Routine Fllow Up With Dr. Daihke

Jenna had her 8 week follow up with her rheumatologist yesterday. As always (not that I am complaining) she had ZERO inflammation yesterday. *sigh* She ONLY seems to have it in between appointments. I am wondering if her even believes me. She has done this with every appointment. About week 5 she starts to swell. Then by week 7 it starts to go down. we go to the 8 week follow up....nothing. So he isn't seeing her when there is swelling present. Is this an issue really? I don't know. She also was sick a few weeks ago. NASTY stomach bug that has been floating around up here. Boy did THAT set her back. She didn't eat for nearly two weeks. She lost 5 pounds. Which on her tiny body is ALOT. She has put 2 pounds back on and has earned a new nickname....Tapeworm :o) So it seems as though she is finally on the mend from that. It also seems as though she is tolerating the increased MTX. Phew. I am sure that is what brought the swelling back down is the MTX finally kicking in. No complaints about her eyes either and we are at a full week with no drops!! No squinting no telling me they hurt or that she can't see (I will NEVER 4get that moment as long as I live). I cannot WAIT to see what Dr. Foster has to say next Thursday. I just KNOW her eyes are quiet. If there are cells I swear I will eat my shoe. Oh back to yesterday for a moment. It was routine lab day as well. We have gotten into a pattern where 8 wk follow up with Dr. Daihke is also routine blood draw time. She used to do SO well with it. Then that MORON in the ER ruined it. Ever since him it is awful. We have to pin her down while she screams like a banshee. I hate it. Although we did learn this time that it is the "noodle" that she doesn't like. Sheesh girl! WHY didn't you say so?? So Miss Mary (she is so awesome)told her, "if you hold still then I won't need it". Well she didn't exactly hold still but that is how good Mary is. She got the teeny butterfly needle in....had to push it up farther once....but all in all it went well. Just LOTS of screaming. I also left marks on her arm. *sniff* I didn't mean to. Miss Mary said I didn't need to hold so tight. She really wasn't moving that much. Oops. So next time we will try no "noodle" and see how she does. Okay...I think that's it :o) Til next time folks!

I Just Love Dr. Foster :o)

We made another trip down to Cambridge MA yesterday. We got a little lost for a bit. That's what we get for trying a different set of directions. We just backtracked, got to a place that was familiar and made our way. NOW the next time we know exactly where to go. Easy as pie. We found that it is best to park at the Galleria then take the free shuttle over to Kendall Square. It pulled up right in front of Dr. Fosters building and runs every 20 minutes.
Now...on to the appointment. As before everyone at MERSI was so friendly and warm. They are wonderful with Jenna. Dr. Foster hit the nail on the head when he walked in, smiled at her and said, "Hi Princess.". He is so good with her. We are definitely going to continue to see him to treat her Uveitis. As of now her eyes are for the most part quiet. Only trace cells. Pressures are good. We are increasing her MTX dose from .6 to .8 this Sunday. Since her JRA is flaring as well it was probably time to increase anyway. Over the next two weeks we will taper her drops to none at all. That way she will have been off the drops for two weeks when we go back to Dr. Foster on March 19th. He wants to see how her eyes respond to just the MTX with no drops. I am SO eager to find out. If she responds well then we will continue to see him every 6-8 weeks for follow ups. I think it's time to get an EZ-PASS. But hey....I now no longer have a fear of bridges or escalators!

NEVER Going Back There

Jenna had her follow up with Dr. Berman today to check her eyes. I have never been overly impressed with him or anyone else on his staff. BUT since he is the ONLY somewhat local specialist we continued going to him. When we first started going o him Jenna was at a point where both eyes were quiet so we figured we would just see him every couple months to make sure things remain quiet. Odd that while under his care she has slowly gotten worse. On top of that he is extremely clinical and almost robotic. He is a pediatric specialist. He ONLY sees children. There is zero tolerance, compassion or patience. Today Jenna accidently kicked him while swinging her feet. She hardly touched him and he jumped and grabbed her foot. Then her head had tilted slightly so he shoved it back into place. YES....shoved. He got frustrated because she wasn't looking straight ahead. Work WITH her not AGAINST her. Then he said he wanted to test her pressures. Say wha? She had to be doped up on versed last time and she still fought but you go right ahead and try pal. NOW she is really kicking. So with one arm I am bear hugging her to hold her arms down and with the other hand I am holding her foot so she doesn't kick him. He asks his assistant to hold her head still. He is yelling at her to just HOLD STILL. I am calmly talking in her ear trying to reassure her. Then I decide to pull out the big guns...." Do you want a Webkinz? " I just want it over. I'd buy her a car at this point. She calms down and he checks her pressures. They're fine. We are done and leaving. I notice big red welts on her neck, shoulders and cheeks. *GASP* Oh no...uh uh....we are NEVER coming back here. No sir. Oh yeah and by the way...we are increasing drops in her left eye but he doesn't want to see her for FOUR WEEKS. No problem pal...you'll never see her again.

In Alot of Pain

So I normally only blog after doctors appointments. No appointment but lots of swelling and pain. Her knees and one elbow have been swelling off and on. One day her knees will be big balloons. Next morning....nothing. Her elbow seems to be staying puffy. She complains alot about her back, legs and now her arms too. But does she slow down? NOOOOOOO!!!!! Yes I KNOW she is only five years old. She is playing like a normal five year old should. But that's the thing. She ISN'T a normal five year old. I hate seeing her in pain like this. Time to call the rheumatologist. Of course it's the weekend so we'll have to wait until Monday. She is currently on .6 MTX. He says there is plaenty of room to go up. She is also taking her prescription strength ibuprofen 3x daily. Cheer 101 starts in less than a month. She is so looking forwrad to it. We have GOT to get this under control by then.

"There is no significant change."

This is what Dr. Berman said today about Jennas eyes. Not what I was hoping to hear. I really felt so good going into this appointment. He took longer looking today than normal. Not good. Then when he was done he didn't sau anything. Just started writing in her chart. Uh oh....not good. I knew it wasn't what he had expected to see. He said her left eye is still quiet but her right eye has trace amounts. I don't think those were there the last few times. We are still going to try tapering to everyother day and see him again in 3 weeks. Now I have my doubts. I have a feeling that in 3 weeks time the cells will have come back. I thought we had this monster beat. Just goes to show....never get to comfortable.

Follow Up With Dr. Daihke

Jenna had her 8 week follow up with her rheumatologist today. It went well. I guess. Not that I WANT her swollen and in pain BUT she has been having alot of it lately. Not today though. Today all her joints looked and felt GREAT! Good news yes but I wish that he could see what they look like on other days. It's weird how it comes and goes. He said that she is doing well in his opinion if she can still have days like this. Even if it means bad days too. Yeah I guess. I just would prefer NO bad days. But I'm her Mommy. Of course I would want that :o).So for now we are staying the course with .6 MTX 1x weekly and Ibuprofen 2-3x daily. She goes back in 8 weeks for another follow up with him. Oh yeah....and it was time for her labs so we figured we may as well kill two birds and do it while we were there. Geez that kid is STRONG. Takes three adults to pin her teeny body down. And that kid can SCREEEEAAAAM! My ears are still ringing. Thanks for reading. Stay tuned for the next update January 22cnd after her follow up with Dr. Berman ;o).

Follow Up Appointment with Dr. Berman

Jenna had her follow up with Dr. Berman today. I was SO nervous. I didn't like the idea of sedating her. Turns out she's a RIOT when doped up! The oral versed worked well enough that they were able to do the exam without completey knocking her out. Her pressures are normal. YAY! Vision is fine. YAY! Right eye "quiet", left eye "no active inflammation". YAY! So we now taper to drops once a day for the next two weeks. At that point hopefully every other day with a three week follow up. *sigh* I'm starting to see that bright light. Now back to the versed for a moment.....picture your funniest drunk friend. That was Jenna times about 100. She was so loopy it was hysterical. She couldn't sit up, her speech was slurred, her eyes were rolling and she wasn't making any sense. She goes to see Dr. Daihke on the 14th for a follow up. I am eager to see what he has to say. Jenna has been in a lot of pain lately. Check back next week for that. Ciao!