advocatemom

I have no medical evidence of vaccinations "causing" PANDAS, but our own personal experience was after our DD11 had her 6th grade vaccinations last June, it was almost instantaneously that her behavior changed dramatically. We were not aware of PANDAS at the time and went through months of spiralling downward until she became completely non-functional in November. I hold a very strong belief that one/all of the vaccinations triggered this episode. As we look back, this was not her first exacerbation, but we did not know what we were looking at then. However, this was the BIG one that put us on the path to PANDAS Dx. She took a Varicella booster as part of that panel of vaccinations. I also had my kids immunized for influenza on an annual basis since DD had pnuemonia twice as an infant. I'm sure those immunizations played a part in this experience. After good discussion with Dr. K, we will not vaccinate our daughter again. He gave very compelling reasons why she should not have the HPV nor the menningitis vaccines.

OH YES!! DD11 is a big screamer. It was horrifying when it started. She too, would want to die. I was very fearful for a long time that the neighbors would call the authorities thinking we were harming here. Back in November, she reacted badly to Lexapro (before we even KNEW about PANDAS) and she screamed for days on end all day long. Now she screams primarily when she has to shower, or late at night when she's tired. She's come to a point where she will warn us before the scream comes so we can cover our ears or leave the room. At times, she will get into a screaming "jag" and her eyes will dialate and we know she is somewhere else. Its awful. I have no good strategies for dealing with it except to tell you to try to ignore it -- the more we feed into it, the worse it gets. After her steroid burst, the screaming went away for a couple weeks. Its back now. She's having her first IVIg this week.

WOOT! WOOT! I'd love to know how she did it because I am just now stepping up to the plate to do battle with Blue Cross Blue Sheild Illinois.

DD11 uses PANDAS (maybe not intentionally) to completely control everyone and everything in our home. I'm sure because so much of her life inside her brain is out of control, she's doing all she can to control what's going on outside. However, it makes life pretty miserable for the rest of us. Our non-PANDAS son 9 can do nothing without his PANDAS sister's approval. She has done everything from putting a plate of spaghetti on his head in a restaurant to biting him, to yelling at him, and basically treating him like dirt. All we can do is make excuses for her and he's getting worn down. What can we do to make some of this up to our son? He's so hungry for our attention. We negotiate everything with her -- from going to school, to showering, to wearing underwear, to going to church. I'm pretty certain that by the time she's 16, we will have lost any and all control. She is all about Power and she'll do anything to prevail. I'm tired of having to ask "PANDAS" before being able to do anything in my home. Any advice?? She's getting IVIg next week......we can't wait!!

What a big love he is!!! Give him a hug from all the PANDAS parents! So PROUD of him to verbalize so articulately! DD11 had all the similar OCD symptoms -- touching things with both hands equally, making sure to walk through a door with the same foot first all the time.... When this became apparent and she finally was able to verbalize these things, she said she had been hiding them for 4 YEARS!! Now we are a close knit family and SERIOUSLY???? We did not see all of this stuff? Once, about 2 years ago we noticed her having to sit exactly in the middle of the dinner table but that was our first inkling. These kids are so clever and expend SO much energy to hide/manage their obsessions and compulsions. When our daughter's OCD started becoming too much for her, that's when life spun completely out of control and we crashed hard. It took the assistance of her psychologist to help her identify and verbalize. She was so afraid that we'd all think she was a freak. (snif, snif, dabbing the eye) DD is having IVIg next week. We are very hopeful and prayerful for recovery! We'll keep you posted.

Our DD11 will be having her first (and hopefully only) IVIg treatment in 10 days. I read so much on here about remissions that I'm wondering if anyone has had true and lasting success with IVIg therapy? To what degree did your child improve? How quickly after IVIg did you see positive effects? I'm looking for some hope and the knowledge that we are on the right path!

Texas Dad, Your story is nearly verbatim to the story of our 11 year old daughter. Symptoms started coming on hard and fast last August. However, looking back, I see a PANDAS pattern of wax & wane symptoms. Thankfully, we have another PANDAS family in our community who put us on track to proper treatment. Our daughter had been on a smorgasboard of SSRI's and she reacted terribly to them. She's having her first IVIg in 10 days! We can't wait to get it overwith! Thank you for sharing!!

S & S, Welcome home! Yes, my DD has exactly the same clothing issues. She has 3 short sleeve t-shirts form Aeropostale that she rotates but has to have the white t-shirt underneath because she refuses to wear a bra (she's beginning to need it) and I insist that she have more coverage. I even purchased a really expensive seamless sports bra but she won't wear it. She insists on only short sleeves even though it is -10 degrees out right now! She won't zip up her coat and she won't wear socks with her snow boots. The other day a boot fell off and she landed barefoot in the snow. She will only wear pajamas if they were purchased at Target -- WalMart & Kohl's are forbidden. No reason -- they just are. Yes, the t-shirt she likes is a Cherokee brand from Target. I'll have to try on-line and see if I can get about 5 of them.

SERIOUSLY!?!?! PANDAS DD!! has an OCD "thing" about clothing. She has one (1) white short sleeve t shirt that she must wear under everything else. She cannot put laundry in a hamper or touch anything that has touched her body previously until it is washed again. Well -- I failed to remove the white shirt from inside the dark shirt when it went into the wash. You guessed it -- white shirt is now grey! UGHH! Does anyone know how difficult it is to find the requisite short sleeve white t shirt in Wisconsin in the middle of January? Soaking it in bleach and hoping for the best.

I agree with so much of what has been said in this discussion. My dd11 is currently attending school on an "as able" basis. She has missed a total of 42 days so far since the end of October. We had homebound instruction at the end of November and we are re-assessing this week. We are blessed with a fantastic public school with a phenomenal staff of teachers/psychologist/guidance counselor/social worker/nurse who have gone over and above expectations to support our daughter. They are interested in learning about PANDAS and they accommodate her every need. However, our daughter is just finishing up steroid burst and is on augmentin and she has just completed 3 FULL days of school this week. We are also blessed in that she is so academically capable that she's able to catch up quickly. After missing 42 days, she's still pulling all A's. She loves school and has always excelled in her studies. It is SO very frustrating to get up in the morning and watch her have such a bad panic attack (terrorized) from the thought of going to school. It's been a day-by-day thing for us for 3 months. Thankfully, I'm an at-home mom so I have been able to be here and help her keep up with studies. However, sitting home for 3 months is the reason I've gained 15 lbs!! My feeling is don't push too hard -- its not worth the added anxiety for the child until they are in a higher stage of recovery and can handle it. Its not worth your frustration/anger and its not worth the child having to feel like a "failure" so early in the morning. I'm not suggesting that any of you make your children feel like failures -- its just been my own personal experience. If you are able and the school is supportive and work with you -- just hang at home and keep your child as low-key as possible. Maintaining family sanity is priority #1!!!! (coming from someone who doesn't always do such a great job of it --wink)

I'm wondering if any of you have had your PANDAS kids take massage therapy? I'm considering Reikki for my dd11. I know she would not let anyone touch her body and I'd like to try this "no-touch" version of massage as she's recovering from PANDAS. A friend's mom is master level 4 in Reikki and she would come to our house to do it. I'm just wondering if anyone has had positive experience with massage and PANDAS kids?

Hi All! I'm a newbie here. DD11 was diagnosed PANDAS at the end of December and she is under the care of Dr. K. She is nearly at the end of her 21 day "testing" of the steroid burst and she is on Augmentin. Thankfully, the positive results are really kicking in. She has had 2 full days of school this week after beeing out of school since the end of October. To browneyesmom and all the rest.....we have had some HORRIBLE evenings (and mornings) here too. I have broken down a couple times this month and then poor DD thinks I don't love her, this is all her fault, etc..... This is the most horrible thing I have ever experienced and some days I feel like my soul had died. LLM -- I loved what you said -- its so completely true. Its shocking for our kids when the realize that we are human too and that we can't just fix everything -- even on the 3rd or 4th try. But the child's frustration has to come out too and its going to fly out at the person with whom they feel most safe -- mommy. Thankfully, we've had very meaningful and tender make-up moments after these awful meltdowns. Make sure you do too and everything will be fine. I'm so eager for her to get better so our family can start to heal. We are all so raw.