactive behaviors but not as aggressive. He was very sensory seeking and pushed and hit kids and was in their personal space/didn't seem to get their cues. He was on and off dairy after 5 days in the hospital with diarrhea at 10 months so his diet has always been restricted. He has chronic constipation, asthma, vocal nodules and had his tonsils and adenoids out in kindergarten.  He was diagnosed with PLMD in first grade. 
He was put on an IEP in his last year of preschool (we'd moved to Boston by then) and progressively added more symptoms as the years went by like rigidity, sensory issues with clothes, extreme difficulties with transitions and change in routine and tons of separation anxiety and fears of being alone. In the past 3 years he's developed rage episodes where he goes from being "stuck" to starting to explode and throw everything in the room, cursing and hitting and crying. These episodes have gotten so frequent that we almost had a crisis unit come to our house the other night. In the past year he's taken to coming home from school, removing his clothes, wrapping himself in a soft blanket, and watching the same Minecraft videos over and over. He mutters under his breath and makes repeated sounds, and every few minutes makes jerking movements with his body. We started him on SSRI's in the fall and this behavior had a huge uptick. We are off Prozac as of today. He's now got an RX for Risperdal to use "as needed" for the rage episodes. He also takes 15 mg foculin which helps with school and Kapvay (clonidine) in the late afternoon. When I described his "tics" to our new doctor he mentioned PANDAS which I'd read about but didn't sound like Sam because nothing came on "overnight" but has gradually built up over years. But now that I've read stories on the web about other PANDAS families I think both boys might have it and it started very early on when they were toddlers. Do you think this is possible? We had both boys strep titers tested. Sam's was in the 300's and Will's was 540. Sam took a Z pack for 5 days a few weeks ago and Will is currently on 10 days amoxicillin. Dr is not a PANDAS specialist and doesn't buy my theory that they both have had it for many years. Have an appt with Dr W at Children's in September (on the waitlist for something earlier!) and called the Pans/Lyme treatment center in Cohasset, MA  but it's expensive and not covered by insurance.
So, this is where we are right now and not sure what to do next!!! Really want to get a handle on things and maybe get more testing done before things get worse. 
Thank you for any insight!