Travon S.
Diagnosis: Opsoclonus-Myoclonus-Ataxia Syndrome

The past 3 months have been hectic to say the least. Travon seen Dr.Pranzatelli in September because of lingering OMS symptoms that Travon is still having & they made the decision to have him do 6 rounds of Cytoxan, which is a low dose chemo. Travon has also been back on a daily injection of .58 of the ACTH since then as well. We are unsure of why these symtoms are not going away. We are in hopes that once he finishes the 6th round of Cytoxan in February, that the symptoms will have diminished and we can get back to our “normal”. The drooling is still an issue, along with balance issues which causes him to fall down a lot. Travon is still continuing with all of his speech, physical, and occupational therapies though and he does great with them. His speech has improved greatly in the last few months but he is still unable to put words together to form a phrase or sentence. He says one word phrases to let me know what it is that he wants or needs. He has stopped using his sign language and is strictly verbal now but that was a milestone we were hoping he would achieve anyways which is great!

Travon still enjoys all the cards and letters he receives from everyone! He’s not old enough to read yet, but he loves to look at the cards after I read them to him! Thank you to everyone for keeping him in your thoughts and prayers as he continues his ongoing battle with OMS!
 
Sincerely,

Jodi (Travon’s mom)