When Doctors Don’t Have Any Answers
It has been a rough few weeks around here.
Understatement. Let me try again –
It has been an overwhelming, scary, frustrating, and stressful few weeks around here.
I have been depressed, angry, desperate, and defeated – all within the span of one afternoon.
My son has been in bed almost exclusively for two months, the result of unexplained joint pain and fatigue that just doesn’t add up.
My husband and I have been doing our collective best to just to try to keep up some sense of normalcy, for both of our sons and for our own hearts.
In the last two weeks we have learned some new things, and in the last two weeks, we have been completely amazed at how much actual medical professionals sometimes don’t know. In the last two weeks, I have slowly but surely come back to this realization –
There is no doctor that will be able to just fix this.
When Doctors Don’t Have The Answer
It is exactly what happened with his autism diagnosis. After getting the diagnosis, no one said, “OK, here is how you do it.” It took months of me trying this and trying that, going to this doctor and going to yet another therapist –
It took months of me trying this and trying that, going to this doctor and going to yet another therapist.
It took months to piece together the puzzle that would give my son some relief and a chance to enjoy his life again.
I guess because this has to do with his body and not his brain, I thought it would be different. I thought there would be an easy answer, a next step, a treatment plan, and a medical professional to take charge and help him.
It seems silly now, almost naive.
Because the truth is, my son’s brain affects his ability to interact socially with the world. And the world includes doctors that might be able to help him.
He is 12 years old. The doctors expect that he should be able to answer their questions about symptoms, pain levels, and lifestyle changes. They expect that his mother would not be the one speaking for him, filling in the blanks, and communicating even the most basic information on his behalf. They expect that he will help them, help him.
And yet, that is just not possible.
So they prescribe a medicine I am not sure he will be able to take, and order blood tests that cause him to physically fight me and the phlebotomist. They examine his joints and diagnose what they can prove based on his body and not his mind.
Mostly, the doctors wait. They figure at some point it will get so bad they will finally have the information they need to medically “fix it”.
It doesn’t seem like enough.
But the truth is, I needed the reminder. I needed to remember what I write here on the blog all the time. I know this child, better than anyone else in the world. I know what is his normal, and what is not. I know what works for him, and what requires more effort than it should. I know when he is happy, even when it’s not obvious to the rest of the world. And I know when he is sick and needs help.
Somehow, in the middle of all of this, I forgot. I forgot that God made me his momma – that He is equipping me to mother him and to care for him. I forgot that I have a job to do, and that I have the strength to do it. I forgot that in my deep love for this child, there is an irrevocable Spirit in me that keeps going, keeps trying, keeps loving.
This reminder has been oh so good.
Once it finally sunk in, I woke up last week ready. Ready to find another doctor that might help. Ready to order the wheelchair we need to get him out of the house more, without aggravating his arthritic joints. Ready to research diet changes and essential oils that might alleviate some of his symptoms. Ready to try every means possible to help him take yucky medicines that will help his pain levels.
Ready to fight for my son.
“And let us not grow weary of doing good, for in due season we will reap, if we do not give up.” Galatians 6:9
Shawna Wingert is a former training and development professional turned education specialist, and has homeschooled her two children for the last ten years.Shawna has written four books about homeschooling unique learners and has been featured in homeschooling discussions on Today.com, The Mighty, Simple Homeschool, My Little Poppies and Raising Lifelong Leaners.
You can find her online here at DifferentByDesignLearning.com.
Just a mere two weeks ago, my 14 year old son was also diagnosed with arthritis. I understand what you are going through. My son, while verbal, cannot always explain himself well. Thus an hour exam took nearly 2 because every time the doctor touched him he was screaming in pain (not arthritic pain, but sensory overload pain). Sending prayers for answers and peace for you and yours.
Love from Ohio 🙂
Thank you so much, Teresa! I really appreciate your sharing about your son and your experiences. Again – it makes such a difference to not feel so isolated and alone.
A sweet momma and doctor posted this on the FB page and I found it to be so encouraging. I wanted her words to be in my response to you, and to any other parent reading this –
“Oh, Shawna! As a doctor let me be the first to tell you that sadly, we do not know everything. We are in fact human and God created each individual so intricately different that despite what some may think, diagnosing and treating each person is somewhat of an art. As a pediatrician, I will also add that treating children is a little like a CSI investigation. Our patients can’t always communicate their exact feelings, symptoms, etc so we must rely on the history given by the caregivers, our physical exam and/or lab tests. I think sometimes after we see some success in our diagnosing skills, we forget that we may be able to treat, but only God can heal. I was humbled early…I became comfortable telling families when I just didn’t have a clue! What I did promise, though, was that I would dig, search, read, and confer with others to help in finding answers to help their child. I have asked families for prayer that God would reveal valuable nuggets of info to me…or better that He would put the people that could help their child in their path! I will pray the same for you and for those that are caring for your son.
As a mommy of a child on the spectrum, I totally understand your frustration…because for my daughter and other children, I am not a doctor, I am their mommy. I feel guilty sometimes because I don’t feel equipped to help her, so I must trust those that we seek to diagnose her. It is a constant reminder of just how little I do know…and, thus, I must truly release my child to God and trust Him completely. I know He has a perfect plan for her and I must have faith in that and that he did in fact equip me to be her mommy. I pray that y’all find answers and trust that God will use these doctors to orchestrate His perfect plan!!”
Hi I am a mom who has a son with special needs. And about 2 years ago I started with debilitating pain in my joints and muscles. I couldn’t move without tears. I’ve been to 5 Drs and haven’t had much success. Reluctantly I did go on a prescription of prednisone which was a huge help but it isn’t something I can stay on . So I tried a bunch of prescription drugs which made me feed horrible mentally and stomach upsets. So I started a lot of diet changes and slowly I am getting better. The first thing I went off of was sugar then gluten then dairy. I try to eat as many raw vegetables and limited low sugar fruits. Also I take a lot of supplements but the 1 supplement that has helped the most is called rheuma-art. It says for 18 and older so not sure if he could use. Curcumin is also helpful but not as much. I am not totally pain free but able to get up and move around much better. Praying u find answers.
Hi! I have been reading your blog for a while because I also have a special needs child and I could relate to many of your situations. I appreciate your writing, how you share and your honesty, thank you! Today I’m writing because I can relate personally to some of the things you’re experiencing and I would like to share with you. When I was a child I had a lot of aches and pains, my parents could never find answers and all of the doctors would say I was tall for my age and write me off as having growing pains. When I turned 12 I could barely walk or close my hands due to swelling and pain. My mom, completely frustrated, upset and out of options took me to a local podiatrist who recognized enough symptoms to order blood work. The blood work came back positive for Juvenile Rheumatoid Arthritis. While I don’t have the added diagnosis of autism I have dealt with JRA and now RA for most of my life. I have acquired much information over the years from regular medical doctors, rheumatologists, functional medicine doctors and nutritionalists. Please know that you are a wonderful mother for advocating for your son, it’s okay to feel whatever you’re feeling and even when you feel lost or frustrated keep reaching out because sometimes the next answer will come from the most unsuspecting place. May God bless you and your family during this difficult time and I pray you find support and encouragement where you need it most. Please contact me if you would like to talk, I would be happy to share with you further.
Oh, precious lady. I don’t know how I stumbled across your blog, quite some time ago, but I keep reading, because your heart. Oh, your heart touches mine, so often. I don’t know if you’d be interested, but there’s a group of precious parents of kids with autism, on facebook, who will be happy to give you suggestions of other things to try/ask about. It’s called RecoveringKids.com, BioMedical Healing. I’ve actually never even looked at their website, only the FB page, but it’s a good group. You also may want to try thepaleomom.com for advice dietary changes for autoimmune conditions, though getting him to eat that way may be next to impossible. Also check out the GAPS diet book. Diet is HUGE for both autism and autoimmune issues. I pray you find answers and healing soon. Hugs to all of you.
I haven’t read much of your blog, so I apologize if this has already been covered. Ehlers-Danlos Syndrome is a genetic condition which has hallmarks of joint pain and fatigue, and there is an overlap of symptoms with ASD. Other symptoms are smooth skin, stretchy skin, organ & artery rupture, flat feet, GI issues, clumsiness, autonomic issues (heart rate, blood pressure, temperature, respiration, digestion), sleep issues, joint dislocations & subluxations, prolapse, TMJ…it just goes on and on. No two people have the exact same symptoms. It can arise spontaneously (you don’t have to have it for your child to have it). Most doctors have never heard of it. Early onset osteoarthritis can also be part of it. I really hope it’s not EDS but if it is, you’re not alone & feel free to email me.
Thank you so much for sharing…I know it has come up, but then was ruled out based on the way his skin presents. I will take a look at more info online and see if we should bring it up again.
I really appreciate your taking the time to help and comment.
Thanks for replying! One of the best sources of information that I really like a lot is the Inspire group for the Ehlers-Danlos National Foundation at http://www.inspire.com, which has a moderator from the EDNF, 16,000+ members, and the discussions are searchable.
I hope you find the answers you’re looking for. 🙂
Comments are closed.