This past summer has been our biggest trial to date. It has been a series of errors, really. It started with my thinking that Remicade wasn't helping as much last summer. Switching her seemed like the right idea at the time because I always had to base my decisions off of actions before that. She is a child that doesn't like change, so I expected resistance. I wasn't really expecting Emily to not respond to the next two medications. Just like I didn't think that taking a break from physical therapy would be too bad. Well..... I guess this goes to show that Mom isn't always right.
As some of you may know, I have always known what is wrong with my children. I know sometimes before they are fully sick that they are sick and with what. I pretty much understood everything that was happening to Emily, and I was able to anticipate things. Sometimes I could even tell you exactly what hurt. And then this year came along and that all flew out the window. I know that there are several things at play here- for one thing, puberty is rearing its ugly head slowly. That alone can change all of the games. I think that some of it is because of the kidney stones, and some from pain amplification. I think the pain amplification started because of the therapy break and the med changes. But I think we are on the right path.
This summer has been insane with appointments, but this week alone has been very trying. We had our hospital medicine overnight appointment on Monday and Tuesday. No really new changes, though we did have the worst nurse EVER. I always pretty much love everybody and tend to overlook a lot, but this lady literally asked my 11 yr old to walk her through how to de-access her port. At first I thought she was kidding. I was in the middle of saying, "So, if you don't know how to do this why don't you leave it for someone that does?" when she got it out. I almost died. It was horrible. We made it home safely at least.
Wednesday brought us to another out of town hospital for Endocrinology and Nephrology. We started out so early, but our GPS totally messed us up. We got there 30 minutes late, but they still saw her. I did call to let them know we would be late. I pre-paid for tolls expecting more than last time because we planned on taking the full toll road, but the stupid GPS never even put us close to a toll road. At all. That was stressful. A 2 hour drive turned into 3.5. Endo is ordering growth charts from her other doctors. She did a bone age scan. Em's hand looks about right for an 8-9 year old. She wants us to do a plethora of blood work. We are waiting until she has to be accessed next for it as it causes her so much anxiety. Hey, maybe when she has her kidney stones blasted out! We shall see. She said that there is a growth problem marked by either a missing or a mutated X chromosome. It mostly affects girls, and it can cause problems like arthritis, so she ordered the chromosome test. I was worried a little about Zach, too because his feet bother him so much. Since he has PsA, I dig through those medical papers a lot also. I asked her about this article. She was very surprised that it discussed type 2 and not type 1, but either way she didn't think that we had to worry about Zach even with the family prevalence.
Nephrology discussed with us how to avoid kidney stones in the future. In truth, it may be difficult to avoid because they were likely caused by her Prednisone, but drinking more water and eating less salt will be helpful. She drinks water, she almost always has a bottle with her, but she doesn't drink enough. They aren't usually allowed soda, either. She just doesn't drink enough period. And she craves salt. She craves popcorn, potato chips, Ramen noodles. I hadn't realized it before but the little packets of flavoring that come with those noodles is 33% sodium. OUCH! Anyway, about 8 weeks after her second procedure he wants to do a 24 hour urine collection, and then see her back. He also wants us to collect pieces of stone for him to examine.
Before we saw Nephrology I stopped by to pick up copies of the CT scan and report. Of course I come home and research it all. Her stones are HUGE. One is 5X5 mms and one is 8X10 mms. WOW!!! That is crazy. There is no way they would pass on their own. I also read on the report that she has "gaseous distention of the colon" and a few other things that looked scary. It all seems to point back to 2 things- her esophagus is still not meeting at her stomach properly, which causes GI problems, and her stomach muscles are still weak, which are causing bathroom issues. I think once we get those stones out and strengthen those muscles she will feel a lot better. Her first procedure is scheduled for next Thursday, the 25th.
Thursday was her first appointment at a place that offers aquatic therapy. For a normal child this would be happy news. For a girl with high anxieties this was like walking the plank. She was NOT happy, so she kind of took it out on the poor therapist. She tried every trick to engage her, but Em wasn't having it. She was so worried about being in the pool that she couldn't see the happy side. Today was just an evaluation, but we start regular sessions on Monday.
We also started Biofeedback Thursday. We met Ginny, probably one of the coolest ladies that I have met this year. She was really chillin', but she also really listened to us. She asked Emily a lot of questions, and they talked honestly. It was lovely. They talked about sleep. Emily said that she reads to go to sleep every night because she hurts so much once she lays down to fall asleep. Reading takes her mind off of the pain. Also, she said the pain wakes her. (Sigh). At least now I know. We have been asking her about that forever. Ginny will be able to teach her techniques that she can use to fall asleep, to help herself relax, to help manage her pain. How cool, right? But it gets better. She placed electrodes on Em's main tension points around the head, jaw, neck and shoulders, and checked to see how stressed she was. She said that a normal person without chronic pain will be about a 2 on everything. Em had almost all of them 6+. She had one 13.5. I forget what her jaw was but it was really high. This is likely the cause of her migraines, headaches and jaw pain. So, we made our next 6 appointments with her. The week after our last appointment with her we will finally be seeing a good psychologist. Since the one that we interviewed for her seemed more overwhelmed by her situation than we are, we thought we would try again to make an appointment with the one who only handles kids with chronic pain. Between these 2 people, if she is still having headaches, Ginny recommended a headache specialist! I am hoping the Biofeedback will kind of heal that, but one day at a time. It will give her great coping tools that she can use for the rest of her life. And she told me that our pediatrician that recommended her called her yesterday to see if we had been to see her yet. So sweet! I will text our pedi tomorrow to let her know. We have some of the best doctors!
All in all, it was a very stressful week but also a very good one. I feel like we are on the right path, like we have the right tools in place. In a stressful time a couple of weeks ago I was trying to figure out how I would juggle all of this. I figured that if I did aquatic therapy after my classes are out on Mondays and Wednesdays and perhaps any Friday that we were in town then we could do biofeedback and psychiatry on Tuesday's, and our out of town appointments on Thursday's. So far that is working out brilliantly! I didn't actually expect it to work because it is a lot to ask of other's but the pieces are just falling into place (praise The Lord!!!) Hopefully this will help a lot.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, July 19, 2013
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