Saturday, November 18, 2017

EDS, Gabapentin, Not Eating

Keppra didn't last too long until she went into a dark place.  Next was trileptal, I think, then ultimately we went on gabapentin.  I was pleased because she really didn't have too bad of side effects.  Her stomach wasn't getting worse.  Her depression was stable...  Problem was, she never got better seizure-wise :(.  When we got up to 1200 mg twice a day, she started acting high or drunk and her pupils were always dilated.  She was very impulsive and tended to hurt her little brother who she had always had a good relationship with before.  She would wrestle him and hurt him and then resent that she got in trouble for it.  Finally when her seizures were coming in clusters after several months, I asked for a change.  More on this later in this post.

In May she was diagnosed with Ehlers Danlos Syndrome.  I already knew she had it.

We have been seeing a gynecological pain specialist who put her on norethindrone and had her do pelvic floor physical therapy and myofascial release.  These things did help!  Unfortunately the summer came to an end and she decided to give public high school a try.  This meant not seeing doctors all the time or doing PT.

School went really well for the first 4 weeks, then the school decided she didn't need the helps they were giving her.  Everything went downhill from there.  She was overwhelmed in that setting, having a lot of pain and fatigue and feeling like she was not getting the support she needed.  Finally it came to a head and she said she wasn't going back :(.  She ended up staying in choir, textiles and foods, which she enjoyed and is now trying to decide between homeschooling the rest of her senior year or trying to take the GED.  She went to another neuropsychologist and got tested again.  These results were hard to swallow.  I'm not sure what they really mean, but they seem to not be good.

Pumpkin has started weaning off the gabapentin and switching to phenytoin October 24.  At the same time, she started not being able to eat enough and having more stomach pains.  Ultimately she ended up in the hospital this week due to losing too much weight and not figuring things out as an outpatient.  She had an MRE in the hospital which showed some swelling around the rectum. The GI team is taking her off her 6MP to see what happens.  They also put her on an NG tube to help get some nutrition.  Right now we are trying to get her up to 90 mL/hr for 14 hours a day.  She's been on it constantly though for over 24 hours except when we ran out of formula for about an hour.  They want us to be able to insert an NG tube ourselves as a goal to go home too.

Saturday, January 28, 2017

Good week, started Keppra

Pumpkin had a fairly good week.  She was able to get back into doing school and her belly improved and her throat was better.  She had a full on seizure one day only.  On Wednesday we went to Iowa City again and she saw the psychologist again.  They are working on her sleep issues which is challenging her to stay out of her bed all day.  She spends more time with the family, but still spends time in her room on the floor beside her bed. 

On Wednesday she saw a new peds neurologist which was also at U of I.  He listened well and I thought he heard our story well.  He recommended that she go back to the first medication she ever tried, that she failed when she was 4 due to horrible side effects.  He said that this med rarely has these effects in kids older than 12.  So far she has done well on the lowest dose and is actually eating more!  This morning she ate a full breakfast, which I haven't seen happen for years!  She usually doesn't want to eat until after noon.  Moods seem pretty good too.

We have gotten the results of the scopes and biopsies.  They were pretty normal except for some esophageal inflammation.  We are still waiting on the results of the video endoscopy.  If this is also normal, I will push her PCP to pursue endometriosis diagnosis and treatment.

Friday, January 20, 2017

Scopes and Pill Cam

Pumpkin was pretty miserable for about a week starting last week to the point where for a couple of days it hurt to even drink water.  On Thursday and Friday of last week, I called Iowa City and asked what their plan was because I still had not heard from them.  They called back and told us they wanted to do scopes and video endoscopy the following Thursday (yesterday).

The cleanout they recommend is four days of Miralax 3 times a day.  Since she hadn't been eating and barely drinking, I reduced the dose to 8 oz instead of the 13 that they recommended on the first three days, then gave her a fourth dose on the final day for good measure, and she was pooping clear liquids. Her weight had dropped to 109.6.

Our journey to the hospital yesterday was a near disaster in that someone had wrecked in front of us (in the dark) and their lights were out and they were across both lanes of the interstate.  I barely made it around them taking the shoulder at 65 miles an hour, but were able to continue on without incident. 

This was our first experience doing any testing at U of I Children's Hospital.  It was a good experience in that everyone was nice and respectable to us.

When we arrived she was weighed in at 50 kg even (about110 lbs, down 10-12 lbs) and 176 cm.  It took 3 sticks to get Pumpkin's IV in with her dehydrated veins.  They gave her lots of fluid to help rehydrate her, since I had mentioned to the GI nurse that she was dry the Friday before.  She hates IVs.  They let her do the numbing gel beforehand, but it still hurt. 

For some reason Pumpkin's scopes that were supposed to take 45 min took more like an hour and 30-45 minutes.  They said they had trouble getting into her terminal ileum and never were able to make the turn, although both Dr E and Dr N tried.  They said sometimes that happens, and it couldn't be helped.  They said Dr Ebach is very experienced and tried all the tricks she knew to do.

When Pumpkin came out of scopes, she was very doped.  More than usual.  Also her throat was so sore she couldn't swallow water without severe pain.  We had to get some chloraseptic lozenges, which she used and still didn't want to drink, but fortunately they had hydrated her well with IVs during the procedure.  When I looked in her throat when she was more awake, it was coated with clotted blood behind her uvula and over the back of her throat.

We got out of postop recovery around 12 and had an appointment in psychology at 1.  Again, it was a very positive experience with a young female doctor who listened well.  She said that she specializes in children with chronic health conditions and chronic pain and thinks she can help.  Being young and female, Pumpkin tends to connect with these types of doctors, so I am hopeful that this will be a good thing.  Pumpkin was very tired from anesthesia and was still experiencing throat pain

That appointment took us until 2:30 pm and Pumpkin still had to wait until 4:30 until she would be finished with her capsule readings.  The camera makes its way through her small intestine taking pictures where the scopes can't go.  It is really quite remarkable.  Pumpkin and I asked for a recommendation about a good place to hang out, and was sent to the 8th floor to a patient library.  It was wonderfully stocked with electronic games, computers and lots of good book selections.  It also had a few cushioned chairs.  Outside of it was a small coffee place with snacks (for me - Pumpkin still hurt to much to eat or drink).  It was a great place to hangout.  She napped and played on her laptop she brought.  I got a cappuccino mocha and a small scotcharoo.  The time went quickly. 

At 4:00 the library closed so we made our way down to the specialty clinic once more.  Pumpkin was totally exhausted and worn out.  At 4:30 I checked back in and they took us to a room and called Dr Ebach.  When Dr E checked on the capsule, it still appeared to be in the small intestine, so she went and saw a patient.  At 5:00 the same thing.  At 5:38, she said that we had run out of time and that we'd have to take the equipment off because they were closing.  Sadly, I am afraid that the capsule did not make it to the ileocecal area where most of Pumpkin's pain seems to be stemming from, and to make matters worse, neither were they able to get into that area with the scope.

On the way home, believe it or not, we again came upon an accident that had just happened.  I saw a semi jack-knifed in the median ditch.  What I didn't see was a small car sitting in the left lane or a bunch of gravel or debris on the road.  I fortunately was in the right lane to get away from the truck, and missed the car sitting in the dark without its lights on, but did not miss driving over what sounded like gravel on the road.  Pumpkin was completely worn out and didn't stir in spite of my discussing the situation out loud to myself and hitting the breaks, so again I did not stop.  Her day had been long enough and she needed to get to bed.  This morning I woke up to a flat tire.

When we got home, I was able to get her to drink a big bottle of iced vitamin water, in spite of her throat pain before bed.  This morning she said her throat was better, but her esophagus was sore.  She did finally eat a small pack of pudding and some mac and cheese today so far, and is drinking.  She did pass the camera, complete with flashing light this morning first thing.

We won't get any more results until next week (5 days).

One last thought, when Pumpkin's pain started last Tuesday, we thought it might be due to her starting her period, because that has flared everything up in the past.  Interestingly, she still hasn't started her menses, so I don't know what to think.  She was due somewhere between the 15th and 18th.  I am also hoping that she doesn't get it this week now if she is going to start getting better otherwise.  I don't want it to throw her right back into serious pain again!