ShannonOtown

He Stephanie, It's been a while since I have posted, but I check the forumns often for any break-throughs with PANDAS. My son is now 13 and doing pretty well. He still has some general anxiety and eye tics, but overall he is a pretty normal kid. Last year I decided to take him to a psychologist just to get him use to talking to someone about his anxieties and perhaps dealing with middle school pressures. He was not having any issues, but I was 'foreseeing' something bad happening, so I just wanted cover my bases. With 4 years of ######, you learn to prepare for the worse! On our 4th visit with the psychologist, the doctor asked my son to leave and wanted to speak with me alone. He explained that my son was doing fine and was perfectly normal and could handle any situation that came his way. BUT that he thought I was dealing with PTSD! He understood I was always waiting for the shoe to drop and my POST PANDAS experience was stressing me and my family out. I was very set back from his comments, but left with a whole new perspective. It was true. My son was 85% better, but I was a mess. Waiting for symptoms, waiting for problems, looking for a new tic, etc. It was consuming my life. It was me who had to deal with the fact that things were OKAY. My son could not move forward until I could deal with the experience I went through with my son. The doctor explained I had been through so much panic and stress and unknown (there was so much unknown), that I was basically reliving the fears every day. It was the best slap in the face I could receive. I had to enjoy everyday without stressing about 'what if'.... and the quicker I realized what I was doing, the better I handled it. I never went to counceling, but it was an option. I think just realizing what PTSD is and how it can affect anyone is important. I'm glad you posted the topic. Many parents on this board will have children that want to heal and move forward from their experience, but the parents need to heal before that can happen. I even find myself trying to break the habit from reading these post because it brings up so much pain, but it's such a part of my life that will never go away I hope you can focus on your healing, since I know it will in turn help your family. It has made a huge different with mine. Take care. Shannon

DeDee, Thanks for the update. I was wondering how your appointment went... hope the labs give you the next clue on which way to proceed. The best part of getting into Dr. Murphy is now you have access to her if you need her for any questions. (A little comfort in the Chaos) Keep us posted. Shannon

Noelle, My son and daughter both went on Biaxin, however my son had horrible tummy problems and was so nauseas off the RX. After 48 hours we had to rush him back to the pediatrics for an evaluation. The doctor said that Biaxin is pretty terrible .... that many adults go to their knees on the stuff. So it's pretty harsh on the children. They took him off immediately b/c of dehydration concerns. I wouldn't mess with it if she's getting sick. It took him about 2 days to recover and get food down afterwards..... I felt horrible that I kept him on for 2 days, but I was desperate for results. Shannon

Thank you for the link! It will go on top of the others in my notebook Thank goodness for great doctors like Dr. Murphy, et al, that continue to study this disorder. I know one day it will be a common for doctors to recognize the symptoms (as easy as the forum parents can spot PANDAS) and diagnose our children.... One day hopefully soon.

My son (12 years) started with eye tic and just this past year start stiff/snort/nose crunch. He was on Zyrtec and Veramyst at the time. I did my own experiment and took him off the meds completely for a month and it didn't change the symptoms. The nose tic went away after the allergy season this past Spring. And just this month (Fall Allergy Season) the nose tic just came back.... I believe the tics get worse with the allergies, not the meds. In fact I bumped up his spray to twice a day with saline gel spray and it has helped with his eye tics and sniffs. Just to note, my son had horrible frequent urination when he started PANDAS. They went away after ABX. We only have the tics remaining. I think the upswing with his immune system and seasonal allergies are the problem. Florida hasn't had rain in a month and I know the pollen count is high now. Ragweed!

Just wanted to get back with everyone on my appointment with the infectious disease doctor. I'm seeing this type of doctor b/c I've had a fever since March and my primary or ENT can't find an infection. My MP IGG are extremely high and increasing... so are my son's IGG scores. But our IGMs are low. So during my appointment I flat out asked if there is a concern if my IGGs are high/increasing, but my IGMs are low. He said yes, especially if other symptoms are presenting themselves (fevers, rashes, coughs, etc). When my son just went to his Infect D doc, that doctor said no concern at all... everyone will show IGG of MP. I also asked him if you already had exposure/infection, then the IGM will not show a high scores and the answer was correct. You will not show a high IGM IF YOU ALREADY HAVE HAD A MP INFECTION. How many of our children have had fever, cough, rashes, upper-respiratory infections. I'm sure all our children at some point during their life has had a MP infection. I know my son had a year where he did nothing but cough, so much we had to buy a nebulizer, but I never tested IGM MP. I guess the point is, don't count on the IGM to show infection. If it's a re-infection, the IGM will not show high results. You have to look for increased titers in the IGG, so you will have to test, then retest a few weeks later.

http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jdms.htm Thanks for sharing... it's good to know what symptoms to look for, since some of these reflect PANDAS. Looks like a very rare disorder though.

"Infection caused by Mycoplasma pneumoniae also includes specific T-cell-mediated immunity. Thus, lymphocytes from persons who have already had the infection earlier, will be subjected to blast transformation in case of Mycoplasma pneumoniae. Leukocytes from those who suffer from Mycoplasma pneumoniae infections will also have chemotaxis symptoms when the organism is present. In this case, a person will have a response in the form of IFN- presence in the blood." This is an interesting article, since I've had 2 doctors tell me my families high IGGs are nothing to worry about. I'm going to see an infectious disease doctor this Friday for my constant fever and test scores. I'll take the article and see if I can get an explanation. I just looked up 'IFN' on the internet... beyond my knowledge of medicine... Shannon

I don't know actually, it was the titer, do you know what that would be? Our neurologist didn't suggest an antiviral but our Dan! did. Susan The easy answer doctors will tell you is IGM with high titers is current infection. IGG with high titers mean past infection. Doctors will argue that at one time or another everyone has contracted Mycoplasma Pneumonia, therefore everyone will have elevated IGGs. It's the same for Eptein Barr and we would all show exposure to it... for our children it's how they reacte to anything thank cranks their immune system, which I guess is pretty much any germ or allergy.

Hey there... My entire family is testing off the charts MP IGG, but low on IGM. I emailed Dr. Murphy and she was not concerned, since this is common to have high IGG, but admits there's not a lot of research yet w/ PANDAS. I still made an appt with Infectious Disease doctor for my son at Nemours Children Hospital. The ID doctor was not concerned at all.... said we could treat him with antibiotics all day/ all year and we still might not be able to bring down the IGGs. The only thing I need to worry about is the IGMs. Ofcourse I don't believe her... but what else can you do... see another doctor... I'm going to an infectious disease md next week for a fever I've had since March that my primary can't figure out. I'll ask the doctor his opinion on IGG and report back. My results on the MP IGGs are crazy high. Shannon

Just returned home from infectious disease doctor at Nemour's Childrens Hospital. Had bloodwork with me on all 4 family members with MP IGG titers High. Ran 2 test (1 initial test, all took antibiotics, 2nd test, and all showed increased IGGs). Doctor dismissed bloodwork (I was prepared for comments). Flat out said IGGs are no sign of infection, even with an increased titers. Her comments, "all the antibiotics in the world will not lower IGGs". Said my family is healthy and no concerns with MP. IGMs are only sign of current infection. Back to wondering what to do....

Haven't found a doctor yet.... My son was treated by Dr. Murphy at the Rothman Center in St. Pete's All Children's Hospital. Worth the drive. Feel free to PM with any questions. Central Florida lacks good doctors... urgh... We're seeing a new doctor, infectious disease, this morning at Nemours Children Hospital. Our aim is Mycoplasma Infection. I have my folder of research, bloodwork and history.... a sleepless night thinking about the appointment.

I need some help on where to go next... My entire family tested high on the Mycoplasma Pneumoniae IGG, but low on IGM. Our pediatrician and my primary care internal medicine MD, put the entire family on the standard full 10 day antibiotics treatment. They both prescribe b/c of my concern and push for help. I waited 2 weeks after and retested everyone and the results came back with higher scores for everyone on the IGGs. The pediatrician doesn't want to mess with it, and says call the infectious disease doctor. My primary said to call an infectious disease doctor, too. My concern is none of us are showing any symptoms, expect my PANDAS son with his classic symptoms (eye tic, anxiety, moods, etc) but he's not sick with a fever and cough, etc. Has any one treated their entire family for MP? Will an infectious disease doctor be open to treat everyone for the sake of one family member showing Pandas symptoms? Is an increase in IGGs grounds to make an appointment, even without classic pneumonia symptoms?

[May I ask what they have your dog on? We are taking "Frodo" in soon and I'll ask to keep him on something, hopefully something that addresses both Strep and Myco. When will this ever end??? We have my pooch on clindamycin. (2 weeks on, then 2 weeks off, then repeat) I think it only covers strep. Our next round of blood test is this week, to see if the lastest round of antiboitics lowered our Family's MP IGG score. If they come back high, without lowering, then I will ask for the dog to go on something new that covers MP too. My primary care MD was the first to suggest testing the dog for strep. She things the pets get overlooked as carriers in the family.

Not to add fuel to the flame, but I have recently read a few studies that dogs and cats can also transmit Mycoplasma Pneumonia... I'm only interested b/c the entire family is testing high MP IGG titers lately and no strep (although that was the intiatial problem with my son growing up). My dog is already on longterm abx... what's next

My husband and myself just finished a 10 day round doxycycline. The entire family tested high with MP IGG titers and our primary was being cautious since our son has PANDAS. She said she liked this antibiotic because it kills the 'odd' bacterias that other common antibiotics miss.... haven't done any research on it, but I'm retesting myself next week to see if my titers decreased.

This was my thought too... Dr. Murphy wants this information for research. Getting information and data on children young would help with understanding how PANDAS plays a role as they get older. And obviously, it will help provide medical assistance for your son.

Glad the visit went well... my son had great improvements when he did the cefdinir study with her. His symptoms just returned, which I have to blame on mycoplasma. Our entire family has tested high and currently on antibiotics. The bloodwork seems to add to the mystery.... the more information, the more pieces to the puzzle. I wonder if she's testing for MP? She didn't a year ago with my son, but did with my daughter back in March. Perhaps this is something on the radar with Panda doctors now? I think this should be a test everyone should run with the ASO and DNase.

Reply back on your experience and recommendations from Dr. Murphy. Just working with professionals that understand the symptoms, etc., is such a relief.... good luck! Your son is young... catching it early is a good thing. I wish I found this forumn 4 years ago when the sky starting falling... I have learned so much from everyone.

My Pandas son (12) and non-pandas daughter (6) has both been evaluated by Dr. Murphy. Expect a 2-3 hour visit that starts with lots of paperwork. You child will have the same paperwork/questions if old enough to read and relate... Then you will sit down with Dr. Murphy and/or assistant to go history, concerns, questions, etc. Dr. Murphy will then do a full nuero work-up on your child... reflexes and general check-up stuff. She might order some bloodwork, unless you bring current results with you. The staff is great and very friendly... Are you doing the cefindir study? My son was part of the study, so perhaps the paperwork was for study patients only. Shannon

Hey, I was just there again this morning testing my son for a throat culture for strep A and B. Their website just advertises the popular labtest. They have the Quest and Prolab complete Lab manuel/directory and will look up any test you want done. They will also call a lab technician or csr for additional lab codes if needed.... just walk in or call if you have questions or for the price. The one in Orlando has been very helpful. Just an fyi....my Pandas son, daughter and myself all test high on the Myco Plasma IGG. We all started Abx today as a precaution. Make sure to ask for both the IGM and IGG. Let me know if you have any questions. Shannon

Thought I would share this info.... I went to CVS walk in for a sinus infection today. I ask the nurse if they would test me for Myco Plasma. My non pandas daughter's result came back high, so we are testing both her again and my Pandas son. I want to test myself just to see if I was exposed and I'm not feeling well lately. The nurse said she couldn't test without reason, BUT the walk-in lab across the street does blood lab work. I immediately ran across the street and sure enough, it's a walk in lab that will test anything you request. They use Labcorp and Quest. I gave them the test for Myco Pneum IGG and they pulled the blood. I should have results in 24 hours. It cost me $79.00. I think this is awesome for the situations when you don't want to fight with a doctor for blood work. They also will pull blood with any kit you bring in (ie Cunningham Test) Hopefully this information will help some parents! It's called Any Lab Test Now! http://www.anylabtestnow.com/ *Hope this isn't against forum policy to referral a business, but I think this is a good thing.

Hi Buster, I was just reading your fact list to find updated information on Mycoplasma Pneumonia and antibiotics that work and don't work. Dr. Murphy did blood work on my non-pandas daughter (she was showing some symptoms during recent illness) and her Myco Pneumo titers are high.... surprise! I have an appt for my Pandas son to test his titers. I have never considered this to be a possible cause to his contiued tics that have been so hard to eliminate. Do you have any updated research on the connection to MP and Pandas/Pitands? Thanks, Shannon

Hi Debbie, My son went in for his 12 year check-up this past Feb... they wanted to do the DTP booster for his 7th grade requirement. I told them no for now. He's post antibiotics and doing well, so I wanted to give him time to heal. He's also doing allergy shots and I didn't want to throw too much on him at once. I'm going to push it as long as possible and take him in right before school starts. He had a Prevnar vaccine and had no problems. It's a hard choice...

Hi Suzan, I always seem to reply to your post because my son's triggers are allergies... we're doing Zyrtec 10mg pill in morning, Veramyste nose spray at night and on our 12th week of allergy shots. Just remember some of these medications should be used continuous to work the best. They need to build up in the system to work effectively... my allergy doctor says give it 1-2 weeks to see real results. So you shouldn't take 1 dose here and there, when you have symptoms..... Take it like antiboitics on a continuous basis. The saline nose sprays (gels) are the best to use all the time to keep down on the nose bleeds and wash away pollen. Just stay away from Singulair... just to remind the new parents.