Our 5-year-old daughter was diagnosed with PANDAS by two different doctors during the first week of March, 2015. Her sudden onset of OCD symptoms began on January 8 of 2015. We're struggling to learn as much as we can so we can get the best treatment available for her as quickly as we can. We've started this blog to share information with our family and friends, and to hopefully learn more and reach out to other families who are going through the same thing.
Brief Timeline:
May 13, 2015 - Appointment with PANDAS doc. He is also disappointed there wasn't a bigger reaction to the steroids. He does allergy testing to penicillin and antibiotics, and she cannot take Augmentin or related drugs. He wants us to give Motrin twice a day. In one week (when she'll be off steroids for at least two weeks), we will get labs drawn, then start on antibiotics and a higher dose of steroids for seven days to see what happens. We're DREADING the meds, because it's SO DIFFICULT to get her to take them. UGH! Doc is very concerned about her lack of weight gain. She is in the 3rd percentile for weight, and she hasn't gained. He really wants us to push food, especially fatty foods. This is so hard when she only eats four different things.
May 5, 2015 - Suddenly starts eating hot dogs and pretzels, in addition to her pancakes and Pringles. It sounds weird, but this is incredibly exciting for us! Still asks questions before eating or drinking anything. (See "End of April" entry below)
May 1 - May 5, 2015 - Five day course of steroids (prednisolone, 4 ml, once a day). No significant improvement during or after steroids, which is disappointing because we've been told that drastic improvement means better potential outcome if we ever decide to try IVIG.
End of April - Tics suddenly get worse and there are more of them. They include: "Hmmmm" noise, especially when eating, blinking eyes, scrunching up face, clearing throat, coughing, sometimes crouching down, occasionally screaming/laughing loudly (but not intentionally). Still must ask series of questions before eating or drinking anything. ("If I eat this, will I throw up?" "If I eat this, will I get sick?" "Am I sick?" Etc.)
March and April 2015 - She eats literally only two foods, McDonald's pancakes and Pringles potato chips. (She switched from homemade milkshakes as one of her two to the Pringles.) We are happy that at least she is eating, something which stopped almost completely in February.
March 13, 2015 - Developed hives and rash over almost entire body, including swollen eyelids. We discontinued the antibiotics.
March 6, 2015 - Second Specialist Appointment - He agreed on almost all counts with the doc we saw on March 3. Both feel strongly she fits the criteria for PANDAS. This second doc said she could be the "poster child" for PANDAS.
March 3, 2015 - First Specialist Appointment - Began antibiotics twice a day for two weeks. At that time, we will see how she's doing and either do 5 days of steroids or continue the antibiotics
January 8, 2015 - Onset of Sudden OCD revolving around fear of vomiting and eating. Carries bucket everywhere (even when sleeping), and examines all food for spots and contaminants. Begins asking series of questions regarding eating. These questions are the same every time and she asks them before eating ANYTHING. "If I eat this, will I get sick?" "If I eat this, will I throw up?" "Is this safe to eat?"
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