If last week was a turning point in that I had to stop ignoring the fact that Jaedyn isn't getting better, this past weekend was a turning point in accepting that supplementing her and not treating her was not going to make her better.
On Saturday, Jaedyn got all dressed up for a tea party she was invited to with her friends. The girls were so pretty in their fancy dresses and makeup (my girls). Their two friends came here and we took pics together. After about 5 minutes of the photo shoot, Jaedyn needed to go lay down. This has been happening whenever they do anything - take a walk, shop, etc. She gets tired out quickly. She has been needing to sit or her stomach hurts. I found out on Sunday night that she had gone to McDonald's on Friday and had some french fries and a shake. This may have been the source of her pain. Seeing her so thin in her dress up clothes, hurting, weak, not able to eat...it was breaking my heart.
After dropping her off, I cried in my car. I realized the time had come, we had to do something. I talked with Jaedyn about her treatment options, which for me right now seem to be prednisone (very effective, but many side effects and often symptoms return after weaning off of it, so has to go onto another heavy duty med), budesenide (a steroid, not as successful but less side effects), or EEN (exclusive enteral nutrition). EEN is a full liquid diet of a special formula (many to choose from) either by mouth or by NG tube. As Jaedyn cannot even down three cans of her Ensure a day, it would be near impossible for her to do 6 or more a day. After we watched a video of a little girl showing Jaedyn how to do it, she decided that the NG tube probably would be a viable option. She would have to do this for 6-12 weeks continuously, then slowly start regular foods again when all of her Crohn's symptoms have subsided.
I wrote Jaedyn's GI specialist an email and she called us on Monday night. She is in agreement with this plan and will call our pediatrician when she gets a formal plan written up. I'm still waiting to hear from them.
Wednesday, January 30, 2013
Tuesday, January 22, 2013
Facing up to the monster
So I have a few minutes to stop and think. Of course what my minds first leads me to is my daughter, Jaedyn, who is 13 and was just this month diagnosed with Crohn's disease. She weighs 70 lbs and is in the <1% for her weight in this age group. Although she looks tall because of her skinniness, she is only in the 25th % for her height, which started out at the 75th% or better. She is just starting puberty.
Jaedyn homeschools because the stress of school makes her abdominal pains and anxiety worse. She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically. She is much happier at home. Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table. A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all. I think this was her biggest struggle in the realm of a regular classroom. She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes). She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.
This week, Dr. Wilson, the pediatric GI doctor called and had a conference with myself and Jaedyn's pediatrician, Dr. Schramm. They want to start her on prednisone. Frankly, I'm freaked out with the side effects of all the Crohn's meds. I wish I could see into the future. Will the meds help her overall in the long run, or will they hurt her? Will she become dependent on them? Will she ever be able to maintain as well as she is now (which isn't good) without them? Will they help or will they hurt?
I hate that there is no good cure for Crohn's disease. I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.
I read books about Crohn's and diets. They all seem so contradictory.One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost. Ugh!
I guess I have to go back to the Person all my hope comes from, and that is in the Creator Himself. He knows Jaedyn and this health problem that she has. He is the Healer. He may use the meds, or He may choose to heal her silently like He did for my other daughters, Eliana's scoliosis and Ciara's seizures. Lord, help us. This is too big for me, and I feel paralyzed with fear of making her worse. Only You know the perfect cure for her sick body and emotions. Help me make the right decisions.
Jaedyn homeschools because the stress of school makes her abdominal pains and anxiety worse. She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically. She is much happier at home. Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table. A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all. I think this was her biggest struggle in the realm of a regular classroom. She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes). She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.
This week, Dr. Wilson, the pediatric GI doctor called and had a conference with myself and Jaedyn's pediatrician, Dr. Schramm. They want to start her on prednisone. Frankly, I'm freaked out with the side effects of all the Crohn's meds. I wish I could see into the future. Will the meds help her overall in the long run, or will they hurt her? Will she become dependent on them? Will she ever be able to maintain as well as she is now (which isn't good) without them? Will they help or will they hurt?
I hate that there is no good cure for Crohn's disease. I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.
I read books about Crohn's and diets. They all seem so contradictory.One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost. Ugh!
I guess I have to go back to the Person all my hope comes from, and that is in the Creator Himself. He knows Jaedyn and this health problem that she has. He is the Healer. He may use the meds, or He may choose to heal her silently like He did for my other daughters, Eliana's scoliosis and Ciara's seizures. Lord, help us. This is too big for me, and I feel paralyzed with fear of making her worse. Only You know the perfect cure for her sick body and emotions. Help me make the right decisions.
Thursday, January 17, 2013
Icy Weather - Sick Kids
On Sunday the weather decided to warm up a bit. It had been rainy all weekend but I decided it was time to get the kids outside for some fresh air and exercise. We went downtown Soldotna and walked along the river. Jaedyn was feeling pretty weak and sat down a few times on our less than 1/2 mile hike, but I think it was good for her nonetheless. (I asked her when we got home what she had eaten before our noonish walk and she told me that it had been very little - that is probably why she was so weak and tired. She perked up after a good meal.) We tried to play at the park a bit before we went home, but it was just too nasty out and with Jaedyn feeling poorly I decided it was best to go home. The snow was up to our knees in some places in the park and everything was wet and slick from the rain. The kids' snow clothes were all wet too.
On the way home I drove up our street which has a long steep hill. About 1/2 way up my tires were spinning but I was slowing down and I just couldn't get traction. About 3/4 of the way up we stopped. If I tried to go forward, I just went backward down this awful hill. It was too high to try to back down on the ice, so I just had to sit there. Fortunately between a random Bureau worker who was coming to put gravel on the street and my husband who responded quickly to my call, I didn't have to wait long. I took Tim's vehicle home with the kids and he worked with the Bureau guy to get the van the rest of the way up the hill. I'll have to get a picture of the hill sometime soon to post...
At the end of last week we helped care for four children of our friends whose baby is in Portland getting intensive care for lung problems from birth. The dad went to visit the mom. The kids were sick and their 2 year old got the worst of it. She was doing okay but had fevers and was sleeping a lot. On Tuesday I saw the dad with the kids (I only had them until Saturday), and the 2 year old had progressed into pneumonia and they were admitting her to the hospital here. Sheesh. That family can't cut a break. You can keep them in your prayers.
Yesterday our son, 6, started with a cough... today he felt bad enough that he stayed home from school. Probably the same thing, but hopefully he'll pull through it fine. The other older kids were pretty much over it in a week.
I fell twice on the ice yesterday. My stupidity. We woke up to a new 8-9 inches of snow and it coming down like a blizzard, but it cleared up. Problem was the ice that was under it now couldn't be seen. It was my stupidity because I have ice cleats and just was too lazy to put them on... No worries. I wasn't hurt.
I hope you all are doing well and having health in your family and not having ice problems...
Carol
On the way home I drove up our street which has a long steep hill. About 1/2 way up my tires were spinning but I was slowing down and I just couldn't get traction. About 3/4 of the way up we stopped. If I tried to go forward, I just went backward down this awful hill. It was too high to try to back down on the ice, so I just had to sit there. Fortunately between a random Bureau worker who was coming to put gravel on the street and my husband who responded quickly to my call, I didn't have to wait long. I took Tim's vehicle home with the kids and he worked with the Bureau guy to get the van the rest of the way up the hill. I'll have to get a picture of the hill sometime soon to post...
At the end of last week we helped care for four children of our friends whose baby is in Portland getting intensive care for lung problems from birth. The dad went to visit the mom. The kids were sick and their 2 year old got the worst of it. She was doing okay but had fevers and was sleeping a lot. On Tuesday I saw the dad with the kids (I only had them until Saturday), and the 2 year old had progressed into pneumonia and they were admitting her to the hospital here. Sheesh. That family can't cut a break. You can keep them in your prayers.
Yesterday our son, 6, started with a cough... today he felt bad enough that he stayed home from school. Probably the same thing, but hopefully he'll pull through it fine. The other older kids were pretty much over it in a week.
I fell twice on the ice yesterday. My stupidity. We woke up to a new 8-9 inches of snow and it coming down like a blizzard, but it cleared up. Problem was the ice that was under it now couldn't be seen. It was my stupidity because I have ice cleats and just was too lazy to put them on... No worries. I wasn't hurt.
I hope you all are doing well and having health in your family and not having ice problems...
Carol
Monday, January 7, 2013
We have a diagnosis
If you've been following my blog at all, you know that we've been waiting to here back from Jaedyn's pediatric gastroenterologist regarding her diagnosis as to why she can't gain weight. Well she called back and we have a diagnosis - Crohn's disease. Her video endoscopy showed a lot of inflammation in her small bowel (especially in the ileum) and also ulcers throughout her colon. The GI doc isn't sure the ulcers weren't biopsy sites and she is waiting to see pics of the spots herself.
In some ways knowing the diagnosis is worse than the waiting. Perhaps I just need to let it soak in. Perhaps part of me is still in denial. Perhaps I'm just scared of what this is going to mean.
Living in Alaska all of a sudden seems so remote. It never bothered me before now. Having a doctor call me and give me a bomb like that over the phone was her way of not making me travel 3 hours to do the same in her office, but now I feel like "What do we do now!!?" I know better than to get onto some yahoo support group - that was disastrous when my first daughter had seizures - I was so freaked out by the stories! We have been looking at Mayo Clinic and some Children's Hospitals websites online. It seems other places have whole teams to helps patients newly diagnosed with Crohn's. We get a phone call with the doctor essentially asking me what I want to do. Yes, I may be a PA, but I'm not a gastroenterologist. I'm a freaked out Mom like everyone else would be wondering what is the best choice for my daughter.
Right now the options seem to be 1) giving her a short (2 week course) of prednisone then putting her on an immunomodulator. Uh, are you sure this is first line? 2) Putting her on total enteral nutrition, which consists of having her drink nothing but a nutritional supplement like Ensure or Pediasure for 6 weeks - no food, only the supplements or water for at least 6 weeks. 3) Watch and wait and redo the tests in 3-6 months. 4) Go naturopathic - whatever that would mean. "The Maker's Diet"? The Whole 9/Whole 30 diet? See a naturopathic doctor?
On a good note, my 8 year old daughter, Eliana, who had some serious scoliosis going on last summer was re-xrayed this week and it appears to be completely gone! That makes one less trip to Anchorage. Thank You, LORD!
Please keep us in your prayers as we face this beast with Jaedyn. If He can make a crooked girl straight, He can heal another girl's inflammatory bowel disease.
In some ways knowing the diagnosis is worse than the waiting. Perhaps I just need to let it soak in. Perhaps part of me is still in denial. Perhaps I'm just scared of what this is going to mean.
Living in Alaska all of a sudden seems so remote. It never bothered me before now. Having a doctor call me and give me a bomb like that over the phone was her way of not making me travel 3 hours to do the same in her office, but now I feel like "What do we do now!!?" I know better than to get onto some yahoo support group - that was disastrous when my first daughter had seizures - I was so freaked out by the stories! We have been looking at Mayo Clinic and some Children's Hospitals websites online. It seems other places have whole teams to helps patients newly diagnosed with Crohn's. We get a phone call with the doctor essentially asking me what I want to do. Yes, I may be a PA, but I'm not a gastroenterologist. I'm a freaked out Mom like everyone else would be wondering what is the best choice for my daughter.
Right now the options seem to be 1) giving her a short (2 week course) of prednisone then putting her on an immunomodulator. Uh, are you sure this is first line? 2) Putting her on total enteral nutrition, which consists of having her drink nothing but a nutritional supplement like Ensure or Pediasure for 6 weeks - no food, only the supplements or water for at least 6 weeks. 3) Watch and wait and redo the tests in 3-6 months. 4) Go naturopathic - whatever that would mean. "The Maker's Diet"? The Whole 9/Whole 30 diet? See a naturopathic doctor?
On a good note, my 8 year old daughter, Eliana, who had some serious scoliosis going on last summer was re-xrayed this week and it appears to be completely gone! That makes one less trip to Anchorage. Thank You, LORD!
Please keep us in your prayers as we face this beast with Jaedyn. If He can make a crooked girl straight, He can heal another girl's inflammatory bowel disease.
Sunday, January 6, 2013
Another trip to the ED
Sometimes being a medical provider can be scary when things happen to your children. For example, this weekend my son's neck started swelling up with multiple lymph nodes under his ears, behind his ears, on the back and front of his neck. Unfortunately I know too much. Sleep was difficult last night and I woke early this morning with the decision that as soon as he woke up, if his neck wasn't better, I would bring him to the ED if for nothing else to get the peace of mind that only a CBC would give me in this situation.
It actually all started about 3 weeks ago, when his left eye started swelling underneath it for a couple days. Then he got sent home from school with a fever and complaints of a tummy ache. He had an ear infection, and I'm pretty sure then he had some swollen lymph nodes. We took him to his family doc, who is also my colleague. He had never seen anything like his eye, as I hadn't either, but he also noticed that the conjuctiva was also red under the lower lid. We decided to put him on Augmentin as he had been on a couple other antibiotics this past fall for other ear infections and a case of tonsillitis. He was on a strong dose that cleared up the ear infection well in regular time, but the eye took almost 2 weeks of the Augmentin to clear up. We finally stopped the Augmentin about 3 days ago, and everything looked good until yesterday. Today, in addition to the lymph nodes, his eye started pinking up underneath it as well.
Long story short, we spent a few hours in the ED waiting. Waited about an hour to be seen, then about as long for the blood results - I think we were there about 3 hours total. The doctor was very thorough, as we discussed cat scratch fever, TB (he had a negative skin test already this fall), other mycoplasms, strep, mono, etc. His ear infection is gone and his tonsils aren't red. He doesn't have a fever and no exposure to cats. No one else in the family has any infectious processes right now... The CBC was perfectly normal (to my definite relief) with a normal differential. The mono spot and strep screen were both negative, as I figured they would be since he hasn't had fever, just got off Augmentin, and hasn't been tired. The doctor called our local ENT and discussed it with him, and he's agreed to fit my son into his schedule this week. So that is where we left off.
I will sleep much better tonight.
It actually all started about 3 weeks ago, when his left eye started swelling underneath it for a couple days. Then he got sent home from school with a fever and complaints of a tummy ache. He had an ear infection, and I'm pretty sure then he had some swollen lymph nodes. We took him to his family doc, who is also my colleague. He had never seen anything like his eye, as I hadn't either, but he also noticed that the conjuctiva was also red under the lower lid. We decided to put him on Augmentin as he had been on a couple other antibiotics this past fall for other ear infections and a case of tonsillitis. He was on a strong dose that cleared up the ear infection well in regular time, but the eye took almost 2 weeks of the Augmentin to clear up. We finally stopped the Augmentin about 3 days ago, and everything looked good until yesterday. Today, in addition to the lymph nodes, his eye started pinking up underneath it as well.
Long story short, we spent a few hours in the ED waiting. Waited about an hour to be seen, then about as long for the blood results - I think we were there about 3 hours total. The doctor was very thorough, as we discussed cat scratch fever, TB (he had a negative skin test already this fall), other mycoplasms, strep, mono, etc. His ear infection is gone and his tonsils aren't red. He doesn't have a fever and no exposure to cats. No one else in the family has any infectious processes right now... The CBC was perfectly normal (to my definite relief) with a normal differential. The mono spot and strep screen were both negative, as I figured they would be since he hasn't had fever, just got off Augmentin, and hasn't been tired. The doctor called our local ENT and discussed it with him, and he's agreed to fit my son into his schedule this week. So that is where we left off.
I will sleep much better tonight.
Tuesday, January 1, 2013
New Year's Resolutions...
Thinking about today being a new year, and also being inspired by others' lives and blogs (especially my sister, Linda, and JoAnn), I think I want to consider putting a limit on my computer and TV time and make an intentional plan to read to my children more, pick up my guitar again, and finally, to try to learn to crochet again. Another thing Tim and I want to do is to become more intentional about building relationships with people outside of our family.
Reading to my children more: My two youngest don't have the privilege of having had Mom home for 6 years with Sonlight curriculum. My oldest two did. We read together for hours everyday. Now I work full time, and don't have a plan for reading to them. My sister also works full-time. She probably works more than I do. Yet she has read every Magic Treehouse book to her son, and they have read the first 5 Harry Potter books. I've tried to read good books to Eliana and Josiah, but have met some resistance. Josiah doesn't like chapter books. He wants picture books. I think I will start by letting him choose a book, and by reading from the many Sonlight and Five In a Row books I have stocked up from 6 years of homeschooling the girls. I may even get some Magic Treehouse books and read them too. Josiah has liked them in the past. Elly may just need her own reading time afterward with me, so we can read some bigger books. If I don't make a plan with them, it won't happen.
Limit my screen time. I have gotten to where a majority of my free time is spent either on my laptop or in front of the TV. I find doing this is fulfilling and easy, and has become a habit/addiction. I think I need to have set-aside times for TV and computer. I'll have to do some thinking about specific timeframes. Do any of you have limits set that work for you?
I will get out my guitar and keep it with some easy worship music so I can grab it up and play around with it for a little bit when I see it.
As far as crochet goes, this may take a little more planning as I am still a beginner, and my lack of know-how is a limitation. Perhaps just trying and doing what I can will lead to easy projects that may lead to more projects, etc. I will consider doing crocheting one time a week, maybe Sunday afternoons, and see what happens from there.
Finally, regarding intentional relationship building: I think Tim and I need to plan, once a month, to invite friends over for a meal or to play games or for a holiday celebration like Passover or Shabbot. We've lived in our house for about two years and have never gotten together with our next door neighbors. We've had their kids over and have gone to their kids' birthdays, but have never fellowshiped with them together as a family. We have a lot in common with them and enjoy them, but have never worked at making this happen. We've talked about doing this for two years. I think it is time to give it a try.
It seemed like a simple plan when I first wrote thought about my plans, but now seems daunting. Will I be able to overcome my screen addiction for what seems to be great alternatives? With prayer, I sure hope so!
Reading to my children more: My two youngest don't have the privilege of having had Mom home for 6 years with Sonlight curriculum. My oldest two did. We read together for hours everyday. Now I work full time, and don't have a plan for reading to them. My sister also works full-time. She probably works more than I do. Yet she has read every Magic Treehouse book to her son, and they have read the first 5 Harry Potter books. I've tried to read good books to Eliana and Josiah, but have met some resistance. Josiah doesn't like chapter books. He wants picture books. I think I will start by letting him choose a book, and by reading from the many Sonlight and Five In a Row books I have stocked up from 6 years of homeschooling the girls. I may even get some Magic Treehouse books and read them too. Josiah has liked them in the past. Elly may just need her own reading time afterward with me, so we can read some bigger books. If I don't make a plan with them, it won't happen.
Limit my screen time. I have gotten to where a majority of my free time is spent either on my laptop or in front of the TV. I find doing this is fulfilling and easy, and has become a habit/addiction. I think I need to have set-aside times for TV and computer. I'll have to do some thinking about specific timeframes. Do any of you have limits set that work for you?
I will get out my guitar and keep it with some easy worship music so I can grab it up and play around with it for a little bit when I see it.
As far as crochet goes, this may take a little more planning as I am still a beginner, and my lack of know-how is a limitation. Perhaps just trying and doing what I can will lead to easy projects that may lead to more projects, etc. I will consider doing crocheting one time a week, maybe Sunday afternoons, and see what happens from there.
Finally, regarding intentional relationship building: I think Tim and I need to plan, once a month, to invite friends over for a meal or to play games or for a holiday celebration like Passover or Shabbot. We've lived in our house for about two years and have never gotten together with our next door neighbors. We've had their kids over and have gone to their kids' birthdays, but have never fellowshiped with them together as a family. We have a lot in common with them and enjoy them, but have never worked at making this happen. We've talked about doing this for two years. I think it is time to give it a try.
It seemed like a simple plan when I first wrote thought about my plans, but now seems daunting. Will I be able to overcome my screen addiction for what seems to be great alternatives? With prayer, I sure hope so!
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