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?

Tuesday, November 29, 2016

MRI, video EEG

This has been a tough week.  Pumpkin had an MRI of her pelvis on Monday.  It went fine, but took a lot of delays for correct orders and preauthorizations.  I am so glad that she has our current health insurance.

I got the results back and heard that she has inflammation in her rectal area.  They are starting her on Canasa suppositories.  The pharmacy didn't have them and had to order them, so started them Monday, November 21.  She was having diarrhea, sores on her bottom and felt a lump inside her.  She is also having right lower quadrant abdominal pain (this is chronic, but was worse).  She feels like the new medicine hurts now to put in, and doesn't really feel like it has helped.  I'm waiting to hear back from the GI about where to go from here.  We're also waiting to hear back about blood work she had last Monday, the 21st, for a mercaptopurine panel, liver enzymes and a fecal calprotectin.

I think it was a good thing that she didn't have to start those suppositories right away because she got her period the week we were waiting for the reorder.  Her periods start major pain problems and flare up her Crohn's.  She would not eat for a full 24 hours because she was hurting so bad and didn't want to aggravate it more.  She has lost weight with all of this and is down to 117 lbs again.  :(

Another good reason to not have to start the new suppository yet is that that week Pumpkin had to do another video EEG.  It was put on Tuesday morning the 15th.  She may have had one event on Friday night the 18th, and finally had a for sure seizure on Sunday morning and was able to take it off and have it off for Thanksgiving.  If she didn't have one, she would have had to put it back on all new on the 21st and leave it on another week!  We had a lot of people praying that she would have a seizure so she could take it off!  The tricky thing about Pumpkin's seizures is that she has them at night, and so it isn't always clear whether or how much of them she is having.

This is her with her EEG set up.  It was really itchy and uncomfortable.
She is a ham and didn't let me take her picture but took these selfies herself.

Monday, October 31, 2016

Nasty food allergies: Pumpkin, Chocolate, Broccoli and Almonds

After my youngest daughter was diagnosed with a corn allergy, we finally started making strides towards health improvements for her. This got me wondering about Pumpkin and what might have been missed. I asked her allergy/asthma doctor about whether she had been tested for corn too. She hadn't. We set her up in June for further food allergy testing, but had to wait until October for the appointment. We had the appointment this last week, and discovered some shocking results. Unlike her sister, she is not allergic to corn.  No, she is allergic to one of the mainstays of her diet:  potatoes! Not only that, she is also allergic to broccoli, chocolate and almonds. We've begun the process of eliminating these from her diet, which isn't easy when you are already gluten intolerant, and many of the GF foods you enjoy have potato or almond flour as a substitute. From what I read, potato flour can also be found in cheese, modified corn starch, MSG, maltodextrin, yeast and other nonpotato type of words. So far, we have already seen improvement in her belly cramping, and I'm sure her diet isn't completely clean yet. Interestingly, the one night last week that she had the most abdominal pain was after she drank an Ensure before bed. Of course dark chocolate is the only kind she likes... Can you say homemade, potato free, corn free, gluten free, almond and chocolate free Thanksgiving? Hoo boy!

As I mentioned in a previous post, in October Pumpkin was also diagnosed with postural tachycardia. She was falling down and passing out sometimes. It has improved with increased fluid intake and intentional daily exercise. POTS (postural orthostatic tachycardia syndrome) is common in hypermobility syndrome. I think I will look further into MCAS in light of Pumpkin's recently discovered food allergies. I think MCAS tends to pop up in these patients too. Just wanting to cover all the bases.

This past month or so, Pumpkin has been having lots of abdominal cramping, anal sores, intermittent diarrhea, 5 lb weight loss and more joint pains along with the rest of her health problems. Her blood work, as usual, showed no elevations in crp or sed rate. CBC and CMP was also normal. She'll see GI next week. Her rheumatologist is having her increase her 6MP to see if it will help. Usually GI isn't very helpful, but we'll see what she has to say.

Wednesday, October 19, 2016

Orthostatic tachycardia

In the summer Pumpkin started experiencing dizziness.  We noticed it when she had been on Lexapro for a few weeks for her depression.  We played around with the dosing, and settled on a smaller dose in the evenings.  In August and September she had multiple episodes of standing up and falling down as she started walking and passing out during the night.  I thought the night episodes were seizures, but they were infrequent and as I never saw them, I wasn't sure.  On the 30th of September, she went to the neurologist (their time to get an appointment is long), the doctor found that she was having a very fast heart rate increase when she went from lying to sitting or standing.  The heart rate doubled from 55 to 110 from lying to sitting.  She got into a pediatric cardiologist the next week, and he seemed to think it was normal "vasovagal syncope" and didn't even address the tachycardia.  He recommended that she drink more. I talked with the neurologist's office about it, and she referred her to a different cardiologist that she was more familiar with.  He, at least, took time to listen to us.  He agreed that she was having postural tachycardia and recommended that she drink more and try to exercise 30 minutes a day.  He said there are medications to help with it, but that they have side effects in addition to their positive effects.  Pumpkin agreed to give the lifestyle changes a try first for a few months.

She is having consistent low back pain, RLQ abdominal pain and some diarrhea.  She will see rheumatology, allergy/asthma doc and gastroenterology in the next month.

She got a super cute haircut.

Pumpkin is in the top left corner with her tongue sticking out.  She is at a friend's birthday party.

Monday, May 16, 2016

Rough year, but almost done with Sophomore year

Poor Pumpkin has had a really rotten year. 

Seizures:  Starting in August at camp last summer she had two seizures two nights in a row.  She was sent home from Camp Oasis because the seizures were too much for them to handle as a staff of GI nurses and doctors.  At the end of the month she had an EEG, but it was normal.  The next week she was having severe abdominal pain and so we took her to the emergency room.  They kept her up all night giving her pain meds and doing testing.  In the morning when the doctor came in to see her, he woke her up.  As soon as he left, she had another seizure.  While she was in the hospital she was kept on a video EEG for 24 hours, but she didn't have any more.  She ended up having about 5 seizures between August and October, so we got in with a pediatric neurologist and she started her back on Lamictal.  This has been a rotten thing for her because it effected her adversely with behavioral and emotional side effects.  It was unclear what was causing these things because she was also on prednisone for a couple months.  After getting off the prednisone, it was more clear that it was this medication, so the doctor cut her dose in half.  That seemed to make the depression worse and ultimately she ended up in the hospital in April for severe depression.  Currently we're weaning her off of that medicine completely, but the process is slow and the withdrawal has its own problems.  She had another video EEG, this time for 4 days, in April while on the half dose, but, again, that showed nothing.

Abdominal pain:  Between September and November she was tested and found to have small bowel bacterial overgrowth and was treated with Flagyl in October.  After that treatment, her abdominal pain seemed to be as bad as ever.  In November we got a c.diff and ended up going to the hospital and being put on prednisone.  The c.diff came up positive and she was treated with a stronger course of Flagyl.  At the end of January the prednisone was weaned.  She finally has had some reprieve from the abdominal pain and no longer has diarrhea since the end of January.  She is also keeping her 25 lbs that she gained on prednisone, for which we are happy.

In December she had her third hospitalization of the four since September.  This was due to a blood clot in her arm.  I'm pretty sure that I already posted about that.

For her depression, she was first tried on Effexor because that seems to work for her sister, but it was not a good match for her.  She got abdominal pain and dizziness.  They switched her to a low dose fluoxetine, which seems better, but she has no appetite most of the time.  She seems to keep her weight, though, so we're just leaving it as is.  I'm hoping that we can get her off of it once the Lamictal is completely weaned, but I do think she had some underlying depression from all her medical problems, and maybe it is best to leave her on it for awhile until she feels better emotionally and can find a remission in the area of depression too.  These days she sleeps a lot, has insomnia at night, and is twitchy during the day - I attribute this to the withdrawal, but so often it is hard to tell. 

I realized during her hospitalization for depression, that a big trigger to her symptoms and suicidality was school frustrations.  I pulled her out of two of her classes that she was behind in, and she has done better in her remaining classes.  The lamictal makes learning harder for her and makes writing overwhelming.  She is being evaluated right now by the special education department to see if they can find anything they can recommend to make learning easier for her and to support her in her challenges for next year.  Unfortunately, she has had to go home from school early on Friday and today due to other health related problems, so I'm hoping that she is not missing her connections with her learning specialists coming in to talk with her and evaluate her...

Her lymphedema is still mild, but not resolved.  With her weight gain, her compression stockings have gotten too small.  The lymphedema clinic is going to wrap her legs and do massage for the next 3-4 weeks, then remeasure for the stockings.  I also hope to get her in the pool for her lymphedema and for her hypermobility syndrome.

She has had joint pains with activity more frequently, and I think it is overall because she is losing muscle tone.  She seems to partially dislocate more easily.  One day it was her foot after running around with her brother.  Another day it was her elbow when she bumped it at school.  It hurt for a day, then it popped and felt better.  I have done a lot of research regarding Ehlers-Danlos syndrome and I am convinced that this is the reason she has all of her health problems, except perhaps the lymphedema.  I'm not sure of the relationship there.  In my research, however, I have found a connection to her abdominal complaints, seizures, depression, osteoporosis, thrombophlebitis, hypermobility (of course), joint pains.  She is on a waiting list to see the geneticist in the next 6-12 months.

Thursday, January 28, 2016

January News

Pumpkin is finally off of prednisone. She has been doing very well GI wise with pain mostly being during her monthly flow.  She is having mostly soft stools.  She has been maintaining her weight at 116 lbs.  We're very pleased with this.

This week she got that bad sore throat with fevers up to 101.  She now has a painful face and lots of snot to go with it.  Of course we are doing our best to stay away from antibiotics.  She did get a strep screen that was negative.  She hasn't been able to eat for a couple days, but was taking Ensure and milkshakes.  Last night the sore throat let up and she ate a couple bowls of chili and a bunch of other stuff!  I'm hoping that she doesn't lose too much weight over it.

We are still waiting to get her referral from the geneticist in Park Ridge to see about her hypermobility syndrome.  Twice they told me that it was in the process.  It is so frustrating that it isn't happening.