Just a quick update on yesterdays appointment. I was expecting the bad news of the eye has not improved but I was completely unprepared for the news that that it had spread to the other eye! Wow what a blow it was to hear that! So at this point the current meds aren't doing the complete job so we will be discussing adding a new med at tomorrows appointment with Dr. Vehe. I did ask Dr. Bothun if we could possibly get rid of the naproxen if we add another med. He thought it was highly possible but I have a feeling Dr. Vehe will feel differently. They don't always agree on the meds. But one of my concerns is all the meds that go into Jackson on a daily/weekly basis. So well see! Currently Jackson is on Naproxen 2x daily, Methotreaxte injections 1x a week, Pred Forte eye drops 5x a day and now adding another med tomorrow along the lines of enbrel or Humura. Too much if you ask me! This is so discouraging I thought we should have made more progress towards remission within 5 months. I have done my best to be so strong and act strong when people ask about Jackson but I am not and I may just loose it now! I have been sooo blessed with some great friends thru all of this. Some of who amaze me that deal with there own children with serious heath problems but yet have the time to call/text to check on my child! I hope you know who you are and you have been sooo great to me! But I don't want to forget all my other friends who have been there for support and thank you to those who have taken time away to ride to the appointments in Minneapolis with me. As little as it seems it is huge to me and soo apprciated!
Thanks for checking in and those who are a constant support to me! I will update after tomorrows appt!
Sara
Loss
8 years ago
Sara so sorry to hear the bad news. Those kind of appointments are always so heartbreaking. And you are absolutely right. It is so hard to continue to put up the brave front. It is OKAY to fall apart once in awhile. Then you can pick yourself back up, dust yourself off, and get going again. I can tell you from personal experience that pred forte and MTX will NOT control Uveitis. Also typically Enbrel won't do the job either. Humira or Remicade infusions are usually the best option. Visit Dr. Foster's website and go to his ask Dr. Foster section. He is one of the BEST in the world. People from other countires travel just to see him for treatment. You can ask him questions and he typically responds within a matter of hours. I hope this all helps. It WILL get better. (((HUGS))) Mama.
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