2 PANS kids fighting lyme and coinfections, our journey to healing

The Pfeiffer Institute, Chicago

The Pfeiffer Institute in Chicago promises drug-free hope to people who have behavioral, cognitive or mood disorders. I found them through an article I had read online that struck me as something that might benefit our son, specifically information by William Walsh PhD in regards to neurotransmitter activity and bipolar disorder. At the time it had been suggested our son might be experiencing early onset bipolar disorder because of the intense mood swings, the high and lows he was experiencing and the intense rages he could exhibit. So we called and made an appointment and a week later my son and I were in a hotel room in Napierville IL waiting for our appointment the following day.

The day was a particularly bad one for my son, it was toward the end of the summer in late August 2010 and the whole summer had been very taxing for him and us. I desperately wanted to get my son some help before school started the last week of August. I had kept him out of camp in the hopes that it would be easier for him than the year before where he had a basic little camp 3 hours a day and it went very poorly. Totally my fault as they were not equipped to deal with his mostly hyperactive behavior and it became a chore for the helpers and for my son. We decided to not repeat a negative experience and see if we couldn’t do fun stuff at home. Unfortunately that didn’t go well either. His routine was so out of sorts it made him more anxious than ever, which started to get more intense every day until 6 weeks in I had little or no control over his mood swings.

The summer had begun relatively ok, but as the weeks drew on his mood became increasingly more erratic, he was aggressive and generally angry at everyone and everything. He had a very small window of stress tolerance and the slightest thing could set him off. There were several days right before I made that appointment that I had to seriously evaluate taking him to a treatment facility his mood was so intense. His rages were going on for hours, sometimes as long as 12-14 hours at a time. If he fell asleep he would only wake a couple of hours later and start the violence all over again. His room was bare, and he still managed to drag his queen mattress halfway out the door. His door had been removed at that point I might add. In a fit of rage at my friends house he had smashed my car window out as we drove away. He did actually frighten himself so badly that I didn’t even react. At that point I was almost numb anyway so my reaction was destined to be slow. He would calm down for a short time but it was walking on egg shells for the rest of us. The rages didn’t frighten us as much as just exhaust us. Its hard to deal with a child who is demanding and raging nonstop for hours and hours, very exhausting.

I felt comfortable going to the clinic as we knew our son had elevated levels of histamine, high seratonin, dompamine and norephinephrine and he needed to be supplemented with iron and vitamin B12 which seemed to help both his mood and his allergies. Although all his symptoms didn’t quite fit they assured me they would figure it out with me.

On the morning of the appointment we took a cab over to the center and met first with a nurse who took a complete history and physical from me. The whole time our son was throwing things and fighting, out and out rage took over him for most of the time we were there. After what seemed an eternity I managed to fill in any gaps they had and we then moved on to another nurse who did a physical and took several vials of blood. It was amazingly fast and painless as they strapped him in a papoose, which sounds cruel but actually saved holding him down and restraining him for the necessary blood draw. I was actually ok with the way they did it, it was quick and painless. The only other times (twice) previously we had managed to get blood were total nightmares.

The tests took about 6 weeks to compile and it came back that my son did suffer from something called pyroluria, just mildly and they were able to compound some supplements and suggest some things we could do to resolve this disorder. Which in turn should stabilize his mood swings. In fact when he is good standing with B12, zinc, vitamin D, B6, iron and inositol his moods definitely improve.  I do know that our son definitely qualifies under several of the categories listed in William Walsh’s PhD article: Read below, I have underlined the things that we know are representative of our son but as you can see he has a little bit of some in all categories which confuses me:

“The three primary biochemical classifications of bipolar disorder are the following:

A. Undermethylation: This condition is innate & is characterized by low levels of serotonin, dopamine, and norepinephrine, high whole blood histamine and elevated absolute basophils. This population has a high incidence of seasonal allergies, perfectionism, OCD tendencies, high libido, sparse body hair, and several other characteristics. They usually respond well to methionine, SAMe, calcium, magnesium, omega-3 essential oils (DHA & EPA), B-6, inositol, and vitamins A, C, and E. They should avoid supplements containing folic acid. In severe cases involving psychosis, the dominant symptom is usually delusional thinking rather than hallucinations. They tend to speak very little & may sit motionless for extended periods. They may appear outwardly calm, but suffer from extreme internal anxiety.

B. Overmethylation: This condition is the biochemical opposite of undermethylation. It is characterized by elevated levels of serotonin, dopamine, and norepinephrine, low whole blood histamine, and low absolute basophils. This population is characterized by the following typical symptoms: Absence of seasonal, inhalent allergies, but a multitude of chemical or food sensitivities, high anxiety which is evident to all, low libido, obsessions but not compulsions, tendency for paranoia and auditory hallucinations, under-achievement as a child, heavy body hair, hyperactivity, “nervous” legs, and grandiosity. They usually respond well to folic acid, B-12, niacinamide, DMAE, choline, manganese, zinc, omega-3 essential oils (DHA and EPA) and vitamins C and E, but should avoid supplements of methionine, SAMe, inositol, TMG and DMG.

C. Pyrrole Disorder: This condition, also called pyroluria, is a genetic stress disorder associated with severe mood swings, high anxiety, and depression. The biochemical signature of this disorder includes elevated urine kryptopyrroles, a double deficiency of zinc and B-6, and low levels of arachidonic acid. Pyrolurics are devastated by stresses including physical injury emotional trauma, illness, sleep deprivation, etc. Symptoms include sensitivity to light and loud noises, tendency to skip breakfast, dry skin, abnormal fat distribution, rage episodes, little or no dream recall, reading disorders, underachievement, histrionic behaviors, and severe anxiety. They usually respond quickly to supplements of zinc, B-6, Primrose Oil, and augmenting nutrients.”

Anyway, the staff were all really sweet and nice and I do get a phone call about once every 2 months since we have been there to check on his progress. We are supposed to follow up with the clinic in March but I haven’t decided yet if I shall continue. Our homeopath actually tends to help us match the supplement to his behavior in a more immediate fashion and as she is only a car ride away tends to be a little more convenient. I guess, that overall our trip, while informative and diagnostically helpful on some levels hasn’t proven to be the silver bullet that we desired. So in all probability we will not continue to work with this clinic; however if they were closer chances are we would still be in full swing. The changes from the supplements have obviously to be tweaked and as we are not there to document the experiences the supplements have not really helped as much as we hoped. All in all, the whole trip cost approximately $1300, excluding air fare and hotel.

© Loving the Spectrum