Remember yesterday when Dr. Garg said she would send off some of Sam's blood that was drawn Saturday off to be tested for vitamin D deficiency and inflammatory bowel disease?
I got a call this morning telling me that the vitamin D results had come in and her vitamin D was low. The nurse told me that Dr. Garg had called in a prescription for her. I was like, "Ok. Progress here."
Tonight, I got another phone call from Dr. Garg's office to tell me that the inflammatory bowel disease had come back negative. Well, that's good that it's negative. At least we ruled something else out, right? While on the phone this time I asked the nurse what the normal level for vitamin D is and where Sam's level was. She told me that the normal level for vitamin D is between 30-80. Sam's levels were at 15. They called in a vitamin D supplement (1.25 mgs) that she takes once a week for 8 weeks. I asked if she needs to come be retested at the end of the 8 weeks. Dr. Garg said not necessarily. She will need to drink 3-4 glasses of milk a day though (she hates milk and she's actually allergic to it). She also told me that we could have her take 600 mgs of vitamin D per day at this point if she wasn't going to drink the milk.
And then....I got to thinking....I asked about the vitamin B12 again. Dr. Garg repeated her previous answer about it being extremely unlikely that her B12 would be low because she eats a very well balanced diet. I sort of put it out there that you know, we're testing everything else, why not? To my surprise, she agreed with me! She's sending the order for the B12 draw down to the lab and we can go tomorrow. We'll just stop in there before we go for the CT scan. I mentioned to her what Lindsi's plan was with the CT and the sleep study. She was surprised at the suggestion of a sleep study but thinks it may be a good idea. She felt that the double Z pack and the CT scan were a great idea to rule out chronic sinus infections.
After hanging up with the Dr.'s office I called and talked to Travis. He told me he had been talking to his mom and he found out that her vitamin D and vitamin B12 were both low when they were trying to figure out what was wrong with her (before they diagnosed the Celiac). I called and talked with her after talking with Travis. She told me they had her taking Folic Acid, Vitamin D and taking Vitamin B12 shots. She's currently taking around 50,000 mgs Vitamin D (remember Celiac means your body doesn't absorb nutrients like it's supposed to) and B12 shots once a week.
If Sam's B12 comes back low I think we may have our answer! Crossing my fingers...
Tuesday, May 2, 2017
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. Um...no. 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...
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. Um...no. 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.
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.
Saturday, April 29, 2017
Samantha keeps us worried
It's been 2 whole weeks since Sam started not feeling well.
She's missed 26 hours of dance class and 10 days of school.
She's slept an insane amount of hours.
She spends her days curled up in the fetal position whether she's awake or asleep.
She's noticed that when she eats food with wheat in it her stomach hurts worse and longer than if she eats things without wheat.
She has a headache most of the time she's awake.
She talks about going back to bed and how tired she is the majority of the time she's awake. She can't seem to stay awake longer than 8-10 hours at a time.
She has perpetual body aches and pains.
We've been to the pediatrician twice - he's consulted with another pediatrician in the office.
Completed a 5 day z pack and filled a prescription for abdominal migraine medication which she takes once a night.
Had labs runs twice. Iron - normal. Mono - negative. Thyroid simulator - normal range but low end (54). Celiac panel - normal range (0-3 range with her score being 1). Thyroid hormone - normal (low is 68 and normal high is in the 400s. Her score is about 93 so still on the low end.) White blood cell count - normal.
Called and spoke with the pediatrician 4 times.
Visited the chiropractor - where we received the suggestion to check for Celiac
Made an appointment with the ENT to further investigate the thyroid (it's two weeks out or I cancel preschool to take her).
Made an appointment at the Wellness Clinic (also two weeks out for the same reason as the ENT). I've put in a request for a referral to a GI. I was told that the GI's in town don't want to take pediatric patients unless they are the size of an adult. When I said she's 125 lbs, almost 5'8" and 14 years old I was told "They MIGHT take her." If none of them will take her it will be a trip to Primary Children's hospital and that will likely be a good 6 weeks out.
And now, our pediatrician is on vacation for a week.
The day after Sam took the abdominal migraine meds the first time I called and spoke with the pediatrician because she seemed worse than the day prior (think fetal position at the top of the stairs and telling me it hurt to breathe). The pediatrician told me that if she was hurting that much and in that much pain that I should take her to the ER because they can do tests and get results back faster than if he orders them. I've been thinking about that since he said it. At this point, the pediatrician isn't helping. I can't spend another two plus weeks waiting for her to be seen by doctors. If I can't get her to school Monday I'm going to have to put her on the home bound program. I already opted her out of the remainder of Sage testing so she wasn't stressing out about making that all up when she goes back to school.I honestly don't know what else to do for her. When I spoke with the nurse on the phone Thursday (that's the dr's day off) she seemed worried about Sam too. Today she called me back to tell me she didn't realize the pediatrician was on vacation. She asked about Sam and what our game plan was. She told me she's been thinking about Sam since she spoke with me yesterday morning and has been worried about her. She told me she thinks our best bet is the ER too because if nothing else maybe we can get in to see another doctor sooner. At this point, I'll try anything.
Tomorrow, we go to the ER.
She's missed 26 hours of dance class and 10 days of school.
She's slept an insane amount of hours.
She spends her days curled up in the fetal position whether she's awake or asleep.
She's noticed that when she eats food with wheat in it her stomach hurts worse and longer than if she eats things without wheat.
She has a headache most of the time she's awake.
She talks about going back to bed and how tired she is the majority of the time she's awake. She can't seem to stay awake longer than 8-10 hours at a time.
She has perpetual body aches and pains.
We've been to the pediatrician twice - he's consulted with another pediatrician in the office.
Completed a 5 day z pack and filled a prescription for abdominal migraine medication which she takes once a night.
Had labs runs twice. Iron - normal. Mono - negative. Thyroid simulator - normal range but low end (54). Celiac panel - normal range (0-3 range with her score being 1). Thyroid hormone - normal (low is 68 and normal high is in the 400s. Her score is about 93 so still on the low end.) White blood cell count - normal.
Called and spoke with the pediatrician 4 times.
Visited the chiropractor - where we received the suggestion to check for Celiac
Made an appointment with the ENT to further investigate the thyroid (it's two weeks out or I cancel preschool to take her).
Made an appointment at the Wellness Clinic (also two weeks out for the same reason as the ENT). I've put in a request for a referral to a GI. I was told that the GI's in town don't want to take pediatric patients unless they are the size of an adult. When I said she's 125 lbs, almost 5'8" and 14 years old I was told "They MIGHT take her." If none of them will take her it will be a trip to Primary Children's hospital and that will likely be a good 6 weeks out.
And now, our pediatrician is on vacation for a week.
The day after Sam took the abdominal migraine meds the first time I called and spoke with the pediatrician because she seemed worse than the day prior (think fetal position at the top of the stairs and telling me it hurt to breathe). The pediatrician told me that if she was hurting that much and in that much pain that I should take her to the ER because they can do tests and get results back faster than if he orders them. I've been thinking about that since he said it. At this point, the pediatrician isn't helping. I can't spend another two plus weeks waiting for her to be seen by doctors. If I can't get her to school Monday I'm going to have to put her on the home bound program. I already opted her out of the remainder of Sage testing so she wasn't stressing out about making that all up when she goes back to school.I honestly don't know what else to do for her. When I spoke with the nurse on the phone Thursday (that's the dr's day off) she seemed worried about Sam too. Today she called me back to tell me she didn't realize the pediatrician was on vacation. She asked about Sam and what our game plan was. She told me she's been thinking about Sam since she spoke with me yesterday morning and has been worried about her. She told me she thinks our best bet is the ER too because if nothing else maybe we can get in to see another doctor sooner. At this point, I'll try anything.
Tomorrow, we go to the ER.
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!
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!
Subscribe to:
Posts (Atom)