Sorry there has been such a delay in an update on Makhi. I am happy to report that Makhi is now down to .08 on ACTH and going strong...(Knock on Wood). It does take Makhi about a week after the .o2 withdraw to adjust but he is doing well.
Makhi's speech has really come along way this summer. I can't wait for him to return to school so that his teachers can see how much progress he has made. He will be returning to the same class room this year with the same teacher so that is a relief for me and for Makhi at leasts it saves me having to teach them all about OMS and they already know Makhi and how to handle his behavior.
Makhi's behavior still continues to be our biggest challenge! So over the summer we have tryed some different things. He is currently under the care of a wonderful behavior specialist. We also did a trial run of Aderall 5mg which helped a little but left Makhi very irritable so that has been discontinued and now we are trying Coldine and that seems to be working a little better without all the side effects.
We are approaching the 2 year mark of the OMS and Neuroblastoma DX. On July 18 2007 is when we discovered that our baby boy had cancer and one of the rarest neurological conditions in the world (1 in every 10 million children). When you really sit back and think about it you have a better chance of winning the lottery than becoming DX with OMS and Neuroblastoma. Crazy ......
Makhi has learned so much this summer he continues to do well with potty training he is learning to swim,riding his bike and he has even taken interest in dressing himself. He wants to do everything himself even pour his own drinking and make a mess all over the floor..LOL.....:)
He makes me proud he is such a fighter and has been since the day he was born. He becomes frustrated sometime because somethings take him a little longer to catch on to than children his own age but he never gives up he presses on. He is my hero and everyday he reminds me what life is really all about and never to give up!!!
He will beat OMS and beat all the odds stacked against him I just know he will.
I am still praying for all the OMS kids that are still fighting this disease along with Makhi.
Tara
1 comment:
Dear family Woodman,
Our daughter Eline, (14 yrs old), has OMS since her first birthday.
After 12 years of prednisone steroids, we were able to stop all steroids under the treatment of methotrexate and rituximab (rtx). Once a month, an infusion of gammaglobulines is given as an immunologic safety net, since RTX wipes out all B-lymphocytes.
(Methotrexate is now being phased out over time.) RTX is given, when needed (i.e.: when the B-lymphocytes slowly start increasing again). Usually this is twice a year: two infusions, one week apart. With extremely good results.
Dr Michael Pranzatelli (California --> see google) is thé OMS-authority in the US on OMS and RTX. Feel free to contact him, or have your neurologist do this for you !
Good luck with your continuing fight and struggle !
Sincerely,
Dr. R. Vermeulen (Belgium) + partner Kris
robert1vermeulen@hotmail.com
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