Monday, May 1, 2017

2 more doctor visits for Sam

Today was a long, long day.

I called Primary Children's Hospital to schedule an appointment with the pediatric GI the ER gave me the name of.  Turns out, she's completely booked out and they told me they could put me on a wait list.  Other option would be to see someone else in the clinic.  Okay, good, let's do that.  Oh, well, the soonest we can get you in is June 8th.  And...face palm.  She even told me that if we GO BACK to the ER or if we go back to our physician and they feel like she needs to be seen sooner the dr can call them and they'll try to get her in sooner.  On the bright side, they did put me on their cancellation list so if someone cancels they can call and get us in sooner.

First dr. appointment of the day was with Dr. Garg at the Budge Clinic.  Dr. Visick (who has consulted with Dr. Sandgren about Samantha) was booked until Wednesday, so I told them just to schedule me with whoever had an appointment available.  Lucky for me, I like Dr. Garg (and her husband is a GI here in the valley).  Dr. Garg is stumped.  She said that she can figure out different diagnosis that would fit the stomach pain, etc. but not one that would fit the stomach pain and the fatigue.  She did another urine sample (normal) and called the lab to see if they had enough blood left from Saturday's draw to run more lab work (yes).  They are running labs for inflammatory bowel disease and vitamin D deficiency.  I asked about B12 shots for energy.  She said that unless she has specifically tested her for vitamin B deficiency she absolutely would not recommend the B12 shots.  So, there goes that idea....She prescribed a probiotic for Sam as well.  Turns out, the pharmacy called me and 1-my insurance won't cover that and 2-they don't have any in stock and would have to order it.  So, I decided I'd just let her take the probiotic that Caleb got from the Wellness Clinic (not a prescription, don't freak out).

After our appointment with Dr. Garg, we had a little bit of time to run a couple errands.  Mind you, I woke Sam up at 9 am and her appointment with Dr. Garg was at 11:15.  It was after 12 when we left Dr. Garg.  By this point, Sam was pretty pooped and ready for a nap.  Lucky for me she kept moving and didn't fall asleep.  She wasn't peppy, but she was awake and moving.  It was an improvement and I'll take it.  I think she may have just been overjoyed at escaping another blood draw!

We had our second appointment with Lindsey out at Cache Valley ENT.  I took a copy of all the labs she's had done with me so they could look at the thyroid tests without having to re do them all.  Lindsey looked at her thyroid numbers and told me fairly quickly she doesn't think it's her thyroid.  She said that if the TSH was high and the hormone was low, she could give her Synthroid and it would level the two out.  Since both of Sam's numbers are low, if they give her thyroid medication it will lower her numbers even more.  Ok, that's a bust then.  Lindsey said that her first thought is maybe she's got a sleep disorder.  She's put in a referral to a pediatric sleep specialist in Ogden (Dr. Feffer) who's really good.  We now have to wait to hear back from that office to schedule a sleep study for Sam.  Lindsey also noticed that the blood work they did on Saturday had white blood cell counts that were higher than the previous draws.  This particular white blood cell is one that responds to mold and allergic reactions.  She said that with the recent moisture in the air the mold has been worse.  I do know that Sam is VERY allergic to molds (thanks allergy testing five years ago).  She wants to do a CT scan of Sam's sinus cavity (same thing we are doing with Brooke as a follow up from the dr. at the eye clinic to rule out other possible reasons for her headaches).  The soonest we can get in for the CT is this Wednesday at 11.  That means that the appointment I had scheduled for Caleb with the nutritionist is now pushed back another week or two.  Oh well, this is currently taking presidence.  She also recommended a round of antibiotics.  Since Sam is allergic to Penicillan and Omnicef, it pretty much leaves us a Z pack.  We did that once recently - about a week and a half ago.  Mind you Sam did feel a little better when she first started taking it.  So, she prescribed TWO Z Packs.  Sam's suppose to take them back to back - take the first pack and as soon as it's done start the second pack.  That's 3 Z packs in 3 weeks.  The meds on this one stay in your system a good 10 days.  That's a LOT of antibiotics.  She was worried about giving her a different antibiotic because most antibiotics will cause stomach cramps/aches/pain.  Since she did well with the Z pack we are hoping she will continue to do well on it now.

So, 6 hours and 2 drs and we've managed to:
*Do another urine sample and it's clear
*Order a FOURTH blood panel to check for inflammatory bowel disease & vitamin D deficiency
*Start a probiotic
*Schedule a CT Scan for her sinus cavity
*Waiting on a call to schedule a sleep study
*Started another antibiotic that's really a mega dose of antibiotics

Pretty sure my insurance is going to call me soon and just say, "Are you for real?"  At least we've now met our deductible...

A day at the ER

Sam surprised me on Saturday and was up around 9 am.  That's the earliest she has been awake on her own in 2 weeks!  She hadn't eaten anything with gluten in it on Friday and she only slept 8 hours Friday night.  I was feeling like maybe we were on to something but was determined to go into the ER and see if they could make any for sure diagnosis.

The nurse put an IV in - Sam was NOT happy about this.  I assured her that an IV was a better route than just having blood because if they needed more or she needed meds they wouldn't have to poke her again.  She finally relented and did good.  She's not a fan of being touched in certain spots and the crook of her arm is one of those spots.  Mind you she had already been poked twice in the last two weeks as well.  They took about 4-6 vials of blood and sent it off to the lab.  Then they started giving her some fluids.  I was glad she was getting some fluids because I know she hasn't been drinking as much as she needs to since she's been sleeping so much.

They really wanted a urine sample right when we got there.  Unfortunately she couldn't pee on demand and they had to wait until she had been there and hooked up to the fluids for awhile before they got anything from her.  They ordered an ultrasound of her gallbladder and pancreas and a chest x ray.  Ultrasound and x ray were backed up they told us so I assumed we would be in for a lengthy wait.  They were really quick to get there though so it wasn't nearly as long of a wait as I thought it might be.

I asked the dr. about the possibility of H. Pylori.  He said that H. Pylori was actually very possible.  He sent us home with stuff to do a stool sample to check for that.  I also asked about vitamin D deficiency.  He told me that he would have that checked on her labs.  I asked about adrenal fatigue.  He told me that something like that would be extremely rare but not impossible.  I asked about Type 1 diabetes - hence the ultrasound on the pancreas.  I had previously asked the pediatrician about lyme disease and he seemed to brush me off and told me that it wasn't very likely here.  I've since had 2 people contact me and tell me that her symptoms sound just like lyme disease.  A friend of mine sent me some great info that I'm going to look into and see about having her tested for that.

We were at the ER for about 3 hours.  At the end of our visit we were told-
Gallbladder & pancreas look good
Blood work is all normal
Urine sample was normal
Chest x ray was normal
Maintain the gluten free diet since it seems to make a difference

The dr. did say that he thinks we are on the right track thinking it may be Celiac and an underlying thyroid issue.  He told us to keep the ENT appointment and to for sure have the thyroid checked out more thoroughly.  He also gave us a referral to a pediatric GI at Primary Children's.  He said that when we call to schedule that they are likely going to tell us that the dr. is booked 6 months out.  He wants us to follow up with the pediatrician on Monday to see if the pediatrician can push that visit up any sooner.  He also gave Sam a prescription for Prevacid and another one to help with any inflammation in her stomach.  The Prevacid she's suppose to take 2 times a day for a month.  The other one is 3 times a day for 10 days.

At this point I'm not sure what to do.  When we left the hospital we went over to Shopko to fill the prescriptions.  Sam was starving (it was 4 pm and all she had eaten that day was a bowl of Cheerio's).  We ended up at Chick Fil A because, "I just want chicken nuggets.  I know they aren't gluten free but it will be worth it!"  So, we went and got chicken nuggets.  She told me later that her stomach started to hurt before we even left the restaurant and hurt for quite a bit longer than what it has been when it acts up.  I thought ok, this is Celiac's for sure.  But tonight I made fried chicken with gluten free flour as breading, mashed potatoes & gravy from scratch (only possible non gluten free item was the corn starch) and gluten free cornbread.  Her stomach hurt about 20 minutes after dinner.

I felt like Sam had done really well today.  She was up at 11:30 but by 12:30 was complaining she was tired again.  I think she went to bed about midnight last night, so still 12 hours of sleep.  She did good at Jade's birthday party and played outside with the kids.  As soon as we got into the car to go home though she told me how tired she was.  Her stomach started to bother her after dinner but she was able to sit at the table and get some more homework done for awhile until her head started hurting too much.

Tomorrow I'm calling the pediatric GI at Primary's.  I'll also call the pediatrician's office.  Our pediatrician is out for the week on vacation but I know he consulted with another doctor about Sam's case.  I'm hoping we can get in to see that dr. tomorrow and that he will be able to call Primary and push up the appointment with the GI.  I'm also planning to call the ENT and see if I can't move our appointment over there up.  I'll also be calling the Peterson Wellness Clinic to see if we can't move that appointment up as well.  I had Sam's Young Women's leader (who has Celiac & a thyroid issue) that she use to get B12 shots to help with her energy level.  I'm going to be asking about that tomorrow as well.  Maybe that will be enough to help her get through school each day.

If she doesn't go to school tomorrow I'm going to have to go put her on the home bound program.  I know she will be extremely disappointed about that.  She loves going to school because she gets to see all her friends there.

Hopefully we can get the H. Pylori test done soon and get results back on that.  I'm crossing my fingers that we can get some answers soon.  I'm missing my sassy dancing queen.