Hi all,
My son was just diagnosised with crohns disease last month, February 2016, he was 6, but just had his 7th birthday!
We have a great team at Seattle Childrens, I am so grateful for them!
Jackson is on a formula based diet, drinking 6 or more pedisure a day, and only eating a max of 350 calories a day from food on a scd meal plan, plus everything organic, meat has to be grass fed organic.
The second week on this diet I could definitely tell a difference, but then he got a stiff neck and everything went downhill. He's back to being super pale, pain in his stomach, legs, so irratable, doesn't want to stick to the diet, and no energy.
Hes taking pentasa, but I have a feeling he needs something more. I want him to feel better so badly, I wish I knew what to do, I wish I could take this disease on myself, instead of him.
We just started on this crazy road, and I'm stressed, and trying not to let him see this at the same time.
We go to an appointment this next Thursday and I have my list of items to bring up. This is day 9 of a stiff neck, we've already spent a day at children's tying to figure out that's about, and we still have no idea.
How do mom's deal with this, being a mom is hard enough then add a chronic disease to your child, I'm still trying to wrap mind around this. I feel like I need to home school, quit my job, focus everything on getting my son heathly.
Trying my best to stay postitve, but having my son tell me today that he just can't handle this anymore, talking about the pain, has me in tears and feeling helpless.
I made an appointment to talk to a great chulildrens couselor, I just hope and pray that he will start to feel better soon.
My son was just diagnosised with crohns disease last month, February 2016, he was 6, but just had his 7th birthday!
We have a great team at Seattle Childrens, I am so grateful for them!
Jackson is on a formula based diet, drinking 6 or more pedisure a day, and only eating a max of 350 calories a day from food on a scd meal plan, plus everything organic, meat has to be grass fed organic.
The second week on this diet I could definitely tell a difference, but then he got a stiff neck and everything went downhill. He's back to being super pale, pain in his stomach, legs, so irratable, doesn't want to stick to the diet, and no energy.
Hes taking pentasa, but I have a feeling he needs something more. I want him to feel better so badly, I wish I knew what to do, I wish I could take this disease on myself, instead of him.
We just started on this crazy road, and I'm stressed, and trying not to let him see this at the same time.
We go to an appointment this next Thursday and I have my list of items to bring up. This is day 9 of a stiff neck, we've already spent a day at children's tying to figure out that's about, and we still have no idea.
How do mom's deal with this, being a mom is hard enough then add a chronic disease to your child, I'm still trying to wrap mind around this. I feel like I need to home school, quit my job, focus everything on getting my son heathly.
Trying my best to stay postitve, but having my son tell me today that he just can't handle this anymore, talking about the pain, has me in tears and feeling helpless.
I made an appointment to talk to a great chulildrens couselor, I just hope and pray that he will start to feel better soon.