greekdude

Hi any update on Dr Latimer's recommendations and the status of your D?

We are considering high dose treatment for our son. He used to have lots of anxiety, OCDs, separation anxiety, sleeping with us, sensory problems, and finally fell to severe anorexia in late 2019. Hospitalized Oct 2019 - Jan 2020. Long story ... well long .. 1) The day he was born (apr 2005) he was considered by the hospital "overweight" (4Kg) (but also 55cm in length) so they took him away to some sort of emergency room away from his mom. 2) two months after, severe otitis, two weeks in the hospital. 3) constant otitis from then on, he fought this with the help of homeopathy, and in extreme cases with Xozal (cortizone) 4) till the age of 10 he was a happy healthy (otitis aside) kid, good in school and in basketball. But he wanted to sleep with us. Rarely slept alone 5) from 10yrs old on, otitis episodes start to become less and less, he stop the homeopathy, the kid starts closing to himself, stops basketball 6) 12 yrs, he is diagnosed with hypothyroidism, starts to sleep alone, starts restricting food , anxiety becomes worse, gets bullying in school 7) 14 yrs, anxiety, OCDs, ceremonies in the bathroom, even more food restriction , becomes 180cm tall, 48Kg . Weird thing he was gaining height through the whole anorexia period. 😎8 ) 14.5 yrs, diagnosed with AN (anorexia nervosa), the hospital takes him from us. spends 3.5 months in there , gets out 182cm , 62Kg 9) since no FBT in Greece, we start feeding , feeding and feeding more , following the FBT school, believing that Anorexia was a 3rd evil external spirit responsible for any misfortune we had 10) some net-friend whispers me about PANS/PANDAS . I read the criteria and thought our S fulfills the PANDAS criteria. We saw a doctor from the USA, he told us 80% PANDAS and ordered some exams and to try a 14 days intensive abx test. He didn't respond to the test in a massive manner, but his bloodwork was very PANDAS-y, high ASO, very high Anti-DNAse-b , and serum IgE . So we are heading for tonsillectomy and afterwards for IVIG. Has anyone gone through this? What should we expect in every step?

I have read the dose must be high e.g. 1.5g/Kg , some say 2g/Kg , for example if your child is 65Kg he'll need 100 to 130gr. This is usually split in two days, so 50gr / day. And the rate should be predetermined by the doctor. I have read frequent low dosage shots are not recommended.

Thank you for the info!