We have been in a pattern since the summer: 1-2 weeks of 100% EleCare followed by 4-6 weeks of regular food supplemented with EleCare. The first signs that we need to jump back on EleCare are a skin rash (like eczema) and then irritability and, finally, loose stools. Our boy is mostly happy, but when his bowels are inflamed - he becomes a little pistol. It's our cue to put him back on the EN for a week or more.
It works like a charm for him. The other night, he had lasagna for the first time in... oh.. two years. He gobbled it up and didn't have any issues.
We have some new friends who have begun the SCD recently for their autistic 4 year-old boy to try and clear up GI issues. They (seemingly) handle the day-to-day grind of the SCD better than we did, though have seen only a little GI progress to date (after a month or two). I haven't read up much on the thoughts of the effects of SCD on autism, but it seems that looking at both GI changes and personality changes would be warranted after introducing the SCD. We'll continue to support these friends in their SCD adventure -- hopefully it helps their son in a measurable way.
Finally, we had a scare a couple of weeks ago with blood (maybe) in our daughter's stool. This would be the same exact time/age when our son was diagnosed. Since then, she's been doing fine and I hope she doesn't inherit Crohn's. It's Cyrus' disease! Not her's...
Tuesday, December 14, 2010
Friday, October 29, 2010
6 Months with Enteral Nutrition
We surpassed the 6-month mark since abandoning 100% SCD and Entocort, and entered the enteral nutrition world. I am amazed at so many aspects of EN: how well it works, how surprised our son's GI doc is with its success, how much it costs, how insurance companies don't cover it, and how we don't hear of many other Crohnies who have tried it. The decision, I suppose, was all ours -- we didn't get much support from the medical profession other than through the Oppenheimer book and an awesome dietician at the children's hospital... who also noted how infrequently this treatment is prescribed and adhered to.
I've posted previously that clinical remission was obtained in just a matter of weeks (maybe 6), though we did a full 12-week course. After that, we introduced foods gradually and noted what has not gone over well. Dairy seems to be a no-go any more (which is concerning if we were to return to the SCD). Bread (homemade or Great Harvest) and sauceless pasta seem to go over fine. Saltines, no problem. Fibrous foods have been fairly limited. There are these great tasting dairy-free blintzes from Trader Joe's that he devours for breakfast.
Every 4-6 weeks we seem to introduce something that causes a very minor flare up. A mood-change is the first sign that things are about to go south, and almost always precedes GI changes. We then go back on 100% EleCare and within a few days he's solid and good to go. The dietician advised us that we would likely need to rotate every month or so between food and EN... and this seems to be true so far: we've been rotating one month with food (supplemented with EleCare or Pediasure) followed by a week with 100% EleCare.
Our son had a follow-up appointment at the children's hospital a week and a half ago and all blood work was normal. Sed rate, CRP, liver function, complete blood count: all normal. What's more is that he jumped back up on to his pre-Crohn's growth curve and is again advancing physically, mentally, and emotionally.
The negatives for a (now) 5 year-old:
- We have to take him to the bathroom several times in the first few hours after he goes to bed or he'll wake up in a pool of pee (even through a pull-up). Eventually, this may embarrass him.
- Cost. I have no idea what the real cost is yet if we were to buy it at cost from the company. Probably $1000 / month if we were doing 100% EleCare. Our financial aid runs out this month, so I'll probably find out soon! I have been able to purchase it off of Ebay for $16 per can, which lasts a little longer than a day if that is the sole source of food.
- The first day getting back onto EleCare is a little tough... but after that, he asks for it. Seriously. He knows it makes him feel good. He shows better restraint than any adult I've ever met... he has developed an acute sense of what feels good and what doesn't.
We may go back to the SCD when we have a little more time for the kitchen... three little kids have us running ragged lately, and planning to eat SCD takes more bandwidth than we have right now. Meanwhile, I might modify the site's heading in order to not falsely advertise that we are SCD compliant!
I've posted previously that clinical remission was obtained in just a matter of weeks (maybe 6), though we did a full 12-week course. After that, we introduced foods gradually and noted what has not gone over well. Dairy seems to be a no-go any more (which is concerning if we were to return to the SCD). Bread (homemade or Great Harvest) and sauceless pasta seem to go over fine. Saltines, no problem. Fibrous foods have been fairly limited. There are these great tasting dairy-free blintzes from Trader Joe's that he devours for breakfast.
Every 4-6 weeks we seem to introduce something that causes a very minor flare up. A mood-change is the first sign that things are about to go south, and almost always precedes GI changes. We then go back on 100% EleCare and within a few days he's solid and good to go. The dietician advised us that we would likely need to rotate every month or so between food and EN... and this seems to be true so far: we've been rotating one month with food (supplemented with EleCare or Pediasure) followed by a week with 100% EleCare.
Our son had a follow-up appointment at the children's hospital a week and a half ago and all blood work was normal. Sed rate, CRP, liver function, complete blood count: all normal. What's more is that he jumped back up on to his pre-Crohn's growth curve and is again advancing physically, mentally, and emotionally.
The negatives for a (now) 5 year-old:
- We have to take him to the bathroom several times in the first few hours after he goes to bed or he'll wake up in a pool of pee (even through a pull-up). Eventually, this may embarrass him.
- Cost. I have no idea what the real cost is yet if we were to buy it at cost from the company. Probably $1000 / month if we were doing 100% EleCare. Our financial aid runs out this month, so I'll probably find out soon! I have been able to purchase it off of Ebay for $16 per can, which lasts a little longer than a day if that is the sole source of food.
- The first day getting back onto EleCare is a little tough... but after that, he asks for it. Seriously. He knows it makes him feel good. He shows better restraint than any adult I've ever met... he has developed an acute sense of what feels good and what doesn't.
We may go back to the SCD when we have a little more time for the kitchen... three little kids have us running ragged lately, and planning to eat SCD takes more bandwidth than we have right now. Meanwhile, I might modify the site's heading in order to not falsely advertise that we are SCD compliant!
Monday, August 9, 2010
Updates
It's been a few months since we've updated this blog. Our son started on a 12-week course of nothing but EleCare. Without any additional meds, EleCare put him into remission. His CD symptoms/blood disappeared, he gained about 10-15% of his body weight back, lab values (mostly) back to normal, and stools were surprisingly solid/normal. The blood markers of inflammation went back to normal, though his liver markers were elevated. One nurse who is experienced with enteral nutrition explained that this often happens when someone gains weight rapidly.
We began adding foods gradually back into his diet. The funny thing is that all of the SCD foods that he ate previously... he won't TOUCH now! We've started in with rice, saltines, fresh baked bread from Great Harvest... and have stayed away from very fibrous foods.
Right now blackberries are ripening in our backyard and he's been begging us to try them -- so much so that it becomes an argument. Yesterday, I caved and let him try one with the stern warning that it would probably hurt his belly. Of course, this morning he was doubled over in pain and laying on the couch. While we're not 100% positive that is what did it, it's just crazy that something as simple as a blackberry could potentially cause pain.
He's had normal foods for about 6-7 weeks now (with supplements of EleCare) and has maintained remission. There are definitely foods that don't sit well with him (Cucumbers set him off big time) and we feel like he might be heading towards a relapse. We might put him back on 100% EleCare for a few weeks to get him back on track.
In other news, I'm holding his new baby brother (Miles) as I type this. Miles was born on August 4th and weighed exactly the same as Cyrus. They also look eerily similar to each other, but Miles has been far easier!
We began adding foods gradually back into his diet. The funny thing is that all of the SCD foods that he ate previously... he won't TOUCH now! We've started in with rice, saltines, fresh baked bread from Great Harvest... and have stayed away from very fibrous foods.
Right now blackberries are ripening in our backyard and he's been begging us to try them -- so much so that it becomes an argument. Yesterday, I caved and let him try one with the stern warning that it would probably hurt his belly. Of course, this morning he was doubled over in pain and laying on the couch. While we're not 100% positive that is what did it, it's just crazy that something as simple as a blackberry could potentially cause pain.
He's had normal foods for about 6-7 weeks now (with supplements of EleCare) and has maintained remission. There are definitely foods that don't sit well with him (Cucumbers set him off big time) and we feel like he might be heading towards a relapse. We might put him back on 100% EleCare for a few weeks to get him back on track.
In other news, I'm holding his new baby brother (Miles) as I type this. Miles was born on August 4th and weighed exactly the same as Cyrus. They also look eerily similar to each other, but Miles has been far easier!
Wednesday, May 5, 2010
Updates
The Positives:
Cyrus is averaging a pound a week right now on EleCare. 3.5 pounds in 3.5 weeks. The past couple of days have yielded little or no blood and... solid-ish bunny turd-like stools. Amazing. On top of this, he feels great and looks great too.
The Negatives:
Other foods are starting to become an issue. Particularly, cheese. He wants some and we're not giving it to him. He also requests to *smell* each and every food that we eat. This is kind of cute in some ways, but our son has a little obsessive-compulsiveness about him and this is starting to get annoying.
The Bottom-line:
Enteral nutrition is pretty fantastic. Looking at it externally from a parent's point-of-view, I would do it full time if I were a person with Crohn's and could afford it.
Cyrus is averaging a pound a week right now on EleCare. 3.5 pounds in 3.5 weeks. The past couple of days have yielded little or no blood and... solid-ish bunny turd-like stools. Amazing. On top of this, he feels great and looks great too.
The Negatives:
Other foods are starting to become an issue. Particularly, cheese. He wants some and we're not giving it to him. He also requests to *smell* each and every food that we eat. This is kind of cute in some ways, but our son has a little obsessive-compulsiveness about him and this is starting to get annoying.
The Bottom-line:
Enteral nutrition is pretty fantastic. Looking at it externally from a parent's point-of-view, I would do it full time if I were a person with Crohn's and could afford it.
Sunday, May 2, 2010
3 Weeks
Today marks three weeks on enteral nutrition. Our son has gained 3 pounds in 3 weeks and continues to have a lot of energy. The most I have seen from him in a long time which is wonderful to see. He has been consuming about 56 ounces of EleCare per day and sometimes more. The nutritionist recommended at least 50 ounces so we are on target with the correct amount.
For the past few days his stools have been pretty much blood free! He has been a happy kid and has not complained at all about his tummy hurting while being on the EleCare. We know it has been making him feel good and he looks good too. His face is fuller and the rings are gone from under his eyes. We will take him in for a blood draw in about a week and a half to check his numbers and see where his inflammation markers are at after four weeks on TED.
For the past few days his stools have been pretty much blood free! He has been a happy kid and has not complained at all about his tummy hurting while being on the EleCare. We know it has been making him feel good and he looks good too. His face is fuller and the rings are gone from under his eyes. We will take him in for a blood draw in about a week and a half to check his numbers and see where his inflammation markers are at after four weeks on TED.
Tuesday, April 20, 2010
Sunday, April 18, 2010
2 pounds
2 pounds gained on EleCare in one week. What more is there to say? Fantastic! At least for us, going from 36 pounds to 38 pounds is a big deal.
Still a little blood, but not that bad -- stools are pretty liquidy.
Last quick note: the Children's Hospital is covering 100% of the costs for the enteral nutrition!!! We applied for financial aid and they decided, ultimately, to grant it. This is such great news and we are super excited about being able to go forward with this without the financial worry.
Still a little blood, but not that bad -- stools are pretty liquidy.
Last quick note: the Children's Hospital is covering 100% of the costs for the enteral nutrition!!! We applied for financial aid and they decided, ultimately, to grant it. This is such great news and we are super excited about being able to go forward with this without the financial worry.
Wednesday, April 14, 2010
EleGood
Cyrus is doing a fantastic job with the EleCare. In the last three days, he's had about 46-50 ounces each day -- which is roughly 1500 calories. Stools are still runny, but less frequent (~ 2/day).
We created the "EleCare calendar" that has special activities planned on it to help him get through the EN... but he seems pretty unphased by not eating other foods and he appears to feel really good.
We're now weighing him daily and he's gained almost a half a pound in just three days on EN.
We've been able to buy EleCare on Ebay for about $16/can -- much better than the $50/can (from what we hear) direct cost.
Lastly, I have to say that enteral nutrition is WAY easier on us as parents compared to the SCD! It makes decisions on what to feed him, well... easy. Prep work... easy. The guilt in eating a bowl of cereal for breakfast... well, I still feel guilty, but not *as* guilty! With all of that said, I think we'll still go back to the SCD once we're done with this 8-12 week round of EN.
We created the "EleCare calendar" that has special activities planned on it to help him get through the EN... but he seems pretty unphased by not eating other foods and he appears to feel really good.
We're now weighing him daily and he's gained almost a half a pound in just three days on EN.
We've been able to buy EleCare on Ebay for about $16/can -- much better than the $50/can (from what we hear) direct cost.
Lastly, I have to say that enteral nutrition is WAY easier on us as parents compared to the SCD! It makes decisions on what to feed him, well... easy. Prep work... easy. The guilt in eating a bowl of cereal for breakfast... well, I still feel guilty, but not *as* guilty! With all of that said, I think we'll still go back to the SCD once we're done with this 8-12 week round of EN.
Sunday, April 11, 2010
Beginning Our Journey on Elecare
Today marks the second day of the Elecare diet! At least 50 ounces a day is the goal. We are making our son an Elecare calendar to help celebrate his success each and every day since we know this is not going to be an easy 8 weeks (at least), but one we feel are little guy is certainly capable of achieving. Throughout the course of this therapy, we are including fun activities on his calendar he will look forward to to help all of us celebrate each day. Yesterday was his first day and overall he did an amazing job! He was able to get down about 45 ounces. His appetite has been off for the past week because of the stomach flu. Last Monday night he was throwing up every 30 minutes for nine hours straight! Due to this, he lost some weight, but we will be tracking his weight during this journey and we pray to see some increases in his growth. We also pray to see improvement in his gut.
We are still waiting to hear back from Seattle Children's Hospital regarding financial assistance to cover the cost of Elecare. My husband got a call from them last week because they wanted some more information from us, but the individual he spoke to made it sound unlikely that we would receive any assistance due to the income requirements. We were able to get a two week supply at roughly 16 dollars a can by bidding on Ebay though. Still pricey, but much better than paying 60 dollars per can!
We are still waiting to hear back from Seattle Children's Hospital regarding financial assistance to cover the cost of Elecare. My husband got a call from them last week because they wanted some more information from us, but the individual he spoke to made it sound unlikely that we would receive any assistance due to the income requirements. We were able to get a two week supply at roughly 16 dollars a can by bidding on Ebay though. Still pricey, but much better than paying 60 dollars per can!
Thursday, April 1, 2010
From SCD to EleCare
Our boy will spend the next 8-10 weeks off of the SCD and instead will be drinking vanilla EleCare. It's a big change, for sure, but one that will hopefully get the inflammation under control -- something SCD alone, or SCD with Entocort, has not been able to do.
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
Tuesday, March 30, 2010
Absorb Plus
One quick note about the Absorb Plus EN product we've been trying. Of any food/supplement we've ever given our son, I've never seen anything move from one end to the other more quickly than the chocolate Absorb Plus. Literally, within 5 minutes of drinking the shake he declares: "I have to go poopy!". It's amazing, and worth noting if constipation is ever a problem.
When we tried (vanilla) EleCare a month ago, we didn't observe this *problem*. The bad news is that EleCare is way more expensive than the Absorb Plus, and Absorb Plus ships from about an hour north of our house (~ 1 day delivery). The good news is that I've seen EleCare on Ebay at a reduced price, just in case our insurance company chooses to be a typical insurance company and deny coverage.
When we tried (vanilla) EleCare a month ago, we didn't observe this *problem*. The bad news is that EleCare is way more expensive than the Absorb Plus, and Absorb Plus ships from about an hour north of our house (~ 1 day delivery). The good news is that I've seen EleCare on Ebay at a reduced price, just in case our insurance company chooses to be a typical insurance company and deny coverage.
Saturday, March 27, 2010
Weaning off Entocort, on to Enteral Nutrition
That's the outcome of the GI appointment this week. We're meeting with a nutritionist on Wednesday to determine how many shakes to drink each day and how to proceed with getting insurance coverage for them (if possible). After 8+ months of the SCD, I think he can handle 8 weeks of nothing but shakes. In many ways, the EN will be much simpler: if he is hungry, I know exactly what to feed him! Actually, the EleCare tastes a lot like cake batter and our son sucks it down and says it tastes great. We bought some of the Absorb Plus (based on a commenter's suggestions) and that stuff tastes decent too (the chocolate is much better than the vanilla or berry).
Our boy jumped a growth curve, and not in the positive direction. He has tracked along the 75/50 percentile for height/weight B.C. (before Crohn's), and now seems to be closer to 40/30. It's time to try something different for a change and we hope the EN diet will boost his growth.
Here's a picture of Dr. Jekyll / Mr. Hyde in his best outfit:
Our boy jumped a growth curve, and not in the positive direction. He has tracked along the 75/50 percentile for height/weight B.C. (before Crohn's), and now seems to be closer to 40/30. It's time to try something different for a change and we hope the EN diet will boost his growth.
Here's a picture of Dr. Jekyll / Mr. Hyde in his best outfit:
He broke our hearts this week (well, not really) and *finally* declared that he had taken himself to go poop and cleaned himself up without any help. His sister, who is a little over 2 years old, has been wearing underwear to bed for the last couple of months and this seems to have made an impression on our boy... fueled a little competitiveness that we haven't seen before!
Tuesday, March 23, 2010
Back for a Follow-Up
It's time to get rid of Entocort. The only good thing that it did was make my son learn how to swallow a horse-size pill. He throws those two pills back with breakfast every morning all by himself like a champion. Beyond that, I would say that the medication has truly done nothing.
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
Sunday, March 7, 2010
Solid
We've had a great stretch of solid stools. Who would've thought I'd cheer for my son's pooh's? Four *solid* days, little blood, and clearly feeling good, this may be a fluke but we'll take it! Today was quite a bit more mushy, so the streak may be coming to an end however...
Our boy still had tons of energy and has been eating like crazy. It's difficult to keep up with him and we find ourselves looking for more and more ideas for creative snacks that fit within where he is on the SCD.
After 4 weeks of Entocort, we hadn't seen much improvement... though our doc said it could take about 6 weeks before seeing its full effect. We introduced the EleCare after 4 weeks of Entocort to see if we noticed any incremental changes one way or another. The EleCare is a great non-SCD snack that doesn't seem to bug his gut, and may be helping. In any case, our son likes it and I feel good that he's getting more nutrients without any adverse effects.
Our boy still had tons of energy and has been eating like crazy. It's difficult to keep up with him and we find ourselves looking for more and more ideas for creative snacks that fit within where he is on the SCD.
After 4 weeks of Entocort, we hadn't seen much improvement... though our doc said it could take about 6 weeks before seeing its full effect. We introduced the EleCare after 4 weeks of Entocort to see if we noticed any incremental changes one way or another. The EleCare is a great non-SCD snack that doesn't seem to bug his gut, and may be helping. In any case, our son likes it and I feel good that he's getting more nutrients without any adverse effects.
Wednesday, March 3, 2010
8 Months...
I've not really intended to update this blog only monthly, but sitting back and reviewing the previous month seems like a natural thing to do (rather than daily or weekly) with this diet. Last Saturday was one of the worst Crohn's Days that our boy has had. By 11am, he had been on the pot about 6 times and by the end was just pooping blood. No fun. He also prolapsed for the first time in many months. No fun at all.
All of this after 4 weeks of being on Entocort. To be fair, I think our boy got a hold of a piece of SCD-legal pork sausage that had a bit too much (unmixed) pepper in it. The previous night, he mentioned something about that piece being "spicy". The next morning was when the trouble began.
After two days of not pooping after this episode, we wondered if something was wrong. He let us know that he needed to go and... lo and behold... the first solid poop in about 10 months. While it had a little blood at the end of it, it was definitely solid. Today's was similar.
He's generally been feeling good, though he seems to have a daily mental breakdown - maybe due to the steroid? The breakdowns are pretty irrational and he doesn't really know why he's having them:
Us: "What's the matter?..."
Him: "Nothing's the matter! (crying)... I don't know"
It's probably the medicine talking. We've also been giving him EleCare, which smells and tastes like cake batter. He loves it. L O V E S it. Definitely not SCD legal, but we thought it was worth exploring as a enteral nutrition supplement due to not-so-great height/weight gain. Growth issues are starting to become apparent, as well as energy issues.
HOWEVER. I will note that our boy pays very close attention at his gymnastics lessons and preschool, unlike many of the other kids who cannot stop moving (almost twitching) long enough to listen. Part of this is his personality, but I know part of it is the diet as well.
In summary, I have been thinking of abandoning Entocort as it hasn't seemed to be working after a month. The last couple of days have caused me to pause, but I'm still cautious and skeptical about it. The next step would either be total enteral nutrition or methotrexate + SCD.
Keeping our fingers crossed for something to work...
All of this after 4 weeks of being on Entocort. To be fair, I think our boy got a hold of a piece of SCD-legal pork sausage that had a bit too much (unmixed) pepper in it. The previous night, he mentioned something about that piece being "spicy". The next morning was when the trouble began.
After two days of not pooping after this episode, we wondered if something was wrong. He let us know that he needed to go and... lo and behold... the first solid poop in about 10 months. While it had a little blood at the end of it, it was definitely solid. Today's was similar.
He's generally been feeling good, though he seems to have a daily mental breakdown - maybe due to the steroid? The breakdowns are pretty irrational and he doesn't really know why he's having them:
Us: "What's the matter?..."
Him: "Nothing's the matter! (crying)... I don't know"
It's probably the medicine talking. We've also been giving him EleCare, which smells and tastes like cake batter. He loves it. L O V E S it. Definitely not SCD legal, but we thought it was worth exploring as a enteral nutrition supplement due to not-so-great height/weight gain. Growth issues are starting to become apparent, as well as energy issues.
HOWEVER. I will note that our boy pays very close attention at his gymnastics lessons and preschool, unlike many of the other kids who cannot stop moving (almost twitching) long enough to listen. Part of this is his personality, but I know part of it is the diet as well.
In summary, I have been thinking of abandoning Entocort as it hasn't seemed to be working after a month. The last couple of days have caused me to pause, but I'm still cautious and skeptical about it. The next step would either be total enteral nutrition or methotrexate + SCD.
Keeping our fingers crossed for something to work...
Thursday, February 4, 2010
comments
BTW - for some reason, we have some trouble posting comments when using a Firefox web browser. Safari seems to work though, haven't tried IE...
Wednesday, February 3, 2010
February Update
Our son is now (today) 7 months on the SCD! Wow, time flies when you are cooking and doing dishes... :) Our dishwasher runs a minimum of once a day, most days twice, and our kitchen often looks like a bomb struck. No real updates food-wise, we are basically in the same spot that we've been for the last 6 months.
Over the last month, our boy's CD was getting slightly worse and we elected to put him on *something* to try and help heal his gut. SCD alone just isn't doing it and we had another prolapse incident. (very traumatic experience) That additional *something* ended up being Entocort (budenoside) with a supplement of enteral nutrition to boost weight and height gain. (he's seems noticeably smaller lately) We will continue on SCD and then try to wean off of Entocort in a few months if it works.
So far, Entocort seems to be working okay and we haven't started the enteral nutrition yet. Thank goodness we have insurance. The price of Entocort without insurance is absolutely ridiculous and should be illegal: $800 for a one-month supply. On the other hand, we're heading in the right direction bowel movement-wise and it's had fewer side effects than prednisone. Also, he has more energy and seems to have better focus on activities. Our 4 year-old needed to learn how to swallow two medium-sized pills and he's done a great job so far. We haven't started the enteral nutrition yet because... of all things, it's not SCD legal. We're waiting to see if Entocort does its voodoo magic and will introduce the EN in a week or two.
Hope you are all doing well...
Over the last month, our boy's CD was getting slightly worse and we elected to put him on *something* to try and help heal his gut. SCD alone just isn't doing it and we had another prolapse incident. (very traumatic experience) That additional *something* ended up being Entocort (budenoside) with a supplement of enteral nutrition to boost weight and height gain. (he's seems noticeably smaller lately) We will continue on SCD and then try to wean off of Entocort in a few months if it works.
So far, Entocort seems to be working okay and we haven't started the enteral nutrition yet. Thank goodness we have insurance. The price of Entocort without insurance is absolutely ridiculous and should be illegal: $800 for a one-month supply. On the other hand, we're heading in the right direction bowel movement-wise and it's had fewer side effects than prednisone. Also, he has more energy and seems to have better focus on activities. Our 4 year-old needed to learn how to swallow two medium-sized pills and he's done a great job so far. We haven't started the enteral nutrition yet because... of all things, it's not SCD legal. We're waiting to see if Entocort does its voodoo magic and will introduce the EN in a week or two.
Hope you are all doing well...
Sunday, January 3, 2010
The New Year
We took a break from blogging for a few weeks, but are now back at it...
Today, we've been on the SCD for 6 months with our son without any additional medications. We made it through the holidays reasonably well, but he is beginning to show signs of burn-out with eating the same foods over and over again. Snack-time is particularly boring, alternating between cheese and squash buttons and yogurt. We're a bit reluctant to give him anything that might set him off, because he seems to be feeling good lately.
Food:
Since I've been home for the last week, we've tried to reintroduce some snacks like fruit leathers (grape) and today we gave him a pickle (Bubbies). While the fruit leathers seem to go okay and he liked the pickle, the pickle seemed to trigger an urgent run to the bathroom! Twice. We'll see, they *are* a little spicy. We're otherwise where we were a month ago: Stage 2 to 3 of the diet. We did have some stuffed bell peppers tonight that were excellent and seemed to go over reasonably well. I stuffed them with sauteed zucchini, mushrooms, tomatoes, onions, and jerk pork sausage (without the sugar or dried onion).
Current Symptoms:
More or less the same: no pain, but still having (smelly) oatmeally diarrhea a couple of times per day with occasional blood.
Next Month:
A few readers have suggested that we might consider one medication or another to try and clear up the remaining symptoms. At this point, we are looking into supplemental medications but haven't found any that really look promising. The 5-ASA class of meds, we've been told, are quite large to swallow for a 4 year-old. Also, the potential side-effects scare us. In fact, the potential side-effects of ALL IBD drugs scare us. In my crazy mind, prednisone seems like a reasonable alternative to everything else. We are investigating whether or not budesonide is a reasonable "bridge" medication while trying to heal his gut with the SCD.
Enteral nutrition is another therapy we've been reading more up on. We're not there yet -- it would be interesting to hear what his GI doc would say about it! While I would certainly try it as an adult, I don't think I could ask my son to do it at this point in time. He likes his morning pancakes too much. Maybe in a couple of years when he becomes more reasonable!
Other news:
My wife and I received an early Christmas present: our son will have another little brother or sister in August. Quite a shock! Especially since we thought we'd taken precautions with an IUD! After the shock wore off, we decided that having the distraction from Crohn's would be good for everyone. It also puts some pressure on us to figure out a sustainable diet that works with our time/schedule and his belly.
Today, we've been on the SCD for 6 months with our son without any additional medications. We made it through the holidays reasonably well, but he is beginning to show signs of burn-out with eating the same foods over and over again. Snack-time is particularly boring, alternating between cheese and squash buttons and yogurt. We're a bit reluctant to give him anything that might set him off, because he seems to be feeling good lately.
Food:
Since I've been home for the last week, we've tried to reintroduce some snacks like fruit leathers (grape) and today we gave him a pickle (Bubbies). While the fruit leathers seem to go okay and he liked the pickle, the pickle seemed to trigger an urgent run to the bathroom! Twice. We'll see, they *are* a little spicy. We're otherwise where we were a month ago: Stage 2 to 3 of the diet. We did have some stuffed bell peppers tonight that were excellent and seemed to go over reasonably well. I stuffed them with sauteed zucchini, mushrooms, tomatoes, onions, and jerk pork sausage (without the sugar or dried onion).
Current Symptoms:
More or less the same: no pain, but still having (smelly) oatmeally diarrhea a couple of times per day with occasional blood.
Next Month:
A few readers have suggested that we might consider one medication or another to try and clear up the remaining symptoms. At this point, we are looking into supplemental medications but haven't found any that really look promising. The 5-ASA class of meds, we've been told, are quite large to swallow for a 4 year-old. Also, the potential side-effects scare us. In fact, the potential side-effects of ALL IBD drugs scare us. In my crazy mind, prednisone seems like a reasonable alternative to everything else. We are investigating whether or not budesonide is a reasonable "bridge" medication while trying to heal his gut with the SCD.
Enteral nutrition is another therapy we've been reading more up on. We're not there yet -- it would be interesting to hear what his GI doc would say about it! While I would certainly try it as an adult, I don't think I could ask my son to do it at this point in time. He likes his morning pancakes too much. Maybe in a couple of years when he becomes more reasonable!
Other news:
My wife and I received an early Christmas present: our son will have another little brother or sister in August. Quite a shock! Especially since we thought we'd taken precautions with an IUD! After the shock wore off, we decided that having the distraction from Crohn's would be good for everyone. It also puts some pressure on us to figure out a sustainable diet that works with our time/schedule and his belly.
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