Busy!

It's that time of year before Christmas: busy! It's also unusually busy at work -- thus, the silence. Been working day and night on projects and anticipate being done on the 22nd. Thanks to Mommy for being Mommy and taking on more kid-responsibility while I take care of work!!!

We're still on SCD 100% and it's still going just okay. We're thinking about adding something to the treatment program for Crohn's. Looking for the mildest extra-dietary treatment available, we're considering into adding Budesonide to facilitate some gut-healing.

We're also looking into enteral nutrition at the suggestion of a visitor. As an adult, I would totally do it. I just don't know if our 4 year-old would go for it. He's given up a lot of food options on the SCD, and I don't think he'd be willing to give up what little he has to be fed a liquid diet. (unless it tasted REALLY good - it would have to taste better than pancakes) It's still up for debate, but the timing may not be right for enteral nutrition.

Holiday Pancakes

This morning we made pancakes. Our son definitely prefers almond butter pancakes and would eat them every morning if we let him. We attempt to limit the amount of almond butter he consumes during a day because too much tends to irritate his gut. I made up some banana pancakes (spotted banana and egg) this morning, which usually gets some resistance since there is no almond butter in them. I cooked them on the griddle as normal, but when finished cooking used holiday cookie cutters to make candy cane, gingerbread men, Christmas tree, and star pancakes. The shapes distracted him enough that he devoured more than his fair share and didn't complain once!

SCD: 5-Month Update

Today marks the day that we've been on the SCD for 5 months (and without meds for about 7 months) for our son's Crohn's disease. We had lab work performed yesterday and discussed the results with our son's GI doc at an appointment this morning.

The Diet
We started the intro diet on July 3, 2009 and have returned to it on two occasions to clear up major flares. According to the Pecan Bread stages table, we are in the range of stage 2 and have flirted with stage 3 foods occasionally. Foods through stage 2 that he does not do well with include: anything apple, tomatoes, asparagus, and cinnamon seems to cause some irritation as well. Almond butter in excess causes more toilet time, though having it once a day seems to go over okay.

In 5 months, we know of two occasions where he's had illegal foods: smoked salmon and an illegal grape juice. Both preceded and seemed to be associated with a bad flare.

Going back to the introduction diet does clear up the IBD symptoms quite a bit, but is beginning to be a drag from our son's perspective. He no longer eats the cheesecake (without prompting from us) and the chicken broth/soup is barely tolerable to him.

Symptoms
After 5 months on the diet, I figured we would be a little better off than we are now with the clearing up of symptoms. In the last week, our "batting average" is: 1 to 2 runny poops per day, every other one has some red in it, and rarely any pain. When there is pain, it's usually around the time that he has a bowel movement. He's had about 2 solid poops in the last 5 months, though we've had some streaks of oatmeal consistency poops. We've learned to gauge symptoms by his mood and he's generally pretty happy. However, he's definitely more lethargic and has less energy than (1) a typical 4 year-old boy has, and (2) what I think he otherwise would have without IBD. Anemia or Crohn's or partly personality? Time will tell.

Blood Work
It came back okay. His hematocrit was a bit low for a 4 year-old at 33.5 (units?), but not overly so given that the bloody stools have not subsided. The GI doc did not want to put him on any iron supplement. His Sed Rate (ESR) was 25, which is a little higher than what it was in July but not too far out of normal. C-reactive protein (CRP) was in the normal range as it has always been and doesn't seem to be a good marker of Crohn's symptoms. White blood cell counts appeared to be high-ish, and they were at a previous appointment in July as well. It's unclear whether or not that is Crohn's-related or related to being a 4 year-old who spends time around other 4 year-olds.

Appointment
Since July, his weight increased from 16.1kg to 16.9kg -- almost a 2-pound increase. Height increased as well and he's pretty close to his growth curve as a baby.

The GI doc we see is the head of the GI department at the Children's hospital we visit. He's the most experienced doc in the department and is quite open-minded when it comes to treating IBD. "Whatever works", was a phrase he has reiterated to us. At this appointment, he was quite a bit less conservative in his approach towards considering treatments for our son. I mentioned that blood in the stool is present 6 out of 7 times and this seemed to get him back on the "I want you to consider XX medication" track. The XX included: Pentasa, Methotrexate, and Budesonide ("prednisone-lite"). I told him that while I'm hesitant to put my son on anything after the 6-MP incident, the real battle would be to convince my wife (who is as stubborn as a mule on this issue). :)

Thanks Commenters

A few weeks ago, it occurred to me that I ought to look more closely at the "comments" settings and I noticed that I'd unintentionally restricted them. You see, we split this blog out from our family blog -- which had open-commenting up until when some guy with a diaper fetish decided to make us a favorite stop to look at the rare picture of our youngest in diapers. Eeewww... I therefore made the viewing and commenting private on the "family" blog.

Anyhow, the comments are now open which is what I had intended all along. Thanks and we appreciate your thoughts.

Blood draw

We had the blood draw this morning for tomorrow's appointment. It went well despite Hector not being the technician. At the very least, no crying with the needle poke. He is such a little man when it comes to pain. He wouldn't even look away from the needle -- even though he told me that he "might whine a little", he stared down the blood technician and wanted to watch the whole thing. Such a boy...

Happy Thanksgiving

We had a good Thanksgiving and made lots of SCD-legal foods for our little boy. He had:

(1) Turkey (no broth-added, organic, SCD) - $50 at Whole Foods (!!!)
(2) Gravy - didn't turn out so well, but we tried.
(3) Cranberry-pear sauce - a MAJOR hit with everyone (substitute honey for sugar)
(4) Almond butter muffins (from Comfy Tummy and elsewhere)
(5) Acorn squash - he didn't want it, but we got a bite or two down
(6) Pumpkin pie - this is ridiculously good and makes our kids CRAZY! (we make with butternut squash)

The adults ate mashed potatoes and stuffing as well.

Since the last flare a couple of weeks ago, we've made significant progress back towards normality. Poops are now runny with a little oatmeal-consistency, predictably twice a day, and with little blood... which seems good to us. Most of all, our boy has been very happy over the last 3-4 days and when HE feels good, WE feel good.

We were concerned a few days ago about anemia (and we still are). We've scheduled an appointment with the Children's GI group for this Thursday. He is NOT looking forward to giving blood despite the fact that the lab technician is awesome. This man is a gentle giant and is absolutely amazing with his effortless ability to draw blood with little kids. We ask for him by name!

A week ago, I would have entertained the idea of putting him on a course of prednisone to clear him up. The last several days have been good and I'd probably be defensive about medications prescribed by the GI docs. I'll post again soon.

Anemic

We are reasonably certain that the bad flare up was the result of getting a hold of an illegal food. The flare subsided after several days back on the intro diet, which our 4 year-old seemed quite tired of by the end of day 2. We've noticed that his face is more pale and that he doesn't have much energy lately. He's also fairly irritable (more than his usual irritable self). We're thinking that blood loss during the flare caused some anemia and are going to have his blood drawn this week to verify.

We're toying with different ideas for food and symptom journals. We kept an online food journal for a while but it got to be a hassle. It would be nice to have something portable and quick... I know, a pen and a notebook work - but I analyze data for a living and want something e-accessible.

I'm going to play with this offshoot of Twitter:
http://www.tweetwhatyoueat.com

It doesn't totally fit, but it's not bad.

Bad Flare

I don't like only blogging when things go badly, but it seems like we are in a serious rut. Our son is at 4.5 months on the diet, and has had two pretty awful days in a row. We're back to the intro diet, which he is losing patience with and going on a hunger strike, and are very close to going back to the Children's Hospital. Maybe a course of prednisone would help get things back on track? I know prednisone makes people feel crazy, but this flare is making us crazy. Going to the bathroom 4 to 5 times a day is one thing, but the blood/mucus is another.

We're still looking for the "bright side" of Crohn's Disease and haven't found it yet after one year. If anyone cares to share their "bright side", we're all ears!

4.5 months, doing okay

We've been at this for a while now. No meds for over 6 months and on the diet for 4.5 months. Our son is doing reasonably well -- feels good and does not complain of tummy pain. I definitely think he went through a 3-month rut that sounds common on the SCD. He seems over that now, though still goes 2-3 oatmeal-consistency poohs a day (with a little blood). That seems tolerable to me and worth the burden of the diet.

On a financial note, we definitely spend more per month on food with this diet. Pre-diet, we budgeted $800 per month for food... though we've now been spending $1200 per month for a family of four. Shopping at Whole Foods and Trader Joe's seems to be adding up! Also, we no longer go out to eat... so we're saving some $$$ on that front.

solid!

First solid(-ish) poop in about 3 months yesterday... something every parent should be proud of! He's been eating like mad lately and generally in good spirits. Though, he did try to fist fight another 4 year-old last Friday at preschool and, as a result, has had all of his favorite toys taken away until he has a completely good report from his teacher.

SCD @ 4 Months

I'm starting to question the efficacy of this diet. He hasn't had anything close to solid poop-wise in several months and the blood keeps on flowing. We've introduced a few things every now and again that adults might recommend staying away from (legal fruit leathers, almond flour) just so we can expand the dietary horizon of our 4 year-old son. We've backed off of the almond flour and will probably back off of the fruit leathers as well.

As far as we can tell, we are following the SCD 100%. The naturopathic doctor has given us two supplements which are a little suspicious SCD-wise (a multivitamin and intestinal repair complex) but I haven't noticed bowel changes one way or another. It's the same poop twice a day with a decent amount of blood in the second accompanied by pain.

If nothing else, he's consistent bowel-wise and with that comes some reassurances. Also, he seems to feel good still and does well throughout the day. In my mind, the risks posed by medicating him seem to be greater than those posed by going with the SCD... I just wish I could see some measurable progress in the toilet!

Down $40

Well, Halloween was fun and as a result of my $$$ for candy deal with our son - I'm out $40! It was worth it though; he had fun and getting candy had a positive connotation without needing to eat it. He was the most polite little "spider" I've ever heard, saying "thank you" with utmost sincerity.

We made some Halloween *candy* that day:

1/2 cup of honey
2 Tbsp coconut oil
1/2 tsp vanilla
1/2 cup of almond butter

Simmer the honey, oil, and vanilla over low to medium hit in a sauce pan for 15 minutes. Then add the almond butter and simmer an additional 5 minutes. Pour into a greased bread pan and put in the freezer. Once hard, cut up into *candy* sized pieces and twist them into some wax paper.

He was in hog heaven and felt so special for being able to open something that looked like candy.

Halloween

Given the SCD, for those who are wondering, we've made our kids a deal: $1.00 per piece of candy. Of course, being a math/stats guy, I realize that this ratio is absurd in the long run and that they could break the bank by the time they hit elementary school. But for now, it seems good -- for every piece of candy you bring home, you get $1 to spend at our local toy store. Keeps some the fun and incentive in it for them - and mommy and daddy get to eat candy after they go to bed!

The Asparagus Set Back

One of the main motivations for documenting our son's experience with the SCD is that we cannot find testimonials other than: (1) I've been healthy for 5 years thanks to the SCD (but don't describe the journey towards healthiness), or (2) that the diet is difficult to follow (mainly from Amazon.com reviewers of BTVC). I really want someone to tell me to persevere and that this is exactly what I should expect....

So after 3.5 months on the diet, while we have a happy med-free kid, we still have the classic IBD symptoms. Slightly crunchy asparagus the other night with homemade hollandaise sauce did not do any of us any favors and added some pain for our son. At least, that's what I think it was!

We still need to get the allergy tests completed that were requested by the naturopathic docter. Who knows? Perhaps he is allergic to something that is hindering progress of the diet.

Not all is bad: he had a homemade "pumpkin pie" (under stage 2, made with butternut squash) for his fourth birthday this week and he just devoured it.

Lemon Ice Cream

Tonight, we had some lemon ice cream that the kids devoured. My ice cream maker was on the fritz so we had to put this into the freezer instead. It turned out more like an lemon Icee instead.

2 cups homemade yogurt
1/2 to 2/3 cup Real Lemon juice or fresh
1 lemon peel graded
1/2 cup of honey

Throw into ice cream maker for 20-30 minutes.

Hamburgers for Dinner

This combination seems to work reasonably well:

Hamburger Patty w/ Shredded Cheese & Guacamole (homemade)
Cantaloupe
Peas w/ butter

Symptoms and CDAI

Many SCD sites and blogs display helpful recipes and tips, but VERY few give information about the other side of it -- does it work?... how are your symptoms?... are you better? While we have no formal baseline values to compare to, I'll begin by saying he's feeling better than he was on medication (6-MP) alone. We'll continue to provide both at this site in order to track our progress both with the diet itself and whether or not it helps moderate Crohn's symptoms in our boy.

SYMPTOM UPDATE (3 months on SCD)
Stool: Our son tends to have 2-3 mushy-to-explosive poops a day (almost one after each meal) and most still have blood in them.
Pain: He has not complained of any stomach pain in quite some time
Energy: It comes in spurts, but seems comparable to his sister's level of energy.
Behavior: He's 3 going on 4 with a strong personality... so disentangling that with bowel irritation is tough! Days with more bowel movements tend to impact his irritability. I'd say this occurs on 1 out of every 5 to 7 days at this point.
Weight: Not sure exactly as our scale is a little squirrely. On our scale, he has gained 2 pounds in three months.

October 14, 2009 CDAI = 38.

Curcumin

We just introduced curcumin into our son's diet yesterday. It's not clear that this formulation is SCD legal, but was prescribed by the naturopathic doctor who also insisted on sticking with SCD. We'll see, he also prescribed FloraStor and I'm holding off on that.

So, in addition to SCD, the list of Crohn's 'treatments' we're on includes:
- multivitamin twice daily
- one drop of vitamin b12
- 1 tsp fish oil, though this will be the first thing I drop
- Intestinal Repair Complex
- 1 tsp curcumin

Nature Doc

He was interesting. He gave my son and I 1.5 hours of his time to discuss our last year and he asked lots of questions. He'll definitely be doing some things that we've wanted to do for a while now, such as test for food allergies and intolerance. He is also checking for vitamin deficiency and celiac disease (another food intolerance that is common among people with Crohn's). The Children's doctors would absolutely NOT do any of this for us even though I asked them to on multiple occasions.

The downside. Seven "naturopathic medications" and $225 later I left the clinic... and that doesn't include the cost of the appointment (which my health insurance will pick up, thankfully). Vitamins, fish oil, curcumin, FloraStor, Intestinal Repair Complex, etc... and he had it all so conveniently there. I understand them all individually, but to throw all of them at us at once was a little much.

You know what? I gave the conventional doctors a shot and they screwed up and didn't know how to treat our son. I'll give the unconventional doctor a shot too and see if he does any better. The funny thing is that he wouldn't talk to me about the one thing I wanted to talk about: the SCD diet. He indicated that he'll discuss things with you after 6 months on the diet, but noted that colleagues at U California have observed greatest effects after two years! Ughhhh...

IBD Internet Radio Link

I think I might like that naturopathic doc. He gave an internet radio broadcast about Crohn's/IBD a few weeks ago and we may be more on the same page than I originally thought:

http://thedispensaryonline.com/iradio/

The above links to a history of internet radio broadcasts for anyone interested in other conditions or health topics and are interested in natural therapies.

Going Naturopathic

We have an appointment with a naturopathic doctor this week for our son and his belly. We've been on the Specific Carb Diet for just over 3 months and though it seems to help moderate his symptoms, has not "cured" him symptomatically. In full disclosure, backers of the SCD diet state up front that it can take months to 2 years to see full benefit. We're convinced that diet has something to do with Crohn's symptoms, unlike 95% of the GI doctors out there, and will keep going on the diet unless things go really south or he has another hospitalization. Mentally, the diet is easier to cope with as a parent when compared to giving a 3 year-old immunosuppressive drugs. Heck, the swine flu that is going around right now might have easily killed our son if he was still on 6-MP.

We're going to see the naturopathic doc for help with the diet and more for some sort of confirmation of our experiences with it. We'll see. The dude is a bit eccentric and my analytic thought-process may need to take a back seat while talking to him. I hope he can help...

Yuck

Our son's tummy pains have us all feeling cruddy. Not sure what to do about this... it's testing our resolve and patience and mental health. We used to think that all people get in life exactly what they are capable of handling. I think we've reached that point -- enough already!!!

SCD Intro: Part Deuce (literally)

Not sure if our son was experiencing the 2-3 month setback that sounds common on the SCD, but he was pretty messed up last week and on into the weekend. He hasn't had anything "illegal" to eat in a long time, and the funny thing is that he would tell on himself if he ever did. He eats quite a bit of fruit (cooked) -- maybe that messes him up a bit. (?) In any case, the blogging gets quiet when that happens as we focus in on him...

We decided to go back to diet square one for a day to see if we could "fix" things. It's nice to see instantaneous, positive changes in his symptoms with the intro diet. It's comforting to know that we (might) have something to rely on when he gets into digestive trouble. The intro diet is definitely not a long-term diet, unfortunately, but hopefully we can figure out whether or not it was a food we'd given him that screwed him up - and avoid it in the future.

It's tricky and stressful. There are a lot of SCD websites out there. There are a lot of pediatric Crohn's sites out there. However, there is not a lot of information about treating Crohn's with SCD among kids! SCD would be hard for other kids, but our son's regimented personality makes it possible for us.

Nutritionist

We met with a nutritionist at children's today. The best part of the meeting was weighing our son and seeing that he gained weight since the last visit. On average, I'd say she's not very helpful. She compliments us/our son on eating a good diet... but can't/won't help us figure out how to get the blood to go away. We're going to get back to food basics this weekend to hopefully clear him up. It's disturbing us, even though he says he feels good. There is a naturopathic-trained doctor near my office that I may go speak with. He recommends the SCD diet books and I wonder if he sees pediatric patients.

SCD Update

We just surpassed the 6-week mark on the specific carbohydrate diet. In summary, we think it is working for Cyrus and we will continue on the diet. He has energy, is happy, likes what he's eating so far, and is mostly symptom free. I still think there is something we give him (probably this particular mayonnaise) that irritates his GI tract, but we're learning and documenting his food intake and symptoms.

It is apparent that Cyrus feels as good now as any time in the last 10 months. The time that he was on medications was absolutely rotten (for him and us) and I don't know how I'll ever voluntarily submit him to it again. Of course, I'm always the skeptic and will be vigilant for signs that things are going wrong with the diet. However, I've observed enough progress both symptomatically and in his overall attitude to think that inflammatory bowel disease is affected by what one eats. (despite what the ccfa.org official website advocates)

CCFA.org kind of ticks me off with the message they put out. Every corner of the foundation's website is littered with statements like, "no matter what, take your medications". I get it, to some extent. But to put out a blanket statement of guilt for not taking medicine (crappy as they are) seems wrong...

The SCD is no picnic, I won't lie. Cooking, cooking, cooking,... if you don't like cooking, it ain't for you! Planning every single meal of every single day is a chore. Going out to eat is not an option (yet) with the kids. Every so often, we put the kids to bed and bring home some Thai take out or pizza! On the bright side, we spend less money on going out to eat -- and the kids were never really that fun to eat out with anyhow!

Stomach Update

Cyrus seems to be doing better today. Although he wasn't hungry for too much, he did end up going to the bathroom which hopefully means he doesn't have an obstruction. We had a friend over this morning to play and he went golfing with Daddy this afternoon and seemed to be in pretty good spirits despite being tired from being awake late last night.

Throw Up

Cyrus tossed his cookies (well, cheese) about an hour after he went to bed last night and was complaining about stomach pain from the afternoon onward. For most kids, this would mean something bad was eaten or didn't agree with their stomach. For Cyrus, we have an additional more serious possibility to think about: bowel obstruction. This sucks. I'm taking work off today to keep an eye on him in the event that we have to take an unplanned trip to Children's.

This is life with a kid with Crohn's. Every single thing that might *ordinarily* happen to a 3 to 4 year-old (e.g. food poisoning), potentially has an alternative Crohn's-related explanation. Distinguishing between the two is a daily challenge and leaves a constant knot in our stomachs.

SCD - sed rate update

I found out today that one key marker of inflammation (ESR) had gone from 29 pre-diet (out of range) to 17 (close to within range) after 3 to 4 weeks on the SC diet. That's good in my mind given that he had values near 7 after months of prednisone. Cyrus had a great day today and was the happiest I've seen him in weeks. He's feeling good right now. Tonight we listed off all of the foods we had prepared for him recently and he says, "I like all of those foods!". That seems to be the consensus... he's not missing out on much. Mommy and Daddy are losing weight while he is gaining weight... All by eating healthier.

Check-up

To start, Cyrus gained about a pound in three weeks on the diet. A pound has been hard to come by lately. His C-reactive protein levels were normal pre-diet and remained normal post-diet. The Erythrocyte sedimentation rate was high at his pre-diet appointment, and unfortunately today's ESR was not ready for us by the end of his appointment. His doc mentioned something about his creatinine levels increasing and that was good... my hunch is that the 6-mp slammed them down and they are now coming back into the normal range.

Overall, it was good doctor's visit (despite having to wait for 90 minutes between getting blood drawn and for the doctor). His doc is very supportive of us trying the diet and he seems to believe there is something to it. He and I spent about 10 minutes talking about study design, at which point I told him he needed to fill out my biostatistics request form and make an appointment to come see me! Though, it's pretty much an impossible study to conduct and that's why there's no "evidence" in the literature that the diet does or doesn't work.

Good fun. Avocados today, nut butter on Thursday!

Post-SCD Check-up

Tomorrow we have our first post-SCD check-up. We anticipate getting some bloodwork back and comparing it to the pre-SCD bloodwork. If I had to wage a guess, I'd say that most of it comes back the same. Cyrus still has symptoms, even though he didn't for a short period of time. We'll see... he feels and looks good, though his attitude seems to suggest that his stomach is irritating him.

In any case, he's been medicine-free for almost 3 months and we're sticking with the diet because we're stubborn as hell.

SCD Update

The SC diet was going very well and we were seeing good improvement... until applesauce, and then me making the mistake of feeding Cyrus a few bites of smoked salmon on vacation. At least, that's my guess as to why things have gone wrong since last Thursday... it's the only "illegal food" that he's had (I didn't know it was illegal at the time I gave it to him). The applesauce we should have guessed would not work well based on previous experience with apple juice. I did make some pear sauce recently that *seems* to have agreed with him more, but then again - Cyrus hasn't been the same for a week.

We may start over this weekend and flush his system out once again. Theoretically, the harmful bacteria that this diet aims to eliminate should eventually die off by not eating anything illegal -- but the intro diet worked so well that it's almost worth starting from scratch again. We've really only added into his diet: legal hot dogs, mayonnaise, ripe bananas, applesauce, and pears. Tonight he got some baked zucchini as well. Going backwards doesn't seem like a stretch at this point. We'll see...

SCD: Intro Diet Success

Well, we made it through the weekend on the SCD intro diet consisting of plain eggs, salmon, plain hamburger patties, a pretty tasty homemade chicken soup, a homemade cheesecake (that Cyrus liked, but I thought was nasty), jello, grape juice popsicles, and grape juice. Three days of that! On the third day, we added in homemade yogurt as well. I've got to say that the homemade yogurt is pretty awesome. We tried to feed Sage some store-bought yogurt and she didn't want much of it -- I could not believe how sweet it tasted!

Today we're adding bananas back into the diet, and then cheese. Later this week, hopefully a vegetable or two.

So far, we're seeing some progress. After the first day of the diet, no more blood and only going once a day, but still not quite solid. Apart from being more hungry and tired of eating the same foods over and over again, Cyrus seems to be in good spirits and feeling GI-good. Keeping our fingers crossed....

Cheating

PS - I've been pretty good about not cheating on the diet and on Cyrus. I did have a bowl of popcorn tonight, but I'd like to say that it's nothing in comparison to Mandy's chocolate bar! When eating lunch at work, I broke away from the diet once or twice this week and felt guilty about it... the last couple of days though, I've decided to be more hard core with it so that I can better understand how Cyrus might be feeling.

SCD: Day 6

Those were the good old days, Sage...

If I had to do this again, I'm not sure I'd practice with the post-SCD diet prior to doing the introductory diet. After 6 days, I feel fine - but the thought of depriving myself (and Cyrus) of the remaining SCD food-pleasures seems daunting. Plus, I don't think the SCD diet will work without doing the intro diet... and Cyrus' tummy seems to concur with this. The amount of fiber consumed through fruit, vegetable, and nuts on this diet seems contradictory to what one might expect for someone with Crohn's. We'll see how it works out.

In the mean time, thank goodness for: Lara Bars, homemade yogurt, Stretch Island fruit leathers, and (maybe) pancakes made with coconut flour. We spend most of our evenings cooking after the kids go to bed and anything that we do not have to make ahead of time is awesome.

SCD: Day 4

We've been on a pre-introductory specific carbohydrate diet for the last four days and things are getting better now that we have the yogurt maker in hand. Today, I don't think we ate anything "illegal".

A side effect of the diet has been a 40% reduction in insulin for me, and I'm still having low blood sugar all day long. Tonight I was watching Sage alone and my blood sugar dropped to 36... not good. Need to keep better track of that...

I took our son to Children's for an appointment today to break the news that I wasn't going to put him on any more medications and was going to attempt the SCD. I could not believe the enthusiastic response I received and genuine support. It was a big relief to have the GI doc supporting our decision and actually putting us into contact with other people who've chosen the same route. Phew...

Specific Carbohydrate Diet

We've embarked on a new form of therapy for Cyrus' Crohn's disease: the Specific Carbohydrate Diet. We're in the first couple of days of the diet and are very overwhelmed. We need to persevere though if it is to have any benefit... otherwise we will be back at Children's where they serve up one nasty drug after another. We have not been back for the "what's next" follow up visit since Cyrus' overnight stay. We've been avoiding it and wanting to see how things would go without the meds. Symptoms are back and we're now desperate. The SCD diet has the highest (anecdotal) rate of success of all therapies, but requires a moderate to large diet adjustment. For an adult, no big deal... For a three year-old... big deal!

I'll report our trials and tribulations here - wish us luck...

He's Out

We managed to spring Cyrus from the hospital yesterday afternoon and that made him pretty happy in spite of him still running fevers with a pin-prick rash. The diagnosis: a very unsatisfying non-specific viral infection (of course, complicated by Crohn's).

What follows next is yet to be determined, but at least everyone is home for Mother's Day.

In The Hospital

Our son has had his fair share of doctor's visits and checkups in the last six months, and now gets a 3-4 night stint at the Children's Hospital. Right now, the doctors aren't totally sure what is the matter with him - but it seems related to the Crohn's drug he has been taking (6-MP). The drug is designed (well, off-label used) to suppress his overactive immune system. As such, it seems to make it difficult for Cyrus to fight off the common cold. Alternatively, it might make it easier for him to pick up something that most of us might not get. Either way, he's been spiking fevers for about a week and we can't seem to keep them down without additional medication.

My wife and I are alternating nights at Children's, and our son isn't allowed to leave his room until they rule out every infectious disease under the sun. As a result, everyone we see in this "quarantine" comes in with masks and full armor against our son (who hasn't managed to kill us or his sister yet).

Our son is just a tough little kid and is taking this like a champion (after some initial consoling and reassurance that we'd be back home some day). He's a good boy and we love him very much... hoping that he gets better soon.

Tuesday, December 2, 2008

Our son has developed some gastrointestinal problems and we’ve spent quite a bit of time at the Children’s hospital over the last few months. He had a colonoscopy two days before Thanksgiving and they found some inflammation / irritation in various places. At this point, it’s unclear what that means and we’re waiting on some tests/biopsies to come back. The best case is that he has nothing at all, and the worst case is that this he has a chronic condition. I think there is a 50/50 chance of either at this point.

I’ve taken the business with our son pretty hard because I understand what it’s like to live with a chronic condition -- I’m hopeful that he doesn’t have to do the same at the age of 3.