Friday, May 24, 2013

The Ugliness of Uncertainty…going through a rough patch with Justin

I love posting about Justin’s successes!  It helps me stay focused on the positive things in life and reminds me how blessed I am.  Most days I don't have to look far to find something new and amazing that Justin has learned.  But there are certainly times where things are “that bad” that it seems impossible to find a silver lining…so there is your warning, this is not going to be a warm and fuzzy post about Autism successes. 
Things have been rough….really rough…pits-of-despair-unbearable-rough for the past couple of months.  My way of coping with rough times is to talk about it with friends and family.  That's how I get through it.  I have decided to share the details of the past few months with my readers for a couple of reasons.  My first reason is in case any other mom is going through this--we can bear our burdens together and not feel so alone.  Second, because whether you have a child with Autism or not, we all have super low times where we feel hopeless and I may just need to rely on your strength right now to get me through--and hopefully I can return the favor some day.  And lastly, because I know that somehow, this will all work out and I’ll be able to look back at this post and recognize how God guided my family or others to help us make it through this—that will be another strength to rely upon for trials that will come in the future.
Justin started to have a distended belly back in February and kept pushing on his abdomen and making a coughing-type noise.  He would cry out sometimes, but we couldn't tell whether it correlated directly with pushing on his stomach.  We took him to the doctor and they examined him and couldn’t find anything wrong. Daily bathroom habits were normal, so we didn’t know why he was doing this behavior but originally decided to chalk it up to an unusual repetitive behavior.  Then he started to scream and tantrum more and hit his hips and head with his hands.  He is never self-injurious unless he is in pain, and we had only ever seen this head hitting behavior 2 other times in the past 10 years.  So we interpreted his behavior to mean that he was in some type of physical pain.  We took him back to the doctor and started our game of “Let’s just rule stuff out," which is all we can do since Justin can’t tell us if he is hurting.  We had an abdominal series of x-rays and it turned out he had a significant, partial bowel obstruction.  We put him on a weekend diet of 2 doses a day of Miralax and the head hitting and hip hitting stopped and the orneriness decreased.  Phew!!
But after a few days, we hadn’t seen a huge decrease in the orneriness.  We actually noticed it was getting worse, so we took him back to the doctor and found out he had an ear infection.  We blamed all his orneriness on the new ear infection and waited for things to get better.  But he kept hitting his head and increased his screaming fits and drop-to-the-floor tantrums. After 10 days of that, we took him back to the doctor to re-check ears, and did a repeat abdominal x-ray….partial obstruction again—or perhaps it was never fully resolved the first time.  We had to put him on a clear liquid, Miralax only diet for 36 hours.  It was AWFULl!!  He begged for food using his iPad the entire time and would pull on my arms and scream at me and then run to his iPad and push the icon for Nachos.  When I wouldn't give it to him he would go back to his iPad, scream, and spell slowly N-A-C-H-O-s.  We have spent years teaching Justin this method of communication, and now I had to repeatedly tell him no.  It was so sad!!  At the end of 24 hours, he started vomiting and ended up with a fever of 102!!  We took him back to the doctor the next morning and they did an x-ray and said the bowel obstruction had been cleared.  Back to a soft diet and just a daily dose or Miralax for a month to get back on track.  Yay, we were finally going to see relief!!
But we didn’t.  We also took him to the dentist to rule out any problems—no problems there.  We wondered if he had a sinus infection, and he was put on an antibiotic.  For 3 days he was completely back to normal, no behaviors or fits—it was like we had our sweet Justin back!!  And then, even though we had continued the rest of the antibiotic course, the head banging and fits came back.  We had a sedated CT scan of his head and abdomen and all of that came back normal except for some enlarged lymph nodes around the stomach.  A follow up ultrasound proved that they were no longer enlarged and all his abdominal organs were normal.
And just to complicate things, Justin’s doctor had started him on Abilify.  My sweet boy was all of a sudden not only hitting his head, but biting his arm and starting to shove me.  We never see aggression from Justin so this was all so alarming.  The intensity and anger became very worrisome for us.  He also started having multiple urinary accidents during the day and then he started ear flapping.  He would fall asleep after his screaming fits and head banging, so we wondered whether he was actually starting to have temporal lobe seizures.  We took him AGAIN to his doctor who agreed that they sounded like seizures and put him on Topamax.  The next day he got mad and bit ME and then started having bowel movements in his bed.  This is where mom starts falling apart.  After eight weeks of managing screaming and the uncertainty of where this pain is coming from, and watching my child hurt himself--we were now adding un-potty-trained to the list!! And then he wrestled me one morning and tried to pin be against the pantry door….and this is where we officially hit rock bottom.  Nothing like grabbing my other kids and locking them in a room to keep them safe while I try to calm down the unexplained anger of their brother.  These are my greatest fears as a mom, and as much as I am a talker--I reached a point where this was so ugly I didn't want to talk about it at allI just wanted it to stop.  I cried—and cried--and then I cried some more.  And then I did call his therapists and my family and friends and got back into the game and started searching for help again.
I have been through some rough times in my life, but this surely comes close to the top of the list.  I can’t describe how incredibly heartbreaking it is to watch your child hurt themselves and then couple that with the uncertainty of not knowing why…I have just been hanging on with the hope that we can somehow be inspired how to help Justin.  I have had family and friends fasting and praying for us and we are completely relying on that strength to get us through right now.
We have taken him off the Abilify and Topamax, and are treating him with an antibiotic to see if his symptoms subside again.
Have we seen specialists??  Yes, and so far it hasn’t proved to be helpful.  We are open to new specialists if any of my readers have recommendations!!  We will travel if necessary at this point, I just can’t bear to see Justin suffer like this.  Is Autism rough??  Yes!!  Does it mean your life goals will be altered??  Absolutely!!  And I am okay with all that, but watching him in pain and dealing with constant uncertainty of what is causing the pain—is just not right!! 
During all this insanity, I got Justin’s school pictures back from this year (the first time ever I have had a school picture of him—HOORAY!!.)
B - Justin
And this beautiful smile is the whole reason I am fighting—I am not looking for a cure for Autism, I just want Justin to be out of pain and smile like this again.
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  1. You are such a good mom! This post made ME cry. I know it's not the source of the problem but I know Topamax made me so crazy! So I'm glad he's off of that. I will continue to pray for him and the guidance your family needs. Love you!

  2. pryaing so hard and so much for your family! i wish i had something else to give. i can ask around some of my medical family if they know of specialiasts for autism (we live by one of the nations best childrens hospital), please let me know if you would like that.

  3. Oh, Shannon, I am so sorry to hear this. I will pray for your family and for the doctors that they will find the source of his pain soon.

  4. So sorry for all your pain!!! Makes me cry. I was telling Matt about it. Have the doctors thought about doing an MRI? It seems like his symptoms would justify talking to someone in neurology, especially the seizures and loss of bladder/bowel control. We will be praying for Justin and all of you!!

  5. you are an amazeing trying Mom and I know it dosn't feel like that right now, but I know were picked to be Justin's Mom, because heavenly father looked through all the resumes and picked you. You and only you, well and Justin, will be able in time to know why. I think parenthood gives us such an opportunity to get a glimpse of what the atonement is all about by bearing our children's pain. Yes I know we would rather fix than bear it, but you are bearing it as best as you can, and I see it in your face and in your body. I really feel honored to read about your journey with your sweet boy, you make me proud to be in the motherhood. I will pray for your family, mostly for you and your husband, my guess is Justin and Christ are pretty tight. I know being the strong Mamma bear that you are that no rock will go unturned during your quest to relieve your son of his physical pain. I will comment when I can and I will leave in all my creative spelling just so you have at least one reason to smile.

  6. Oh My. Your blog post has made me weep. I am sending you all of the strength I can muster. You have the patience of a saint and I can tell you want to do all you can for your dear, sweet boy. I hope things get better as quickly as they got worse. You deserve your happy boy back- and he deserves the comfort and security of normal, healthy body. Hugs to you and yours!

  7. Oh Shani, How sad for poor Justin and for all of you! I think you are just amazing for how hard you try and how much you do for your sweet family! We are definitely sending prayers your way! I wish I wasn't so far away so I could do more! Love you!!!!!! Christina

  8. I found my way here through looking at your Eliza Jane quilt pattern. I have a 3 1/2 year with Autism (and twin babies) and I hurt so much for you while reading this. I hope so much you were able to pin point exactly what was wrong and be able to get your sweet Justin back. Hugs from a fellow Mama!


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