Yesterday the feeding clinic would not allow Ben to come in. Not because he was sick, but because he was coughing and then gagging and throwing up. He is not a vomitter, so they do not want him to associate gagging and throwing up with eating. He truly was a sick kid and needed the day to rest, but I was sure discouraged. I feel like I have wasted a week, since we were not at the clinic on Thursday and Friday due to Thanksgiving, and then the weekend. We came Monday, but he was sick, and we could see that the gagging was pretty bad. So we are being careful with him today. He is being given 100% Eo-28 to drink, and seems to like that more than when it is mixed with milk. He is being fed pureed fruit, and they are watering it down to help with gagging. The doctor at the clinic thinks he has an ear infection. I am not excited about finding a corn free antibiotic for him. I will try using Silver Biotics first.
I have been to the pharmacy many times the past few days. Finding meds that a corn allergic person can take is next to impossible. I will need to have Benadryl, Tylenol, and Sudafed mixed up for him at a compounding pharmacy. I had no idea that almost all drugs had corn in them. It is a real bummer. Through parent-2-parent.com, I have met others who are corn allergic, and they have been wonderfully helpful to me.
Wednesday, November 29, 2006
Monday, November 27, 2006
Honeymoon is Over
This weekend was both wonderful and difficult. As for wonderful, Ben played in leaves and "helped" us rake them, thus conquering his fear of leaves. He and "Papa" have been doing leaf therapy at night. They go out and walk, jump, and crunch in the leaves. Papa is in the family we are staying with, and Ben absolutely loves him. Ben also ate well for me. I had to feed him twice a day by mouth, and I worked very diligently at doing this as I had been instructed. I learned that bananas had to be thinned down some or he would gag to death on them. He learned to enjoy pureed peaches a bit more. For all of my efforts, I was rewarded with Ben's 4 oz. weight gain. ;o)
As for the difficult part of the weekend, I was the only one that could feed Ben. Since I am the only one trained in the protocol, I was the only that could feed him. This has worn me down. It is a good thing to be able to hand him off once in a while. Getting everything set up to feed him, then getting mentally prepared for the feeding takes a huge amount of energy. I was never sure if I would succeed or fail in my efforts. Thankfully he did well eating, and other than feeling blue and homesick, I do feel like I was a success. Also, on Sunday, I helped in the children's nursery at church. At snack time, all the kids (ages 18 mo to 3 yrs) sat down at the table and eagerly ate their snacks. I gave Ben 1 Gerber food puff and he mashed it into pieces, then threw it down. The 2 raisins he was given were both thrown. His one oz. of water was dumped out onto the table. I usually don't let that scene get to me, but it killed me on Sunday. I felt so discouraged. Is this kid ever going to want to sit down and snack, or am I always going to have to initiate, set up, and jump through hoops to get him to put one bite into his mouth? I just want him to be normal. Sometimes I sit back and look at my situation, and I marvel at how something as natural as eating, could ever be so unnatural to him.
As for the difficult part of the weekend, I was the only one that could feed Ben. Since I am the only one trained in the protocol, I was the only that could feed him. This has worn me down. It is a good thing to be able to hand him off once in a while. Getting everything set up to feed him, then getting mentally prepared for the feeding takes a huge amount of energy. I was never sure if I would succeed or fail in my efforts. Thankfully he did well eating, and other than feeling blue and homesick, I do feel like I was a success. Also, on Sunday, I helped in the children's nursery at church. At snack time, all the kids (ages 18 mo to 3 yrs) sat down at the table and eagerly ate their snacks. I gave Ben 1 Gerber food puff and he mashed it into pieces, then threw it down. The 2 raisins he was given were both thrown. His one oz. of water was dumped out onto the table. I usually don't let that scene get to me, but it killed me on Sunday. I felt so discouraged. Is this kid ever going to want to sit down and snack, or am I always going to have to initiate, set up, and jump through hoops to get him to put one bite into his mouth? I just want him to be normal. Sometimes I sit back and look at my situation, and I marvel at how something as natural as eating, could ever be so unnatural to him.
Today, he has a cold. He has been really gaggy. He has thrown up during a couple of his feedings. Earlier today, he got into a coughing fit and threw up everything from his most recent feeding. On a good note, if he can keep his food down, all day time tube feedings have been cut, and the overnight one is reduced. Happiness is not tube feeding! So, I guess the honeymoon is over, and I am now on an amazing rollercoaster ride. I will take the good with the bad, and keep hoping for better days and for a child that will eat. Slowly, I am on my way there....
Friday, November 24, 2006
On My Own
Friday, November 24, 2006
On Tuesday and Wednesday of this week, Ben's feeding therapist worked with me to teach me the feeding protocol. I had to learn this so that I could keep feeding Ben over the long weekend, and so that he would not lose his new skills. I learned about the verbal cues I needed to give, as well as the cues to get him to open his mouth correctly. I learned about some ways to keep control of the feeding so that I could avoid a power struggle. (We had a few of those while I was learning.) I can now manage a DVD, his toy, and his food with skill. The movie and toy are used as positive reinforcement. He may watch the movie and have the toy when he takes his bites of food appropriately. He is responding well to this now. The first time I came into the room to try to feed him, he was very upset. That first feeding did not go quite as well because he tried some of his old tricks. Once he saw that I could handle that, and that I was on-board with the feeding therapist, he did not try that again. Yesterday, I actually got 7 oz. into him in one feeding, and in another feeding, he got 6 oz. I was proud of that. He ate yogurt, pureed peaches, and Eo-28 mixed with milk. This morning I gave him some pureed bananas, but they were too thick and he did a lot of gagging. I learned a good lesson from that. He only ate about 5 oz. this morning. One exciting thing he did yesterday was that he ate a few tiny pieces of turkey. WTG Ben! He did not know how to chew it, but the fact that he kept the pieces in his mouth at all was great! He seemed to have a good Thanksgiving. The only thing better would have been to be home with the family.
On Tuesday and Wednesday of this week, Ben's feeding therapist worked with me to teach me the feeding protocol. I had to learn this so that I could keep feeding Ben over the long weekend, and so that he would not lose his new skills. I learned about the verbal cues I needed to give, as well as the cues to get him to open his mouth correctly. I learned about some ways to keep control of the feeding so that I could avoid a power struggle. (We had a few of those while I was learning.) I can now manage a DVD, his toy, and his food with skill. The movie and toy are used as positive reinforcement. He may watch the movie and have the toy when he takes his bites of food appropriately. He is responding well to this now. The first time I came into the room to try to feed him, he was very upset. That first feeding did not go quite as well because he tried some of his old tricks. Once he saw that I could handle that, and that I was on-board with the feeding therapist, he did not try that again. Yesterday, I actually got 7 oz. into him in one feeding, and in another feeding, he got 6 oz. I was proud of that. He ate yogurt, pureed peaches, and Eo-28 mixed with milk. This morning I gave him some pureed bananas, but they were too thick and he did a lot of gagging. I learned a good lesson from that. He only ate about 5 oz. this morning. One exciting thing he did yesterday was that he ate a few tiny pieces of turkey. WTG Ben! He did not know how to chew it, but the fact that he kept the pieces in his mouth at all was great! He seemed to have a good Thanksgiving. The only thing better would have been to be home with the family.
Monday, November 20, 2006
Portion control
Monday, November 20, 2006
Today was Ben's weekly eval. with the whole team. We reviewed each of his goals that were set last week, and if they were achieved. He had done a great job in meeting a lot of his goals, and we set a few more. One thing that I wanted to work on was chewing. Over the weekend, I noticed that he did not know how to bite off a piece of bread. His feeding therapist discussed the process involved in teaching chewing skills, and explained why he did not know how to do this. He began showing small improvements today in chewing. One of the other things they decided to do was to control his portions. They want to limit a feeding to 5-6 oz. The reason for this is to prevent his small stomach from getting too full and causing him to throw up. He is not a vomitter, and they do not want him to associate vomitting with eating. They plan to slowly stretch his tummy out.
As for food, he ate plain pureed pears, plain applesauce, and 25% whole milk with 75% Eo-28. He is not in love with the Eo-28, but will take it. He did some nice gags with the applesauce, but was a good sport about eating it. They will continue to food blend to add new flavors and foods.
Of note is the fact that Ben gained 1 lb. this week. It is no wonder considering all the extra that he ate this weekend, and the fact that he got all of his regular tube feeds. It is great to see a bit of chub on his little body!
Today was Ben's weekly eval. with the whole team. We reviewed each of his goals that were set last week, and if they were achieved. He had done a great job in meeting a lot of his goals, and we set a few more. One thing that I wanted to work on was chewing. Over the weekend, I noticed that he did not know how to bite off a piece of bread. His feeding therapist discussed the process involved in teaching chewing skills, and explained why he did not know how to do this. He began showing small improvements today in chewing. One of the other things they decided to do was to control his portions. They want to limit a feeding to 5-6 oz. The reason for this is to prevent his small stomach from getting too full and causing him to throw up. He is not a vomitter, and they do not want him to associate vomitting with eating. They plan to slowly stretch his tummy out.
As for food, he ate plain pureed pears, plain applesauce, and 25% whole milk with 75% Eo-28. He is not in love with the Eo-28, but will take it. He did some nice gags with the applesauce, but was a good sport about eating it. They will continue to food blend to add new flavors and foods.
Of note is the fact that Ben gained 1 lb. this week. It is no wonder considering all the extra that he ate this weekend, and the fact that he got all of his regular tube feeds. It is great to see a bit of chub on his little body!
Super Saturday and Sunday
OK, I wasn't going to post about the weekend, but I cannot believe what Ben did. Last weekend I could not get him to eat for me, this weekend I almost couldn't get him to stop. He ate 1/8 slice of whole wheat bread, 35 Gerber peach puffs, and 4 oz. whole milk on Saturday evening. On Sunday, he ate a total of 9 oz. yogurt, 3 oz. of whole milk, and 1/4 slice whole wheat bread with butter and honey. To some this may not sound like much, but he has gone from eating NOTHING by mouth on most days, to willingly eating. I am in shock! Part of me doesn't want to get excited for fear that this will go away, but if it stays, or improves.....
Ben's other big accomplishment on Saturday was that he overcame most of his fear of leaves. Where we live, we don't get much of the fall leaves, but here there are fall leaves. He has been scared to death of them. We went out on Saturday to rake and bag leaves, and little by little, he worked his way into the leaves. By the end, he was standing in a big pile of leaves. He has been amazing.
Ben's other big accomplishment on Saturday was that he overcame most of his fear of leaves. Where we live, we don't get much of the fall leaves, but here there are fall leaves. He has been scared to death of them. We went out on Saturday to rake and bag leaves, and little by little, he worked his way into the leaves. By the end, he was standing in a big pile of leaves. He has been amazing.
Friday, November 17, 2006
Amazing progress
Friday, November 17, 2006
Today Ben must have been outrageously hungry. At his first meal he ate over 6 oz, then about 5.5oz. at his 11:45 am feeding. At his third feeding, however, he ate a whopping 7.5 oz. I was completely shocked, but then absolutely elated. I couldn't believe he was actually capable of eating that much in a single sitting. He ate raspberry yogurt, pureed banana and pear, and his milk with Eo-28. He accomplished this with very little gagging, which is very impressive. Because of all of this eating, he now has 3 of his 4 daytime feeds cut out, and I don't miss them one bit. I think that if he keeps this up, we will take out the last feeding as well, and just keep his overnight continuous feed. This weekend, however, I will be giving him all 4 feedings in the day. He still won't eat for me like he will the therapists.
Ben's best little buddy graduated from the program today. He will be crushed on Monday when he shows up and asks for this other little boy. His friend is about 4 yrs. old, and I think Ben looked up to him, as well as just gravitating to him. Ben will be lonely. They loved to have crash derbies with the Little Tike cars that are in the hallway. I guess Ben will have to broaden his social circle.
Now that I can see some growth and progress, I am having a hard time being patient. I am so hoping we can get to foods that need to be chewed. I was told today that they mainly work on purees, and once those are down, they begin to do branch out on their own. I would like to see the clinic work on it, though.
Today Ben must have been outrageously hungry. At his first meal he ate over 6 oz, then about 5.5oz. at his 11:45 am feeding. At his third feeding, however, he ate a whopping 7.5 oz. I was completely shocked, but then absolutely elated. I couldn't believe he was actually capable of eating that much in a single sitting. He ate raspberry yogurt, pureed banana and pear, and his milk with Eo-28. He accomplished this with very little gagging, which is very impressive. Because of all of this eating, he now has 3 of his 4 daytime feeds cut out, and I don't miss them one bit. I think that if he keeps this up, we will take out the last feeding as well, and just keep his overnight continuous feed. This weekend, however, I will be giving him all 4 feedings in the day. He still won't eat for me like he will the therapists.
Ben's best little buddy graduated from the program today. He will be crushed on Monday when he shows up and asks for this other little boy. His friend is about 4 yrs. old, and I think Ben looked up to him, as well as just gravitating to him. Ben will be lonely. They loved to have crash derbies with the Little Tike cars that are in the hallway. I guess Ben will have to broaden his social circle.
Now that I can see some growth and progress, I am having a hard time being patient. I am so hoping we can get to foods that need to be chewed. I was told today that they mainly work on purees, and once those are down, they begin to do branch out on their own. I would like to see the clinic work on it, though.
Thursday, November 16, 2006
New Flavors
November 15, 2006 Wednesday
This morning it did seem like a vacation since I did not have to manage a 4 oz. tube feeding, 3 oz. of MiraLax, and his Prevacid, which has to be given 30 min. before the tube feeding. A tiny tummy can only hold so much before disaster hits. It was stressful to do this all before getting to the feeding clinic on time. I won't miss that feeding!
This morning the therapists added the Beckman Oral Exercises to Ben's regimen. It was funny to watch his expressions on his face. I could tell he was feeling like they were in his space bubble. The exercises are stretches and massages done on the face, mouth, and gums. I will have to have these done on me so that I can learn to do that to Ben. I am not looking forward to having that, as my space bubble is not to be intruded upon.
As for food, Ben was amazing! He ate about 4 oz. consistently. He was given whole milk with Eo-28 mixed in 50%. (Eo-28 is a specialized elemental formula, much like his Neocate Jr., but supposed to actually be palatable. It comes in a juice box.) He also was fed vanilla soy yogurt, yogurt mixed 50% with pureed peaches, then plain pureed peaches. He must have thought the peaches were too tart because the expressions on his face were priceless. Adding the flavors gradually is called food blending. Because he is eating so much, they decided to cut another feeding. Hooray! They wanted to cut it during clinic time, which means that I would have to fit 2 feedings in the evening. I will have to discuss this with them, because that makes my evenings very difficult.
This morning it did seem like a vacation since I did not have to manage a 4 oz. tube feeding, 3 oz. of MiraLax, and his Prevacid, which has to be given 30 min. before the tube feeding. A tiny tummy can only hold so much before disaster hits. It was stressful to do this all before getting to the feeding clinic on time. I won't miss that feeding!
This morning the therapists added the Beckman Oral Exercises to Ben's regimen. It was funny to watch his expressions on his face. I could tell he was feeling like they were in his space bubble. The exercises are stretches and massages done on the face, mouth, and gums. I will have to have these done on me so that I can learn to do that to Ben. I am not looking forward to having that, as my space bubble is not to be intruded upon.
As for food, Ben was amazing! He ate about 4 oz. consistently. He was given whole milk with Eo-28 mixed in 50%. (Eo-28 is a specialized elemental formula, much like his Neocate Jr., but supposed to actually be palatable. It comes in a juice box.) He also was fed vanilla soy yogurt, yogurt mixed 50% with pureed peaches, then plain pureed peaches. He must have thought the peaches were too tart because the expressions on his face were priceless. Adding the flavors gradually is called food blending. Because he is eating so much, they decided to cut another feeding. Hooray! They wanted to cut it during clinic time, which means that I would have to fit 2 feedings in the evening. I will have to discuss this with them, because that makes my evenings very difficult.
Tuesday, November 14, 2006
Benny's Blog
Monday, Nov. 13, 2006
I tried feeding Ben yogurt this weekend, but failed miserably. I was excited by his progress at the end of the week, but I guess I will have to rebuild that trust with Ben. Today he was amazing. He was willing to eat 3 oz. at a sitting. It was still vanilla soy yogurt, and whole milk to drink, but 3 oz. is huge for him.
Today we also had his initial team meeting in which we discussed his goals. The whole team was there, including the feeding therapists, behavioral psych, the social worker, a pediatrician. I explained my goals, and they explained how they set theirs. My goals for Ben are:
1. Get off the tube!!!!!!!!
2. Increase the amount of food he can/will take in a meal
3. Be able to hydrate himself completely, consistently
4. Add variety of foods, textures
5. Have age appropriate self-feeding skills
The clinic sets goals that can be accomplished in 1-2 wks. at a time, mainly for insurance purposes.
I was basically happy with the meeting.
Another meeting I had today was Ben's nutrition meeting. I expressed my frustration with trying to get his Prevacid in 30 min. before a tube feeding, giving 3 oz. of Miralax (a prescribed laxative), then adding 4 oz. of formula to a tiny tummy. Our solution...cut out the first tube feeding of the day. I will feel like I am on vacation by not having to worry about that.
So, it was a very busy and eventful day, and I feel good about it.
I tried feeding Ben yogurt this weekend, but failed miserably. I was excited by his progress at the end of the week, but I guess I will have to rebuild that trust with Ben. Today he was amazing. He was willing to eat 3 oz. at a sitting. It was still vanilla soy yogurt, and whole milk to drink, but 3 oz. is huge for him.
Today we also had his initial team meeting in which we discussed his goals. The whole team was there, including the feeding therapists, behavioral psych, the social worker, a pediatrician. I explained my goals, and they explained how they set theirs. My goals for Ben are:
1. Get off the tube!!!!!!!!
2. Increase the amount of food he can/will take in a meal
3. Be able to hydrate himself completely, consistently
4. Add variety of foods, textures
5. Have age appropriate self-feeding skills
The clinic sets goals that can be accomplished in 1-2 wks. at a time, mainly for insurance purposes.
I was basically happy with the meeting.
Another meeting I had today was Ben's nutrition meeting. I expressed my frustration with trying to get his Prevacid in 30 min. before a tube feeding, giving 3 oz. of Miralax (a prescribed laxative), then adding 4 oz. of formula to a tiny tummy. Our solution...cut out the first tube feeding of the day. I will feel like I am on vacation by not having to worry about that.
So, it was a very busy and eventful day, and I feel good about it.
Saturday, November 11, 2006
Second full day
Friday, Nov. 10, 2006
Bens second full day was a long day. On Fridays there are no therapies. He usually would go to recreational therapy and to preschool. I did a lot of chasing in the halls while he played. He is really starting to interact with the other little boys, and one of their favorite things to do is to scoot around in the Little Tikes cars that are there. I also took him out to the playground to run out some of his abundant energy, but he was limited there as he has an extreme fear of the fall leaves that have fallen to the ground.
As for the feeding, he was fed yogurt today. It is the one food he consistently enjoys. He is being fed vanilla. He had been given a tube feeding right before the first feeding session for the day so he was not that hungry, and I think he only ate 1/2 oz. That would include both the yogurt consumed and the water he drank. He did the same thing at the second feeding. But the third feeding he was much more willing to eat. He actually opened his mouth wide once without prompting. He gagged once, which is usually the kiss of death for a meal at home, but the therapist insisted he continue so he gave up the fight and ate a few more bites. He is prompted to open wide, then the spoon is put into his mouth. He is rewarded for a good bite with a toy and praise. The therapist will remove the toy for the next bite and state that it is her turn to work with him. If he fights the bite, she blocks his hands and works to get him to open his mouth and to accept the bite. When he does, he is rewarded again. At the last 2 feedings, he ate 2.3 oz. That is a big deal for Ben.
Next week, the feeding therapists plan to change the flavor of his food and to work into a new food. It will be interesting to see what new food we end up with next week.
Today 2 of the kids graduated. One of the moms was thrilled with the progress her child had made, the other was less happy. The less happy mom was happy with the variety of food her child was eating, but not as happy with the chewing and swallowing skills. The other mom was thrilled because she now has to worry about feeding her child too much. Her little one would not eat before she came to the clinic, and now has a good variety of foods and is very willing to eat. That is a dream of mine for Ben. I would love to have to worry about him getting too many calories!
Ben also got a new button today. He had an AMT mini, which was broken from the get-go. It always leaked everything in his tummy back out when the cap was off. By the end of each day, he waws pretty smelly because of what had leaked out. My home health care did not have another AMT in his size so they sent a mic-key to tie me over. I actually like the way it sits on his belly better than the AMT. I will have to see how it goes. I am loving the fact that it doesn't leak.
Bens second full day was a long day. On Fridays there are no therapies. He usually would go to recreational therapy and to preschool. I did a lot of chasing in the halls while he played. He is really starting to interact with the other little boys, and one of their favorite things to do is to scoot around in the Little Tikes cars that are there. I also took him out to the playground to run out some of his abundant energy, but he was limited there as he has an extreme fear of the fall leaves that have fallen to the ground.
As for the feeding, he was fed yogurt today. It is the one food he consistently enjoys. He is being fed vanilla. He had been given a tube feeding right before the first feeding session for the day so he was not that hungry, and I think he only ate 1/2 oz. That would include both the yogurt consumed and the water he drank. He did the same thing at the second feeding. But the third feeding he was much more willing to eat. He actually opened his mouth wide once without prompting. He gagged once, which is usually the kiss of death for a meal at home, but the therapist insisted he continue so he gave up the fight and ate a few more bites. He is prompted to open wide, then the spoon is put into his mouth. He is rewarded for a good bite with a toy and praise. The therapist will remove the toy for the next bite and state that it is her turn to work with him. If he fights the bite, she blocks his hands and works to get him to open his mouth and to accept the bite. When he does, he is rewarded again. At the last 2 feedings, he ate 2.3 oz. That is a big deal for Ben.
Next week, the feeding therapists plan to change the flavor of his food and to work into a new food. It will be interesting to see what new food we end up with next week.
Today 2 of the kids graduated. One of the moms was thrilled with the progress her child had made, the other was less happy. The less happy mom was happy with the variety of food her child was eating, but not as happy with the chewing and swallowing skills. The other mom was thrilled because she now has to worry about feeding her child too much. Her little one would not eat before she came to the clinic, and now has a good variety of foods and is very willing to eat. That is a dream of mine for Ben. I would love to have to worry about him getting too many calories!
Ben also got a new button today. He had an AMT mini, which was broken from the get-go. It always leaked everything in his tummy back out when the cap was off. By the end of each day, he waws pretty smelly because of what had leaked out. My home health care did not have another AMT in his size so they sent a mic-key to tie me over. I actually like the way it sits on his belly better than the AMT. I will have to see how it goes. I am loving the fact that it doesn't leak.
Thursday, November 09, 2006
How did this happen?
Most people are surprised to find out that my child refuses to eat food. Some people don't know what to say, while others have lots of suggestions. It is still hard for me to understand how something that seems to be as natural as eating, isn't always a natural thing.
Ben was born at 36 wks. gestation. He was baby "A" in a twin pregnancy. He weighed in at a feather weight of 3lbs. 6oz., while his twin brother weighed a healthy 5lbs. 6oz. They certainly did not look like twins. Ben stayed in the NICU for 11 days while he had problems regulating his temperature, experienced jaundice, and learned to suck from a bottle. He was very difficult to feed, and for him to take in 1cc of formula took maximum effort on our part. It often took 30 minutes to get that 1-2 cc's down. He worked up to about 15cc, or half an ounce by the time he was discharged. He had to be fed every 3 hrs. and was limited to 30 min. per feeding. We were told to hold him as little as possible so as not to stress him, or to make him burn any more calories than he had to. His weight at discharge was 3lbs. 10oz. I was very nervous about taking him home.
Once at home, Ben put on weight slowly, but steadily. He continued to be difficult to feed by drinking only small amounts from a bottle, while his twin soon learned to drain a bottle. Ben's twin grew as he should and began to meet his developmental milestones, while Ben seemed to only gain inchstones. Ben would often aspirate on his formula as well. The most he ever drank was 6 oz., and that happened just a few times. He usually would get 2-3 oz. down, and then the fighting would start. I would keep the bottle in his mouth, and he would try to push it out. Eventually he learned to fold the bottle nipple over with his tongue so that he couldn't drink. I began to see a feeding therapist, but the going was so slow. During this time, he was diagnosed with developmental delays, and he was usually 3 or more months behind his twin. When solids were introduced, Ben was initially the better eater, but it wasn't long before his twin assumed that role. Ben would often choke or gag, then throw up what was fed. It began to take me longer and longer to feed him. I would reheat his food several times during a feeding. I also was told to add vegetable oil to his food to add calories--yuck!
By the time Ben was just over a year, I took him to a gastroenterologist. She performed an esophagogastroduodenoscopy. An "EGD" is a procedure in which a special scope is put down the throat, into the stomach, then duodenum, to examine for abnormalities. Ben's EGD showed redness in his esophagus, so a pH probe was put in. To do a pH probe, a probe is threaded through the nose, and then down the esophagus. It measures the pH of the esophagus at various places, and takes data for 24 hrs. Ben's pH probe showed moderate gastroesophageal reflux disease, or GERD. He was apparently having a lot of heart burn. He was given Prevacid as a prescription for this condition. I was hoping that the Prevacid would help make eating more pleasurable for him by stopping the heartburn, but he did not change his eating habits.
The GI doctor also prescribed a modified barium swallow for Ben to try to understand his aspiration of liquid. In the "MBS", Ben was given barium to drink that was of different thicknesses. It was discovered that he was aspirating liquids that were thinner than honey, so we had to thicken his drinks with a special thickener. That was a difficult thing to do since most drinks of that thickness will not go through a sippy cup. We had to use cups with no valves which were messy at best. He was drinking Pediasure for extra calories, and to his food we would add Duocal, a powdered calorie additive.
Because Ben had swallowing problems, we tried a therapy called VitalStim. VitalStim is done by placing small electrodes on the neck and throat muscles. A small current is introduced through the leads and will cause the muscles to contract. The concept is similar to lifting weights in that a person will contract their muscles multiple times in doing a repetition of weights, eventually strengthening the muscle. Ben's muscles were caused to contract multiple times by the electrical messages sent by the leads on his throat. The process is very painful, and must be endured for an hour, for atleast 20 almost consecutive days. I tried the VitalStim, but could only endure a few minutes. I admire my tough little guy for making it through that. The MBS following the VitalStim appeared normal, so that therapy worked well for Ben, and we feel it was worth it.
When Ben was 20 months old, we did another EGD to determine the condition of his esophagus. We needed to find out if the Prevacid was working. It appeared that the esophagus was healing, and the redness and irritation were going away. For that we were very excited. As part of the EGD, most doctors take biopsies. With this endoscopy, Ben's biopsies showed a large amount of eosinophils had gathered in his esophagus. An eosinophil is a white blood cell that is often associated with allergies. Ben was now given the diagnosis of eosinophilic esophagitis. "EE" is an auto-immune disorder in which eosinophils are drawn to the esophagus and cause irritation and inflammation. Doctors do not know why this happens, and really do not know much about the disease. A person with EE usually has a difficult time swallowing, food can get caught in their throat, experience a lot of pain when swallowing, weight loss, and refusal to eat. In Ben's case, he simply refused to eat. He had not gained weight, at that point, for 6 months. Although he was 20 months old, he wore a size 6 month waist. We were told that a nasogastric tube (NG tube) would need to be placed so that Ben could be placed on a purely elemental diet. An elemental diet is a highly specialized formula that has no food proteins, and is therefore hypoallergenic. Two days before the NG was put in, he quit eating and drinking.
Ben did well with the NG. We were worried that he would pull it out constantly. He very rarely pulled it out, but when he did, it had to be put back in. It is a difficult thing to pin your own child down and to put a tube down their nose and into their stomach. I often felt like a cruel mom, but I know that without the tube, he would die. One of the problems with NGs for kids, is that the tube can be felt in their nose, and down their throat. This often leads to a child developing oral aversions, and Ben did develop those. What that means is that he does not want anything near or in his mouth. He can no longer tolerate textures in his mouth. His gag reflex has moved forward in his mouth, so he gags very easily. The NG eventually caused an ulcer in his esophagus, so a gastrostomy tube was placed. (G-tube for short.)
Because EE is associated with allergies, we were referred to an allergist. He did skin prick testing, and all of those tests turned up negative. He then did a new type of allergy testing called a PATCH test, which measures a different type of allergic reaction that the body can have. He wore a bunch of metal disks on his back that had pure organic food pureed, placed on the disks, then taped to his back. After 48 hrs. the tape and disks are removed. When his was removed, the area where the corn meal had been was literally eaten off. It was the worst reaction his doctor had seen to the PATCH test. Ben is severely allergic to corn.
After being on the formula for atleast 6 wks., he had another EGD to determine if the formula had helped get rid of the eosinophils. Amazingly, it did work, and the eos were gone. With the permission of Ben's food allergist, we began to try to introduce foods again, but Ben continued to refuse the food, often going days without eating anything by mouth.
Ben continues to refuse food and drink. He is completely dependent on his feeding tube for all of his nutrition. We were referred to a feeding clinic to try to teach Ben to eat. The waiting lists are long for the few clinics that specialize in this, and it took us 4 months to get into one. I am relieved to turn Ben's feeding over to the experts, and hope so much that he can be helped.
Ben was born at 36 wks. gestation. He was baby "A" in a twin pregnancy. He weighed in at a feather weight of 3lbs. 6oz., while his twin brother weighed a healthy 5lbs. 6oz. They certainly did not look like twins. Ben stayed in the NICU for 11 days while he had problems regulating his temperature, experienced jaundice, and learned to suck from a bottle. He was very difficult to feed, and for him to take in 1cc of formula took maximum effort on our part. It often took 30 minutes to get that 1-2 cc's down. He worked up to about 15cc, or half an ounce by the time he was discharged. He had to be fed every 3 hrs. and was limited to 30 min. per feeding. We were told to hold him as little as possible so as not to stress him, or to make him burn any more calories than he had to. His weight at discharge was 3lbs. 10oz. I was very nervous about taking him home.
Once at home, Ben put on weight slowly, but steadily. He continued to be difficult to feed by drinking only small amounts from a bottle, while his twin soon learned to drain a bottle. Ben's twin grew as he should and began to meet his developmental milestones, while Ben seemed to only gain inchstones. Ben would often aspirate on his formula as well. The most he ever drank was 6 oz., and that happened just a few times. He usually would get 2-3 oz. down, and then the fighting would start. I would keep the bottle in his mouth, and he would try to push it out. Eventually he learned to fold the bottle nipple over with his tongue so that he couldn't drink. I began to see a feeding therapist, but the going was so slow. During this time, he was diagnosed with developmental delays, and he was usually 3 or more months behind his twin. When solids were introduced, Ben was initially the better eater, but it wasn't long before his twin assumed that role. Ben would often choke or gag, then throw up what was fed. It began to take me longer and longer to feed him. I would reheat his food several times during a feeding. I also was told to add vegetable oil to his food to add calories--yuck!
By the time Ben was just over a year, I took him to a gastroenterologist. She performed an esophagogastroduodenoscopy. An "EGD" is a procedure in which a special scope is put down the throat, into the stomach, then duodenum, to examine for abnormalities. Ben's EGD showed redness in his esophagus, so a pH probe was put in. To do a pH probe, a probe is threaded through the nose, and then down the esophagus. It measures the pH of the esophagus at various places, and takes data for 24 hrs. Ben's pH probe showed moderate gastroesophageal reflux disease, or GERD. He was apparently having a lot of heart burn. He was given Prevacid as a prescription for this condition. I was hoping that the Prevacid would help make eating more pleasurable for him by stopping the heartburn, but he did not change his eating habits.
The GI doctor also prescribed a modified barium swallow for Ben to try to understand his aspiration of liquid. In the "MBS", Ben was given barium to drink that was of different thicknesses. It was discovered that he was aspirating liquids that were thinner than honey, so we had to thicken his drinks with a special thickener. That was a difficult thing to do since most drinks of that thickness will not go through a sippy cup. We had to use cups with no valves which were messy at best. He was drinking Pediasure for extra calories, and to his food we would add Duocal, a powdered calorie additive.
Because Ben had swallowing problems, we tried a therapy called VitalStim. VitalStim is done by placing small electrodes on the neck and throat muscles. A small current is introduced through the leads and will cause the muscles to contract. The concept is similar to lifting weights in that a person will contract their muscles multiple times in doing a repetition of weights, eventually strengthening the muscle. Ben's muscles were caused to contract multiple times by the electrical messages sent by the leads on his throat. The process is very painful, and must be endured for an hour, for atleast 20 almost consecutive days. I tried the VitalStim, but could only endure a few minutes. I admire my tough little guy for making it through that. The MBS following the VitalStim appeared normal, so that therapy worked well for Ben, and we feel it was worth it.
When Ben was 20 months old, we did another EGD to determine the condition of his esophagus. We needed to find out if the Prevacid was working. It appeared that the esophagus was healing, and the redness and irritation were going away. For that we were very excited. As part of the EGD, most doctors take biopsies. With this endoscopy, Ben's biopsies showed a large amount of eosinophils had gathered in his esophagus. An eosinophil is a white blood cell that is often associated with allergies. Ben was now given the diagnosis of eosinophilic esophagitis. "EE" is an auto-immune disorder in which eosinophils are drawn to the esophagus and cause irritation and inflammation. Doctors do not know why this happens, and really do not know much about the disease. A person with EE usually has a difficult time swallowing, food can get caught in their throat, experience a lot of pain when swallowing, weight loss, and refusal to eat. In Ben's case, he simply refused to eat. He had not gained weight, at that point, for 6 months. Although he was 20 months old, he wore a size 6 month waist. We were told that a nasogastric tube (NG tube) would need to be placed so that Ben could be placed on a purely elemental diet. An elemental diet is a highly specialized formula that has no food proteins, and is therefore hypoallergenic. Two days before the NG was put in, he quit eating and drinking.
Ben did well with the NG. We were worried that he would pull it out constantly. He very rarely pulled it out, but when he did, it had to be put back in. It is a difficult thing to pin your own child down and to put a tube down their nose and into their stomach. I often felt like a cruel mom, but I know that without the tube, he would die. One of the problems with NGs for kids, is that the tube can be felt in their nose, and down their throat. This often leads to a child developing oral aversions, and Ben did develop those. What that means is that he does not want anything near or in his mouth. He can no longer tolerate textures in his mouth. His gag reflex has moved forward in his mouth, so he gags very easily. The NG eventually caused an ulcer in his esophagus, so a gastrostomy tube was placed. (G-tube for short.)
Because EE is associated with allergies, we were referred to an allergist. He did skin prick testing, and all of those tests turned up negative. He then did a new type of allergy testing called a PATCH test, which measures a different type of allergic reaction that the body can have. He wore a bunch of metal disks on his back that had pure organic food pureed, placed on the disks, then taped to his back. After 48 hrs. the tape and disks are removed. When his was removed, the area where the corn meal had been was literally eaten off. It was the worst reaction his doctor had seen to the PATCH test. Ben is severely allergic to corn.
After being on the formula for atleast 6 wks., he had another EGD to determine if the formula had helped get rid of the eosinophils. Amazingly, it did work, and the eos were gone. With the permission of Ben's food allergist, we began to try to introduce foods again, but Ben continued to refuse the food, often going days without eating anything by mouth.
Ben continues to refuse food and drink. He is completely dependent on his feeding tube for all of his nutrition. We were referred to a feeding clinic to try to teach Ben to eat. The waiting lists are long for the few clinics that specialize in this, and it took us 4 months to get into one. I am relieved to turn Ben's feeding over to the experts, and hope so much that he can be helped.
The First Day
Thursday, November 9, 2006
Today was Ben's first day of his full schedule. He began the day in the clinic at 9:45am with a feeding. I watched on a TV screen down the hall. His feeding therapist is Cynthia, and she is trying to ease Ben into the program. She began with an empty spoon and put it to his lips. He wanted to grab the spoon and to take control of it, but Cynthia hung on. Each time he would allow her to touch his lips with the spoon, he was given a toy and praise. She also introduced a "squeeze bottle" which is a hair color bottle with the lid snipped off and refrigerator tubing pulled through the hole. The bottle was empty, but she put it into his mouth to get him used to it. Each session today was about 15 minutes in length. The other 3 feedings used only the squeeze bottle and not the spoon, since he had such a hard time with it. Ben also had music therapy today. His music therapist said he liked it, and was warming up to everyone by the end of the session.
I got "comfort hour" today which was a welcomed break. During comfort hour, the parents can eat lunch in a conference room while their child is being watched by staff. Today we got a 10 minute massage, and I thoroughly enjoyed being pampered. It was a great opportunity to chat with the other moms as well. I get small breaks while Ben is at his preschool, music, and recreation time also. Today he interacted with the other kids and they helped to keep him occupied as well. The day seemed a bit long, but I found plenty to do.
Tomorrow the therapists will start "blocking." Blocking is what a therapist does to keep the child from constantly hitting the spoon away. She may hold his hands down, or one may stand behind the child and block his hands from coming up or moving from side to side. They do not hold on firmly or pin the child, but simply block the hands. This was explained to me today so that I could understand what they would be doing with Ben tomorrow, and also to get permission from me to use that technique. I am very interested to see how Ben reacts to this. He has been very good natured so far.
Today was Ben's first day of his full schedule. He began the day in the clinic at 9:45am with a feeding. I watched on a TV screen down the hall. His feeding therapist is Cynthia, and she is trying to ease Ben into the program. She began with an empty spoon and put it to his lips. He wanted to grab the spoon and to take control of it, but Cynthia hung on. Each time he would allow her to touch his lips with the spoon, he was given a toy and praise. She also introduced a "squeeze bottle" which is a hair color bottle with the lid snipped off and refrigerator tubing pulled through the hole. The bottle was empty, but she put it into his mouth to get him used to it. Each session today was about 15 minutes in length. The other 3 feedings used only the squeeze bottle and not the spoon, since he had such a hard time with it. Ben also had music therapy today. His music therapist said he liked it, and was warming up to everyone by the end of the session.
I got "comfort hour" today which was a welcomed break. During comfort hour, the parents can eat lunch in a conference room while their child is being watched by staff. Today we got a 10 minute massage, and I thoroughly enjoyed being pampered. It was a great opportunity to chat with the other moms as well. I get small breaks while Ben is at his preschool, music, and recreation time also. Today he interacted with the other kids and they helped to keep him occupied as well. The day seemed a bit long, but I found plenty to do.
Tomorrow the therapists will start "blocking." Blocking is what a therapist does to keep the child from constantly hitting the spoon away. She may hold his hands down, or one may stand behind the child and block his hands from coming up or moving from side to side. They do not hold on firmly or pin the child, but simply block the hands. This was explained to me today so that I could understand what they would be doing with Ben tomorrow, and also to get permission from me to use that technique. I am very interested to see how Ben reacts to this. He has been very good natured so far.
Wednesday, November 08, 2006
Tuesday, November 7, 2006
Today we arrived at the feeding clinic after getting lost a few times. I think GPS would've been a great thing to have rented. We began our day with weight, height measurements, and a visit with the GI specialist. The staff is very friendly and seems excited to have us here. I fed Ben 2 meals...or offered food anyway. The clinic is very scientific about the whole process, weighing and measuring all of the food, noting each bite taken or refused, and observing all behaviors. These sessions were recorded onto video tape as well. It was intersting to meet the other parents and to watch their kids on the videos. It is nice to talk with other parents who deal with non-eaters, and can relate to what it is like to be in this situation. They all share similar frustrations. By the end of the day, I was exhaused, but I am excited to get going in the program, and to watch Ben try to learn to eat food.
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