My Child has Ankylosing Spondylitis

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ankylosing spondylitis

My Child has Ankylosing Spondylitis –

On October 16th, 1996 I gave birth to my beautiful baby girl. I only held her for a moment when they grabbed her out of my arms and rushed her to the NICU. They told me she had a 50%  chance of living ( she had swallowed amniotic fluid and meconium). I'll admit my flesh took over and they say they could hear me crying all the way down the hall. I remember at that time, my grandmother  rushed in to my room along with friends and family. She came over to the bed and put her arms around me and said lets pray. I felt an overwhelming peace come over me. I knew know matter what, God's hand was in it and there was nothing I could do. That sense of peace and faith is what helped me get through till we were able to bring her home a week later.

She had  a pretty normal life. She was such a good baby and had the biggest brown eyes you have ever seen. She never really had any medical problems until later in life when she got a chronic bronchial asthma. As she got into her pre-teen years she did complain of leg cramps but of course to me that was normal because I had cramps so bad that I would cry and I thought they were just growing pains. In the past year the pain seemed to worsen and within the last 6 months the pain had moved to her ankles, hips and back. The hips being the worse. We started getting calls from school with her hips hurting so bad she was crying and asking to be picked up from school. Advil would not help. Knowing that my husband has Anklyosing Spondylitis, we decided to take her to our family doctor for a checkup. When they could not find anything they made an appointment with a pediatric rhuemetologist. ( see my first post I'm Worn ) There were issues getting us scheduled at the pediatric rhuemetologist so we took her along with us to one of Daniel's dr. appointments just to ask his rhuemetologist some questions. Praise God she agreed to take her on as a patient and take a look at her even though she was not accepting new patients.

On Friday March 8th I was packing for a work trip to SXSW and we were sitting in the Sonic Drive-In when we got this text. Taylor's blood test came back positive for HBLA- 27 gene and all signs point to AS. Please call me at 4:00 today to discuss. I literally broke down in an hysterical sob. (Daniel and his dr. have a very close relationship and he even has her personal cell phone number. This is why we love her so much.)  My flight was to leave at 6:00 that evening so on the way to the airport we pulled over to the side of the road and called. She again said even though x-rays are clear, she has tested positive for the gene and all of her symptoms point to AS. They are also scheduling her for an MRI on the 19th. I can't even explain what it is like to hear something like this about your child right before you jump on a plane to fly out for the weekend. I don't think I had enough time to even process it or let it sink in? I just knew I had to be on 100% for work. We decided not to tell my daughter till we got back from my trip. I can't tell you how hard it was to not tell friends or family but we had fear that something would slip and she would find out on Facebook before I had the chance to tell her myself.

Sandy Jenney

I arrived in SXSW and let me tell you even though I was completely hysterical, hanging out with friends I haven't seen in a long time who are also my co-workers seemed to really take my mind off everything.  I guess you could say it was a good distraction. Everyone was so sweet and offered whatever support they could. I was even able to connect with an old friend that I hadn't talked to in a while and come to find out she had been going through some tough times as well. It was good to talk to each other about our experiences. I did pretty well until the very last night when I knew I would be flying home the next day to break the news. My  flight was at 6am and I had only had about 4 hours of sleep. I tried to sleep on the plane but it was so quiet that all I could think about was her. I laid my head against the window and covered my eyes pretending to sleep so that the passengers next to me couldn't see me cry. Thank goodness it was a short flight.

I arrived in Houston at around 8:00 or so to find that my flight was delayed for 3 hours. Oh boy more time for me to be alone thinking about what I am going to say or what I am going to do. I mean I know that God is in control but your flesh can make you think and do some crazy things. Questions ran through my mind like, will she be able to finish school, will she be able to hold a job, will she find a good husband who will love her for who she is and take care of her even on those hard days. Wait… what is that I hear over the loud speaker? Ahhhhh my flight has been cancelled and the next available flight out is at 7:06pm tonight. I felt really bad for the lady at the ticket counter. I immediately burst into tears, and she just kept apologizing to me and I told her it's OK I just have some stuff going on and just really wanted to get home. A few passengers sat and starred at me as I called my husband on the phone sobbing to tell him what was going on (poor guy). I just didn't want to be alone right now. I did end up getting on a 2:41 flight.

I remembered the conversation my friend and I were having the other night on my trip about blogging about our personal experiences and how not only does this help me emotionally to talk about it but that we both believed that many people out there are going through struggles but just aren't talking about it. So that's when I decided to pull out my computer and write this post.

P.S. Please note we are not interested in different diets etc, or different cure's or juices people are selling as we having already done a lot of research so please remember when commenting.Thanks 🙂

Taylor Garcia

So now what? How do you tell your child she is going to be sick for the rest of her life?  Well I know one thing, I just need to be honest and tell her the truth. Let her know she is going to be OK and that she has a lot of support behind her. The talk went better than expected. Today she called me from school around 9:00 saying she was in too much pain. I went to pick her up and talked with the counselor and so far the school has been great. As soon as she stepped into the house she ran to the couch and started sobbing. All I could do was just put my arms around her and hold her. I said honey are you crying from the pain or because of the situation? She said the pain. It is so hard to see your child in that much pain. I am hoping the doctor will be able to figure out soon what can be done. God says he won't give us more than we can handle so I hang on to that for hope. A friend of mine texted this to me this week so this is what I am trying to reflect on.

God wants you to remember

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  1. Bless you, Melissa, and your family. I will be keeping you all close in prayers. I know a little of what they go through. I have Spondylolisthesis and had to have a spinal fusion almost 3 years ago, after living with the condition for 24 years. I still have a lot of issues- though my fusion went perfectly. There are a lot of nerve issues as well as some muscular issues due to my small bones and the hard ware needed (which was removed after 5 months). I understand the difficulty of keeping or making new friends. I never know, really from one moment to the next if I will feel up to an engagement. I cannot work any longer, drive because although I still have a license, I have so many muscle spasms we feel it unsafe unless it’s an emergency. I cannot garden any more unless it’s raised containers. My whole house had to be changed around for me to be able to reach things and I still cannot do much of the household chores I once took for granted. Without my precious husband, who married a whole woman who could work and be a helpmate to him, I would not even be able to take a shower or get up and down the steps to our house.

    ALL of this said to show you that you are NOT alone, others here know what you deal with on a daily, sometimes moment by moment, basis. My husband and minor children are my caretakers and I cherish their sacrifices. You, they and those like you who lovingly take care of their family members as you do, are a Blessing in this world and I want you to know you are appreciated, and that you and your family will be kept in my prayers.

    1. Kathy, thank you for speaking out about your condition. I pray God heals you and that you can find some comfort from the pain. I am so glad that you have a good family to support you!

  2. There are no words to express to a Mother when she has to see a child in pain and know there is nothing that can be done. May you feels God’s comforting hand upon you and may your precious baby have all her dreams come true. Thankful you have a great support and outlet through the blog, family and friends. Stay strong, stay faithful great things to come!

  3. Thanks for sharng your story. I have thought about you a lot since you last post. God will give you strength when the flesh and mind is weak. Continue to share with us. We have big shoulder for you to lean on a open ear to hear your and understand your pain.
    I’ll be praying for you and your family.

  4. “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” Psalms 23:4
    Prayers for all of you during this time and that Taylor and Daniel will have no pain.

  5. I’m really not sure what made me click on the link because I had just about lost faith in Him (I’ve been dealing with Post Partum Depression), but I wanna say thank you because your post led me to The Ten Things God Wants You To Remember, I now have a base to build back the faith I had lost.

    I pray that you, your daughter and your family are led by Him to find ways to ease her pain. I know what it’s like to have a child in pain and the feeling of helplessness.

    1. TY TY TY! Amanda for sharing. I just cried when I read your reply. I am so glad I could. Don’t lose your faith in God. He is there even when you can’t see him. I believe everything happens for a reason. I’m here if you ever need to talk 🙂

  6. I am so sorry to hear of the diagnosis… and how she doesnt feel well or hurts. But she has some great advocates in her folks and experience.

    I hope they find a way to control the pain soon!

  7. Praying for your family and I agree that blogging about our personal lives is therapy and can be an answered pray to someone reading. Thank you for sharing. Also, glad that God will never leave us!

  8. I just wanted to let you know that your daughter and your family will be in my prayers. I hope the doctors can find something to help her. It breaks my heart to hear that she is in pain. (((hugs)))

  9. Oh Melissa, I am so desperately sorry. What a beautiful girl she is and so lucky to have you as a mom and a family who understands the illness and are the best prepared to support her.

    I’m praying for you. If there’s anything I can ever do to help, please let me know.

  10. Oh, this is breaking my heart, Melissa! I am so, so, so sorry that you are going through all of this. Please let me know what I can do to help. I am sending all my prayers and good thoughts to your family right now. Love you!

  11. You have a beautiful daughter and she is so blessed to have a mom who shows her how to stay strong & keep her faith in the Lord! Will be praying for your family!

  12. Big hugs and prayers for your daughter and your family. I don’t think any parent wants to break news like that to a child (or hear it for that matter) but honesty is always best. In and out of Children’s Hospital and with a chronic issue of our own it can be hard for parents to feel helpless. Sending love and prayers you way.

  13. so sorry hun for all you are going through, so sorry for your baby having to deal with all this crappy pain!

    i have been suffering from Severe R.A, and Fibro, I’m 37 and the Doc said my xrays show the bones of a 90 year old woman. The Pain has me unable to sit, walk, and yet I have to because a couple of weeks ago, husb and I separated; now I’m alone with 4 little ones. I try to be as active as I can, but the pain is so unbearable. I feel for your Daughter, for you, for your husband. I know seeing your kids in pain is one of the worst feelings in the world. The Doc said she wants more thorough blood tests to see if there is anything else that is making this pain like this, and all I can think about is that I hope that none of the kids ever feel the pain i feel.
    I know we don’t speak, have met you a couple of times through Cbias, but know that I follow always 😉 hugs!!!!!!!!!!

    1. Lily, oh my goodness I can’t imagine what you must be going through. I can’t imagine having to go through something like that alone. If you need to talk I am here. I am not sure what I can do but if there is something, let me know. I appreciate you taking the time to comment when you are struggling as well.

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