Feb 11, 2010

Ayla's Story


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


This week at Kelly's Korner is "Show us your ministry week". Although I do not have a ministry, I do have a story to tell. I have also had a few new followers lately, so I would love to take this opportunity to tell "Ayla's Story". Okay, I just found out that this is not until next week at Kelly's Korner.... Leave it to me to get the dates mixed up. Oh well, I will just leave this up and link to it again next week!



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.


Local Newspaper Article


Online "Therapy Times" Article

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!

Have a great weekend!

28 comments:

Beth Priest said...

Poor baby! My husband doesn't have RA but he has another type of arthritis called spondiloarthropothy...I think and that is probably so misspelled. He was diagnosed when he was 14! Nothing too serious and not really worth mentioning compared to the struggles Ayla has. But there is hope bc his started off really bad and his dr was telling him that one day his spine would eventually fuse together. Well it might still but in the past 14 yrs it really hasn't gotten any worse. So anyway that is his arthritis success story!

Taylor @ Jimmy Choos and a Baby Too said...

This breaks my heart again when I read it! I think I told you I have Ra and lupus..maybe not? Anyways please know that sweet Ayla is in my prayers I cannot imagine how hard it is for her and for you as her mom to have to watch her go through the pain!

Beth Priest said...

also! although she seems comfortable now, if you can afford it I would HIGHLY recommend getting her regular massages. This helps your muscles your nerves your immune system the whole nine yards! I am sure you know this too but lots of veggies and limited meat! I am confident in the ONE who has all power over life, death, disease, health, etc! God is good!

Teresa @ Grammy Girlfriend said...

I did not know your story...and was so touched....I am so glad that I stopped by tonight

Lauren said...

Wow! All of you have been through so much! Poor, sweet girl! Best wishes to all of you!

Casey said...

I teared up reading this. Thanks for sharing your story. Ayla is a tough girl! :)

Jamie said...

I am so sorry Ayla and your family has to deal with this. She will be in my prayers!

Maria Lane said...

Lesli! I am so sorry..... your family and her both will be in my prayers.

Shanan said...

Thank you for sharing your story. It always hurts my heart to read or hear about children hurting. I am a firm believer that God HEALS!! You and your family will be in my daily prayers. I am thankful for the "world of blogging" and that I am able to connect with so many mothers. God Bless!!

Stephanie said...
This comment has been removed by the author.
Stephanie said...

Poor Baby! I cannot imagine knowing that your child is hurting and feeling like there is nothing that you can do to help her. Praise the Lord that she is in full remission now. I will pray for continued healing for her.

Sandi said...

How sad we are when our babies hurt. It is crazy how any kind of pain in our children bring us to our knees and pray to Him. God is so amazing. I have learned to give everything to Him. I am so thankful that she is doing better. I will definately keep Ayla in my prayers.

Katie said...

thank you for sharing your story. sweet little ayla looks like SUCH a blessing in your life! i will keep her sweet self in my prayers for SURE!!!

have a fantastic weekend!!!

Christensen's said...

Thanks for sharing your story. I can't image how you and your husband must have felt and still feel as parents. I'm glad she's seems to be doing great and I will keep her and your family in my prayers!

christy rose said...

I loved reading Ayla's story! She has gone through a lot. I am so glad that she is doing well now. I was just tearing up at the end when you were saying that there is only one Person who knows what the future holds and you were going to trust Him. I think she is going to be just fine! You have your trust in the right Person. :)

Kacy said...

:) This one was hard for me! I thanked you before taking the initiative to reach out. I meant it. YOU are a strong woman. I can honestly say, even in the midst of the pain with RA, I would take it tenfold to know my kids were healthy! I can't imagine having to watch my child limp in this pain. Thank you for sharing your angel and providing inspiration and another reason to keep on going...stay in touch.

Brandi said...

OMG...just read your post. Thank you for sharing your story. Poor, sweet baby girl. I can't imagine the pain. I also can't imagine how you felt as a loving mom wanting your baby to not hurt. Glad Ayla is doing better!!!!!

Leslie said...

WOW...what a story!!! I am so glad you shared this!! I had no idea the extent of this disease! Ayla is indeed a very strong little girl!! Bless your heart, I can't imagine all of the frustration those months when you did not know what was going on!! Thank you for your testimony and trust in the Lord...what an encouragement to me!!! Blessings...

And by the way, I love your new blog look!!!:) Beautiful!!

teresa-bug said...

My sorority's philanthropy is The Arthritis Foundation and I have worked with them for 20 years volunteering on the walk committee. I have seen so many children affected by this awful disease. I will think of you and your daughter as I walk in May.

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Teresa @ Grammy Girlfriend said...

such a touching story.....

I love your makeover...and am going to look at her site right now...

thanks for your prayers....we meet with the cardiologist tomorrow at 11

Teresa

nikki said...

I didn't know your full story... it is very touching. Thanks for sharing. I'll keep Ayla in my prayers. God bless.
Nikki x

Masto Mama said...

Hi Lesli, I found your blog through the comment you just left on mine...and I'm so glad--you're blog is awesome! I read the whole story and am so inspired by your perseverance, and your faith. I can imagine how difficult the past few years have been. I'll be praying and I'm following now, so I'll definitely be reading more!

God Bless....

Critty said...

Poor sweet girl. She is beautiful and what a journey for one so young. I am praying that she stays in remission. I am in my 30's and just started dealing with rheumatic issues and it is hard. To know your sweet girl has gone through this breaks my heart.

I am so glad she is in the Hands of the Wonderful Healer.

Thank you for making me more aware of JRA. I learned so much from your post.

anne said...

You're completely wrong. Wait, it's a good thing. :) You mention at the beginning of this post that you don't have a ministry. However, that's not true! Your husband, your kids, your readers - they are all considered part of your ministry. The fact that you just shared this story is a great example of your ministry. So, don't sell yourself short. :)

Him and Her said...

came over from kelly's, thanks for sharing!

Sam said...

bless her heart..
but bless all of you..
she is so gorgeous and obviously given the right parents.. i cannot wait to hear and follow her and your families story grow..
thanks for sharing all of this!!

Aimee Holstine Gillispie said...

a story, when I read it in the paper all I could do was cry,as a mother and prtector of our children we never think it will be our children. My prayers have been with you and your family from the day I read the story.. Hang in there, God is in control and he will take care of her.. Gld Bless you all..