Monday, December 26, 2016

Iowa City GI first appointment

Dec 20 we went to Iowa City and saw a new GI.  She was very nice and the 2 hour drive was pretty much all highway.  She seemed concerned and interested, but felt that Pumpkin was too complicated for her.  She will send a referral for her to see a psychologist there, to see a geneticist for ED syndrome, but said there is a year's waiting list for this, and she will gather all Pumpkin's previous records from Alaska and Park Ridge and will give them to her head pediatric GI to review and then they will decide what needs to happen.  Now it has been a week and still no word from any of those referrals or GI docs.  Grump!

Last night Pumpkin was hurting pretty bad and I took her to the ER.  Since it was Christmas evening, the doctor wouldn't call the ultrasound techs because he didn't think her worsening pain was an emergency.  He gave her a couple of Tylenol #3 and finally after 3 hours let us go home.  Why it took 3 hours?  Don't ask me.  Pumpkin said she woke up feeling good but once she got up and moving around her pain returned.  Her weight has dropped further to 114 lbs (11 lbs down now...).  She is getting depressed again.

I wish someone would take an interest in her and figure out how to help her!

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.

Sunday, December 4, 2016

After 3 nights

Three nights have gone by with her new seizure med.  Today she was very tired. Tomorrow we will increase the med to twice a day.  Dose is still very low.  She reported not being able to think clearly enough to do her schoolwork on Friday.  I think she may have had another seizure this morning.  I am not sure but she seemed a little postictal.  It may have just been the brain fog.  I'm not looking forward to her taking the med during the day.  I have told her to just do what she can with her school work.  Already her appetite is gone but not reporting nausea. I'm getting two partial meals in her a day.  This is not too different from her norm...  Have I mentioned that I hate seizure meds?

Thursday, December 1, 2016

Where we are now and how freaked I am.

Sometimes I am happily spinning my numerous plates on various levels and all of them are doing their thing.  Each one represents one of my children's many issues.  For Pumpkin, I have many plates spinning and they are all very close to one another.  If one plate gets a little bit out of balance, the other plates too start to wobble.  If I can't get the one plate spinning well again, the others start slowing down or threaten to crash.  Crashing plates is VERY BAD.

Pumpkin's plates are her Crohn's, her weight, her seizures, her POTS, her depression, her appetite, her high school tolerance.  They are all interconnected.  You get the picture.

In addition to the usual right lower quadrant pain, during the past few weeks Pumpkin's Crohn's has been flaring up in her rectum and anus.  Not nasty ulcers, abscesses and fistulas, but uncomfortable sores, blood when she wipes, painful defocation, small bumps in her anus, and inflammation on her MRI.  She has been losing weight (down 8 lbs) and has lost her appetite.  In order to keep this plate spinning, she has started Canasa suppositories at bedtime which she likens to putting a bullet up her butt backwards.  She did it for a week and then reported that it was just making her sorer.  She didn't do it one night and her right lower abdominal pain, that had been letting up, flared up again, so she thinks maybe it was helping that at least.  I've been waiting at least 4 days to hear from the GI where to go from here.  For now, she'd rather have the b-hole pain than the RLQ pain, so she's continuing the suppositories.

Yesterday I heard from the pediatric neurologist that Pumpkin's video EEG was abnormal.  I knew it would be because we had to do it until she had a seizure.  She found that Pumpkin has slowing in the frontal lobe and her seizures are coming from there.  She thinks we should start a new medicine, Topamax.  This is what freaks me out.  It could give her medicine fog brain, abdominal pain, weight loss, worsen her depression, and make her have a hard time learning.

Right now P is already losing weight and has no appetite and is depressed.  Every anti-seizure med she's ever had has made her suicidal :(.  She told me last night that we'd better wait to start it because she's already pretty depressed, as in wanting to not live.  Her depression med has been keeping things going okay until her EEG.  She didn't have to do school for a week, then not much school over Thanksgiving week.  Now she's doing it but it gets her down. For some reason school usually triggers these fatalistic thoughts.

Last year it was about this same time that we started her on Lamictal.  All hell broke loose for 5 months until I finally realized everything had gone south when we started her new med.  It took another couple months to get off of it.  I REALLY don't want to go back there again.  It would be fine if it helped me keep her seizure plate spinning nicely, but what if, in the process of doing trying to keep the seizure plate spinning, it leads to a bunch more problems, other plates wobbling and falling and crashing and, ultimately, Pumpkin wanting to end it all again?  But what if we don't do it and her seizures get worse and she dies having a seizure or she becomes even more disabled? 

The alternative the pediatric neurologist is looking at is VNS (vagal nerve stimulator).  It is implanted into her chest and wires wrap around her vagal nerve sending impulses that prevent or abort a seizure.  Two things bother me about this.  One is that Pumpkin probably has a connective tissue disorder, Ehler's Danlos type I or III.    Surgeries are not recommended due to healing issues.  The second concern I have about her having a VNS is that Pumpkin has needed a lot of MRIs.  MRIs for her brain, her GI tract, for her joint issues.  I am pretty sure that she wouldn't be able to do more MRIs if she has a VNS.  CT scans are the alternative and they make one get a lot of radiation.  Ugh! Ugh!  Ugh!

I never thought I'd say this, but really the thought of considering cannabis for treating her seizures, poor appetite, etc is looking more and more desirable as an alternative.  I've read that there is some that you can get that doesn't make you high...  Would cannabis help me keep my plates all spinning?