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Daughter born at Irwin Army Medical Center in Kansas, developed normally and was a very funny happy child. Language developed early, everything on time. She is the youngest of 3 children. Other children now age 20 and 23.

Past history: My daughter at age 10 months got infected with HSV 1, a very bad case all over her face. Over the years it continued to come back.

At age 3 she had post infectious glomerulonephritis with negative strept titers. Two days prior she was seen by her pediatrician for N/V/D. It was about 6 weeks of frank hematuria with negative bacteria and no protein spilt into her urine so she was just monitored. Kidney ultrasound showed nothing unusual.

HSV episodes started to show up in her eye and so she was put on prophylactic Acyclovir (Acyclovir was later stopped for several months in case that was somehow causing the problems but no changes in behavior and more oral herpes sores so she was put back on it).

We moved to Germany.

At age 4 she began to have hand tremors which was evaluated by pediatric neurologists (two- one American and one German) and MRI- no known cause was found. Tremors continued to come off and on since then. At times they have gotten very bad to include her arms, head and upper body.

End of June 2007 my son (her brother) had Scarlet Fever and strep throat which was treated with antibiotics. At the same period of time there is (documented) proof that I took her to the pediatrician for sore throat and fever which cultured negative for strep so no antibiotics given.

At almost age 6- on August 12, 2007 (we had since moved to Italy) she began to tell on herself for ridiculous things that did not make any sense. She would do this over and over and over again that whole night until she finally could fall asleep. When she woke up she kept doing it. This went on for several weeks. I spoke to several doctors (I was a nurse working at the only American health clinic there) about it and it seemed that everyone brushed it off as nothing. The telling on herself then changed to her saying "I said a bad word" over and over and over. She never did say a bad word, unless I would ask her what word she had said (which she usually didn't know). In the mornings I would wake her up from a sound sleep and she would sit straight up and say "I said a bad word" and it could literally turn into an argument because there was NO convincing her that she didn't. She would say this many many times per hour.

August 20 she had a severe uncharacteristic meltdown at the daycare which I picked her up and took her directly to behavioral health clinic attached to the health clinic that I worked in. This was the first time in her life she was ever evaluated or seen by a social worker, psychiatrist, or psychologist. The meltdown was so bizarre. From then on we have lived with these.

August 23 we flew to the mid west United States for a scheduled visit with family and the symptoms continued during our trip. I remember at that time she became obsessed that she had "peed in the pool" when she clearly had NOT (she was getting out of the pool many many times in a row to go to the bathroom proclaiming she'd just peed in the pool). But still at this point they weren't as bad as they eventually got.

Soon after we arrived back in Italy (Sept 2007) she began to verbalize "Mommy, my head says that I'm going to kill you". She said this hundreds of times per day and this terrified her. It was completely disabling to our life and relationship and it involved everything. One morning I counted that she said it 50 times while I was putting on my make up. She was not able to do anything for herself anymore at that point. I started dressing her again and she began wetting the bed every night again. There were days I had to brush her teeth for her. She became terrified of things at night time. This child usually slept very well from 7pm until about 6am, but no longer did. She'd already been seen by her pediatrician who did a CBC and UA and she had already been seen by the child psychologist on a regular basis. WISC testing done came back normal even though she was clearly psychotic during the time period of testing. Her tremors worsened to include her arms head and upper body. The way she walked seemed to change too. She no longer played with her toys, but rather started lining them up and tied ropes, straps and strings together in a long line. She could no longer do puzzles and games that she easily did at age 3 and 4. I went part time at my job working half days and spending good portions of time at her school. She started on Zoloft 25mg per day and this seemed to help a bit after about 2-3 weeks.

October and November 2007 some of the OCD stuff changed to her thinking that she smiled every time she heard me cough. I had an upper respiratory infection and so I had a frequent cough at the time. She always had to verbalize that "I smiled when you coughed", even though she never did. She had ok behaviors at school with only a mild meltdown or two during this time frame and never did she have one with me alone at home. Thanksgiving weekend 2007 we thought it would be good to get away for a while and so we planned a trip to Barcelona for the weekend since we were going to be spending the holiday alone. While at the Marco Polo Airport in Venice waiting to board our flight she began having a terrible meltdown which lasted 4 hours (we drove back home to Vicenza afterward, not making the flight). December 2007 she continued to have strange behaviors but things seemed milder.

January 2008 she had a major meltdown at the daycare in which the police and social workers were called on scene. It took several hours to get her safe enough for me to drive in the car to get her home. Then at school she had bizarre behaviors of PICA episodes and just odd behaviors. I would get multiple calls from the school nurse saying that she had an "accident of a personal nature" and could I bring in some clean clothes. When I would get to the school with clean underware and pants and would go in the bathroom with her, I would find out that her pants were completely dry. There was no convincing her that she had not peed in her pants. I started leaving 3-4 extra sets of clothes at school so she could just change when she thought she had wet herself. She was taken off Zoloft and placed on Risperadone 0.25mg. The OCD thoughts were back very strong. She also had a hand licking/touching motion she did.

October 2008 SPECT SCAN showed increased basal ganglia, measured volumetric blood vessels. Had to pay out of pocket because not caused by insurance.

February 2008 she developed breast buds (4 days after the risperadone was started) and also noted to have axillary freckling so the doctors put in consults for pediatric neurology and pediatric endocrinology. Seen by ophalmology, optic glioma was ruled out. Early March, we drove to Germany for the consults and she had an EEG and MRI with no conclusions. Full lab panels of anything they could think of were done and nothing found. The EEG had to be done sedated (as well as the MRI) due to a terrible meltdown which was video taped (at Landshtul Regional Army Hospital in Germany). She had an abnormal EKG which prompted an echocardiogram that showed nothing abnormal. We drove back home to Vicenza Italy and just kept dealing with the symptoms.

Late March a lady in the community had went to the states to an Autism conference where she spoke to some experts regarding my daughter's condition. They told her to check into PANDAS. As soon as I had heard of it I knew that was what it was. I convinced the pediatricians to test strept titers and wrote to Dr. Kovacevic. Her titers came back above the normal limits for the laboratory that we used. The pediatrician put her on prophylactic Pen VK 250mg daily. Her symptoms were better though and continued to get better to almost no symptoms throughout April and May (I had weaned her risperadone down without doctor approval to very minimal levels--to about every other day 12.5mg).

June 6th her OCD came back and I took her directly to the pediatrician for a strept culture. It was negative. 3 children in her classroom had documented strept throat that week. All symptoms began coming back with the meltdowns, OCD stuff, bigger tremors, odd behaviors, very emotional. She developed a skin picking problem. Medications were increased- now on Zoloft and Risperadone. Meltdowns got very violent. The violent rages could be very dangerous. She would hit, punch, kick, spit, curse, pinch, try to bite and almost always urinated on herself during the rages. This continued through out the summer of 2008 and we relocated to the United States in the beginning of August 2008. Psychiatrist here in the states increased medications in order to get some relief. We had to get settled, find doctors, buy new cars, buy a home, get enrolled in school and start getting some furniture while we waited on our household goods to arrive. She had multiple appointments. Was tested positive for Mycoplasma and also had a very high Streptozyme IgM. We had a telephone consult with Dr. K. in October and saw a pediatric rheumatologist in Kansas City (Dr. Hoetzel) who agreed that her story sounded very suspicious for PANDAS and that Dr. K's idea of a steroid burst trial and subsequent IVIg might help her. We began weaning off the psych meds (which were not of much help at all) and the steroid burst trial was strongly positive with a few days of blessed relief.

Dr. K. sent his IVIg protocol and November 17th and 18th she had IVIg using Dr. K's protocol (1.5G/1kg) ordered by her current pediatrician here at Ft. Riley, Kansas.

As I write this it is 2 weeks post IVIg. All of her skin picking wounds are healed and all of my bruises are healed. She is happy again and not as emotional. Subclinical if any OCD stuff and our family is finally able to relax a little bit. We were even able to have one of my older children babysit so we could do some Christmas shopping and go out to dinner. She is playing again using her imagination. She changes focus easily. She is not going to school yet because we are just making sure she is well before sending her back (while weaning her off the psych meds she had so many meltdowns at school and was suspended twice - it was just unsafe for everyone involved). She is getting homebound school with a special ed teacher coming over to our home one hour per day for 3 days per week and otherwise I am just working on it all with her. We are reevaluating the need for homebound school again on January 8, 2009 and it is my hope that she can go back then.

AS OF 12/10/08 – Back to normal, no OCD, no rages – some minor night anxiety, mild emotional sensitivity – THIS IS WEEK 3.

As of May 4, 2009 – remains at 100% back to normal!

Here is a list of her OCD stuff--all very severe:

• telling on herself for nonsensical things
• telling on herself for "saying a bad word"
• saying that she thought she was going to kill me
• saying that she smiled whenever she heard someone cough
• saying that she smiled when she heard my stomach grumble
• saying that she smiled when we passed a cemetery
• hand lick/touch her hair motion
• skin picking

Other changes noted:

• started wetting the bed
• strange urinary issues- thinking she was wet when she wasn't, etc
• could no longer do puzzles or usual complex thinking that she had previously been able to do
• severe violent meltdowns
• very emotional ups and downs
• terrified of E.T. during times of illness
• afraid of heights and climbing on things
• night time fears
• was with me constantly when I was there- every room I was in
• slightly more hyper at times--came on during ill periods --kind of "over the top" with things
• worsened tremors that at worst included head, arms and upper body (already had fine hand tremors)

Current medications:

• Acyclovir 600mg twice daily
• Augmentin 250mg daily
• Omega 3- 1200mg twice daily
• Probiotic complex from Klair labs 1/4 teaspoon daily (includes 5+billion CFUs of lactobacillus acidophilus and 5+billion CFUs of bifidobacterium bifidum)
• Mastica dietary supplement from AllergyResearchGroup-- 1 tablet daily (500mg pistacia lentiscus)
• Immune support MacroForce Plus IP6 supplement from Immudyne-- 1 capsule daily (Vit C, Calcuim, IP-6 and Beta-1,3/1,6-D glucan)

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