DebC

Our 10 year old PANDAS daughter was in remission a year ago this past October when we gave her Flumist. She had a return of some symptoms (anger and obsessive cleaning) which took several months to clear. After much discussion and thought, we have decided to discontinue all vaccines for her.

You made me cry too! Thank you for creating this! It provides all of us with hope!

Two moms in our Dallas area support group have had their children receive IViG through Dr. Rao in Plano. He follows Dr. K's protocol!

Our non PANDAS child has chronic sinus issues. They can check for sinus infections using a traditional sinus x-ray. If that shows nothing and infection of the sinuses is still suspected, a sinus CT scan can be done. These are usually more thorough than a traditional x-ray. Treatment should be an antibiotic for at least 20 days. Per our ENT a traditional 7 to 10 day course will not cure the infection as there is so little blood flow to the area. We've done an antibiotic for 20 days or Azithromycin (5 days on, 3 days off, 5 days on). In fact, our son is half way through a 20 day round of Cefdinir for a current infection.

The Dallas Area PANDAS Support Group will meet the 5th Monday of the month in November, 11//29, due to the 4th Monday of the month falling during Thanksgiving week. We will not meet in December but will resume again in January 2011. Please send me a message if you have any questions.

Our 10 year old daughter is on Azith three times a week (M/W/F), 250 mg.

Our daughter was put on Prozac (an SSRI) by a psychiatrist shortly after diagnosis. It did more harm than good. It made her giddy and impulsive and caused a loss of inhibition. Once I took her off of the Prozac against our psychiatrist's advice, she was much better.

When we were educating our friends on PANDAS, one of my husband's friends said that his elderly mother-in-law experienced PANDAS like symptoms after an infection of some sort (I'm wanting to say it was respiratory as well). They thought they were going to have to institutionalize her as her rages came on so suddenly and were quickly out of control. Once they realized that the infection was still lingering and it was treated, she returned to her normal, sweet self and hasn't had any additional issues. Pretty amazing!

Our daughter is 10 and takes Cataplex B by Standard Process. The recommended dosage from our nutritionist is 2 tablets in the morning and 1 tablet in the afternoon. We always take the morning dose but usually miss the afternoon dose. I figure she is getting a decent amount in that morning dose. Tics were not a large part of her PANDAS symptoms. Anxiety and OCD were her big issues. Last spring we did see a bit of eye twitching and blinking and those disappeared over the summer. The Cataplex B didn't bring them back. However, I can't speak for a child whose major symptom was tics. The best price I have found for that and the other supplements from Standard Process that we use is Amazon.com.

Our family will not be getting flu shots or mist. Our daughter had a mild exacerbation last year after receiving flu mist.

I hate that it stole some of my daughter's self confidence. I hate that I lost someone who I thought was a good friend but had no understanding when I scolded her children for teasing our daughter and saying she was weird during an exacerbation. I hate that I will never rest easy and will always worry if there is another exacerbation around the corner. I hate the denial in much of the medical community. I hate the unwillingness of doctors to agree upon a mode of treatment. Things I have learned and appreciate due to PANDAS: I will never take a healthy child for granted. My faith is stronger than ever before. I have learned who my true friends are. I have learned to be an advocate for my child. I appreciate our daughter's bravery and determination.

Our daughter had a mild exacerbation of symptoms after flumist last year. These symptoms stuck around for over 2 months. No one in our family will receive a flu shot or mist. Our daughter is done with vaccines all together.

Our non PANDAS son was diagnosed with this in September and probably had it for a month or two prior as he had a few bumps that I thought were part of his eczema. They are under his arm and down his side. We have left them alone and they have spread a bit. He had tympanoplasty this last Wednesday for an ear issue and has had a lot of pain with that. Therefore, I do not plan to treat the molluskum unless it gets much worse. I'm hoping it will gradually go away over a year's time.

Our daughter had a fear that her food was poisoned and wouldn't eat. We did use Ensure and that helped a bit. The biggest help was our child psychologist who used cognitive behavioral therapy (CBT). Within one session, she had our daughter eating "poison" and then that fear went away and hasn't returned.

I had serum sickness this past May from Augmentin for a sinus infection. I had an anaphylactic reaction to cephalosporins 5 years previously but the doctor hoped that Augmentin would be okay as I had tolerated it a few years ago. I started taking the antibiotic on a Thursday and always watch myself closely for any sort of allergic reaction. After only 2 doses, my joints ached slightly so I discontinued use and called my doctor. She said to stop taking. By Tuesday, 5 days later, a slight rash appeared. By Wednesday, I was covered in this rash. By Thursday, my joints all over my body were huge and I could hardly bend my knees and fingers. By Friday, I added a fever of slightly over 100 to this. My doctor put me on an 8 day taper or so. Within 12 hours of taking the prednisone, I felt quite a bit better. If I recall, the swelling was gone after a few days. The pin prick rash all over my body lasted for 14 to 21 days but gradually faded during this time. Hopefully this gives you an idea of the timeline of this condition. I had blood drawn at a lab 3 to 4 times during this illness to verify that there was no involvement of major organs. All came out fine and I have no lasting effects. I'm so sorry that your daughter is having to endure this as I'm sure she feels to be about 80 years old as I did. Miserable is the only word that can describe how you feel with this. I can laugh at myself now, but one of my worst moments with it was getting stuck on the toilet and not being able to stand from sitting as my knees just wouldn't do it and there was nothing to pull up on. I think I was there for 45 minutes before I made it up as the kids were in school and my husband was at work. Please let me know if you have any questions and keep us posted as to how your daughter is doing.

We're ready for day 5 here and our PANDAS daughter is LOVING her teacher and her class. We had 2 friends over today to play! I was dreading this year, but so far it's off to a good start. She started taking azitrhomycin 3 times a week M/W/F on Monday evening and is still taking her supplements and eating healthy. Hopefully all of this will produce a fantastic year. I am ever hopeful that we can maintain our current status!

One other thing to look for at Target is the Glutino Brand pizza in the freezer department. They are personal sizes and we tried them a few weeks ago (I do purchase some items gluten free). It was great!

We recently saw a nutritionist to see about building our daughter's immune system. We are not gluten free but are doing the following to build her immunity: No white flour No white sugar No milk No hydrogenated oils No white rice I am doing some shopping at Target but the majority at Whole Foods. Our grocery bill has definitely gone up, but we all feel better eating this way. We are also eating mainly organic foods and our meat sources are now grass fed/free range/no antibiotic. When I was growing up, we used to get our eggs from a relative's farm. The eggs we are now purchasing look just as I remember them to look. One item which we have all loved in the Quinoa pasta. I was surprised that the kids like it better than regular pasta. I have learned to make a great strawberry smoothie with ice, yogurt, strawberries, orange juice, a dash of honey, and stevia. I also figured out a chocolate smoothie (also sugar free) to trick ourselves into thinking that we are having dessert as we used to love our desserts. I think losing the white sugar has been one of the harder parts of the diet. I do allow some items with small amounts of evaporated cane juice. If I didn't do this, there wouldn't be many cereals that we could eat. Z Bars have also been a replacement for dessert -- some evaporated cane juice, but a ton of nutrition in them. As I said, we are doing this just to shore up her immune system so we do allow some straying from the diet. We will allow her to eat a hot lunch at school once a week and we eat out as a family once a week. We allow her to eat whatever her friends have at their homes if she is over for a playdate. I would say we follow the plan 85% of the time. One plus for me is that I have lost a bit of weight myself because there are no sodas or junk going in the majority of the time. She is also taking several supplements a day: Immuplex, Cataplex B, and Omega 3's. I'm participating in that part as well since there are a ton of autoimmune land mines on my side of the family.

Due to Dallas/Fort Worth area schools starting on Monday, 8/23, we have decided to move our August meeting to Monday, August 30. This will allow families to spend the evening after the first day of school together and to share stories of that first day instead of rushing off to a meeting. We look forward to seeing you on 8/30 at 7:00 p.m. If you have any questions, please let us know! Roxann & Debbie

Another mom and I started the Dallas/Fort Worth area support group. If you or anyone else interested in attending belongs to a church, I would start there. Our church allows us to use their building free of charge. I have a key to the building and all that is required is that I put the tables and chairs back as they were, turn out building lights, set the alarm, and lock up. Libraries are also a good place to start. However, you have to work within their hours. Our meetings begin at 7:00 p.m. to accommodate working parents. We get so busy sharing ideas and progress that we have been known to meet until nearly 11 p.m. I usually arrive about 30 minutes before the meeting to set chairs up in a circle. I also bring a few tissue boxes just in case anyone needs them. We start by going around the circle and introducing ourselves and talking about what has gone on since our last meeting. We have had one speaker so far, a chiropractor/nutritionist who was working with one of our PANDAS families and is now working with several of us. We publicized through Beth Maloney's Facebook pages as well as through Latitudes. We've asked to be listed on the PANDAS Resource Network but so far we aren't there yet. I'm guessing that we will be there on their next web page update. If you have any other questions, please let me know!

You too! Happy to help. Just a quick note that Dr. Goebel can diagnose but doesn't offer any type of treatment. He diagnosed our daughter a year and a half ago and won't do any sort of prophylactic antibiotics. We see our ENT for those. I've heard good things about Dr. Rao and there are several families in our Dallas area support group who are seeing a pediatrician by the name of Dr. Ashworth, I believe.

We had an exacerbation of symptoms last year after flu mist so will never get any flu related vaccine in our family again!

Breastfed for 14 months with both children. Neither would take a bottle, so they were exclusively breastfed until weaned!

Brandy, Hugs to you! I will be praying that all goes well tomorrow! Please keep us updated on his progress post IVIG!

Regarding the foods/supplements question, We are just in the process of changing our diet -- no white flour, no white sugar, no white rice, no hydrogenated oils, no milk. We are adding a bunch of supplements -- immuplex, cataplex B, Tuna Omega 3 Oil, Xymogen IgG 2000 DF. We will still splurge and go out to eat once a week and our PANDAS child will be allowed to eat cake at birthday parties or a cookie or two when we visit grandma. However, we are cutting way back on sugar as our nutritionist said that 2 tsp of sugar will lower the immune system for 4 hours. Our goal on this new eating plan is to raise our daughter's immunity and for the whole family to become more healthy in general. I'm taking the immuplex and cataplex B along with our daughter because of autoimmune issues on my side of the family. The first several days of this new diet have been difficult for the kids but we just discovered a smoothie recipe that they actually liked (orange juice, strawberries, plain yogurt, honey, stevia).