I cannot believe the difference in my daughter after just one Remicade infusion. She is eating so much better and has an abundance of energy. She has her second infusion on Tuesday and just hope that her improvement continues for a very long time.
For any of you suffering from Crohn's/UC or are a parent (like me) who has a child with Crohn's or UC, if you feel that nothing else is working for you or your child, please speak with your GI doctor about Remicade. I know it may seem like a scary thought and to be quite frank, it is! I was scared to death for my little girl knowing that there are many risks involved. However, I did my research, wrote down many questions, talked extensively to the doc and thought about it ALOT afterwards. I realized that I wanted my daughter to have relief more quickly than the alternatives had to offer. I also thought about the risks involved and was told by the GI doctor that the risks are minimal and rare as well as the side effects. I was expecting something to happen when we went for her first infusion.The nurse assigned to us stated that they perform at least 15 Remicade infusions a day and no one has had a bad reaction. This made me feel a little more at ease. My daughter had not one reaction during the infusion. I was so happy. This infusion has done wonders for her!
So, in my opinion, Remicade is worth a try if nothing else seems to be working. Everyone's experience with this is different but if I can offer a little bit of hope for someone, than I will tell of my daughter's experience with Remicade.
Also, please check out this support website. It is my favorite!
www.mycrohnsandcolitisteam.com
If you would like to follow me, please add your e-mail to the Follow By E-Mail section. I would be most appreciative!
Until next time....Laugh and Love Life!
Tuesday, October 28, 2014
Wednesday, October 22, 2014
Remicade Infusion went well!
Hello Again!
Yesterday my daughter had her first Remicade infusion. She had no bad reactions and tolerated it very well. I think the hardest part was just getting the IV in! I am so glad she didn't react badly to it! After the treatment, she was so hungry that she ate 2 grilled cheese sandwiches! That is the most I have seen her eat at once in over 2 weeks. I am so happy!
I also don't think we would have made it through this without the support of family and friends. I know everyone's good thoughts and prayers helped us through and will always be grateful. I had also turned to the support of an online community called My Crohn's and Colitis Team. Out of all the support forums that I have been to, this is, by far, the best! From my first post at this site, I have felt an overwhelming support of kindness and caring and these people are complete strangers! I find that very fascinating! To know that people from all areas of the US and even Canada can provide comfort to you by a small gesture or words of encouragement is so wonderful. It made me feel good and hopeful that my daughter will find some normalcy in her life.
Her next infusion is in 2 weeks and am confident that it will go as well as the first time. We were approached by someone that works for the research department at the hospital to inform us that my daughter qualified to help with research into Crohn's disease and find a possible cure for the future. This is all due to her being so young. It makes it even more interesting that neither my husband or I have Crohn's and no one in our families do. However, as stated before, auto-immune disorders do run in my side of the family......bummer! In any case, all it takes is a blood test from anyone willing to participate and no personal information will be indicated on anything. We will just be a number. This is the first time I wouldn't mind being "just a number." In any case, I still want to think about it.
The website below is for My Crohn's and Colitis Team. It is such a good site!
www.mycrohnsandcolitisteam.com
Laugh and Love Life!
Yesterday my daughter had her first Remicade infusion. She had no bad reactions and tolerated it very well. I think the hardest part was just getting the IV in! I am so glad she didn't react badly to it! After the treatment, she was so hungry that she ate 2 grilled cheese sandwiches! That is the most I have seen her eat at once in over 2 weeks. I am so happy!
I also don't think we would have made it through this without the support of family and friends. I know everyone's good thoughts and prayers helped us through and will always be grateful. I had also turned to the support of an online community called My Crohn's and Colitis Team. Out of all the support forums that I have been to, this is, by far, the best! From my first post at this site, I have felt an overwhelming support of kindness and caring and these people are complete strangers! I find that very fascinating! To know that people from all areas of the US and even Canada can provide comfort to you by a small gesture or words of encouragement is so wonderful. It made me feel good and hopeful that my daughter will find some normalcy in her life.
Her next infusion is in 2 weeks and am confident that it will go as well as the first time. We were approached by someone that works for the research department at the hospital to inform us that my daughter qualified to help with research into Crohn's disease and find a possible cure for the future. This is all due to her being so young. It makes it even more interesting that neither my husband or I have Crohn's and no one in our families do. However, as stated before, auto-immune disorders do run in my side of the family......bummer! In any case, all it takes is a blood test from anyone willing to participate and no personal information will be indicated on anything. We will just be a number. This is the first time I wouldn't mind being "just a number." In any case, I still want to think about it.
The website below is for My Crohn's and Colitis Team. It is such a good site!
www.mycrohnsandcolitisteam.com
Laugh and Love Life!
Tuesday, October 14, 2014
The Unknown Possibilities
Today was the day that I made the appointment for my daughters first Remicade IV infusion. It is scheduled for next Tuesday. I'm a bit nervous but hopeful that this will work, otherwise we are at square one.... again. I am also feeling a little scared too. I'm scared that this is too much for her little body to handle, that she has a bad reaction and that she could develop something else to complicate things more. These thoughts will always be in the back of my head even though the GI doctor reassured me of a positive outcome. However, I am keeping the mindset that this is the proverbial "light at the end of the tunnel" for her.....for us. I suppose I will feel more at ease once I see the medication actually working.
If Remicade works for her, this could potentially mean remission. THAT would be awesome! She is young and needs to live her childhood without the fear or thought of belly pain or fatigue. It could also eliminate the need for future surgery which is something many Crohn's patients eventually require. Another possibility is decrease in medication. She wouldn't have to take medication everyday....only the Remicade every 6 to 8 weeks.
In any case, Remicade is the best solution for her at the moment and pray that it will work!
I will be blogging soon.....until then.........Laugh and Love Life!
Tuesday, October 7, 2014
A Picky Eater with Crohn's......
Since my daughter's diagnosis of Crohn's disease, we have been watching what she eats as certain foods can initiate a flare. However, because she was so malnourished and lost a lot of weight, the GI doctor had put her on a high calorie diet. My thoughts....How am I going to watch what she eats being on a high calorie diet and a picky eater? The doctors office gave me a list of high calorie foods which was great but was only able to use some of these suggestions as my daughter wouldn't eat much of what was on this list. I then researched online for recipes and didn't find much that was Crohn's friendly and high calorie. Most of what I encountered was geared towards adult food palates and healthy eating. The healthy eating part isn't a problem but when you have a child on a high calorie diet, eating healthy isn't an option. High calorie usually involves cream based, buttery, fat laden foods! UGH! This can also be a challenge when you have a malabsorption issue which can only be helped with eating an abundance of fruits and vegetables (not something she likes). I also had to consider in my recipes the foods that are suggested for Crohn's disease patients to steer clear of like anything fried (not good for the gut; too much non-absorbable fat), processed ( ex: box mac and cheese) and seeds. These are the 3 things that I do not incorporate in my meals. However, on occasion, you may try them but beware it could potentially cause a flare.
So, I certainly have my work cut out for me and still have more to figure out on foods. I was keeping a food log to keep track of what she ate, how much she ate and how it made her feel. I stay away from certain foods and always give her the things she likes, however, she seemed to go through a flare every so often even though she had non flare times on the foods she ate before a flare. Her GI doctor says that the initial inflammation just didn't seem to clear up with the Prednisone. That is why we are starting Remicade. Once I see that she is not having any flares for a length of time and the existing inflammation is gone, then I will start a new food log.
The one thing I noticed about my daughter is that she will like something one time and not the next time I serve the same thing or even halfway through the meal. This can be very frustrating! Now, I just serve her the foods I know she likes most often and can tolerate as well as try to introduce some others. Below is a list of the foods she will eat and do not cause any intestinal issues for her:
So, I certainly have my work cut out for me and still have more to figure out on foods. I was keeping a food log to keep track of what she ate, how much she ate and how it made her feel. I stay away from certain foods and always give her the things she likes, however, she seemed to go through a flare every so often even though she had non flare times on the foods she ate before a flare. Her GI doctor says that the initial inflammation just didn't seem to clear up with the Prednisone. That is why we are starting Remicade. Once I see that she is not having any flares for a length of time and the existing inflammation is gone, then I will start a new food log.
The one thing I noticed about my daughter is that she will like something one time and not the next time I serve the same thing or even halfway through the meal. This can be very frustrating! Now, I just serve her the foods I know she likes most often and can tolerate as well as try to introduce some others. Below is a list of the foods she will eat and do not cause any intestinal issues for her:
- chicken fingers (baked) with honey mustard sauce ( I make my own using Dijon mustard, honey and sour cream or plain yogurt)
- mashed potatoes
- carrots with butter and brown sugar
- pancakes
- scrambled eggs
- green beans
- mac and cheese (I make my own)
- cream dried (chipped) beef
- salad (butter lettuce)
- peanut butter (only creamy texture)
These foods are easily digestible and good for Crohn's. We definitely eat a lot of chicken and mashed potatoes...this is fine with me because I love them both! Suggestion: steam the vegetables as it makes them softer and easy for the intestines to digest. From what I read, there are no real food restrictions for Crohn's patients. Everyone is different as to what causes a flare. What one can eat and be fine...can cause problems for another. It is all about making smart food choices, being aware of your trigger foods and making sure you are bulking up on calories and nutrients during non flare moments to offset the loss of both during a flare.
Below is a link that I found quite useful for recipes and Crohn's friendly foods:
www.everydayhealth.com/health-report/crohns-disease/joy-bauer-healthy-recipes-for-crohns.aspx
This link is a blog of a friend that has some very good couponing ideas. It is helpful as food prices keep rising!
www.ettsettra.blogspot.com
Any suggestions, advice, comments or questions are welcome and appreciated! Hope this was helpful!
Until next time.....Laugh and Love Life!
This link is a blog of a friend that has some very good couponing ideas. It is helpful as food prices keep rising!
www.ettsettra.blogspot.com
Any suggestions, advice, comments or questions are welcome and appreciated! Hope this was helpful!
Until next time.....Laugh and Love Life!
Friday, October 3, 2014
Next step for treatment and next blog topic
Hello Again,
Quick update: I have made the appointment for my daughter to get the PPD (TB) test next week. This is protocol for starting Remicade. I am still nervous about the whole process but really hope this works for her. I will post when her treatment actually starts and what the outcome was for her first infusion.
I think my next topic will be food for Crohn's disease both for adults, kids and picky eaters. I am trying to compile some information that will be useful but hope that I can blog about it early next week. So, please stay tuned for that if you are interested.
If you have any topic ideas or the like, I am open to all suggestions. Please know that everyone needs some type of support even if it isn't related to my specific story. I think that when anyone has a child with an illness or any loved one, we all go through the same emotional processes. Please know that I am here to help.
Till next time... Laugh and Love Life!
Quick update: I have made the appointment for my daughter to get the PPD (TB) test next week. This is protocol for starting Remicade. I am still nervous about the whole process but really hope this works for her. I will post when her treatment actually starts and what the outcome was for her first infusion.
I think my next topic will be food for Crohn's disease both for adults, kids and picky eaters. I am trying to compile some information that will be useful but hope that I can blog about it early next week. So, please stay tuned for that if you are interested.
If you have any topic ideas or the like, I am open to all suggestions. Please know that everyone needs some type of support even if it isn't related to my specific story. I think that when anyone has a child with an illness or any loved one, we all go through the same emotional processes. Please know that I am here to help.
Till next time... Laugh and Love Life!
Thursday, October 2, 2014
My Crohn's Story
Hello Everyone,
My decision to blog came with much thought and prayer and decided that this is something I should be doing for good reason. My goal is to share my story, get and receive advice and hopefully help others dealing with the same struggles when caring for a loved one with Crohn's Disease.
My story begins back in June, 2014 when my 6 year old daughter was in the hospital for a week and subsequently diagnosed with Crohn's disease. My first thought was "OH! That young?" However, I was a little relieved that it wasn't anything worse but knew the diagnosis was not optimal. My daughter had a battery of tests performed from ultrasounds to colonoscopy/endoscopy. Let me tell you, that I have never seen such a brave and strong 6 year old! Her resilience kept me strong! She did have her moments but was very brave through it all and is to this day. There is such a range of emotion that evolves when you have a sick child, don't know what is going on and feel helpless because you do not know how to help. There were many, many times that I just wanted to curl up and cry like a baby. However, I would never let her see that side of me. To top it all off, a month later, I was laid off of a job I held for over 8 years. What else could go wrong? Although, I would like to think of it as a blessing in disguise.
The doctor's reassured us that it is very treatable with lifelong medication and a healthy diet. After her diagnosis, she was put on Prednisone, Pentasa and Prilosec. The Prednisone is to control the inflammation already present; the Pentasa is to control any future flares; the Prilosec works in conjunction with the Prednisone so as not to cause any acid reflux. Since then, she has become dependent on the Prednisone as her symptoms returned when trying to wean her off of it. She developed a telescoping intestine (Intussusception) which became a need for a trip to the hospital. The condition corrected itself and she didn't need a procedure done. THAT was a big relief!
In order to completely wean her off of steroids, we had to think of other forms of medicinal therapy. Her GI doctor recommended starting her on Remicade. My feeling at first was a big fat NO WAY! Why would I want to subject my daughter to this knowing the risks? There are many risks associated with this biological therapy. Some very rare, others more along the lines of side effects. I battled internally with this for days and did ALOT of research and praying. We talked to her GI doctor about our concerns extensively at our recent appointment. He reassured us that all the risks involved were very minimal and feels that out of all our options, this is the best choice. Being on steroids for a long period of time is more harmful than Remicade. He said that we would be amazed at the difference in our daughter after even her first infusion. The benefits outweigh the risks involved. The ultimate goal for my daughter is to make her well, no pain and less dependent on medication. Remicade could very well be the light at the end of the tunnel that I have been looking for the last couple of months.
I just want my little girl to be "my little girl" again!
This is my first blog and as time goes on, I will add more to them. I would appreciate any and all stories, advice and wouldn't mind being the "shoulder" someone else needs. Below are some links to websites that I found useful and informative. Please let me know what you think and if you have any questions. I am more that happy to help! Until next time...Laugh and Love Life!
www.ccfa.org
www.gikids.org
My decision to blog came with much thought and prayer and decided that this is something I should be doing for good reason. My goal is to share my story, get and receive advice and hopefully help others dealing with the same struggles when caring for a loved one with Crohn's Disease.
My story begins back in June, 2014 when my 6 year old daughter was in the hospital for a week and subsequently diagnosed with Crohn's disease. My first thought was "OH! That young?" However, I was a little relieved that it wasn't anything worse but knew the diagnosis was not optimal. My daughter had a battery of tests performed from ultrasounds to colonoscopy/endoscopy. Let me tell you, that I have never seen such a brave and strong 6 year old! Her resilience kept me strong! She did have her moments but was very brave through it all and is to this day. There is such a range of emotion that evolves when you have a sick child, don't know what is going on and feel helpless because you do not know how to help. There were many, many times that I just wanted to curl up and cry like a baby. However, I would never let her see that side of me. To top it all off, a month later, I was laid off of a job I held for over 8 years. What else could go wrong? Although, I would like to think of it as a blessing in disguise.
The doctor's reassured us that it is very treatable with lifelong medication and a healthy diet. After her diagnosis, she was put on Prednisone, Pentasa and Prilosec. The Prednisone is to control the inflammation already present; the Pentasa is to control any future flares; the Prilosec works in conjunction with the Prednisone so as not to cause any acid reflux. Since then, she has become dependent on the Prednisone as her symptoms returned when trying to wean her off of it. She developed a telescoping intestine (Intussusception) which became a need for a trip to the hospital. The condition corrected itself and she didn't need a procedure done. THAT was a big relief!
In order to completely wean her off of steroids, we had to think of other forms of medicinal therapy. Her GI doctor recommended starting her on Remicade. My feeling at first was a big fat NO WAY! Why would I want to subject my daughter to this knowing the risks? There are many risks associated with this biological therapy. Some very rare, others more along the lines of side effects. I battled internally with this for days and did ALOT of research and praying. We talked to her GI doctor about our concerns extensively at our recent appointment. He reassured us that all the risks involved were very minimal and feels that out of all our options, this is the best choice. Being on steroids for a long period of time is more harmful than Remicade. He said that we would be amazed at the difference in our daughter after even her first infusion. The benefits outweigh the risks involved. The ultimate goal for my daughter is to make her well, no pain and less dependent on medication. Remicade could very well be the light at the end of the tunnel that I have been looking for the last couple of months.
I just want my little girl to be "my little girl" again!
This is my first blog and as time goes on, I will add more to them. I would appreciate any and all stories, advice and wouldn't mind being the "shoulder" someone else needs. Below are some links to websites that I found useful and informative. Please let me know what you think and if you have any questions. I am more that happy to help! Until next time...Laugh and Love Life!
www.ccfa.org
www.gikids.org
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