nicamom

My DD12 had unexplained seizures at age 2, and a normal EEG. When the current symptoms started last fall, we felt it had a seizure like component because she feels "sick" before the "rage episodes" and then is really tired after and doesn't remember anything. The P-DOCs at Sheppard Pratt told us it was normal for psych patients to say they don't remember bad behaviors, but we didn't think she was lying. We pressed for an EEG and they ignored us. Finally got someone to order the EEG in January and it was abnormal, with spikes in the left-temporal lobe region! Neurologist said it fit the description of "temporal lobe epilepsy" (my sister has epilepsy, although hers are grand-mal seizures).

Wow Looking4ward - that is wonderful! When you say "high dose" what exactly dose are you talking about? The ped put my daughter on 250mg 2x day for 6 months. How does that compare with what you were prescribed? Also, have you see the ADHD symptoms resolving too?

Can I just tell you how lucky I feel to have the pediatrician we have?! She met with us tonight, reviewed all the stuff I printed out for her (from Dr. T) and agreed to a plan: 1) Test all members of the family to see if any of us are carriers. 2) If anyone is a carrier, treat that carrier and then treat DD12 with a full-strength course of antibiotics, followed by a 2-month prophylactic trial. 3) If no one is a carrier, treat DD12 with a 2-month prophylactic trial. If the trial helps the residual symptoms she's been experiencing, we can continue it in Nicaragua. If not, then we can reevaluate, but at least we will have tried something under a doctor's supervision before going to Nica. SO happy to have a plan!

Wow - here and I have felt SO ALONE, but you all seem to know exactly what I've been going through! I wish I had found you sooner, when I spent so many days in a row sobbing and begging God for a miracle. In January of 2011 (well before any of this started) we started praying about spending a year in Nicaragua, working with my father-in-law's mission project there. Once November rolled around, it looked like there'd be no chance of that dream becoming a reality. But then, when the Lamictal kicked in in February, it felt like we got our miracle and we continued our plans. We leave for Nicaragua on July 24. The girls will go to school there and they are both super excited about it. Interestingly enough, I can get antibiotics there without a prescription, so I could perhaps dose her myself if I can figure out the best course of action. We are meeting with the pediatrician today. I really hoped we'd get in to see Dr. L before we leave, but I guess that will take another miracle, we'll see if they get a cancellation between now and then. 1tiredmama - I'd love to chat when you get a chance! Thanks again - it is so great to feel like others understand what we're going through...

Thanks! The tricky part is that we are going overseas for a year starting in July... I did call Dr. Latimer's office and they said they were booking for end of August. I did put us on the cancellation list. In the meantime, I faxed all this information to our existing p-doc, as she is very interested in PANDAS (even though she hasn't personally treating a child with it before) and willing to at least consider it. No, she has not been on antibiotics since December, and the blood draw was in January. I looked at some of the other symptoms and lo and behold... this all started with us going to the ped twice in August/early September because she was repeatedly wetting herself during the day. They took cultures but couldn't find any reason for it... Also, I wrote in my journal back in November that I noticed her handwriting had become atrocious. Weird! Are those really symptoms? We've been told to avoid stuff like advil because it causes upset stomachs in kids who are on anti-seizure meds. They told us to stick with Tylenol, but that doesn't have the same anti-inflammatory properties obviously. I may try it anyway and see how she does. I'm hoping for some antibiotics from the p-doc. If not, I will take her to the ped and try that route. So frustrating!

In September of 2011, we started the nightmare it seems most of you have also experienced. My 12yo daughter started having severe rages. Prior to each rage, she would tell us she didn't feel well, then she would rage (violent outburst) for 1-2 hours before finally falling asleep and not remembering most of what happened. She also exhibited increased anxiety when she wasn't raging. She had two of these episodes in September and we went to the ped. She basically told us to take her to the hospital if it happened again. What happened to our child? This was NOT her! October 2011: Another rage lasted several hours. We took her to the ER (had to hold her down in the car because she was trying to jump out). They gave her benedryl and sent us home and a psych consult for the next day. (!!!) She ended up running away. We found her and she was admitted to the local psych hospital for 5 days, then 5 days outpatient. They said mood disorder, perhaps bipolar and started zoloft. November/December 2011: Added Abilify in November. No change. Another rage occurred over Thanksgiving. Just after Thanksgiving, she got bronchitis and started antiobiotics. After two weeks, she was still sick so they did another round of antibiotics (she ended up being on antibiotics the whole month of December). Interestingly enough, Thanksgiving was the last time she officially raged. However, the underlying anger and anxiety persisted. Christmas 2011: Started Lamictal. January 2012: Continued to titrate up on Lamictal. No more rages, but persistent anxiety and anger. Asked (again) for an EEG because my sister has epilepsy. Finally got EEG and... it was abnormal in temporal lobe region. Saw ped neurologist (Dr. Shafrir in Baltimore) who said it could be temporal lobe epilepsy, but wasn't sure. Neurologist requested blood work: Anti-DNase B Strep Antibodies = 386, negative for Lyme Dr. Shafrir suggested a PANDAS diagnosis but said the case is too complex for him and suggested another psych doctor!! Very frustrating!!! Therapist adds ADD to list of potential diagnosis. Started weaning off zoloft February 2012: Finally hit "therapeutic level" of Lamictal (150mg) and anger literally disappeared. Huge answer to prayer! Residual symptoms include obsessing about nominal stuff, anxiety, memory issues, brain fog Finished zoloft March 2012: Psych talked us into restarting the zoloft (higher dose) to try and abate residual symptoms April 2012: No change in residual symptoms with higher dose of zoloft Got strep over Easter 10 days of antibiotics finished 4/17 4/25 - therapist tells us again that ADD symptoms are high and need to be treated 4/26 - showing signs of Strep AGAIN! RELEVANT? HISTORY: Unexplained seizures at age 2. Normal EEG at that time. Vomiting every day for 30 days at age 4. Tests revealed high levels of inflammation in gut (sed rate of 101). Treated with powerful anti-inflammatories for 3 months to resolve symptoms. Saw rheumatologist who found no additional issues. Six cases of strep between 2nd and 3rd grades Saw significant increase in anxiety level starting in third grade So now what??? Anyone have any good suggestions for doctors near us that could help? Does this match any of your kids' stories? Could longer term antibiotics help? Wendy