Friday, July 23, 2010

#3 PANDAS continued.…….

“Alex’s doctor wants to talk to you today,” Tania, my stalwart assistant informs me.

“Which one?” I ask. This clarification was important as Alex’s mother had now consulted at least four physicians/specialists plus the ever present Dr. Internet.

“Well, let’s have a look see, shall we?” Tania chirps.

I hear the unmistakable click click tap tap of computer keys.

“That would be Dr. W.” she clarifies. “Do you have her number?”

I did but I could not help but have an uneasy feeling. Mrs. P had taken Alex to a well known PANDAS expert for diagnosis confirmation plus the most up to date treatment protocol. Alex had been on antibiotics for a week and from all accounts was making remarkable progress. Her repetitive behavior had reduced significantly and I was hoping for a quick and full resolution. Mrs. P had been aggressive and rapid in her response. She had latched on to the PANDAS idea and had become a lay expert in an incredibly short period of time. Consequently, she had been in almost daily contact with questions and reports. She was a bit of a nervous Nelly but who wouldn’t be after witnessing such dramatic behavior changes in their child?

“Mrs. P is going too far,” Dr. W blurted with little preamble.

I suspected she was referring to the daily e-mails and blow by blow tic reports that were cc’d to the group of professionals Mrs. P had assembled.

“Every small flick or head toss the mother is attributing to PANDAS and is pursuing more and more involved treatment. I saw Alex this week and she is perfectly fine,” the doctor continued.

“Well, it is still pretty early in the treatment,” I countered. “Mrs. P does not understand the long range view and is trying to calm her anxiety by having a back up plan.”

“ No way,” the physician argued. “Something has to be done. I think we are dealing with a case of M√ľnchausen syndrome by proxy.”

Oh boy. M√ľnchausen syndrome by proxy (MSP) is a condition where someone, usually a caretaker or parent, invents or exaggerates medical symptoms leading to excessive medical procedures or unnecessary treatment of their charge. It is a particularly twisted form of child abuse but I am reluctant to jump on the MSP bandwagon. Not because I want to ignore potential child abuse but because the label is thrown around way too often when a parent is a little overbearing or if the mother (in particular) is persistent about a course of treatment her physician does not support. The more mysterious the illness, the more often one hears about suspicions of MSP.

I wish the doctor had just said she couldn’t stand Mrs. P and had blown off steam the old fashioned way by calling her a witch or a pain in the butt but that would have been unprofessional. So, instead, she had to hide behind this devastating charge of serious mental illness.

Mrs. P did not have MSP and Dr. W was not a bad doctor, they were both just wielding the tools they had but the result was about to get ugly. I spent the next few weeks bouncing between the two of them (usually via e-mail) emphasizing common goals and places of agreement. Mrs. P started relaxing as Alex’s tics continued to diminish. She dropped the idea of pursuing further experimental treatments and agreed to a monitoring program instead. Dr. W. with further input from the PANDAS expert, developed a deeper understanding of the condition and was able to help Mrs. P evaluate neurological symptoms that could signal a recurrence of strep.

Alex finished a long round of antibiotics and recovered completely. Ironically, Mrs. P calmed down enough to realize she did not need so many doctors and got rid of Dr. W. first.

Sunday, July 18, 2010

#2 A bear by any other name…..

“ Alex has OCD (Obsessive Compulsive Disorder)! She was fine until a few weeks ago and now she gets stuck on everything. She was fine and so normal. Now she has completely regressed. It is horrifying to watch, “ Mrs. P relayed without pausing to breathe.

I had not heard from Mrs. P for over a year. Alex, who had a history of developmental delays had completely recovered with some miraculous combination of nutrition support, solid therapy and persistent parenting.

“Can you give me some examples of what she is doing now?” I asked.

“She opens and closes doors over and over or she repeats the same thing a half dozen times, “ Mrs. P supplied readily and then lamented, “All of the gains she has made are gone.”

After several more minutes of clarification it appeared that while Alex’s behavior as off, her cognitive development was unaffected. Having honed in on the symptoms, we threaded through the recent history.

Had she been sick around the time of the change?


Had she changed her eating or sleeping patterns?


Had the doctor checker her over?


Her conclusion?

Everything was fine and it was a minor quirk that would pass.

Trips, school changes, life changes?

No, no and no.

Were there indications that the repetitive behavior was diminishing or possibly getting better?

No. Mrs. P thought the symptoms were getting worse.

Has strep been going around the school?

Yes. There was a notice sent home several weeks ago but Alex was fine.

Now we were getting somewhere. Strep can often be asymptomatic that is, without symptoms. A lovely researcher I know from NIMH named Susan Swedo, discovered that strep infections can cause the sudden onset of OCD. She called this condition PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).

I explained the emerging link between strep and sudden development of obsessive and/or repetitive (including tics) behaviors to Mrs. P. and suggested she call her pediatrician and request a strep test. The least invasive way to do this is with a throat culture but if the throat culture is negative a blood test is needed to completely rule out PANDAS as a possibility. The basic blood test measures DNAase and ASO titers for strep.

Mrs. P wanted the problem solved yesterday so she hung up and called her doctor immediately demanding a blood test. The doctor balked and suggested a throat culture. Mrs. P refused to budge and I am sure would make an excellent district attorney if she ever put her mind to it. It was a good thing she was stubborn because the blood test was run and came up strongly positive.

It was PANDAS alright so you would think that would be the end of this story…..
(To be continued……)

Sunday, July 11, 2010

#1 Nausea 911

“Emergency call!” my trusty virtual assistant Tania informed me on during our daily check-in. “I told her you would call her back when you get a break.”

“But that is the only break I have all day,” I whined.

“Yeah, yeah, yeah, just call her,” Tania sympathized unfazed and hung up.

You would be surprised how many urgent calls I get. Some days it feels like I work in a nutrition emergency room. No, people are not calling to find out what to substitute because they ran out of sorghum gum and they need to make those gluten free birthday cupcakes before 2:00!

The sad truth is I get so many MAYDAY calls because of the tremendous gaps in health care delivery. Many doctors don’t have time for the minor-to-them, major- to-the -patient kind of concerns that come up. The overwrought patient is told to make an appointment or go to the emergency room-if they get a call back at all. For those who do not have insurance, a few questions can get expensive quickly.

One specialist, who I really like because he is thoughtful, open minded and thorough, wont’ return a call even if the patient is bleeding from the mouth. (This actually happened once to one of our mutual clients and I spent a week begging his assistant to call the patient. Shockingly, he did not and other arrangements had to be made. Still, the specialist has a long waiting list.)

But I digress. This emergency involved a woman who had been waking up dizzy and nauseous for the last few days. She put a call into her doctor but was terrified her symptoms could mean expensive tests and visits and money was tight. She was scared but wanted to talk to me first, in case the problem was nutritional.

People really do have good instincts. Personally, I would be worried about having cancer or an ulcer or something but since she asked about nutrition…….

She was waking up with the symptoms, so I asked her what she was eating for dinner the last few nights when the symptoms started. Specifically, was she skipping dinner, eating a very light or early dinner?

“Now that I think about it, I have not eaten much for dinner the last several nights”, she remembered.

“Aren’t you a little prone to low blood sugar?” I fished. She was but did not realize the symptoms of low blood sugar could get so bad, they never had before. She quickly admitted to not eating much dinner but my spidey sense suspected she may have been skipping some of those dinners.

The fast between dinner and breakfast can be 12-15 hours which is too long for some people to go without eating. I explained to her that the symptoms of low blood sugar can include both dizziness and nausea. We talked for a minute about eating enough dinner or a protein rich snack before bed if she retires late or eats very early.

She quickly calmed down, agreed to see her doctor if correcting her diet did not immediately fix the symptoms, thanked me and said good-bye.

Emergency averted.
Break over.