So, to continue this story and help others learn more (as well as myself). I have asked several people to share their stories as well. I can only tell what I know about my son. They have agreed which Im SOOO excited about! I think I would like them to email me posts they want to post and I will post them with their names on it. Their comments to me are the REASON I wanted to do this. If you are reading this and you have a story to share PLEASE email me so I can post it!! Im going to try posting alot of different topics and things I have tried, if you have a comment please share!
Weight Gain/Losses
When Deacon was born, he weighed 7lbs 13ozs. When he left the hospital a month later, he weighed the same. My pediatrician took his blood several times and found out that he was very low on salt. You can't gain weight without salt. So she put him on saline 4x a day. That went on for 1 month. He gained 3 lbs. It was crazy fast! Then they took him off of it because it was going too fast and they were hoping he would just continue gaining. Well he did for a while. At 4 months old, he weighed 12lbs. It was great! It was like he was a normal child. Then we went to his 5 month check up and found out he hadn't gained and she told me to start feeding him food. He was so not ready. He would scream when I tried to feed him. It was awful. But whenever I would go back to the surgeon or the ped they would weigh him and he would be 12lbs. I refused to feed him when he was 6 months. He was getting a complex. lol. We just amped up him formula to 24 calorie and mixed it with baby cereal. We did that because the formula was going right through him. So acidic. He was 12lbs even when they gave him his stoma closure surgery. That was on Jan 16th, 2009. He was 8 months. After that surgery he gained 2 lbs in 2 months. We were so happy! We had started feeding him again solids right after his surgery. And he loved them, finally. He actually ate real meals. We were told to feed him high fat foods, like potatoes with salt and butter. But I have found that if it has fats and or oils in it that it goes through faster. Therefore hes not getting anything from it. I have found that breads are great! They actually slow down his food and make it thicker. So for now, we are feeding him everything that we eat. I have been thinking and looking for something more for him. Something that will hopefully replace all the nutrients in his formula. I would like to take him off formula at a year. But with all the articles I have been reading about lactose intolerance in HD babies, Im thinking about putting him on almond milk. I went and saw a natural path the other day and she gave me a protein shake for children. Its called Ultra Care for Kids. Its got lots of great stuff for kids trying to gain weight. The only thing is that because he has no colon (which absorbs protein) Im not sure how much if any of it he absorbs. The reason I say that is because whenever he takes it his poos go very liquidity. Im not sure on what to do now. Do I give him more than I have been hoping that he absorbs more because he's eating more? Or do I give up because Im throwing my money away and he's not getting enough to warrant giving it to him? It is also making him very full. He dosent eat as much as usual. Im not sure what to do.
Plus because he is missing the valve that holds the bacteria in his colon, he has alot of bacteria. So the GI prescribed antibiotics. I go and see him at the end of this month. Im not sure I want to continue with them. Im pretty sure he wants to have him on them for a long time. So instead I've been giving him probiotics. I give him the antibiotics in the morning and night and I give him the probiotics at noon. Im trying to keep a well watchful eye on him to see what they do. Any thoughts????
Showing posts with label Hirschsprung's. Show all posts
Showing posts with label Hirschsprung's. Show all posts
Sunday, April 5, 2009
Thursday, April 2, 2009
My little Panda Bear...
My son Deacon was born on May 23rd 2008 at 7:15pm. He was a beautiful blue eyed baby and he weighed 7lbs 12ozs. I BF him once right after he was born and again at around 11pm. His last feeding was at 4am that next morning. He was very lethargic and kept throwing up a little bit now and again. That day I kept telling the nurses that something was wrong. My husband Joe has Hirschsprung's as well and we knew that our children could get it as well. Finally at 11pm that night our doctor sent us to the Children's Hospital in Vancouver. She had taken an Xray and seen the big loops of his intestines. He was then diagnosed 3 days later with Hirschsprung's. They had done a biopsy to find it. So they scheduled his surgery to be for June 4th. They told us, the surgery might be a Pull-through or he might have to have a colostomy bag. It all depended on the biopsies they would preform during the surgery to see how extensive it was. 5 hours later they came out and told us that he had long segment and that he was so extensive that he needed an iliostomy bag because he had no colon left. That was really hard to take. We spent the next 2 weeks at the hospital waiting to be released. They finally released us a few days before his 1 month birthday!
He had his iliostomy bag for 5 months before his surgery was scheduled to be in Nov. They went in and it was another 5 hour surgery. When they came out this time they told us they had preformed reconstructive surgery on his small intestines. They had connected them lengthwise together with a piece of his old colon. They did this so that he could better absorb water, salt and protein. But it was so extensive that they couldn't remove his stoma. So they had put in another one on the other side. Sucky!! So he had that one until his Jan 16th surgery. His stoma closure!! Yaa!! That surgery was only 1 hour long! But it was hard for him to adjust so we ended up spending an extra 5 days in the hospital. He was screaming from the gas pain! He had never had gas before! So after that surgery I started looking at him like he was a normal boy. I didn't want to think about potty training, or anything else. I just wanted to focus on my two sons.
On March 17th, I had to rush him to the ER at Children's because he had the flu and he had lost 2lbs in 2 days! They told me later that his kidney's had almost failed! He had been very close to dying.
So that's why I wanted to start this. I was hoping that other parents could give me advise and I could tell them what has been working for me. Right now Deacon is 10 months old and he weighs 15lbs. From the age of 4 months to 10, he weighed the same, 12 lbs. That's scary! So right now I'm trying different things to get him to gain weight.
I also know that 80% of Hirschsprung's is short segment. I know that Deacon is in 5% of Hirschsprung's. I'm looking for other blogs with other types of Hirschsprung's so that if you have a question, you can find it here! We need to stick together and talk about it! If Ive gone through it and it hasnt worked, maybe you need that information!
Anyways... comments are always loved!!
He had his iliostomy bag for 5 months before his surgery was scheduled to be in Nov. They went in and it was another 5 hour surgery. When they came out this time they told us they had preformed reconstructive surgery on his small intestines. They had connected them lengthwise together with a piece of his old colon. They did this so that he could better absorb water, salt and protein. But it was so extensive that they couldn't remove his stoma. So they had put in another one on the other side. Sucky!! So he had that one until his Jan 16th surgery. His stoma closure!! Yaa!! That surgery was only 1 hour long! But it was hard for him to adjust so we ended up spending an extra 5 days in the hospital. He was screaming from the gas pain! He had never had gas before! So after that surgery I started looking at him like he was a normal boy. I didn't want to think about potty training, or anything else. I just wanted to focus on my two sons.
On March 17th, I had to rush him to the ER at Children's because he had the flu and he had lost 2lbs in 2 days! They told me later that his kidney's had almost failed! He had been very close to dying.
So that's why I wanted to start this. I was hoping that other parents could give me advise and I could tell them what has been working for me. Right now Deacon is 10 months old and he weighs 15lbs. From the age of 4 months to 10, he weighed the same, 12 lbs. That's scary! So right now I'm trying different things to get him to gain weight.
I also know that 80% of Hirschsprung's is short segment. I know that Deacon is in 5% of Hirschsprung's. I'm looking for other blogs with other types of Hirschsprung's so that if you have a question, you can find it here! We need to stick together and talk about it! If Ive gone through it and it hasnt worked, maybe you need that information!
Anyways... comments are always loved!!
Wednesday, April 1, 2009
The facts
Hi! My name is Megan and I have a 10 month old boy with long segment Hirschsprung's. I have decided to start this blog to give people somewhere to learn more about it. When he was first diagnosed I looked around on the web and I couldn't really find something that answered my questions. So I read medical research papers. Now I need other parents who have been through what I have (or something like it) to post their stories. My hope is that parents will come here to figure out how to help their child through Hirschsprung's and debate what to do or not to do. I would LOVE your thoughts and input! How is YOUR child doing?
First I would like to explain more about the small intestines and colon.
1. The esophagus is a long muscular tube, which moves food from the mouth to the stomach.
2. The abdomen contains all of the digestive organs.
3. The stomach, situated at the top of the abdomen, normally holds just over 3 pints (about 1500 ml) of food from a single meal. Here the food is mixed with an acid that is produced to assist in digestion. In the stomach, acid and other digestive juices are added to the ingested food to facilitate breakdown of complex proteins, fats and carbohydrates into small, more absorb able units.
4. A valve at the entrance to the stomach from the esophagus allows the food to enter while keeping the acid-laden food from "refluxing" back into the esophagus, causing damage and pain.
5. The pylorus is a small round muscle located at the outlet of the stomach and the entrance to the duodenum (the first section of the small intestine). It closes the stomach outlet while food is being digested into a smaller, more easily absorbed form. When food is properly digested, the pylorus opens and allows the contents of the stomach into the duodenum.
6.The small intestine is about 15 to 20 feet long (4.5 to 6 meters) and is where the majority of the absorption of the nutrients from food takes place. The small intestine is made up of three sections: the duodenum, the jejunum and the ileum.
7. The duodenum is the first section of the small intestine and is where the food is mixed with bile produced by the liver and with other juices from the pancreas. This is where much of the iron and calcium is absorbed.
8. The jejunum is the middle part of the small intestine extending from the duodenum to the ileum; it is responsible for digestion.
9. The last segment of the intestine, the ileum, is where the absorption of fat-soluble vitamins A, D, E and K and other nutrients are absorbed.
10. Another valve separates the small and large intestines to keep bacteria-laden colon contents from coming back into the small intestine.
11. In the large intestines, excess fluids are absorbed and a firm stool is formed. The colon may absorb protein, when necessary.
Deacon has no colon. He is missing #11. "Can I get a number 11?!!"
He is also missing # 10, and a part of #9. He also has no appendix. So in medical terms he has total colonic aganglionosis. Which means, total loss of colon. Or something like that...
Just for some facts Ive grabbed a research article following Deacon's type of Hirschsprung's:
A 32-year retrospective review from 1972 to 2004 analyzed complications and long-term outcomes in children with total colonic aganglionosis (TCA) as they relate to the procedure performed.
Results
Thirty-six patients (27 boys, 9 girls) had TCA. The level of aganglionosis was distal ileum(the point of connection between the small and large intestines.) (26), mid–small bowel (8), midjejunum (1), and entire bowel (1).
Enterostomy was performed in 35 of 36. Eight developed short bowel syndrome. Twenty-nine (81%) had a pull-through at 15 ± 6 months (modified Duhamel 20, Martin long Duhamel 4, and Soave 5). Six had a Kimura patch.
Postoperative complications (including enterocolitis) were more common after long Duhamel and Soave procedures.
Seven (19%; 2 with Down's syndrome) died (3 early, 4 late) from pulmonary emboli (1), sepsis (1), fluid overload (1), viral illness (1), liver failure (1), arrhythmia (1), and total bowel aganglionosis (1).
Mean follow-up was 11 ± 9 years (range, 6 months-29 years). Twenty-four (83%) of 29 patients exhibited growth by weight of 25% or more, 21 (91%) of 23 older than toddler age had 4 to 6 bowel movements per day, and 17 (81%) of 21 were continent.
In 5 of 6, the Kimura patch provided functional benefit with proximal disease.
Conclusion
Long-term survival was 81%. The highest morbidity occurred with long Duhamel or Soave procedures. The modified Duhamel is our procedure of choice in TCA. Bowel transplantation is an option for TCA with unadapted short bowel syndrome.
I know that's alot of information. But it has helped me KNOW what is going on inside my son. I wanted to start with some facts, so now I will tell you a little about Deacon. :)
First I would like to explain more about the small intestines and colon.
1. The esophagus is a long muscular tube, which moves food from the mouth to the stomach.
2. The abdomen contains all of the digestive organs.
3. The stomach, situated at the top of the abdomen, normally holds just over 3 pints (about 1500 ml) of food from a single meal. Here the food is mixed with an acid that is produced to assist in digestion. In the stomach, acid and other digestive juices are added to the ingested food to facilitate breakdown of complex proteins, fats and carbohydrates into small, more absorb able units.
4. A valve at the entrance to the stomach from the esophagus allows the food to enter while keeping the acid-laden food from "refluxing" back into the esophagus, causing damage and pain.
5. The pylorus is a small round muscle located at the outlet of the stomach and the entrance to the duodenum (the first section of the small intestine). It closes the stomach outlet while food is being digested into a smaller, more easily absorbed form. When food is properly digested, the pylorus opens and allows the contents of the stomach into the duodenum.
6.The small intestine is about 15 to 20 feet long (4.5 to 6 meters) and is where the majority of the absorption of the nutrients from food takes place. The small intestine is made up of three sections: the duodenum, the jejunum and the ileum.
7. The duodenum is the first section of the small intestine and is where the food is mixed with bile produced by the liver and with other juices from the pancreas. This is where much of the iron and calcium is absorbed.
8. The jejunum is the middle part of the small intestine extending from the duodenum to the ileum; it is responsible for digestion.
9. The last segment of the intestine, the ileum, is where the absorption of fat-soluble vitamins A, D, E and K and other nutrients are absorbed.
10. Another valve separates the small and large intestines to keep bacteria-laden colon contents from coming back into the small intestine.
11. In the large intestines, excess fluids are absorbed and a firm stool is formed. The colon may absorb protein, when necessary.
Deacon has no colon. He is missing #11. "Can I get a number 11?!!"
He is also missing # 10, and a part of #9. He also has no appendix. So in medical terms he has total colonic aganglionosis. Which means, total loss of colon. Or something like that...
Just for some facts Ive grabbed a research article following Deacon's type of Hirschsprung's:
A 32-year retrospective review from 1972 to 2004 analyzed complications and long-term outcomes in children with total colonic aganglionosis (TCA) as they relate to the procedure performed.
Results
Thirty-six patients (27 boys, 9 girls) had TCA. The level of aganglionosis was distal ileum(the point of connection between the small and large intestines.) (26), mid–small bowel (8), midjejunum (1), and entire bowel (1).
Enterostomy was performed in 35 of 36. Eight developed short bowel syndrome. Twenty-nine (81%) had a pull-through at 15 ± 6 months (modified Duhamel 20, Martin long Duhamel 4, and Soave 5). Six had a Kimura patch.
Postoperative complications (including enterocolitis) were more common after long Duhamel and Soave procedures.
Seven (19%; 2 with Down's syndrome) died (3 early, 4 late) from pulmonary emboli (1), sepsis (1), fluid overload (1), viral illness (1), liver failure (1), arrhythmia (1), and total bowel aganglionosis (1).
Mean follow-up was 11 ± 9 years (range, 6 months-29 years). Twenty-four (83%) of 29 patients exhibited growth by weight of 25% or more, 21 (91%) of 23 older than toddler age had 4 to 6 bowel movements per day, and 17 (81%) of 21 were continent.
In 5 of 6, the Kimura patch provided functional benefit with proximal disease.
Conclusion
Long-term survival was 81%. The highest morbidity occurred with long Duhamel or Soave procedures. The modified Duhamel is our procedure of choice in TCA. Bowel transplantation is an option for TCA with unadapted short bowel syndrome.
I know that's alot of information. But it has helped me KNOW what is going on inside my son. I wanted to start with some facts, so now I will tell you a little about Deacon. :)
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