Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 I want to let everyone know that Mathieu has been diagnosed with Crohn's. If I can answer any questions from anyone please don't hesitate. Due to his very rare age of only 17 months it is going to be a more challenging road for him, as it has been since he was born. Even though we are extremely devastated; we have hope that he will overcome and learn to live this with recent diagnosis. They will do an Upper Endoscopy and a Colonoscopy. They are also going to do a MRI of the Pituitary just to make sue it is in the right place, size and connections are all good. He will be admitted as a 23 hr stay to clean his GI tract with an NG tube. I hate to do that, but the other option was to do a clear liquid diet for 48 hours. I have 1 older boy and besides Mathieu loves to eat. I could not take food away from that child. The procedures will be on the 11th of June at 1:15 PM (if the procedures before that go on time) He has been growing a very little bit, but he has low Somatomedin levels (Growth hormone factor) and even though most likely it is from the Crohn's they want to make sure we don't have more than problem, since there are already other issues with his eyes. The eyes also can be from the Crohn's since he isn't able to absorb the nutrition. He may also have joint pain which would explain why he is always screaming ALOT. The good news is I am familiar with the tests and procedures and what to expect from the surgical side. I used to be an MA in admitting and recovery at Children's Hospital in Norfolk, VA. It terrifies me because I know the worst and the best of situations. When it is your baby things change. You look at things in a whole new light. I don't follow the patients home from the hospital so I REALLY don't know how difficult it was for the families until now. It is odd that the shoe is on the other foot. I have to watch my son being treated instead of holding another parents hand while they wait pacing the floors. I have to ask for a drink of water or juice for my baby instead of getting it for there baby, and I have to listen to instruction of what medication to give and why we are treating our son instead of telling the parents. I was there for a reason just as I am here now, and our son Mathieu has become perhaps one of the strongest children like all of yours. He wants so much to be a happy normal baby even when he gets sick and is in pain. I am most likely going to leave Shadow Syndromes but I am not planning on leaving the RSS group. It may still be helpful in case we do need to give Mathieu Growth Hormone due to his lack of growth and if nutrition fails to catch him up. I have signed up with a Crohn's group, and hopefully I will meet at least a few other parents with similiar situations. Thanks to everyone for advice and support!!!! Jay Mathieu 17 Months 18 pounds 28 inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Hi, Wow, another obstacle. It is not fair what some kids/people have to endure. You seem to have such a great attitude. I do know several adults with Crohn's but nokids.... Mathieu has Crohn's I want to let everyone know that Mathieu has been diagnosed with Crohn's. If I can answer any questions from anyone please don't hesitate. Due to his very rare age of only 17 months it is going to be a more challenging road for him, as it has been since he was born. Even though we are extremely devastated; we have hope that he will overcome and learn to live this with recent diagnosis. They will do an Upper Endoscopy and a Colonoscopy. They are also going to do a MRI of the Pituitary just to make sue it is in the right place, size and connections are all good. He will be admitted as a 23 hr stay to clean his GI tract with an NG tube. I hate to do that, but the other option was to do a clear liquid diet for 48 hours. I have 1 older boy and besides Mathieu loves to eat. I could not take food away from that child. The procedures will be on the 11th of June at 1:15 PM (if the procedures before that go on time) He has been growing a very little bit, but he has low Somatomedin levels (Growth hormone factor) and even though most likely it is from the Crohn's they want to make sure we don't have more than problem, since there are already other issues with his eyes. The eyes also can be from the Crohn's since he isn't able to absorb the nutrition. He may also have joint pain which would explain why he is always screaming ALOT. The good news is I am familiar with the tests and procedures and what to expect from the surgical side. I used to be an MA in admitting and recovery at Children's Hospital in Norfolk, VA. It terrifies me because I know the worst and the best of situations. When it is your baby things change. You look at things in a whole new light. I don't follow the patients home from the hospital so I REALLY don't know how difficult it was for the families until now. It is odd that the shoe is on the other foot. I have to watch my son being treated instead of holding another parents hand while they wait pacing the floors. I have to ask for a drink of water or juice for my baby instead of getting it for there baby, and I have to listen to instruction of what medication to give and why we are treating our son instead of telling the parents. I was there for a reason just as I am here now, and our son Mathieu has become perhaps one of the strongest children like all of yours. He wants so much to be a happy normal baby even when he gets sick and is in pain. I am most likely going to leave Shadow Syndromes but I am not planning on leaving the RSS group. It may still be helpful in case we do need to give Mathieu Growth Hormone due to his lack of growth and if nutrition fails to catch him up. I have signed up with a Crohn's group, and hopefully I will meet at least a few other parents with similiar situations. Thanks to everyone for advice and support!!!! Jay Mathieu 17 Months 18 pounds 28 inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Jay, I am so sorry to hear that Mathiew has Chron's. I know several people with this disease and I am aware of what it brings. In fact, Max shared a room in the hospital with a 13 year old who has it and they became friends. I hope that the testing goes well and that they do not find any further complications from this. I also hope that you have the strength to get through this until you are well-educated and can see the light at the end of the very long tunnel. I'm glad that you are going to stay with us. You have been an important part of our group. Please keep us all posted on what happens with the testing and where you go from here. And know that we are all pulling for you. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Thanks Jodi very much...I really don'tr feel like I have offered much, but I have learned laot from others here!!!! Jay, I am so sorry to hear that Mathiew has Chron's. I know several people with this disease and I am aware of what it brings. In fact, Max shared a room in the hospital with a 13 year old who has it and they became friends. I hope that the testing goes well and that they do not find any further complications from this. I also hope that you have the strength to get through this until you are well-educated and can see the light at the end of the very long tunnel. I'm glad that you are going to stay with us. You have been an important part of our group. Please keep us all posted on what happens with the testing and where you go from here. And know that we are all pulling for you. Jodi Quote Link to comment Share on other sites More sharing options...
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