Wednesday, December 14, 2016

Wandering in the wilderness waiting for God to show us the way out of this healthcare nightmare

Pumpkin took her new seizure med (Topiramate) for a week.  By then she was completely nonfunctional, even on the lowest dose.  She couldn't eat, couldn't sleep, couldn't think well enough to do any school and was slipping into depression again.  I called the neurologist on the 7th, but didn't get a call back until the 12th.  I went ahead and made the executive decision to stop it.  December 12 she started feeling a little better having stopped the seizure medicine, but still having pain after meals and still having anorectal symptoms. Weight has dropped back down to 116 (down 9 lbs now).

She has had at least one seizure since stopping the seizure med.  Last one was December 13 - nocturnal/early am.  She did have one since her EEG that was while she was awake doing her homework :(.  Finally yesterday, our current neurologist's nurse called and said the doctor recommended that she try new medicine since she wasn't tolerating the Topamax and recommended two meds. One of them was the med she just failed last April landing her in the hospital with suicidal ideation for 9 days. I don't think she even looked at her chart or remembered who she was dealing with. I'm sure I'm not going to randomly put her on another med after viciously failing 4 already.  Last Thursday I was so fed up, I got Pumpkin in with her PCP to let him know what was going on, and he is referring her to a new neurologist and gastroenterologist.

December 10th was the 4 year anniversary of the first pediatric GI visit she had before being diagnosed with Crohn's. It was the first time any doctor suggested Crohn's might be the problem. It was the first time we weren't blown off for her symptoms. She was 13 years old, 5'1" tall and 68 lbs. She could barely walk due to weakness and abdominal pain. I am so glad for the progress we've made but can't help wondering how much better she'd be if we had started a biologic from the start.

She started feeling a little better having stopped the seizure medicine, but was still having pain after meals and still having anorectal symptoms. Weight has dropped back down to 116 (down 9 lbs now).

12-12-16 she woke me up at 3:30 am with the "worst abdominal pain in 4 years". Thankfully it was relieved with a BM and Digestzen. She took a tizanadine and went back to bed with a heating pad.  She had been suffering for a while trying to get it to resolve without getting me up.  On that day they called from Dr Garcia's office and said that her Prometheus test was too high (6TGN?) running 441, and this put her at risk for low WBC count.  The WBC's were depressed and the count was 3.3 and they want her to lower her 6MP to previous dose - 50 alternating with 75 every other day - down from 75 mg daily. For the rectal pain, they want her to continue the melamine enemas and find a colorectal surgeon in our area who does rectal ultrasounds.  No mention of switching to Humira.  When she was on this lower dose before, she was having a lot of joint pain.  The higher dose took care of the joint pains.  I hope they don't come back.  I don't have much faith that things are going to get better when she has had one problem after another on 6MP over the past two years and has never been well enough to lead a normal life.  Also Pumpkin said she had a little rectal bleeding yesterday even without a BM when she wiped.  We did a pelvic MRI just before Thanksgiving. It showed "mild inflammation in the rectal area". I don't know why she isn't just scoping, except that Pumpkin has this new hole on her anus now since our last visit and maybe is checking for fistula or abscesses? What gets me is they want us to find our own surgeon to do it. Like I know even where to start looking.

We got appointments (on Monday) to get second opinions (peds neuro and GI) at University of Iowa in Iowa City in the third week of January on the same day. Dr Pratt, Pumpkins PCP made the referrals when she saw him last week. Today they called back and said they had an opening for 12-20-16 for GI, so I took it. They won't be on the same day, but we can at least get this ball rolling and I won't have to figure out on my own where to have this rectal ultrasound. I am hoping the two specialists - GI and Neuro - will be willing to work together to find a plan that doesn't exacerbate the other problem.

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