The Diet

*This may bore you to tears unless you're interested in the food/gut/brain connection.

The diet that our family is using now...well, it's a pain. When I first looked at the list of legal/illegal ingredients I knew there was no way we could ever do it. That was about a year ago. I think the diet is just so difficult to follow that you have to reach a certain level of desperation before you're willing to make it work. We knew we had a serious problem on our hands when M ended up in the emergency room last year. Despite treatment with Miralax, her colon became so impacted and distended that her urethra was compressed and she was unable to urinate. We knew this diet could make a dramatic difference in her health, but with the pending move to Hawaii and new baby on the way, we just didn't see how it would be possible until life settled down.

The Specific Carbohydrate Diet (SCD) is a diet designed to treat people with Ulcerative Colitis, Crohn's Disease, Diverticulitis, Celiac's Disease, and Irritable Bowel Syndrome. The premise is that many of these disorders are caused by an imbalance of gut flora; that the beneficial bacteria in the gut that promote health and digestion are being overrun by pathogenic bacteria. The pathogenic bacteria thrive on sugars and starches and grains, so those foods are eliminated from the diet. This includes wheat, corn, potatoes, sugar, milk (lactose is a sugar)... The list of "illegal" ingredients is quite extensive. The good news is that there are several GREAT cookbooks out there based on the SCD. We had good luck just experimenting with a few recipes from the books until we found enough to incorporate into our meal-time repertoire.

The Gut And Psychology Syndrome Diet (GAPS, for those of you I haven't lost yet) is based on the SCD, but it's *tweaked* a little bit to treat conditions such as Autism, Schizophrenia, and ADHD. Since many people with those disorders struggle with serious gut issues, parents and providers discovered that many of them found relief on the SCD not only from their intestinal symptoms, but from their neurological conditions as well!

When I first read the GAPS book for M's sake, I was struck by many of the conditions they described: ADD, clumsiness, eczema... I thought to myself, "Why, this isn't M! This is A they're talking about!" So I actually made A our guinea pig for the diet. He has never struggled with any gut issues, but he will spend 13 1/2 hours folding a single load of laundry. I wanted to get all the kinks ironed out before I put M on the diet, because M just really isn't verbal enough to tell me how she's feeling physically for me to approach the diet confidently. To be totally honest, I really didn't expect to any changes in A from the diet. The whole thing just sounded too far-fetched. So, with a healthy dose of skepticism, we started the diet in early December '09. He seemed to be doing better. He was more focused and able to complete his schoolwork and chores in a reasonable amount of time. He was DEFINITELY less lazy and less whiny. He was also more fun to talk to and do things with and wasn't getting hyper-fixated on odd subjects like before (He must get that from me. Sorry, A).

Confirmation came when one morning about a month ago A woke up completely covered in eczema and was a whiny, ADD mess. We quickly discovered that he had been *poisioned* with illegal foods twice within the past 24 hours due to our negligence in label-reading, and we had our old pre-SCD A back. So we adjusted our pantry accordingly, and in a few weeks again saw very positive results with him. The change was so dramatic! Even my parents, who got to spend time with him in Colorado this week commented on what a completely different kid he is now than a couple of months ago. It's fascinating how the foods we use to nourish our bodies can have such an impact on us!

We put M on the diet (sort of an SCD/GAPS hybrid) last month, and she seems to be doing well. There's an introductory phase we're supposed to go through for maximum benefit before doing the full diet, but I'm waiting to start the introduction until the end of March. I'm definitely still in the learning phase though and making mistakes. It's especially sad when you know your mistakes will hurt your kids. For instance, bananas with brown spots are allowed because they are less starchy than yellow/green bananas, but apple bananas (those cute little ones) are not allowed regardless. I couldn't figure out one week why M was having such horrible intestinal issues after making such good progress until I read something online about the banana issue. And those little baby carrots? ILLEGAL. They are washed in chlorine, which is not what you want to expose your good gut flora to. Tap water? ILLEGAL. Chlorine again. Filtered water is fine, though.

I'm gradually finding my groove. We do devotions, music and math in the mornings, then the rest of our school day takes place between 2:00 and 5:00. There is really not too much you can cook quickly on this diet with all the shredding/chopping/grinding/blending you have to do, so if I start dinner at 5:00, it won't be done until 7:00 or 8:00! I'm trying to do more planning ahead by bulk-freezing and utilizing the slow-cooker. Drive-through and pizza delivery are not options. I try not to dwell on that because I'll start feeling sorry for myself-sometimes I just want to order a pizza, ya know? I've found a few slow-cooker recipes I'm going to try to use more of, and I'm on the lookout for more! We try to keep plenty of foods on hand for quick snacks-fruits, veggies, nuts, yogurt (homemade yogurt is virtually lactose-free).

I took the girls camping this week, and we just brought a cooler of chicken thighs, hamburgers (sans the bun of course), apples, oranges, carrots and cucumbers with us. A and P went to Colorado with Hubs this week, and I packed fruit, nuts and SCD legal cookies for A to take on the plane, and e-mailed recipes to Mom a week prior to give her time to plan it out (Thanks, Mom!).

Tonight we venture out for our first restaurant experience since M began the diet. I called Hale'iwa Joe's last night to see if they could accommodate special dietary requests. The chef is sitting down with us at 5:00 to go over the menu.

Hard, yes. But, Do-able.

Updates All Around

Well, it's been a busy few weeks at the Hale Mele Academy! We had P evaluated by the speech therapy department at the local Army hospital who reported to us that he is about a year developmentally delayed in ALL AREAS. Are these people eager to label my kids, or what? She asked me at the end of the evaluation if P's behavior during the evaluation was typical, and I answered yes, as in: "Yes, it is very typical of P to run around in circles laughing at himself instead of sitting quietly and cooperatively." Really, she should have asked, "Does P actually know how to do these activities/say these words/follow my directions but he's just too busy being a 2-year-old to be bothered?" Then I could have answered her appropriately. She referred P to the Developmental Pediatrician (the one whom M was already slated to see) as well.

Yesterday we spent the entire morning at the Army hospital with the Developmental Pediatrician. He was a nice man who managed to get my little people to cooperate with all sorts of procedures. He agreed with me that P is developmentally normal with the exception of some distorted speech patterns. I was pretty proud watching my little guy sitting there putting together all these puzzles and stacking blocks and things. But it was pretty painful to watch when it was M's turn. Dr. C had some pretty simple drawings (horizontal lines, vertical lines, and circles) that M was supposed to replicate, but she just couldn't do it. I wanted to help her so much, "Look, M! See the direction the line is going? Can you do it that way?" But I was a good m.o.p. (mother-of-patient) and didn't interfere with the testing process. I talked to him about some of the learning challenges we saw in M, and ways we've been able to help her learn. He recognizes they both need speech therapy, of course, but he thinks it's very likely that M will catch up with her peers in time-provided we take the responsibility for helping her meet those educational milestones either at home or at a preschool. I have actually been amazed at her progress just this last month. In the past we've worked with her regularly, but haven't really pushed the issue because we knew she was a slow learner and didn't want to cause her frustration. This month we were determined that M would finally learn her colors, so we worked on it in every way we could think of every chance we got. Not only did she learn her colors this month, but her shapes, too! So we're feeling optimistic all around. We're to follow-up with Dr. C in 6 months.

We're still in quite a conundrum regarding speech therapy. Our insurance company will not pay for speech therapy services since the schools offer services for free. The school district here says that their special education services are only for public school students, not for homeschoolers or private schoolers. And we've already discussed why we don't want to send M to preschool. I'm planning on scheduling a meeting with the special services coordinator at the school, but I would like to wait and hear back from the special needs coordinator with the Home School Legal Defense Association first.

In the meantime, our family is soaking up the gorgeous Hawaiian weather. R is out kayaking to an offshore island with her dad for a picnic today. A just got back from a trip to Colorado with his Dad and P, and is now wandering around the house because he has "nothing to do". It's nap time for all the little people in the house, and I am catching up on my never-ending to-do list today.

Speak With Conviction

An Update on M

Our sweet little M was born on 6/06/06. That would make her 3 1/2 now. She has always been on her own time table, which didn't concern us too much at first, but this last year we've watched her fall further and further behind her peers.

To start with, she really only started talking recently, and what she does say is unintelligible. She's had two developmental evaluations. The first was done a year ago, and it showed her to be behind on cognitive skills, fine and gross motor skills, and expressive and receptive language. The second was done in December, and it showed pretty much the same results. Her IQ was measured to be 74. An IQ of 100 is considered average, anything below 70 is considered mentally retarded, so M's IQ is considered "borderline."

We had her evaluated through the school district, because this seemed more convenient at the time than driving across the island to Honolulu. Because M qualifies for special education services, we now are feeling pressure from the local school district to enroll her in their Early Intervention Program, which would entail sending M to school on a bus every day (although we could arrange to drive her) for her special preschool program which lasts ALL DAY LONG. To be honest, I can barely imagine sending my 11 year old away all day, much less my 3 year old! I know other people do it and don't have a problem with it, but it just grieves my heart to think about. M is part of our family, and we feel she belongs with us. We know she needs therapy, but we're not willing to send her away all day, every day to get it as long as we can find alternatives.

We've talked with many other families who all say the same thing: the "intervention" done at the school takes less than an hour a week, the rest of the time is just crafts and stories, which we do regularly at home anyway. And I don't understand how being in a room all day with a group of other children who don't talk will really help M's speech skills blossom, when there is much more normal chatter here at home.

Hubby and I have been looking into alternatives, but it seems we just keep running into brick walls. We just keep getting told that it's the school district's responsibility to help her with these issues. I don't understand this. When my 9-year-old needed speech therapy, the school district didn't have to be involved. Is this just a Hawaiian thing?

In the meantime, we've been referred to a developmental pediatrician, who is supposed to make a prognosis for M's future (I'm optimistic, but still not really sure I really want to know?), and may be able to help direct us to some local resources. Unfortunately, they won't be able to squeeze us in until March.

And as odd as it sounds, my ray of hope right now is that P (who mimics M's distorted speech) will qualify for speech therapy as well, because therapists come to your house if you're 2! Then perhaps we can convince the therapist/her supervisor/the powers that be to treat M at home as well, since it would be more convenient for all parties.

Lastly, an update on M just wouldn't be an update without at least briefly mentioning her intestinal issues. Little Miss M has suffered from constipation pretty much since she started solid foods in her infancy. It has been horrible, with lots of pain, discomfort, bleeding, trips to the ER... She was recently seen by a gastroenterologist who pretty much just told us to keep upping her dose of Miralax, which I think is pretty much standard nowdays for allopathic physicians (sorry, medical friends/relatives of mine). Instead of trying to find the cause, they just medicate the symptoms. So in an attempt to help heal our little sweetie-pie, we started her on the Specific Carbohydrate Diet (SCD)/Gut and Psychology Syndrome diet (GAPS), which is complicated and time-consming to explain, and with nap time almost over, I'll have to save it for another post.

Happy Birthday, P!

We celebrated P's 2nd birthday with a special scd cake: Hawaiian vanilla bean cake with banana cream cheese frosting. Yum!

A little help from his over-eager sister

Happy, happy, happy birthday, sweet boy!

Hello and Welcome

Hello, dear friends!

It's good to get a blog up and running again. Now that we're living in tropical paradise, we're finding it harder to keep up with our friends and family, and LOTS of things have happened to us this year that we would like to share with y'all.

One of the first things you'll notice is that all names have been changed to protect the innocent... and the not-so-innocent. This is the internet after all, and I would like to be cautious about publishing my children's names in cyberspace. I debated about whether to make the blog private and only "invite" people to view, but I knew that I would inadvertently leave somebody out and then I would feel bad. I was also hoping that someone out there who has shared similar experiences may stumble across this blog and be able to share their wisdom and experience with me. So this seemed like a good option. I tried to make the names as close to the original as possible, to avoid confusion for my readers who know our family.

Here is the cast of characters:

J-Husband and father. Air Force pilot extraordinaire.

Z-Wife and mother. Undefeated diaper-changing champion of the world (OK, not my real initial, but we have some overlap going on and I have to differentiate).

R-11 years old

A- 9 years old

M-3 1/2 years old

P-2 years old

Q-3 months

I'll try to post as time allows, but to be brutally honest, time doesn't really allow. I would recommend subscribing to my RSS feed so you don't actually have to come "visit" the blog, but you're welcome to follow along (or not, as the case may be) however you choose. :)