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