Update 06-12-10

Well summer is in full swing and we are struggling to settle into a summer routine. June is going to be one of the busiest months we have had yet full of traveling, birthdays, a wedding, company, a reunion, and father's day. I am praying that once July arrives we will have survived and some rest will be in sight.
Well many are wondering what is going on and I apologize at the tardy update! I thank everyone for their prayers and we really feel God's presence. The middle of may we did some food allergy and sensitivity tests on the boys as well as a stool analysis on Sully. The results of the food allergy and sensitivity were quite surprising as Lochlan had low reactivity to no reactivity to the 93 foods and 63 inhalants- quite a different story from his skin test. My only thought is that the specific carbohydrate diet has helped and also the antibiotics for the bacterial overgrowth. Sully however showed extremely high reactivity to MANY foods. Included pretty much everything has been eating lately- beef, eggs, cheese, almonds, all dairy products and wheat products, yeast and much more. With such a high reactivity it really suggests leaky gut and not true allergy. This could account for much of the OCD symptoms and anxiety symptoms as well. Since we have removed the foods of which their proteins are leaking into his blood stream-he is actually doing much better behaviorally. Sully stool test results also really surprised us as he has the presence of occult blood (this presence means there is probably bleeding in the small intestines-could be ulcers/colitis/inflammation...), extreme yeast overgrowth and bacterial dysbiosis-meaning he has more bad bacteria than good in his intestines. So we began treating the yeast with Nystatin 4 times per day we also added in Uva Ursi to treat the psuedamonias bacteria (bad bacteria). He continues to be on a low sugar/carb diet and we have successfully removed the foods in which he is sensitive. We have had one major set back as he has recently developed a fever and abdominal pain. I will consult with our doctor on maybe backing off the nystatin for a day or two and using garlic or some other natural remedy possibly to minimize symptoms of the die-off. I will keep you all posted.

As for Lochlan, he will be having a stool analysis done this week as he is off his antibiotics for now. We will be starting the antibiotics again as he is actually doing better than he ever has with the distention and stooling. He is going everyday and the distention is much more minimal than what it was. I believe the 2 weeks of antibiotics have killed enough bacteria that if we go on them again maybe we can kill the overgrowth and begin to heal the lining so that it will regain function. We are praying that the bacterial overgrowth is the culprit for all of his distention, malabsorption and dysmotility and if we treat it then we can resolve all these issues. There is hope! Meanwhile the dysmotility testing is actually closer to 9-12 mo out and I am happy that we have some time to entertain this idea before having to put Lochlan through more testing. His vitamin levels were okay and as long as he can keep his weight up we won't have to do anything drastic. He is still not eating great but we are working on it. His follow up with our GI doctor isn't until late July so we have some time to see if the antibiotics will work and look at the stool results.
Well that's about it for now. I will keep updating and thanks for all your support and prayers.

Small bowel series and Dysmotility Consult in Kansas City

Sorry it took so long for an update. 600 miles, 3 different states and 2 different Children's Hospitals and we are finally home for now.
On Monday Lochlan had a small bowel series with follow through in Omaha at the children's hospital. Our dr. wanted to look to see if there were any anatomical problems with Lochlan's small bowel that could account for the chronic distention and other problems. He struggled with drinking the barium but after much persuading and counting each sip he did finally get enough barium down to complete the test. We do not have any results yet but are waiting to hear. Once he gets these results then we will move forward with scheduling more tests to figure out what Lochlan is having trouble digesting.
On Tuesday we were on the way to Kansas City to mercy children's hospital for our Dysmotility consult. The good news is that since Lochlan is not throwing up his food there is a really good chance we can fix his dysmotility issues. He did lots of blood work and took some xrays. Lochlan will need a colonoscopy and some sort of esophageal test (I am not sure of the name) he will also need dysmotility testing but that will be a few months out. After he gets the blood results he will try to get with a dietitian and see if we can't figure out foods that he can tolerate so we can avoid the feeding tube. Lochlan has been having lots of anxiety about the feeding tube and he has started having nightmares, we are pretty sure they are about feeding tubes and needles as he is crying about them in his sleep. So we are really trying to minimize his trauma as he has been through tons of testing already and there is so much more to do. The specialist in Kansas is only a dysmotility specialist so we will continue to work on the malabsorption issues and bacterial overgrowth issues with our dr. in Omaha.
So we are waiting and again and really trying to be patient. Lochlan's distention is still causing issues and we are praying that we can figure out a way to help him while we endure the wait. He was having so much diarrhea on the antibiotic (this was the second one) that we had to take him off it again as he was becoming dehydrated and his body could not physically handle the stress of it. We did do some other testing for food sensitivities through our regular doctor and we are anxiously awaiting those results too. So I guess thats about it for now. We will continue to wait and keep updating, thanks to all those who are praying for us. We can really feel God's presence and assurance that he will work this all out and we just have to rely on him and his timing.
On a different note- Lochlans love of movies has really blossomed lately and he and Sully crack us up by re-enacting scenes from movies they have seen. One of his favorite in particular is Astroboy. And in one scene they are standing at the door, they knock and another girl opens a slot and asks for a password. The other girl replied "don't make me hurt you!" and the girl behind the door says "i guess that will work" and opens the door. Sooo. We were at childrens in kansas city and I took Lochlan into the bathroom. He ran ahead and locked the stall door before I could get there. I told him to open the door. He said "what's the password?" I said "Lochlan open please". He said "say, don't make me hurt you, mom." Normally this wouldn't bother me, but there just happened to be another woman at the sink washing her hands. She smiled as she heard me tell my four year old "don't make me hurt you". I was so embarrassed as I had no idea is she had ever seen the movie or if she would have wondered where a small child would come up with something like that. Anyhow, thats all it took and he opened the door.

Update 5-15-10

Well, the good news is Lochlan continues to hang in there despite what difficulties may come. On Friday the 14th I spoke with the specialists office in Kansas City. I wanted to make sure that we knew where we were going and that we would be able to go an get all the testing Lochlan would need that week. Motility testing is quite extensive and it measures the stools transit time as well as tests the muscles and so forth. This kind of testing can take days and so I wanted to make sure I had a good idea on how long we might be in KC. Not to my surprise, the receptionist told me that we would only see him for a consult on the 25th and any testing would be scheduled for another time. Currently they are scheduling motility testing 3 months out. I asked again if there would be any way to get it sooner and she told me the procedure room that it is done in is booked out that long. I had a feeling this would be the case. I called our doctor back in omaha and asked again if there was anyone else we could see or any other way to get in for the testing sooner. Their answer was no. Lochlan's distention has been getting bigger little by little and he is starting to back up, eat less and complain of tummy aches. We had planned to do some stool testing on him in a couple days to see what exactly is going on in there, but his doctor in omaha wants him to try the other antibiotic (gentamiacin) now and see if it will help his distention. We cannot do the stool testing as long as he is on antibiotics. So we will wait with the testing, and try the antibiotic.

It amazes me everyday how he can be so distended and uncomfortable and still have such a love for life and sense of humor. Despite his ongoing tummy troubles Lochlan is living each day enjoying what comes and looking forward to tomorrow. No wonder God instructs us to be like children. Imagine what our world would look like if everyone had this kind of determination and love for life.

Update May 13,2010

Well Lochlan is still hanging in there. The distention is getting bigger and bigger each night and we are just praying that he continues to stool some to relieve some pressure. His appetite is getting less as the food is beginning to back up in his intestines and his sleeping has been getting worse as well. He has been complaining of tummy aches and says he unable to eat more than a few bites at a time. We are trying to get as many calories in him as we can, but I fear that he will continue to drop weight as he is not eating enough food. We are still hopeful that he will be able to hang in there and we can avoid the feeding tube, until the 25th of May (which is when the Specialist in KC worked us in sooner). We are so very thankful for his mercy on us as our original appointment was June 17th. Lochlan's behavior has been really difficult as well as he is stimming more and more, and his impulsiveness has really been trying. We will know more as time goes on and if he has dropped too much weight or has stopped stooling. We have an appointment in Omaha on Tuesday the 18th and our dr will decide then about the tube (if not sooner if things get much worse) if we can wait until the 25th to see the specialist. Thanks to everyone for your prayers.

May 7, 2010 Update

Well our trip to Minneapolis' Integrative Medicine Clinic was very good. We were greatly impressed with their knowledge and were able to come up with some very good long term treatment plans for the boys. However, nothing for short term and we are still seeking answers for Lochlan's inability to digest and move solid food and his chronic distention. We will do more testing to check for more food sensitivities and what kind of bacteria/yeast that is in Lochlan's gut. We will also do the same tests on Sully to rule out any food sensitivities or bacterial overgrowth as he has some flags for both. The team had some great ideas such as aroma therapy, biofeedback and other things such as accupressure as well. We have a step by step plan to help Sully with his anxiety and it will not be quick but in time I really feel like we will be equipping him for life. The nutrionist had great ideas for us to help Lochlan to transition from formula when he is ready and we feel like once we clear this last battle with his bowels we will be set with a plan for the future. The team was great and both Cody and I were very impressed!

However not everything went great on the trip, during the last couple weeks Lochlan's behavior and "autistic symptoms" have escalated to numbers we haven't seen in almost a year. He was a nightmare on this trip and the new surroundings posed huge struggles for him as he could not overcome his obsession with the doors and lights in our hotel room. He is more aggressive and self injurious and the only thing we can think could possibly cause such an increase in these types of behaviors is the whey in the peptamen. The peptamen jr. contains milk proteins and this could possibly be our culprit. So, back to neocate formula we go. (this is the same formula he was weaning himself off of last fall on his own!) Our doctors are doing what they can to get us in to the motility specialists sooner than June and we may possibly be looking at taking him to the Nationwide Children's Hospital in Columbus, Ohio. As of Thursday he is no longer drinking the formula and even one ounce is a battle. After conversing with our team of doctors we have come to the conclusion that if he begins to back up and become distended as he was before the formula we would have no choice but to put a feeding tube in until we can get into the specialists. So now we sit and wait and pray for a miracle.

May 2nd, 2010 Update

I just wanted to post an update on Lochlan. Monday of this last week Lochlan had more testing done in Omaha. This test was a hydrogen test and the results concluded that Lochlan has severe bacterial/yeast overgrowth in his small intestine. The doctor started him on very strong antibiotics and he will alternate every two weeks between the two. We are not sure how long he will need to be on these antibiotics it could be years. Lochlan is on formula for approximately 90 percent of his diet currently and we are struggling to keep him drinking and having a hard time getting the calories in. His GI tract is still unable to digest most foods and so it is very important he drinks the formula or we could be looking at feeding tubes. The formula he is on for digestive reasons is a feeding tube formula and it is primarily sugar (sucrose) and whey protein based so the formula is feeding the bacteria and yeast we are trying to kill with the antibiotics. So we are really praying God will give us direction. We are going tomorrow to Minneapolis to the children's hospital there to see their integrative medicine dept. We are hoping they will be able to give us some insight from their expertise and maybe bring some solutions to the table. We will see a nutritionist/naturalopathic doctor on Monday and the director of the dept (who is a GI specialist) and a Psychologist on Tuesday. They are a team approach and they look at the total body for health. We are asking for wisdom for both Cody and I and the doctors we are going to see, that their eyes would be open to Lochlan's needs and we might find some solutions for him. Also Sully too will see these doctors and we are praying that they will be able to help us manage his anxiety which is becoming more and more overwhelming. God is good and he will see us through. Thank you for all your support and prayer. Melissa

Update

Just a quick update.

Homeschooling is going well. Sully seems to be learning so I guess I am doing something right! I never understood the difficulty of homeschooling until now but I am enjoying all the time we have together and seeing him learn new things and be excited to learn. It truely is amazing. Freedom in our schedule is also a bonus and we are enjoying these beautiful spring days!

On to the SCD diet- early this year, actually January 19, 2010 we put into place a specific carbohydrate diet for the boys and I. This diet is quite complex but can have amazing results. Up until January the boys were on Neocate Jr. Formula to keep weight and keep them going. We had previously done a GFCF diet as well with some improvement. For some reason their copper levels were increasing and the only source of copper we could find was the neocate. So Cody and I decided that this complex specific carbohydrate diet would be worth trying for them. We removed the formula and went on the this very difficult, time consuming diet of cooked organic fruits, vegetables and meats. No sugars, carbs or starches are allowed! ( see www.pecanbread.com for more info) This particular SCD diet is also called a healing diet and recommended for any bowel disorder. We thought if we could do with food what formula has done for years maybe we could ween them off formula. By January Lochlan's bowel issues were continuing to get worse his belly becoming more and more distended. We met with Dr. Zapata the head of the children's GI dept at Children's Hospital and got his input on the diet and Lochlan. He told us that if he really needed to be on formula and if he really had malabsorption and maldigestive issues we would know quickly. Well, within 2 monthes we have had 3 ER trips and he has had more testing than I could have ever imagined.

After an upper and lower endoscopy, biopsies, many blood and urine tests still no answers. His GI tract just cannot simply digest solid food and he also has a severe dysmotility issue which makes it very difficult for him to poop.

After 1 1/2 mo of suffering the docter decided Lochlan must go back on formula as the stomach distention was starting to cause issues with his breathing. He has referred us to Kansas City to see another specialist (our appt is in june) and in the mean time he continues to run tests. For now as long as we limit his solid food intake we can help him endure the wait. Currently he is on 30 oz. of peptamen jr. and about 1-2 cups (total amount) solid food per day, if any. He is quite the trooper and has even commented on how his tummy is not too big now.

(left:Before formula only)

(below: after formula only diet)

He is also on a full cap of miralax every day to help the dysmotility. We have no idea what will come with this specialist in June we just pray that someday he would be off the formula and we could help his digestive system begin to work properly.

In January Lochlan turned 4!! I can't believe my baby is now 4! We had a great party at the bowling alley and celebrated his cousin Carter's 5th birthday as well. They all had a great time and even daddy had a blast.

The boys have successfully completed their first soccer clinic at the YMCA and both have decided they might be soccer players when they are big. It was even more fun that their cousins Jazlyn and Kyan did the clinic with them.

Sully has started AWANA and is loving every minute of it. He is doing very well, making friends and earning jewels. He has also started swimming lessons and with the first lesson was promoted to the next level. He is quite the fish and it takes a small miracle to get him out of the water. One would think he could not breath out of the water if they witnessed the event. We are soooo very proud of him and it takes my breath away every day how much he is growing up and becoming more and more independent.

Lochlan is still attending preschool and really taking a liking to the vice principal's daughter, who is in his class. He talks about her often and they can be seen holding hands on a regular basis. He too is growing way to fast as well. He has taking a liking to his bike and has learned to pedal with training wheels. He too, like Sully, had this goal at OT and all his hard work paid off.

Thanks to Aunt Shana for the great suit! You have created Tie monsters!!! Lochlan would sleep in his if he could.