Mar 1, 2009

Ayla's Update

On Friday we packed the car and headed to Cincinnati, Ohio with BOTH kids this time. My mom usually watches Brennan for us but she has taken a lot of time off of work lately, so we decided to take him with us. The 3 1/2 hour ride there went pretty well, both kids did well even though Ayla did want me to change her movies like every 10 minutes. Anyway, that is okay, at least she wasn't crying. Normally she would be miserable and would cry just about the whole entire time.

When we got to the hospital, John dropped Ayla and I off and he and Brennan went driving around for a little bit, got gas, ate lunch, changed dirty diapers..etc..we knew it would be a long day and Brennan would not last in a Dr's office for three hours.

The Occupational therapist saw Ayla first and was mostly concerned with her right elbow. This joint has always bothered her since the beginning and it is still a little swollen and has limited movement. There were also a few fingers that were swollen. She did a few exercises with Ayla and left and then we waited for the Dr or the physical therapist to come. Thankfully we were in the physical therapy room because Ayla had every ball that she could find out playing with them and she walked up and down a staircase they have oh about a few hundred was glad that it kept her occupied.

This was Ayla during her appointment

The fellow Dr. came in and did her usual exam, history etc and then the Pediatric Rheumatologist came in and did her quick exam. Although Ayla has been doing extremely well lately, she still has some swollen joints noticed upon exam. Both knees, rt ankle, several fingers, rt elbow all looked swollen to the PR. Also her right jaw is affected with arthritis and she was diagnosed with TMJ. They want us to try a treatment called Iontophoresis which is a treatment that is done in physical therapy.
Iontophoresis uses an electric current to push a chemical compound through the skin. Most often a steroid such as dexamethasone. Okay, this requires 20 minute sessions for three days a week for a period of several weeks. Okay people not to sound negative, but this ain't happening!! There is no way that Ayla will sit still for 20 minutes and let someone rub a wand over her cheek, nope not in this lifetime. Ayla freaks out when they take her blood pressure.. I can only imagine.. anyway, after talking to the Dr, we are just going to watch her TMJ and when we got back in May if there are no improvements then we may have to at least TRY the Iontophoresis.

Because of the swollen joints and TMJ, the Dr suggested that we go to weekly Methotrexate injections instead of the oral route. With the injectable route we know that she is absorbing 100% of the medicine and we may get better results. We are going to do this for four months, in four months if there are no improvements then we will talk about adding another medicine, most likely enbrel, which is another weekly injection. So please keep Ayla (and us) in your prayers as we begin this part of our journey. John will be giving her the injections and I know this will be hard on him. We are going to start next Saturday so I will keep everyone posted as to how it goes. We are also weaning her off of her prednisone so I pray also that this will not cause a setback . She will be completely off in four weeks. The Dr. also wants us to talk to our pediatrician about an iron supplement, Ayla is anemic which we have known for a while, but evidently some of her iron studies came back low.

While the Dr came in, John and Brennan also joined us. It was a three ring circus in that room with Ayla and Brennan. They were bouncing balls everywhere and going up and down those steps. It was almost comical as we were trying to talk to the Dr and keep our kids from hurting themselves at the same time. The Dr at one point said, " Um, you can take Brennan out in the waiting room where he is less likely to hurt himself, if you want". How funny!

It was a three hour long appointment and we still had to see the Physical Therapist after the Dr left. The kids (and us) were exhausted to say the least when the appointment was over. The drive home was okay, the kids only slept an hour so they were pretty cranky. Our next appointment is in May so we are going to try and stay the weekend and do something fun with the kids, like the zoo or Kings Island.

Ayla's current meds
Naproxen 125mg/5ml- 3/4 tsp 2x day
Ranitidine 15mg- 1.6ml 2x day
prednisone 15mg/5ml- .5 1x day
folic acid 1mg tab- 1x day
vitamin 1x day
calcium suppplement- 1x day
methotrexate- .3ml oral- next saturday will start injections

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