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We went to San Francisco to visit the pediatric GI doctor today. You can tell he is a very smart man and probably excellent at his procedures, but his bedside manner wasn't the best we've ever seen. He was good with Cameron, which is the most important, but we left without many answers and a general goal to get him to gain weight. He told us that lactose intolerance was unlikely to be the only problem, yet didn't give us answers as to what other problems it might be. Since Cameron is a baby, the doctor said it is very rare to have lactose intolerance since all babies drink milk. He then went on to tell us to give him a very high-fat diet - including pediasure or carnation instant breakfasts in his milk. After thinking it over I told he doctor I was very uncomfortable going back to lactose foods since taking lactose out was the only thing that helped him. We agreed to keep him lactose free and to give him as much fat and calories in his diet as possible. I just prepared him a sippy cup of full-fat lactaid milk with a scoop of soy formula mixed in - so he's getting double the calories. It's rare to hear a doctor tell you to feed your son fried chicken, but that's what he said!
The doctor also suggested it could be celiac disease (wheat allergy). When we told him Cameron tested negative for celiac the doctor said the blood tests are often inconclusive. Great. There is a procedure that can be done where the intestine is biopsied to find out if he has it, but we're not going there yet.
The good news of the day: As we were on the elevator up to the GI doctor, the CF doctor called us and told us Cameron was negative for the genetic testing for CF. Hooray!
Our trip to Vegas was so relaxing! The flight was okay with both kids. Cameron got restless, but thankfully it was a short flight. Chase didn't make a peep, he was glued to a dvd! We spent most of our time by the pool. We went to a few parks while we were there, too. We discovered that Henderson is a very kid-friendly town with lots of parks and things to do with kids. They have several parks with the water that squirts out of the ground, that was a big hit with Chase. While we were there we squeezed in some places that we no longer have in Santa Rosa. We took Cameron to a kids salon to have his first hair cut and also took the boys to the mall to get their pictures done at The Picture People. We got some cute shots of the boys.
Doug's birthday was on the 16th and we celebrated by playing mini-golf and going out to lunch at a BJ's Pizza restaurant. My dad made some excellent paella for dinner that night and we ended with some delicious Snickers cake. Yum. Here's some pictures from our trip.
Hi everyone. We had a wonderful time in Vegas on our vacation. I'll post more and add pictures next time. Lots of people have been asking about how Cameron is doing so I thought I would put up a quick post. While we were on vacation we got the results of his last poop test, it came back negative. I guess that test is another CF indicator, so that's good news. We haven't heard back from the genetic testing yet, hopefully some time this week. On Friday we head to San Francisco to meet with the pediatric GI doctor, his appointment is at 10 am. I'm hoping by then we'll have the results of the genetic CF test back and the GI doctor can help us figure out what sugar that Cameron's body isn't processing instead of us just guessing that it's lactose. He's had a little cold this week and has been coughing up phlegm (I don't remember Chase ever coughing up phlegm when he was sick), so of course, it has me worried (what else is new!). I posted one picture from Cameron at a park in Henderson last week. More to come from our vacation soon...
Just heard from Oakland. Cam didn't sweat enough again. There are several four-letter words I'd like to say right now, but I'm sure you can all imagine how irritated I am. Now we have to do another poop test and the doctor in Oakland ordered a genetic screening test to see if Cam has the gene in his blood. I guess this takes a week and a half to get results. We'll find out when we get back from Vegas. We're just going about our lives as if the CF test is negative, but there's always going to be that nagging worry in the back of our minds until we find out for sure. I can't believe we have to scoop poop out of another diaper and my baby boy has to be poked one more time. He's a baby, not a science project!!! The good news is that he's one tough kid, didn't even cry the last time he got his blood drawn. I'm just mad and sad all in one. I want some answers, not knowing is the worst. :(
Yesterday we went for a weigh-in with Cameron's pediatrician, Dr. Sloan. He put on another two ounces (never thought I would be excited about two ounces!). We're all pretty sure it's a severe lactose allergy. He's been tested for the protein in milk, and he was negative for that, but the switch to a lactose free diet seems to be helping him. Dr. Sloan said this is the most extreme case he's ever seen, "no kid has ever last that much weight with a lactose intolerance," he said when this all began. Crazy (why us, why him?!). He also tested positive for one of the stool samples that said his body wasn't processing a certain sugar (Dr. Sloan said this was probably the lactose - lactose is the sugar that's in milk). After the sweat test results Dr. Sloan is going to review everything with a pediatric GI doctor, then refer us to a pediatric dietitian.
Today was Cameron's second sweat test. This time we came prepared with more layers. You can see the picture of him below, he's got a onesie, long sleeve shirt, sweatshirt and Chase's hoodie on. It didn't seem like they collected that much more sweat than last time, but hopefully it worked. He looked like E.T. walking around with that oversized hoodie on, it was pretty cute. He did much better this time, I think we all did, probably because we knew what to expect. I'm hoping we get the results tomorrow, but it will probably be Friday since we did the test so late in the day today. We leave for vacation on Saturday (my dad's house in Vegas!). We can't wait to get out of town and relax. Thanks for checking in on us, I'll update when I get the results from today's test.
I'm ready to scream. They didn't collect enough sweat from Cam yesterday to do the test. They only do the tests on Wednesday's so we have to wait until next Wednesday to go back. Our appointment is at 3:30. Grumble, grumble, grumble!
Thanks for checking in with us. Cam's appointment for the CF test was at 11 this morning. We found the Kaiser in Oakland without a problem, it's quite a large facility. To test for CF they make you sweat and collect the sweat and test it for sodium levels. Aparently if it's really high it means he has CF. First they put some electrodes on his arms that gave him a little electic pulse to stimulate the sweat glands, then they put different bands on him, bundled him up in his jacket and let him play for half an hour. They removed the bands and sent the sweat stuff to the lab. They gave us a time frame of when we'll know: tomorrow by 3 or Friday by 5. Now we wait. Doug and I are both exhausted from worrying. I feel like a walking zombie. Huge thanks to our friend Lisa for watching Chase for us today while we took Cam to Oakland. I'll post more when I know more. He's still eating like a pig, not sure if he's not absorbing, or if he's just catching up...
We went for a weigh-in this morning and Cameron has gained 6 ounces, hooray! I think my magic mom instincts have figured out what's wrong with Cameron - I think he's lactose intollerant. We've cut out dairy from his diet and have switched him to Lactaid milk and it seems to be helping with his poops. We still have one more stool sample to do and we're still going to go to Oakland and go through with the CF test just to be safe. A little piece of mind is worth the drive. Cam's doctor says it's very rare for a baby to lose that much weight with a lactose intollerance, but Cam could be a little different. Wouldn't it be great if that's all it was? He also ruled out celiac disease (wheat allergy), which is a relief. I'll give an update on Thursday as we hear more results. Thanks for checking in with us and for your prayers. We have another weigh-in on Friday, 6/12, the day before we leave for vacation. Hopefully by then all our fears will be abated.
