Sunday, November 8, 2015

Doing terribly

Here's another update on Pumpkin:
She is still very sick.
Her symptoms are worsening.
She has diarrhea, no appetite and not eating, has back and intestinal pains and has now gotten weak. She is on day 5 or 6 of a heavy period passing clots. She is missing school (Monday and Friday, and I doubt she'll be up to going on Monday ). She has dropped her weight down to 96 lbs.

GI response: they are in disagreement about Remicade so it has not gone forward. They wanted her to try another medicine for SIBO, but it was $1500 and the insurance won't cover it. They decided to try prednisone again, telling us that she'd take 20 mg twice a day for 5 days to see if it would help and then go from there. She is on day two now. Of course we have concerns about this, mainly for 4 reasons: She already has osteoporosis, I think it lowers her seizure threshold, she ended up in the hospital at the end of September while finishing up a course of prednisone, and it alters her taste. She has given stool samples for c diff and fecal calprotectin to our local hospital yesterday morning.

On the seizure front, her new neurologist put her back on Lamictal. She is starting low at 25 mg and titrating up slowly. While I don't think it is causing her GI problems, I am thinking that it may be muddying the water. She does seem to have more abdominal pain, diarrhea and cramping since starting it on Oct. 29, but perhaps the course of the disease would do the same? I am anxious what doubling her dose on Thursday is going to do to her. Her seizures seem to me to be getting longer (2 min vs 30-40 seconds), but still not frequent. She had one or two seizures in October, that I witnessed, and one this month on the second of November which somehow took her from the bed to the floor. She chewed up her tongue pretty good that time. I am going to call the neurologist tomorrow to discuss stopping the Lamictal for a few days to see if that helps.

Pumpkin is emotionally depressed about all of her health problems and feeling so sick all the time. Last evening she was crying. The counselor she saw July-September didn't really work out, and we didn't reschedule since her hospitalization. I think we need to find another, and would especially like someone who works with kids with multiple health problems.

I don't remember Pumpkin being this bad since around the time she was diagnosed with Crohn's. She is skin and bones, weak and miserable, and suffering. Perhaps she needs elemental nutrition again. She seems to think eating makes her worse, so she is living off mostly Gatorade. The two days she did eat, she suffered for it the next day with increased diarrhea and pain.

We did get an appointment to see rheumatology December 8.  We haven't heard anything regarding an immunology consult.

Regarding her leg swelling, it hasn't really swelled for a couple months. Pumpkin doesn't wear the stockings lately, and with the rest going on, I haven't made it an issue.

I think that about covers our last 10 days.

Tuesday, November 3, 2015

So sick, GI doc taking forever!

Pumpkin finished her Flagyl/metronidazole with no improvement.  Two weeks ago on October 20 she had an appt in the Chicago area with her GI.  She was down to 102 or 103 lbs already.  On the way she had to stop 3-4 times to use the toilet.  The next two days she had fevers and severe diarrhea and abdominal pain.  Her joints were terribly inflamed.  She has improved since then to the point that she has gone to school 4 of her 6 school days, but usually comes home and goes right to bed.  She has had blood in her stools, but now she says her diarrhea is like pure mucus.  To me it looked like baby poo. She has had constant diarrhea whether she eats or not, and usually she doesn't eat.  Yesterday her only intake was a cup of rice milk and some toast.  Today she's just had Gatorade (1.5 glasses by 1:15pm.)  Her GI wants to start her on Remicade or Humira, but she's running into some obstacles that she's yet to tell me.  I am waiting for a call back from her. I've called 10-23, 10-27, 10-30 and today...

This morning she had another seizure.  I don't think she'd had another since 10-8.  At least not that I witnessed.  She finally saw a neurologist on 10-29.  She is starting her back on Lamictal.  So far she's taken 25 mg/day.  Today she is getting an MRI of her brain at The Princeton hospital.