Chronic, But Not Terminal – Searching For Answers When Your Child Has A Chronic Condition | East Texas Moms Blog

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I see posts all the time on social media about kids with cancer and I thank God that my child isn’t one of them. 

My heart breaks for those mommas who are daily faced with the reality of a terminal diagnosis.  Even the ones who beat cancer are forever changed in a way that I’m not sure I could handle. In light of this, it’s easy to forget that there are many more families living with a chronic, although not terminal, condition.  We’re one of those families.

I’ll never forget that day sitting in the cold, clean room at Cook’s Children’s Hospital.  We’d come so far over the last few months that it shouldn’t have been a shock to me when he said the words that came next.  But it was.  Abdominal migraines, classic migraines, and cyclic vomiting syndrome.  What does that even mean?  As it turns out, it means that once a year for several months, we’re going to have bouts of nausea, vomiting, and headaches that could easily land us in the hospital.

Last November was the first episode.  My oldest started vomiting and couldn’t stop.  It was like being on a nightmare merry-go-round of throwing up, cleaning up, and resting up for the next cycle that would start, almost to the minute, in one hour.  For thirty hours, he vomited every hour.  He couldn’t keep Pedialyte down.  That’s how bad it was.  I tried everything I knew.  We gave him Zofran and compounded Phenargen. We forced him to drink when he was so scared of being sick that he resisted us.  He saw the doctor twice.  And we still ended up with an IV in his foot because the veins in his arms and hands were collapsed from dehydration.

Several more times over the next few months we would experience the same thing.  We didn’t always end up with IV fluids, but the last and worst episode landed us in the pediatric ward at the local hospital for two days.  Finally, our pediatrician agreed to refer him.  So with too many questions and not enough answers, we went to Fort Worth. 

Sitting in a room staring at the glass-like tile on the immaculate floor, we waited to meet our specialist.  He came in and introduced himself with a friendly but thick African accent.  He smiled a lot.  Within minutes of listening to our story he asked if migraines ran in our family.  My heart threatened to fall out of my chest.  Yes, yes they do.  Please tell me I didn’t pass that on. 

But it didn’t stop there. 

Several tests later, including extensive allergen panels, we left with a diagnosis of cyclic vomiting syndrome triggered by abdominal migraines.  It’s made worse by anxiety, which he also suffers from.  It’s like his brain is conspiring against his body.

We left with more answers and more questions.  No new medications.  Continue what we were already doing and wait.  Eventually he would probably grow out of it.

Eventually, probably?

The good news is that he stopped his cycle, and for the next eight months things were great.  He put on weight.  He wasn’t sick again, even when he had the occasional bad headache from weather changes.  Apparently he has the same triggers I do. We were hopeful that maybe we had a misdiagnosis.  And then, November came again, and the cycle started over.  So far we’ve managed to keep it under control, and we’ve limited it to four or five times instead of twenty or thirty.  We’re almost through his bad season and it’s been a lot better than last year, and I’m thankful for that.

So back to the problem of chronic. 

I see these posts that I mentioned earlier, and my heart wrenches in my chest.  And I feel guilty when I talk about our experiences and our struggles, because my child isn’t dying or undergoing some horrific treatment so that he can live.  The reality is that many of us have children with chronic issues, and many of us feel guilty when we talk about them. 

To the moms of chronic children, I see you. 

I feel your pain. 

I know that it’s very easy to invalidate your own struggle before giving anyone else the chance to do so.

 Know that it’s okay to ask for help.  It’s okay to ask for prayer.  It’s okay to grieve.  And it’s more than okay to vent about things.  Don’t feel that just because your child isn’t severely ill that you don’t get to suffer and mourn for your child.  Keep on trekking the path and finding out what works best for your child, and know that there is no fix-all solution.  It may not get easier, but it will get more routine.  Hang in there, Momma.

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Angela was born and raised in Nacogdoches, Texas before attending college at East Texas Baptist University in Marshall, Texas. After marriage and graduation, she landed in Lufkin, Texas where she lives with her husband Mark, two beautiful children, one dog, and one cat. Currently Angela works full-time as a mortgage underwriter and quality control specialist in addition to working part-time as a ropes course facilitator. She also recently obtained a master’s degree in management from Texas A&M Commerce. Her hobbies include hiking, camping, and being on the water. She likes to read science-fiction and fantasy. She is an advocate for mental health awareness and treatment. Her long-term goal is to open her own summer camp, which she looks forward to being able to do with her family. You can find out more about Angela here at her blog: https://memoryandlane.wordpress.com/.