mom2ty

FYI Here's what I sent!! YIKES!! The Oprah post will only allow 2000 characters...the below is a lengthier version of what was sent. Dear Oprah, I'm writing to you to request your help in shedding light to a very rare disorder called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neurological Disorder After Stroptococcus. Please take a moment to read my son's story. Tyler, once energetic, fun loving, compassionate, gentle and polite, a thirteen year old (yes teen aged boys can be all of these things) was stricken with Lyme Disease in the fall of 2008. Prior to the onset of the LD, Tyler weighed in at about 78 pounds (Nov of 2007). Ty had been under antibiotic treatment for the LD but began showing deteriorating signs around January, 2009. His LD specialist informed us of a very rare condition known as PANDAS and suggested the possibility that we were now battling this in addition to the LD. Like most people, I only ever thought about cute cuddly bears gifted by China. This disorder is anything but cute and cuddly. Today (almost 2 years later), Tyler, now 66 pounds, confines himself to his bed, where he has spent most of his time these past 7 months. He gets out of bed only to attend doctor appts (weekly), perform lab tests (monthly), see a psychologist (weekly) and to attend in home tutoring classes (3 times weekly). We're seeking to add a neurologist and psychiatrist and possibly a rheumatologist, which will only increase his already burdened schedule. His OCD behaviors are so crippling that each and every meal he eats (despite an extremely limited diet of only about 10 foods) questions whether or not the meal will give him food poisoning. His separation anxiety is so severe that he hasn't slept alone in the past 5 months. The depression, anxiety, paranoia and complete lack of hope that he will ever be healthy and carefree shatters his entire logical thought pattern and consumes his entire being. His anorexic eating wreaks havok on his nutritional balance and to gain a pound between doctor visits -- monumental. My son, Tyler, hides inside this rare condition...I want him back. The complete lack of information for this very real disorder is appalling. Most treatment approaches seek to band-aid the symptoms with anti-anxiety medication, rather than exploring the underlying cause/reasons for the abrupt change to his behavior. There seems to be no real treatment options; those existing are highly speculative and largely scrutinized by the medical community. Once a specialist is found, to land an appointment one has to be acrobatic in flexibility and endurance. One encountered and recommended pyschiatrist will only take on new patients after the new patient calls in from 2 - 2:20 on M, W, or Thursdays for "the interview". Numerous attempts to reach him via this process have failed...it's like trying to align the stars on a specific day at an exact moment in time. (They say my son is the one with the OCD behavior??!!) We've yet to get an appointment. For those appointments that we do make, none of the specialist seem to take any type of insurance...What have I been paying into all these years, certainly not a reciprocating plan. During very tight financial times, there's no scaling back when it comes to Tyler's health. My "discretionary" spending has moved from purses and shoes to antibiotics, phone consultations, doctor appointment, psychologist appointments, etc. Please help! Show your support to these children, afflicted with this very real illness. The Oprah Show regularly forefronts highly controversial topics, defends ignored or abused sub-groups, supports the plight of those with shattered dreams, enlightens the masses to rare stories. A story on PANDAS showcases all of these missions. You and your show makes such a difference in the lives of so many. Please consider helping Tyler, along with the other children affected by this baffling condition, by airing a show on PANDAS. "Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me". (Matt. 25:35-40). Blessings!

Fired my reply off already colleen....thanks all! Knew I wasn't just in a bad mood when I read the article!!

The only treatments I am seeing they want to give is medication for symptoms which leads to multiple meds for all the different issues. Really scary isn't it?!!!!! Has anyone posting here heard of a psychiatrist in the Washington Area - Dr. Adam Hedaya? Would love to get some feedback. Ty's infectious disease doctor is referring us to Dr. Hedaya who is supposed to be knowledgeable of PANDAS and LYME and uses very holistic approaches. Anyone familiar?

Your daughters great week sheds hopefullness to all who read. May she continue to recover. Healing wishes

Sorry all...specialist hails from Boston not DC. Sorry for the error.

http://www.childrenshospital.org/views/april09/q_and_a.html Recent article posted by specialist at Children's Hospital....the more I read the more disheartened I become. Mom2Ty

hellllooo? what am I missing here? Hi EAMom. I don't think you're missing anything...I think they are! I absolutely agree that there is very limited and conflicting information on NIMH site. With John Hopkins, Children's Hospital and NIH in my backyard...I still am not quite sure where I should seek the best care for my son!

I do know about the plastic and all the bad stuff (chemicals) that come out when its heated. For this reason we never put plastic in the microwave and we never drink water out of a plastic bottle that has been heated (like left in the car) Myrose, I have also heard that it is not just heating plastic that can release these harmful chemicals....I think the reaction occurs anytime you have extreme temperature changes. I was known for freezing water bottles for coolers, sporting events, etc. It is argued that these same chemical releases can occur when you go from a freeze point to thaw or from a thawed point to a heated temperature. I'm sorry that I don't know any link between plastic and sensory issues. Mom2ty

http://clinicaltrials.gov/ct2/show/NCT0000...ccus&rank=3 I didn't find this through NIMH website. I found it through www.clinicaltrials.gov. BE SURE when you're entering in the condition that you type out the FULL name of this disorder and not the acronym PANDAS. Hope this helps. I've logged a call to the trial organizer and hoping to hear back soon. She said it could take up to a week or two, we're on to the 2nd week.

Mom2Ty - How are you guys treating the Lyme? Just curious. My little guy also has the Lyme diagnosis on top of PANDAS and Aspergers. I'm sorry to hear about you son. We've been treating the LD since October. First round of abx was Augmentin for 30 days in October. Ty didn't respond as much as the pediatrician would have like so she then referred us to the IDD. The IDD prescribed Minocycline 250 mg a day and upped this to 500 mg after about 2 weeks. He discontinued the Augmentin. We were on the Minocycline through January, even though Ty's OCD kicked into high gear. After we complained about the paranoia, anxiety, depression, separation issues, etc. the IDD discontinued the use of Minocycline, indicating that Minocycline in some people can have a negative affect on the nuerotransmitters in the body. We've been running blood work every month, watching Vitamin D levels, ASO titers, white blood count, red blood count, etc. February the ASO titer level was over 1000 and has remained over 1000 in March and April. The last reading has fallen a bit but not as much as we'd like. When the IDD discontinued the Minocycline he put Ty on Zithromax and explained PANDAS to us. I find it hard b/c both Lyme and PANDAS are clinical diagnoses. We can't know if we're still battling LD or if PANDAS is the culprit. If it's PANDAS, how do you know when the PANDAS is in remission and if so, are we still battling Lyme? So many questions, and so few answers. I believe now we're up to 500 mg of Zithromax. Ty has experienced severe stomach discomfort from the onset of Lyme. We are going to change to liquid with the next abx order. Doctor seems to think that the stomach will tolerate liquid a bit better than the pill. Do you have a sense for knowing what you're treating when with all three conditions overlapping? Also, I'm trying to find if there are any studies that have looked at a connection b/t Lyme and PANDAS>. Do you know of any?

hi sandree, Just wanted to address the portion of your post re: clinical study at NIMH. I was able to find a PANDAS study that has been ongoing and is currently taking patients. It is research based and not treatment based. I don't hold out much hope that we will benefit too greatly from this as their goal is to gather data and not to implement treatment protocols. I contacted NIMH and spoke with a coordinator. She felt that my son Ty (13) was a good candidate and indicated that we should hear something in a week or two. We've been maybe 4-5 days into the process, but haven't heard anything yet. Hopefully, we'll get to participate, to our benefit it will at least put us in front of those that are the experts on this very rare disorder. Also, as your child is a teen, I've been looking into whether there exists a type of support group for teens who have PANDAS. Haven't found anything yet. Maybe we'll have to start our own! Healing thoughts.... Mom2ty

My son ty was taking minocycline for quite some time in treatment of his Lyme Disease. Doctor indicated that discoloration of the tooth is a very real symptom of long term use of Minocycline. Not sure if you're daughter has been treated with Minocycline or not. I think we've come to the conclusion that we'll take the discoloration over the other symptoms of LD and PANDAS. Now we're off the minocycline, hopefully things will get better.

Hi all, Our infectious disease doctor was the one who suggested to us that the family dog can carry strep. I've called the vet, waiting for a response.

One more question: Pandas dd has raised skin color bumps on both of her knees (this is relatively new), any thoughts? Hi DCMom, As a newbie to PANDAS I don't really have a suggestion for you on the strep portion of your question. Re: the bumps, my son does have these and they drive him quite crazy...they itch and he digs at them. The infectious disease specialist is constantly looking for rashes like these each visit. This past week the bumps increased in number and severity of itch; he suggested that we re-test for Bartenella (a co-infection of the Lyme Disease). He indicated that these type of bumps can be indicative of a co-infection borne by tics. He also indicated that many times when on an antibiotic, bacteria can hide or become dormant in the body for quite some time and then flare even though antibiotic treatment is in place. He did suggest putting in place a humidifier (to increase the humidity). This has helped but minimally.

Best of luck, and hang in there. Things will get better for our kids and families. They have to! Hi Dad, Thanks for the post prior to spring break...I was blown away by your son's story (it was so familiar to our own). I really appreciated the information you posted and the encouraging words your post brought to me and my husband. I'm not sure how to add friends to my friends list but when I figure it out would like to add you to my list. New to this blogging, I'm slowly getting it! Thanks again and I will continue to check in on your son's progress and update on Ty. Healing wishes..... Mom2ty