As you can see, it has been a long day!
Hopefully, the picture will do the talking and I'll use less than a thousand words (not likely, though ; ) )
This is Miss P about three minutes after B put her in her car seat. He was still loading the car and making lots of noise and she was out...We are all exhausted. B carried everything, pushed the stroller, held her during blood work, was an amazing daddy & husband, etc. I've already had seven seizures for the day. P had blood drawn and has been in doc appointments since early this morning and she was diagnosed with Juvenile Arthritis.
This is considered an autoimmune condition and can have some genetic background to it. They said it's rare for a parent or any family member to have any type of autoimmune arthritis. However, it is very common to find many other autoimmune related conditions in the family. We have a lot...My thyroid and seizures are both blamed on autoimmune conditions; B's cancer was an autoimmune type of cancer; we have other family members that have been diagnosed with alopecia, shingles, ulcerative colitis, etc. They said the ulcerative colitis is the most likely genetic chain. Though she should never experience any of those symptoms.
The blessing is that we were able to see the doc that our pedi & the specialist at Children's both wanted us to see. Both of them prepped us that she is the best of the best! She has even been named as such (i.e., top 10 docs in America). It is a teaching hospital and so she was quick to educate as she spoke. First words to her resident, nurse, etc., upon entering the room, "what do you see? That's right blonde hair, blue eyes, This is a predisposing factor for an autoimmune condition. Isn't this what most of our patients look like?" She later explained that blonde hair and blue eyes doesn't mean you will have a condition as such. However, when these kids go to the Scottish Rite summer camp, somewhere upwards of 70+% are blonde hair, blue eyed kiddos!
The doctor then told us that most kiddos with this diagnosis go on to be the cutest and smartest kids in their class. Obviously, as her parents, we loved that statement!
We had a sonogram done of her foot. They were looking to see if any of the inflammation was caused by fluid around the tendons (this would make the diagnosis even more specific). The first time they did it, they couldn't see anything. So, they called in the head of radiology. He was fun and a Hodgkin's survivor like B!!! They didn't find any fluid and so they believe it is just a standard case of Juvenile Arthritis.
P was so tough, as in strong, all day. We had to wake her up early to get to the appointment on time. She ate breakfast in the car. She got a late lunch due to all of the testing, but still worked very hard to finish her lunch. While PT was in the room telling us what we need to be doing with her (lots of swimming, squatting, standing, playing with sand with her toes), she was finally able to finish her meal. Then, Momma had her 3rd seizure while at the clinic. After that, P wanted to come sit in my lap. She had just managed to sit down and started to snuggle as I was writing down my seizure when all of a sudden...I don't know the polite way to write this....so, here goes....she projectile vomited her entire lunch all over just about everything in the room! This has never happened before, so we were scrambling.
Right now, they have her on a very expensive NSAID that they want to keep her on for at least five more weeks. Then we will go back and see how well it has worked and repeat blood tests. In the meantime, we need to look for an absolutely wonderful pediatric ophthalmologist that is excellent/skilled at doing slit lamp studies. She will have to have this study done every three months for quite a few more years. One of the silent attacks of this diagnosis is that it effects their eyes (uveitis). By the time we notice it, she would be close to blind. So, this study apparently watches for it and catches it very early so that she can start getting treatment and avoid blindness.
Our prayer is that she is much better when we return at the end of next month because the next course of action or treatment would be methotrexate (chemo). They said it is a very low dose. Still, no one wants to know they are giving their little girl chemo. The irony in this situation is that we are at the same point with my doctors. They want to try a few more things and then they want to start me on chemo (Rituximab).
Here are a few pics of her toes so that you can see why we were concerned.
|From a little too faraway, but you can still see the 4th & 2nd toe are larger than their buddies!|
|Much better view!!|
They said the ANA test that came back last week as positive and very elevated is pretty non-specific. Most kids are going to have theirs elevated as well, but your #s can be high and not have this condition. We ended with her having bloodwork!!! She was such a trooper. They took 5-6 vials. We were so proud of the great job that she did!!! She cried a little bit once the needle was in her arm, but then she was smiling again and she gave the phlebotomist a big hug goodbye!!!
In the end, the doc said this is a very serious condition that needs to be monitored very closely. However, on a scale of serious conditions she could be dealing with (1-10), it's a two.
We are so proud of our girl and ask that you would continue to pray for God to provide wisdom to the docs and burden their hearts over any changes that need to be made or directions we might need to take or not take.
Thank you all so much for your prayers.!!!