Mar 12, 2008


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(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!
https://www.youtube.com/watch?v=-a10E4D5XHQ

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!

8 comments:

Laine said...

oh my! My little girl is 19 months old and I can not imagine the heartache you went through knowing your baby was hurting. Thank you for sharing your story!

Deetipton said...

Your story has bits and pieces that sound similar to what we went through. http://deetipton.blogspot.com/p/why-i-blog-method-behind-madness.html
My little one NEVER slept until she started on Naproxen. She slept 15 minutes at a time as an infant. I haven't heard many other parents say that. To me, it's significant. It's so hard what our babies go through. God bless & thank you for sharing! It is so important that we get the word out! Arthritis isn't for sissies!

Nicole said...

I just got a chance to read Ayla’s whole story and the way you found out and what the doctor’s said was like reading my daughter’s story, they were extremely similar.

My daughter was just diagnosed last month and like Ayla, it all started with us noticing a limp…once we had the diagnosis and realized what joints were affected (both hips, both knees and her left ankle) a lot of the things she had been doing up to this point, crying for no reason, etc, all started to make sense…Bevin has ALWAYS walked funny, we all joked that she looked like a drunken sailor, not knowing that it’s affecting 5 joints in her legs we now know why she walked so funny. She would cry at times when we changed her diapers or clothes…

No one I know has gone thru this or has a child going thru this so to be honest I have no idea what the future for Bevin’s diagnosis could or couldn’t hold, but I’m really glad I was able to find blogs like yours, reading the stories is helpful.

I just started a blog for my daughter as well (how I ended up coming across yours) so that we could keep friends and family informed of how she’s doing:
http://www.bevinsadventureswithjra.blogspot.com/

Jaiden's Mommy said...

Your story also sounds a bit familiar to mine-especially after the diagnoses you then think of how everything matches to JRA. The main difference is that my daughter was hospitalized at 8 months because they could not figure out why she was getting hives/rashes and fevers from no where and the initially diagnosed her with Kawasaki Syndrome. Now after a month in the hospital, many many tests, cat scans, xrays, blood, bone marrow biopsies, stool and unrine they have diagnosed her with Systemic JRA and we just started her on the prednisone and mexotrexate. We have seen improvement just like you and it is awesome to see that a child can come back around.

Anonymous said...

Hello Lesli!
I am new to your blog and desperately seeking people to join me too, on this journey! My daughter was diagnosed with JRA at 6 and a half. FIrst both knees swelled up like cantaloupes, then her ankles, then her cervical spine, and now, her left hip (although she also complains of her right hip hurting) but it is not confirmed in her right. Right around the time she was diagnosed, she also had a double whammy: after ruling out cystic fibrosis (yes, it was ruled out but emotionally taxing!!) she has severe persistent asthma. She is not allergic to anything but I believe it is much like JRA --just constant inflammation in her lungs, mucus, cough, constantly. She has been put high dose medicines, failed NSAIDs 5x, failed MTX, joint injections 4x, now on enbrel, PT, pneumonia, asthma attacks, high dose inhaled steroids, nasal steroids and oral steroids for the past 5 months. It has been an awful year. I do not even think I have had a chance to really fully grieve not having a "well" daughter anymore. I like your optimism. I like that you love the Lord. It made me cry. I feel very far away from God. We are believers but when your daughter asks you why is God not healing me, it broke my heart to say "I don't know." I am searching for a purpose in this, and it is hard to pass the faith and positive outlook on to your daughter when you are completely searching for answers yourself. Anyway, thank you for sharing... Kate

Anonymous said...

I would love to talk to some mothers who have children with arthritis. I am so depressed and all alone. my email is ashtono@yahoo.com

Maribel said...

Hi, my name is Maribel, I was diagnosed with JRA at 18 months old as well. 18 months old puts me back in 1995-ish. I am currently 20 years old. It all started with a limp and a swollen left knee that needed to be splinted and hours upon hours of PT, both at home and hospital. Since being diagnosed, (most of this is recollection from my mom, as i was too young to remember) I battled through it at first with methotrexate and naproxen, this I remember distinctly, because when I started medication I must have been around 4-5 years old, just before starting preschool and kindergarten. The side effects were AWFUL. I used to constantly break out in rashes and would have nausea and vomiting all the time. After a few years putting me somewhere in 3rd or 4th grade, I went into remission for about six months, after flaring up again, my doctor prescribed corticosteroids and enbrel. (He discontinued using the naproxen and methotrexate by then) Things were getting better for me battling with this for that time because I wasn't having nausea so much anymore, however school was a problem. Kids didn't understand and the popularity hierarchy of children mostly consists on who can kick the ball farthest, or ran the fastest, or jump the most rope. At least for my generation! (Ha, I feel so old now (: ) But, continuing with my story, I wasn't the most popular kid, which caused me a few deep rooted esteem issues, which thankfully I've finally overcome. Somewhere around 7th or 8th grade, I had to switch medications yet again due to the enbrel not working as well as it should anymore. I was then switched to humira. Humira worked wonders for sometime, but due to "not liking being pinched" (yes, I was a cry baby about it then, I regret it now), I rebelled against it and refused to take it, and at that age there was no way my mom could convince more or force me to take them. Fast forward to high school and i'm in 10th grade, when yet again, humira switched to Orencia, my current medication. Since taking that, I've been having WONDERS. I played soccer both 10th and 11th grade years! (Against my doctor's recommendations, but by then, I knew my body well enough to know what I could and could not allow myself to do.) Was it a smart decision? Probably not, but at that point in my life I refused to let myself be limited by my illness and proved that you could still live a full life with barely any restrictions. 12th grade was the worst, both psychologically defeated and physically agonizing for myself and my mother who was with me battling this since day 1. During my 11th grade year, while I was 17, I was getting CT scans on my teeth and jaw to prepare for braces because my teeth were crooked. The orthodontist discovered that there was a problem with my jaw joints. They appeared flat instead of round. It was then that I was told that I had TMJ. This had apparently developed for a while now and was either never noticed, or overlooked. My mom and I have resolved that it must've developed during the time that I was supposed to be taking the Humira but was skipping doses and basically went 2-3 years doing so. (This is why it's important to take the meds and why I regret it so much that I did what I did with humira) We started to talk to Oral surgeons about temporal-maxillo-facial surgery. This surgery entailed so much worked to be done, entirely involving my face, which was very bothersome for me because as a teenager, I was very concerned with my appearance. After a year with dealing with braces, the surgery date was set. August 25, 2011. I walked into the hospital that day before the sun rose, and came to well after it had set. My surgery consisted of cutting both my top and bottom jaw into 3 pieces each, in order to realign them and save the joint. (There is more, but I needed to split due to character restrictions.) ):

Maribel said...

(continued) Titanium plates were placed to hold it all together and I needed a chin implant as my lower jaw was so badly deformed that I appeared have no chin. The surgery went well without any complications and the recovery was hard. Having your jaw wired shut made it impossible to eat anything that couldn't be sucked through a straw, and with arthritis medications, weight loss was tremendous. I lost well over 20 lbs over the course of 4 weeks. By that time, mom grew concerned, and started to really buckle down on my nutrition, going as far as putting extra butter in mac and cheese and watering it down a bit then slipping it through a gap I had between my jaws, (by then they were still "wired shut" with rubber bands holding the brackets close together). I've recovered perfectly from it and feel fine now (: Currently, both of my ankles, knees, elbows, wrists and hands are affected, though there is pain in my neck and hips. I am still taking Orencia, and unfortunately will soon "age out" of the pediatrics hospital I attend and will have to say good bye to the doctor who has recorded my progress since I've been diagnosed. This has been a long and hard journey for me, and I still battle it everyday. My current boyfriend knows better than to wake me out of bed and immediately ask me to do things! Winters are rough, and I fear having to switch medications yet again because Orencia hasn't been working too well lately. I write this, not too depress anyone or for any one to focus too much on all the negative that has come from this disease. I have flare ups from time to time, but then tend to be easily resolved after a few stretches and movement exercises. I'd rather you guys see what I had to say, taking account that this is from the point of view of a patient, not a parent, and that I can say finally, that yeah, it was rough, but it really could have been worse if I didn't have my loving mother by side every step of the way, giving me PT at home and trying her hardest to help. It IS possible to live a full, unlimited life, under the a pretty severe condition with the right medications and help. My mobility is mostly not at all limited (except mornings or longs periods of immobility), I dance, play soccer, jump, exercise, walk EVERYWHERE, and do mostly anything anyone else can do. The only thing I have trouble with is chewing chewy things such as starburst. (the worsttt). But without further writing, though my story is rather long, and it's pretty hard to condense 18 1/2 years of struggle, hardships, and happiness into a paragraph, I only have one thing left to say: Keep hope, stay strong. Mothers: never let your child believe that s/he will be different because of this, they are not. Explain to them that they may need precaution, but that they are no weaker or less capable than any other child. My mother was strong for me when I cried and bellowed as a child, then as I grew older, she started to motivate me that way, I learned first by admiration for her strength then gained my own. Thank you guys for hearing me out. I felt I needed to share this on a blog with a child under very similar conditions I've faced.