She is in so Much Pain

My poor Bean has been in so much pain lately. I just don't know what to do for her. She is her own worst enemy of course. Seeing as how she is an active five year old she isn't exactly doing anything to help herself out but what am I supposed to do? FORCE her to lay down and rest her body?? How on Earth would I even do that? It has been at least 2 maybe 3 weeks now that she is walking funny. Complaining ALOT. She can't sit in a chair. She does this weird squat thing. Doesn't look comfy to me but hey it works for her. I can't get her to keep shoes on her feet. We keep buying different ones hoping we will find a pair that feels good. So far the only thing that feels good is bare feet. Socks are usually off too. Fine at home but out in public we get some looks ya know? Plus who knows what she is walking on. *shudder* She is complaining of pain in odd places. She has the normal leg and feet complaints but now she also has chest and eyebrow pain. Huh? What the heck does THAT mean?? Again...she is only five so getting her to articulate these pains is nearly impossible. Is it an ache or a burn? A sharp pain? Where exactly is it? Is it your heart? Lungs? Ribs? Breast bone? What do you mean your eyebrow? Is it your eye? HOW does it hurt? ARGH!! I called our regular family doctor so I could check in with her to see what she thinks about how Jenna is doing. May 19th!! That is the soonest she can see her. *sigh* Yeah I CAN call her rheumatologist but I am just not sure that he is doing all he can for Jenna. So DO I call him? I just don't know. All I know is that we have not tamed this beast sufficiently. Instead of showing signs of improvement she is getting worse. She didn't even want to go to school today. Jenna LOVES school. LOVES it. Loves her teacher, loves all her friends and the activities. Plus the playground is accessible now that all the snow finally melted. She LOOOOOves the playground. She clung to me wanting to stay home. I hugged and kissed her, pried her off my arm and sent her away with Daddy. Did I do the right thing? I just don't know. She is also SO tired. Is it the meds? The disease itself? Is it a disease? Or a condition? Anyway....I am attaching a photo taken last night. Her knees look awful to me but what do I know?

We Got to See Dr. Pirone Yesterday :)

Dr. Pirone is the first optometrist that saw Jenna and diagnosed her with Anterior Uveitis. We LOVE her. She has rheumatoid arthritis herself so she is very knowledgeable of the disease as well as so compassionate. She is so kind and gentle with Jenna. When the cells continued to multiply at a rapid rate that is when she recommended we see an opthamologist because it was beyond what she could help us with. Now that Dr. Foster has gotten the Uveitis under control we can do follow ups with Dr. Pirone. YAY!
So it was a good appointment. Still all clear! No pressure check. *sigh* She is still so freaked out by that. I don't know what we are going to do to get them checked. BUT...she said everything looks good for now. We know what to look for and if we start to see signs we will bring her right in.
A friend of ours that has a son with JRA and Uveitis had their routine 8 week follow up with Dr. Foster yesterday. Unfortunately for them it was not good news. His eyes have been quiet and off drops since last July with good pressure readings. All good right? Apparently no. He has developed a cataract in his left eye. A very big wake up call for all of us. It was our understanding that cataracts was caused by extended use of drops and or high pressures. It seems as though the damage left behind by Uveitis can cause cataracts as well. So please add our friend Jake to your prayers. We would appreciate it.
On another note...Jennas joints are already starting to swell and ache again. Not good but we are watching closely. We were really hoping for this latest MTX increase to last longer than this! Only worked for about a month. COULD be the lousy, cold, damp weather we have been having. I don't know. Time will tell.
As always...thanks for reading!

ALL CLEAR!!

Jenna had her follow up with Dr. Foster last Thursday. I was soooo looking forward to this appointment. At her previous appointment we had increased her MTX from .6 to .8 with the hopes that that alone would be enough to get her eyes clear. We left there with instructions to taper drops from 2x daily to 1x daily then every other day. Then stop completely 2 weeks before returning for this appointment. At first I was worried and nervous but I trust Dr. Foster. For those 2 wks I saw no squinting. No covering her eyes. No complaints of pain. Nothing....wow. It had been so long I didn't even realize that this had become "normal" for her. So I KNEW going into Dr. Fosters on Thursday that her eyes were clear. But still....to hear it...wow! WOW! The look on his face said it all! But to actually hear the words....yeah...pretty cool. BUT...we cannot get to comfortable. We have to be VERY vigilant. You see it WILL come back. That's okay though because we beat it this time and we will beat it again. For now we will just enjoy the "quiet". :o)

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.