Yesterday we went and saw Lindsey at the ENT's office again. Sam had the CT scan done in the back of the allergy clinic. It's pretty cool. It's like a big dental 360 x ray machine. The images pull up almost instantly on the computer. The girl doing the scan points to two spots on Sam's face and says, "See this? This should be two black spots." (It was gray.) Then she turns to Sam and says, "Can you even breathe?" Sam looked surprised and just goes, "Yea." The girl doing the scan asks, "Are you sure?!" I didn't figure that was a great way to start our appointment.
After the scan was done we went back over to the ENT office and had to wait for Lindsey to come in. She pulled the images up on the computer and scrolled through it showing different layers. She showed where there is infection in her right cheek sinus. She said that it isn't horrible and wouldn't cause her current symptoms. She said it was probably a lot worse two weeks ago when she first started the Z pack. Lindsey is hoping that the double Z Packs she started on Monday will chip away at what's left of the infection and get rid of it completely. Apparently the Z Pack isn't a fantastic option for sinus infections but since she's allergic to PCN it's about the only option she's got. She also showed us that Sam has a pretty decent deviated septum. She said that we could do surgery to repair it but wouldn't worry about doing that until she's 16. I guess the septum is a growth plate of sorts so they like to wait until they are kinda done growing. I asked what the consequences would be if we didn't get it fixed. She said that having it fixed reduces how much congestion you get and how often. She said it can also help reduce snoring. So, it's not a major have to surgery, but it would probably be nice for her in the congestion department because she goes through a box of tissues by herself in just a few days. Lindsey also pulled up images of her ears that the CT caught. Everything on her ears looks great (can't say I think that will happen when we have B's on the 15th though).
I updated Lindsey on the Vitamin D level. She suggested taking Vivactin twice a day. She said the Vitamin D won't be absorbed by her body if it isn't taken with calcium. So, we went and bought some Vivactin later in the day and she's started on that. Sam says they are pretty good - we got the caramel ones. Side note - I did look at the Vitamin D prescription bottle and they did prescribe the 50,000 units for once a week - same amount Trav's mom is taking.
I asked Lindsey if we needed to do anything as far as calling Dr. Feffer's office. She checked on it and it's in progress. I was told if I don't hear from them in a few days to call Lindsey's office back and they would follow through on it.
I heard from the pediatrician's office today on the B12. We had her blood drawn before her CT yesterday and I had hoped we'd get results back last night, but no such luck. That's ok, I'm just super impatient. Nurse said B12 levels are normal. I really thought they would be low. I recently found out my Grandma Reeder has taken B12 for 45 years. Combining that knowledge with the fact that my mother in law's B12 was low and her energy levels, I thought for SURE her B12 would be low. Guess not. Back to the drawing board.
I heard from the home bound coordinator today as well. I told him whats been going on and that Sam had done better yesterday and if she continues doing that well then she could maybe try going back to school Monday. My worry is throwing her back into everything all at once and having her relapse. He said that we should treat it like a mono situation. When she goes back she'll just go for hours 1-3. The next day she's back she'll go hours 4-6. This way she can get each class a few times a week. They'll keep her on the home bound program just in case she relapses. We'll see how the next four days go and I told him I would text him and let him know if I was going to send her to school Monday or not. Here's hoping.
Thursday, May 4, 2017
Tuesday, May 2, 2017
Fourth round of lab work says....
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...
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...
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.
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