Mar 28, 2008

Our weekend out of town

This weekend we went to visit some very dear friends of ours in Indiana. Ayla cried just about the whole weekend as usual and you could tell that she wasnt feeling well. It was very apparent that her knee was extremely swollen, you could even see if through her pants because her pants were tighter on that knee. We were still giving her Ibuprofen because our pharmacy did not have naproxen stocked before we left. On Sunday morning when we got up to leave she was limping pretty bad. Of course she cried all morning until we left and needless to say, it was a miserable 5 1/2 hours ride home. We stopped at the pharmacy before we got to the house and Ayla was crying to get out. We got her out and she could barely walk. My husband and I just looked at each other and almost cried. This was the worse we had seen her and it was just heartbreaking. We were just praying that this medince would help her.

Mar 15, 2008

Ayla's first Easter Egg Hunt

Today we took Ayla to her first easter egg hunt. We were not sure if she was going to like it or not but to our suprise, she loved it. She had a great time picking up the eggs and putting them in her bag. She also liked taking the eggs apart and getting the candy out at the end. What a great day, I am happy that she had so much fun!!

Mar 12, 2008

(Picture taken on March 24, 2008, the day of her official JRA Diagnosis)

Not too many people know that "Kids can get Arthritis Too". This is my daughter Ayla's story of her diagnosis and struggles with Juvenile Rhuematoid Arthritis at the age of 18 months. I am writing her story to raise awareness of this disease and to encourage others that are affected by this disease. I know how hard and frustrating it can be, so when you are feeling down, please think of my little angel Ayla and I hope she will brighten your day! She is fighting hard to beat this disease, and so can you!

It all started in February 2008 when I noticed that Ayla was limping and crying in the mornings when she woke up. At first it was just a little , I really did not think anything of it, I just figured she was still tired and wanted to be held. Of course now looking back, I can see how all of her signs and symptoms led to the diagnosis of JRA (Juvenile Rheumatoid Arthritis). Ayla was also crying more than normal in the mornings but that really did not phase me too much because Ayla has always cried a lot. My husband always said, "I think she cries more than the average child". I can remember back to when she was 14 months, she cried ALL OF THE TIME. We even took her to the Dr. a couple of times thinking she may have had ear infections. There were many nights that she would wake up crying for no reason, so we thought. Of course there was never any medical reason for her crying, so we just thought maybe she was teething and that was that. I think now that was probably around the time when her JRA started. Around 17 months is when the limping began. I mentioned it to my husband a couple of times but by evening she would be walking and running without a problem. My husband suggested that maybe she was just having a hard time walking on the hard wood floors in the morning, so I thought that sounded reasonable enough. At around the same time, I noticed that every once in a while when I picked Ayla up to put her on my lap she would just start sobbing. I could not for the life of me figure out why because after all she was sitting on my lap. It was frustrating because I had no idea what was going on. I know now that if I picked her up a certain way and it twisted her knee or pulled her elbow, that she was in pain and would start crying. She would also cry if she barely fell down, I even made a comment to my husband saying that when she falls down you would think that she fractured a bone or something not knowing that once again she was in agonizing pain from her arthritis. It was not until early March one Saturday morning that Ayla was limping around in her diaper and my husband and I were sitting on the floor watching her limp and at the same time we both noticed that her right knee was extremely swollen. Her knee was hot to touch and she could not straighten it out. It was at that moment that we both knew something else was going on. I will never forget that moment for as long as I live. My husband and I are both in the medical field so a thousand things went through our mind as to what could be wrong with her.We took Ayla to the hospital for an x-ray that same Saturday. To our relief there were no tumors so that eased the stress a little. My husband took Ayla on Monday morning to see the orthopedic doctor. After an exam and hearing her history, he suggested that maybe she had Juvenile Rheumatoid Arthritis and he ordered some lab work. We then started her on Ibuprofen for the inflammation and pain. When my husband came home, he told me what the doctor had said, and my heart just sank. He assured me that if she did have JRA, she had the mild type because only one joint was affected and that she would eventually outgrow it. My husband went back to work and I proceeded to go to the computer and read everything I could about JRA. This was probably not the best thing to do because there are so many types of JRA and they all have different treatments and different outcomes. I just cried and wished that I could trade places with her. It just did not seem fair that an 18 month old baby had to be faced with this horrible condition. It seemed like for the next couple of weeks we were in denial. I think we expected the swelling to go down thinking that maybe she just had a bad fall and everything was going to be okay and go back to normal. Sadly, this was not the case and after we saw our pediatrician, she suggested that we see a pediatric rheumatologist to see if indeed this is what was wrong with Ayla .My husband and I were devastated and we started calling around to see who would see Ayla. We found out that were we live, there are not any rhuematology doctors that specialize in pediatrics, so we were referred to a Children's Hospital in Columbus Ohio.
Our first appointment in Columbus was on March 24th 2008. We saw the doctor there and after looking at Ayla, he confirmed that she did have JRA and that not only was it in her right knee, it was also in her right elbow. After he told us that her elbow was affected, I remembered that in the mornings she would cry when I put her clothes on. I never even thought about her elbow being involved. Of course I felt stupid then for not realizing that her arm was hurting when she had to straighten it out to put her shirt on. She was diagnosed with pauciarticular JRA and he said that she has a great chance for a full recovery. He said that she will hopefully outgrow this at some point and that it may never come back. This was very reassuring to hear but the only problem was he did not know how long she would initially have it before going into remission. It could be one year, it could be five years. He decided to put her on naproxen twice a day and wanted us to start her in physical therapy once a week. He also wanted her to wear a leg splint at night while she was sleeping. We were to see him again in six weeks for another check up and to see if she was showing any improvement with the naproxen and P.T.
By June of 2008 at 22 months, Ayla's right ankle also became swollen. She was still limping and at her worse she was dragging her leg behind her when walking. She was not able to run and play like most children her age. It was at this time that we decided she needed joint injections. Under conscious sedation, she had her right knee, right ankle and right elbow injected with a steroid. This helped tremendously, the inflammation in her right knee went down and she was no longer limping. Her ankle and elbow continued to bother her.
By August of 2008, Ayla's arthritis started affecting her neck. We noticed that her neck was stiff and she was having trouble turning it to the right or looking up. We actually noticed it right when we were leaving for vacation. I remember thinking how "frail" she was, especially at almost two years old. She should have been full of energy!At this point, the Dr. suggested that we start her on Methotrexate. We were devastated because this is a very aggressive chemo drug with a potential of bad side effects. We went back and fourth about starting her on this medicine, we were torn and didn't know what to do. We decided to wait it out a little while longer.
In October of 2008 we had discovered that Ayla's fingers and toes were starting to swell. It was when we found her left knee hot and swollen that we called the Doctor. She was started on oral steroids (prednisone) and after a few days, she was a new little girl. Feeling as we had no choice, we also started her on the oral Methotrexate.After being on oral steroids and Methotrexate for six months, we decided to wean her off of her steroids. During the six months that she was on the steroid, she was feeling great and her lab work was normal (for the first time ever). As soon as she was off of the steroid, her arthritis started to flare once again so we switched her to the injectable Methotrexate to see if that would help. She stayed on the injectable Methotrexate for another three months.
By June 2009, the arthritis was in her right jaw and she was diagnosed with TMJ. After an exam, the Dr. was also fearful that it was spreading into her hips. At this point we decided to add yet another medicine, Enbrel. This was another injectable medicine as well. She was up to around eight medicines a day by now and was getting two injections a week. The Enbrel was the answer to our prayers and after a couple of weeks, we finally had our little girl back. It took over 18 months to get her into remission with medications. She has had no signs of arthritis since the latter part of June 2009.If she continues to stay in remission for one year we will be able to wean her off of her meds. There is a 50% chance that the arthritis will come back. Because of Ayla's multiple joint involvement, the Dr's have told us that she has only a 30% chance of going into remission without meds. It is likely that she will carry this into adulthood, however, we do not know what the future holds, there is only one person who does and we will trust in him and we will deal with whatever hand life deals us one day at a time. We will always stay hopeful that she will beat this.As parents, we strive to be the best advocates we can for our daughter. Most people do not know that "Kids Can Get Arthritis Too". It is our mission to raise awareness for this disease.There is still much research that needs to be done so maybe one day our kids will not have to suffer with this. Below are a few articles that Ayla has been in regarding her Jra.
Ayla is now 9 years old. For the past 7 years her Arthritis has been controlled with weekly Enbrel injections and steroid knee injections when needed. I wish this is where our story ends but for the last year she has been having belly problems and neck stiffness along with weight and growth issues. Sadly, she was diagnosed with Crohn's Disease this December 2015. She still never complained and we only found out something else was going on through abnormal lab results. She is now on monthly Remicade Infusions and so far she is doing great. This new diagnosis and treatment has been hard on her but she always manages to have a smile on her face. She loves school, animals and her friends. She is learning to play the Violin and loves to sing! We will never give up on finding a cure for Arthritis and now Crohn's, until then we will continue to raise awareness and hopefully be a support to anyone who is going down the same path we have been!

Here is a link to Ayla's video we made when she was the youth honoree for our Arthritis Walk!

If you have made it this far, thank you so much for reading "Ayla's Story". It really means alot to me! If your child has JRA or if you yourself have RA, I would love to hear from you!