We had our two week weight check last Wednesday. Tyler was +4.5 oz in 2 weeks. Yay!
Around the same time as last week's weight check he decided he isn't as hungry as he ought to be. Yesterday we struggled to get him to drink 12 scoops, not even close to his minimum of 25/day. Went in for a weight check this morning and he was -1 oz from last Wednesday.
And still not hungry.
He is having an NG tube placed this afternoon. Look for a follow-up post later today or tomorrow. Fingers crossed he does well and he starts plumping up.... soon!
Thursday, May 19, 2011
Thursday, April 28, 2011
{Bad words, bad words} + a 2 week wait
{Bad words bad words bad words} seems to be commonplace in my mind lately.
Here is a glimpse of the latest happenings....
Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.
Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.
So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)
Life is grand. :)
----------------------------------------
We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.
The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)
So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.
Here is a glimpse of the latest happenings....
Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.
Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.
So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)
Life is grand. :)
----------------------------------------
We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.
The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)
So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.
Wednesday, April 13, 2011
Patch Test Results
Tyler was happy today.
Happy because these things
were coming off.The nurse came in to take the patches off. We were disappointed because initially he had more of a rash/reaction to the darn tape than the foods.
She removed the patches then outlined where the foods were and numbered them.
The nurse said Tyler was/is her best patient because usually kids cry and wiggle during this.
We have to watch these circle for 5 days, noting daily changes.Then we waited to see Dr. Shimamoto.
Forget books, the cell phone has buttons I can push.By the time Dr. Shimamoto got to us some of the negative patches turned positive.
The Results...
Safe foods
Egg (doctor isn't 100% certain about this one)
Soy
Green Beans
Could be safe but had irregular reactions
Milk
Peanut
Oat
Corn
Potato
Positive Foods (don't eat)
Wheat
Ham
Pears
Sweet Potatoes
Applesauce
Peaches
Bananas
Uber Positive Foods
Rice (Apparently he can't be as Mexican as we thought. What Mexican eats beans without rice?)
Chicken
Beef
Tyler's diet for the next 6 weeks will consist of Elecare (super expensive formula), green beans, and soy.
Don't be jealous!
Tuesday, April 12, 2011
Scratch Test
We went to the allergist on Monday to get the patch test patches applied. I am an idiot and somehow didn't realize they were going to do the scratch test at Monday's visit and not during the following appointment. Minor detail I suppose.
This is the scratch test.
Stripped down to a diaper, first clue bad things are in the immediate future.
"If I stare them down they won't hurt me." Didn't work but was worth a shot.
They mark his arm.
Then the other arm.
Tiger baby is marked up and ready to go.
18 different food samples + 2 controls
Wait 15 minutes.
Come back to read the results (=see how big the bumps are) and........
Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.
1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)
We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.
Then they started the Patch Test.
Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.
"Help me, Mom! I've got tape stuck to my back."
By the end......
He was done.
This is the scratch test.
Stripped down to a diaper, first clue bad things are in the immediate future.
"If I stare them down they won't hurt me." Didn't work but was worth a shot.
They mark his arm.
Then the other arm.
Tiger baby is marked up and ready to go.They use a plastic stick with small prongs at the tip (dipped in food) and twist it against the skin. (Apologizes for the sideways video. After waiting 10 minutes for it to upload you are lucky you are still getting a post.)
18 different food samples + 2 controlsWait 15 minutes.
Come back to read the results (=see how big the bumps are) and........
Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.
1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)
We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.
Then they started the Patch Test.
Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.
"Help me, Mom! I've got tape stuck to my back."Luckily the 48 hours is almost over because the smell isn't so pleasant. Nothing like ham, beef, chicken, wheat, soy, egg, pears, bananas, and 10 other foods taped to your back. Yum yum! :)
By the end......
He was done.Saturday, March 26, 2011
The History Part 1
Pregnancy with Tyler, not so fun. During the entire pregnancy I could not drink milk, eat any nuts, peanut butter, eggs, cheese, tomatoes, and any form of meat. Being that it was 100% different than my other pregnancies (all of which resulted in 4 boys), we fooled ourselves into thinking it was a girl.
Not so much.
We fooled ourselves into thinking we were entirely prepared for whatever Baby TyTy threw at us because we were "experienced" parents.
Not so much.
He was born via c-section (#5), doctors were surprised to find him feet first. He started crying while part of his head was still inside my stomach so the doctors hurried to squish his head out as fast as they could. Initially he had some fluid in his lungs but was fine within 24 hours. (Too bad my new abdominal hernia was a different story.)
Then the screaming started.
BEHAVIOR: He would scream. And scream. Then scream some more. He would scream at random hours. It was never at a consistent time or every single day so we couldn't pinpoint the cause of the madness. Our eldest had colic so we thought WORST case scenario he would outgrow it within a few months. Tyler again would prove us wrong.
APPETITE: Tyler was/is not a big eater. He was a decent nurser but would only eat enough to subside his hunger pains but never enough to drain me/stuff his belly. We attempted dream feeds (where they nurse while still asleep) but he refused those too. It was very unusual for us to have a baby who did not like to eat.
GROWTH (weight in percentiles): Born 8 lbs 1 oz (just over the 50th percentile)
- 1 month: 80th
- 2 months: 75th
- 4 months: 60th (Maternal instinct kicks in, doctor says it's because I am breastfeeding and Tyler needing to start solids. I wasn't so sure and opted to wait.)
- 6 months: 40th (Seriously? Doctor says, "You waited too long to start solids and now we have to play catch-up. Don't worry, he's fine." I know something is off.... Mister C and I aren't small people and, up until this point, had yet to create a small child. Tyler started solids. He was NOT interested. He would either nurse or eat solids but not both.)
- 9 months: 20th (Doctor: "He dropped again. Does CF run in your family? Maybe it's because he has an ear infection. It's possible his thyroid could be off. Let's run some tests. Do not worry though, he is too happy to be sick. Stop nursing and switch to formula and he will gain weight.")
- 10 months: 18thish (Maternal instinct: Something is seriously wrong! "We have to pin him down with 2 arms and shove food in his mouth. HE WON'T EAT!" / Doctor: "Blood work came back normal. It's a control thing. Do not force feed, only 3 meals + 1 snack. Trust me, he will be hungry and will eat again. See you again in 2 weeks.")
- 10 1/2 months: 8th (We don't force feed and he loses 3/4 of a pound in 2 weeks. Pediatrician thinks I have gone off the deep end, feels there is no reason to worry. Doctor: "Maybe he is not going to be a big kid/eater. You should never compare your children; even though all [four] of your other children are big for their age, he is just a small baby. If anything changes come back in ASAP." Strong words for a kid who is just 'small' don't you think? :)
- 1 day later: Tyler drank more than 5 oz at one time, first time ever. I do the happy dance. I lay him down to sleep and within 30 minutes I hear gagging coming from his room. I go in and find him half asleep and projectile vomiting. I call the doctor.
- 1 day later:- He has now dropped to the 3rd percentile. (Thinking perhaps our other pediatrician is not picking up on the urgency of the matter we see a different doctor. New Doctor: "He is completely healthy. Look at him.... I am holding him and he is not acting sick. He is fine, stop worrying." After some much needed convincing and pushing from my friends I become a strong advocate for my child and make an appointment with a pediatric gastroenterologist without pediatrician's knowledge. {I felt like an ignorant parent when I made the appointment; Receptionist: "And the reason for Tyler's appointment?" / Me: "Failure to thrive and not having an appetite. He's not hungry so I know something is wrong."} Appointment set.)
- The following week: Pediatrician calls me. (Old Ped: "We finally got the last set of lab results back and it appears he has something going on internally. His celiac serum level came back abnormal. You need to see a GI doctor. Don't worry too much about the results though because they can be a false positive [abnormal]." / I had no words. At last I am not crazy.)
- 10 3/4 months: 3rd percentile. Tyler sees Dr. Mark McOmber. (He mentions {without trying to speak negatively about the pediatrician} with Tyler's symptoms and behavior we should have come to him months ago. I love Dr. McOmber.)
-----------------------
History Part 2 to follow.
Not so much.
We fooled ourselves into thinking we were entirely prepared for whatever Baby TyTy threw at us because we were "experienced" parents.
Not so much.
He was born via c-section (#5), doctors were surprised to find him feet first. He started crying while part of his head was still inside my stomach so the doctors hurried to squish his head out as fast as they could. Initially he had some fluid in his lungs but was fine within 24 hours. (Too bad my new abdominal hernia was a different story.)
Then the screaming started.
BEHAVIOR: He would scream. And scream. Then scream some more. He would scream at random hours. It was never at a consistent time or every single day so we couldn't pinpoint the cause of the madness. Our eldest had colic so we thought WORST case scenario he would outgrow it within a few months. Tyler again would prove us wrong.
APPETITE: Tyler was/is not a big eater. He was a decent nurser but would only eat enough to subside his hunger pains but never enough to drain me/stuff his belly. We attempted dream feeds (where they nurse while still asleep) but he refused those too. It was very unusual for us to have a baby who did not like to eat.
GROWTH (weight in percentiles): Born 8 lbs 1 oz (just over the 50th percentile)
- 1 month: 80th
- 2 months: 75th
- 4 months: 60th (Maternal instinct kicks in, doctor says it's because I am breastfeeding and Tyler needing to start solids. I wasn't so sure and opted to wait.)
- 6 months: 40th (Seriously? Doctor says, "You waited too long to start solids and now we have to play catch-up. Don't worry, he's fine." I know something is off.... Mister C and I aren't small people and, up until this point, had yet to create a small child. Tyler started solids. He was NOT interested. He would either nurse or eat solids but not both.)
- 9 months: 20th (Doctor: "He dropped again. Does CF run in your family? Maybe it's because he has an ear infection. It's possible his thyroid could be off. Let's run some tests. Do not worry though, he is too happy to be sick. Stop nursing and switch to formula and he will gain weight.")
- 10 months: 18thish (Maternal instinct: Something is seriously wrong! "We have to pin him down with 2 arms and shove food in his mouth. HE WON'T EAT!" / Doctor: "Blood work came back normal. It's a control thing. Do not force feed, only 3 meals + 1 snack. Trust me, he will be hungry and will eat again. See you again in 2 weeks.")
- 10 1/2 months: 8th (We don't force feed and he loses 3/4 of a pound in 2 weeks. Pediatrician thinks I have gone off the deep end, feels there is no reason to worry. Doctor: "Maybe he is not going to be a big kid/eater. You should never compare your children; even though all [four] of your other children are big for their age, he is just a small baby. If anything changes come back in ASAP." Strong words for a kid who is just 'small' don't you think? :)
- 1 day later: Tyler drank more than 5 oz at one time, first time ever. I do the happy dance. I lay him down to sleep and within 30 minutes I hear gagging coming from his room. I go in and find him half asleep and projectile vomiting. I call the doctor.
- 1 day later:- He has now dropped to the 3rd percentile. (Thinking perhaps our other pediatrician is not picking up on the urgency of the matter we see a different doctor. New Doctor: "He is completely healthy. Look at him.... I am holding him and he is not acting sick. He is fine, stop worrying." After some much needed convincing and pushing from my friends I become a strong advocate for my child and make an appointment with a pediatric gastroenterologist without pediatrician's knowledge. {I felt like an ignorant parent when I made the appointment; Receptionist: "And the reason for Tyler's appointment?" / Me: "Failure to thrive and not having an appetite. He's not hungry so I know something is wrong."} Appointment set.)
- The following week: Pediatrician calls me. (Old Ped: "We finally got the last set of lab results back and it appears he has something going on internally. His celiac serum level came back abnormal. You need to see a GI doctor. Don't worry too much about the results though because they can be a false positive [abnormal]." / I had no words. At last I am not crazy.)
- 10 3/4 months: 3rd percentile. Tyler sees Dr. Mark McOmber. (He mentions {without trying to speak negatively about the pediatrician} with Tyler's symptoms and behavior we should have come to him months ago. I love Dr. McOmber.)
-----------------------
History Part 2 to follow.
Thursday, March 24, 2011
Coming Soon
I'm working on a post regarding the latest happenings with Tyler and the world of EE.
Stay tuned!
Stay tuned!
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