surfermom

Rachel, DD was initially dosed at 2 grams per kilo of her weight and then went to 1 gram per kilo. That puts her at a current therapeutic dose of around 42 total. I can't recall the rate as it is ramped up during infusion but we do it over about five to six hours in total. DD is given Benadryl and Tylenol before each infusion starts to prevent side effects. Make sure you ask about this if this is not part of your child's protocol. Powpow, DD is undergoing the exact same protocol timing as your daughter. This next treatment will be nine months since she had her first Rituximab infusion. We had hoped the first two infusions would have been her only course but she is still not responding as rapidly as we had all hoped, thus this second round. When her immune system was first suppressed, she got strep once, one bad cold and numerous inexplicable open sores that were slow to heal.

powpow, I remember reading about your daughter and am so pleased to hear about her improvement. DD16 had two Rituximab treatments late last summer. Because the trajectory of her improvement, while observable, is still not what it could be, she is about to have a third infusion.

DD16 also has a rheumatic fever diagnosis with brain and joint complications with no detectible heart involvement. DD has or at one time had profound and debilitating symptoms including joint pain and swelling, basal ganglia (caudate nucleus) inflammation (resulting in OCD aversions, tics, chorea, mutism, enuresis, negativism, anorexia…). Her major treatments have included IVIG, Cellcept and RItuximab which have put her on a very slow but steady course of recovery after almost two years. She is on azithromycin prophylactically but has had one confirmed bout of strep since on it. It is important to know that it's not just the strep - but the destructive antibodies that can remain in the body for a great deal of time. We know that in Hepatitis C, for example, that it can take a newborn from a few weeks to up to 18 months to clear his mother's antibodies from his system. One theory is that my daughter, who has a profound expression of symptoms is on the slow end of the spectrum in cleaning her problematic antibodies - even with treatment. DD, always seems to have a tough day or two post IVIG but then it works significantly for about three to four weeks. It took several infusions before we saw any real changes at all, but we are confident they have been central in her recovery.

T, I am incredibly excited for you and DS! HAPPY BELATED BIRTHDAY TO HIM! I know you started on Cellcept and i have been out of the loop, but with DD16, it took her almost six months to see results which ended up being fairly significant. Devil's advocate here, but how do you know it's the oil and not Cellcept, IVIG, etc.? Thrilled!

I fought it tooth and nail but after six months of begging, pleading, bribing, following all the rules of dealing with OCD aversions and then breaking them...sertraline lorazepam….I finally agreed to having a feeding tube inserted when DD 16 finally got to the point that she wouldn't even swallow saliva. It felt like I was giving up in a way, that I had lost a battle but I wish we had gone that direction sooner. We were able to get her weight up again and mealtime stopped being such a stressful experience for everyone. We came close to having it removed once, but her OCD kicked in after eight months of fairly cooperative eating so she had to go back to mostly feeding her via her tube. The biggest downside has been her inability to surf and swim but I am grateful that I can put my focus on dealing with her other issues instead of the dangers of anorexia complications.