Tuesday, April 25, 2017

Sam stumps the doctor

With six kids in the house if it isn't one of them, it's another one.

Easter weekend we headed to Manti for all the traditional Easter festivities.  Sam sometimes will sleep part of the way there.  Generally she doesn't sleep the entire time (she's my kid who sleeps like I do - six hours and she's good to go).  Sam slept almost the entire way to Manti.  I didn't think too much of it at the time.  We had a good weekend, saw all the cousins and family, the Easter Bunny left way too much for the kids, etc.  Sam seemed to be ok Saturday and Sunday.  She was a little quiet, but nothing too drastic.On the way home on Sunday she slept most of the way home again.  I didn't think too much of it at the time.  I thought maybe she just wore herself out.  It was a long weekend, packed with lots of activity and we never sleep great (we sleep on the floor).  When we got home Sunday night Sam started complaining she wasn't feeling well.  Mostly it was flu like symptoms - nausea, stomach ache, body aches, low grade fever, etc.  She asked for Pepto which I found odd.  My kids hate that stuff.  It always makes them puke and they know it.  She took the Pepto and went to bed about 11 pm (totally normal bedtime for her).

On Monday Sam woke up with the same flu like symptoms.  She was dry heaving any time she was awake.  She spent all her time in the fetal position and in her bed.  She was only awake once or twice for about 20-30 minutes.  She didn't wake up and stay up until 2 pm Tuesday (36+ hrs since she went to bed).  I woke her up on Tuesday so I could take her to the dr's office.  She was awake from 2 pm until about 10 pm (only 8 hrs).  She complained of being tired the entire time she was awake.  We went to see the pediatrician.  He said she had a sinus infection and that would explain her headaches and congestion.  The sinus infection didn't explain the low grade fever, chills, body aches, stomach ache, pain when she was eating, and several other symptoms.  We decided to do lab work to check her iron, thyroid and for mono.  The dr. said he should have results back Wednesday.  He said that depending on how her results came back, he would probably prescribe a Z pack for the sinus infection on Wednesday.  So, we headed out and ran a few errands.  This night the power was out at our place for a solid 5 hours so we ended up going out to eat.  She started doing a little better during dinner.  I could see a little bit of her personality and spark start to come back.  As we were leaving the restaurant she started complaining that her stomach was hurting up under her rib cage on the right side.  She said that it was a pinch and it lasted for about a minute.  I wondered if maybe it was her gallbladder giving her fits.  We got home and she went to bed at about 10 pm curled back up in the fetal position.

Sam slept from 10 pm Tuesday until 11 am Wednesday.  On Wednesday we went back to the dr.  She wasn't doing any better and I was concerned about the stomach pain when she was eating.  The tests results were back in anyway.  At this appointment the dr.. said her iron was normal, the mono was negative and the thyroid was a little on the low end but not so low she should need medication.  He prescribed the Z pack for the sinus infection while we were there.  At this point he was stumped.  Her white blood cell count was normal as well.  He said the other thing he would be concerned about with this much fatigue is leukemia.  With her white blood cell count being normal though, that threw that out of the mix.  The dr. suggested that perhaps she had an ulcer and that was causing the stomach pain.  Her gallbladder is on the opposite side that was hurting her so he didn't think that was it.  He said that if the Z pack hadn't made a difference over the next 10 days then to have her start a course of prevacid.  I felt like this might be possible - she does worry a lot and she's had some issues at school with other girls this year.  I didn't feel like it explained the sleeping and tiredness though.  I took her home and she went to bed about 10 pm again and didn't wake up until 9 am on Thursday.

Thursday Travis and I had to spend the day in Ogden at an Adoption Pathways class for our foster license.  My mom was nice enough to take the day off and tend to kids.  Sam spent the day at my mom's and really just laid around.  Anyone who knows Sam, knows she's not the super quiet type.  My mom said she was really quiet and just laid on her bed and kinda played on her phone for a good share of the day.  Thursday night she went to bed around 10 again and slept in until about 9-10 am on Friday.  Friday she seemed to finally have some life back in her.  She was away for about 8 hours and I didn't hear her complain that she was tired.  She managed to make it across the street to see her friend.  I thought things were maybe looking up.  She was up until about 11:30 on Friday.  Saturday she slept in until around 11 am or so.  Again, Saturday I thought she was starting to perk up.  She was awake a little longer.  She worked on choreography for Caleb's choir group and I didn't hear her talk about being tired.  She went to bed about 10 or so on Saturday and was up around 9 am on Sunday.

By about 12 or 12:30 on Sunday she was telling me that she was tired again.  She had a hard time at church because she was tired and just wanted to get back in bed.  Our church session is 1-4.  After church was over we had my grandpa's 90th birthday party.  We went to that and she seemed to perk up some.  She went to bed about 11 or midnight on Sunday.

Monday comes and the flu like symptoms of the previous week are back.  She's got the body aches again, the stomach ache, the low grade fever, chills, nausea, a headache, etc.  She came upstairs about 6:30 am and asked me if I would just drive her to school so she didn't have to walk.  I told her I would and she fell back asleep in my bed.  When I tried to wake her up she had all her symptoms back and could barely sit up.  I had to take Kash to the dentist so I left her home to sleep.  I finally woke her up at 11 am so I could talk to her about what the dr. had said.  I had called the dr's office while I was at the dentist with Kash.  I made an appointment for 10:45 but the dr. saw we were on the schedule and called me to save me a trip.  He said that maybe she was suffering from abdominal migraines.  I didn't even know there was such a thing.  After a little googling I learned that it's typically diagnosed in kids ages 3-10 and can be a precursor to adult migraines.  I get migraines so I figured it's possible.  He sent a prescription over for a medication that has an antihistime so told me she needed to take it at bedtime because it can cause tiredness (oh goody).  I had scheduled an appointment with the chiropractor for her at 2:30.  He noticed that she had some eczema on the back of her arms.  I had told him about everything that had been going on and he asked if she had always had that eczema there.  I told him yes.  He said that the eczema there can be a sign of an allergy to something in your diet.  He said that a lot of the symptoms I had described sounded like a Gluten allergy.  He suggested we look into having her tested for Celiac's.  Sam was up from 11 am until 5:30 pm on Monday.  I made her ride to Brigham when I took the girls to dance, just in case she felt like she could make it to dance class (she missed every class the week before.  If you know Sam, you KNOW that's abnormal).  By 5 pm she was curled up in the fetal position in the front seat of my car crying because she hurt and was tired and just wanted to go to bed.  I got her home by 5:30 and she went to bed.  She took a 3 hour nap before I woke her up to eat dinner.  I made lasagna with Gluten free noodles (just to try it out).  She didn't eat any garlic bread with her lasagna.  She didn't complain of her stomach hurting after dinner so I figured that was a win.  She was able to stay up until about 11 or so and do homework.  I thought she seemed to be doing a bit better and maybe she would make it to school today.

This morning I went down to wake Sam up at 7 (Nash had tried and she only stayed awake about 10 seconds).  It was all she could do to sit up and get dressed.  She finally made it to the top of the stairs and just sat down and curled into a ball.  She told me that if she took a deep breath that it hurt to breathe and her ribs hurt.  Well, that's new.  I had her move to the couch and she asked for an ice pack for her stomach (also new, usually she wants pressure and heat on her stomach).  We got her an ice pack and she almost immediately fell back to sleep with the ice pack and a blanket on top of her all curled up in the fetal position.  I called the pediatrician's office and left a message with the nurse.  The dr. called me back fairly quickly.  I asked if the new symptom could be a reaction to the new medication she took the night before.  He said he didn't think so.  He told me he had consulted with another pediatrician in the office and based on what her labs looked like and her symptoms he would have done the same thing.  The other dr. didn't feel like there was anything our dr. was missing.  The pediatrician told me he didn't know if he should order some scans and x rays or not.  He didn't want to expose her to radiation if he didn't have to but also wanted to be sure that there wasn't something else major going on.  He told me that if she was doubled over in pain and it was too much for her to handle to take her to the ER because she would get the scans and the results back faster than if he ordered them.  I asked him about testing her for Celiac's.  He said he was fine ordering that lab word.  He also told me that when they test the thyroid they actually test the thyroid stimulator and if it's off then they test the actual thyroid hormone.  Since we were going to be sticking her again for Celiac's, he decided he'd order the thyroid hormone test as well since the stimulator had been a little off.  Sam slept until noon today.  I took her to pick up another week's worth of homework from the school and to pick the boys up from school.  Then I took her to town to get the lab work done.  She was mad when she figured out where we were and why.  She hadn't been pleased with the lab work the week before so she was super not pleased this time.  It was a fight to get her out of the car and to the lab!  After the lab work was done we went to Sam's Club to get some fresh fruit for her to eat (I was down to grapes at home).  She saw some trek clothes in the Deseret Book window and asked if we could go look at them so we did that too.  After we had been to both Sam's and Deseret Book she asked if we could go to Sweetly Divine and see if they had anything Gluten Free.  I told her they wouldn't but she begged to go and look so I agreed.  We got over there and I asked her if she wanted anything (she had said earlier she was hungry).  She decided to get a brownie.  As we walked out I told her, you know that's not gluten free.  She looked at me and said, I know, but it will be worth it.  After she ate about half her brownie she was done.  Her stomach was hurting.  This girl can (and usually does) out eat her dad.  For her to only eat half a brownie (her favorite treat in the world) is not like her.  I asked her if eating the lasagna the night before had upset her stomach and she told me no.  Earlier in the day she had eaten some Cheerio's and I hadn't heard her complain about her stomach at all until the brownie.

The more I think about it, the more a Gluten allergy would make sense.  She's had stomach issues since she was 18 months old and no one has been able to figure it out.  With my mother in law being diagnosed with Celiac's about 2 months ago, it increases the likelihood that she may have it.  Caleb showed a sensitivity to wheat but tested negative for Celiac's.  They told us it would be a few days before we had the results back from today's lab work.

The bright side of today is that she was able to make it to about an hour and a half of dance (first time in a week and a half she's been to dance class).  She's also still awake so she's going on 11 hours awake today (that's a long stretch for her).

It really sucks to watch your very active kid become almost completely unable to do anything.  She's been in pain for a week and a half.  She's constantly tired and she just wants to sleep.  It's so unlike her to be this way.  I just feel bad she feels so rotten and there's nothing I can do to help.  I hope we can find an answer soon!