My Pumpkin’s Journey with Crohn’s Disease: Summer2015 Summary

Since our last visit, Pumpkin had scopes and pill cam in the spring, which were normal.  They did not start her on any new meds, but called it IBS, which in my opinion means “I Be Stupid” and diagnosis the doctor, not the patient.  It means they really don’t know why they are still suffering.  They gave her Anaspaz and later another antispasmodic that starts with a d, that isn’t coming to my brain just now.  Both were not really helpful, and both lowered her seizure threshold to the point of breakthrough seizures.  Recently, she had a Lactulose breath test and was diagnosed with SIBO (small bowel bacterial overgrowth) and she is now on Flagyl (metronidazole) for 10 days.  Hopefully that will cure her, or at least fix her GI wise for a long stent.  A few weeks ago, she was hurting so bad that we had to take her to the ER.  She got better during the night, but had another seizure while there, and had to stay for a 24 hour video EEG, which did not catch any more seizure activity.  More on this later.

Pumpkin tried to work this summer, but her health problems and frequent abdominal pain proved to be too much.  She frequently had to lay down, and one of her legs swelled up abnormally..  She had to have the following tests:  MRI of her lumbar spine to rule out spinal shearing.  It was normal.  Two spinal xrays, one said scoliosis, but second one normal.  She saw a neurosurgeon and an orthopedist, which ruled out those conditions.  She had a leg ultrasound, ECG and saw a cardiologist for her swollen leg.  It ended up that she has primary lymphodema in her leg and has to wear compression stockings on her left leg day and night for the rest of her life.  She saw a lymphedema clinic for this, and had a few visits to Peoria to get measured and fit for the stockings.

In August Pumpkin went to Wisconsin for Camp Oasis.  She loved it.  However, she had recently seen her GI, who upped her antispasmodic to four times a day.  She ended up having seizures two nights in a row, and they asked me to come get her.  This made me incredibly sad for her, because she couldn’t even get a break when she was surrounded by doctors and nurses at a camp for kids with Crohn’s.  Hindsight, I think the increased dose of her antispasmodic triggered the seizures.  She continues to have seizures about once a week, but I can usually attribute it to some trigger: sleep deprivation, taking Flagyl, taking an antispasmodic, etc.  She sees a pediatric neurologist at the end of the month to discuss her seizures.

This summer she had problems with her asthma.  She was on prednisone for 12 days to help diagnose it.  She seems to be doing well on Symbicort now and rarely needs her albuterol inhaler any more.  She was finishing up her prednisone last month when she went to the hospital.  The prednisone had made her constipated too, which is really abnormal for her.  She also was pricked 69 times for allergy testing and saw the allergy and asthma doc 3 times over the summer.

Finally, I think, she also saw a counselor several times in August and September.  I don’t think we ever really connected very well with her, and with all her other stuff going on, we just stopped going.

I guess that