Jake's story

by his mama, Jeannie.

Thank you for asking about our journey with Jake and how we came to understand that PANDAS was the likely culprit in many of Jake's ongoing issues.

Jake had so many things happen throughout his life, medically, that now looking back...I am certain impacted his mental health and led to his struggles with bipolar depression and anxiety.

When I was pregnant with him, I craved and inhaled shit food. Soda, chocolate, chips, fast food...I was a beast if I didn't have those things at certain times. All through his life, ironically, Jake craved those things as well. I often wonder if it was my craving and ingesting those that led to his cravings....or do growing babies in their mommas tummies have some sort of impact on what their mommas crave...

As an infant, Jake couldn't have breast milk because my body didn't make any. (with either pregnancy). So we went to formula. We had to try so many before we found one he could tolerate. It made him irritable, sleepless, caused lots of phlegm and congestion. The doctor didn't put formula and his symptoms together, and he was often put on meds that included pseudoephedrine or guaifenesin. Those also contributed to sleeplessness and Jake rubbing his balled up fists on his sheets until they were raw. He was not a cuddly infant.

In addition to this he had thrush a number of times. I treated it with Gentian Violet each time. And then, the cradle cap. (as a 4th grader he got a yeast infection on his head that was so bad we had to shave his head for months...talk about devastating). And strep more times than I can even remember.

This was 30 years ago...I tried the best I could to manage it all. But he was always on antibiotics, antihistamines, decongestants...he also had loads of earwax that had to be removed by an ENT on a regular basis.

As a youngster, he was thought to be a child with Aspberger's. He had facial tics, he talked under his breath (teachers and administrators would accuse him of talking back...he was repeating what was said to him we thought....we later learned he was talking to his own voices which told him how bad he was), he couldn't sleep, he was always short tempered, he was unhappy. He had OCD and was a neat freak. Everything in it's place. Everything in order. He had the cleanest desk in his classroom. He had to earn the best grades....I remember the first time he got a B on a test. He said "Mom!! It's okay, I am like all the other kids now!!" and after that his OCD strive for perfection was still there but not with grades.

Jake was not the best eater. He did this thing where he would eat the same foods...3 times a day for days or weeks on end. Things like scrambled eggs with sliced hot dogs. Peanut butter and jelly on one brand of white bread. Chocolate milk or just milk...sometimes I would buy a gallon every day. My pediatrician said this was okay...let him eat what his body asked for. And if I had chocolate in the house...say a bag of Hershey kisses...Jake ate the whole bag before I even knew it. He was a sugar and carb addict. Big time.

Let me interject here to share that I was in a terrible marriage. Abusive both verbally and physically and Jake was often included in that abuse. Or witness to it. So for a long time, I thought that his behaviors were related to this. His father called him a pussy, a sissy, and would pull his hair, yell at him, throw things at him... I got away from that marriage, but always felt that was a large part of what made Jake struggle.

Then, as a teenager, Jake began struggling even more. Rage, depression, sleeplessness, poor diet...you name it. And he was diagnosed with Chronic Plaque Psoriasis.

Around junior high age we had finally moved into the age of the internet where you could start really looking things up and I started looking and looking. Typing in everything about Jake's symptoms to see what I could learn, find out, and that is when I started seeing information about PANDAS. Everything about PANDAS fit Jake. And while he was older now, and had a new doctor, we couldn't get anyone to confirm PANDAS at that time.

A little more about Jake...he was a brainiac. He took the ACT test cold and scored a 34. He took the SAT tests and scored in the top 10%. He learned German nearly overnight and made his instructor so mad because he could speak and write the language so fluidly, but didn't do the homework...so she gave him a grade of a D for two years straight in high school (no homework ya know). He rebuilt car engines...self taught. He skiied, hiked, rode BMX, loved the outdoors like it was his religion...all while carrying the weight of bipolar depression and anxiety.

When he was 20, he went to a new primary care doctor who asked me about PANDAS!! He was certain this was largely what impacted Jake and he wanted so badly to help Jake as much as he could. He sent us to see a Psychiatrist for full blown testing and recommended electronic imaging of Jake's brain. We got Jake started on that path with a Psychiatrist that he loved. She did loads of testing, shared loads of information with Jake and alot with me, but not all because Jake was over age 18. She recognized the impact of PANDAS as well and shared a lot with us about what we could do moving forward.

Right in the middle of all these good things happening, Jake decided to move to Oregon. The Psychiatrist advised against this, asking Jake to stay and really give therapy and the other recommendations (diet, exercise, stop smoking pot, no drinking, less reckless behaviors) a try. She also was hoping we could get him approved for the brain imaging...

Jake was significantly depressed and anxious. However, he hid this so well that nearly everyone who knew him had no idea. He wanted so desperately to be okay. And I think, sadly, learning everything the psychiatrist had to share really further tanked him... there is no cure for bipolar depression or anxiety....

So, he moved. With the agreement that he would work on the things like diet, exercise, continued therapy. And he did. We set up a diet plan that included cutting out sugar and carbs; eating proteins and veggies at his meals. He did this for over a year and there was a marked difference in his physical health especially. The psoriasis was mostly at bay, his congestion and phlegm production was nearly non-existent, his headaches were few. But that depression and anxiety still reigned. He hiked, he biked, he tried the conventional gym membership.

I visited him often and each time we did a lot of "resetting behavior" with diet plans, etc. But each time there were small changes that grew larger....and the impact of social media and those who called themselves friends but were not just dragged him down.

Jake always knew and understood how bad his mental health was. He deeply wanted things to be better and he tried. He had many attempts on his life but he didn't really want to die...he loved life and lived it big when he was feeling good. Sadly, his mental health won out. About a year before he died, he told me that traditional medication only worsened his symptoms--that his own mind was his worst enemy and he was afraid of himself. In September of 2018, he made the decision to end his life.

Tara, looking back over his life and at all the physical ailments he endured...I am certain it all played a part in his overall well being. When I learned about PANDAS, and when his doctor and psychiatrist talked about it after learning Jake's health history--how could that not have impacted him? I have continued to learn as much as I can about it. As a lifelong educator for children with emotional and behavioral struggles -- I have learned that it a bit more widely known about now and other parents of the students I taught shared that their children had strep many times as young children...

I am certain that not getting breastmilk, not tolerating formula, having so many instances of the illnesses and strep so often played huge parts if not all the parts in Jake's life.

Jeanie