I forgot to mention this information. He suffers from extreme constipation and diarrhea, constantly. We started him on gummy fibers, that seemed to help a little. His stomach is very sensitive, its been a common thing to go rushing out of a restaurant to make it home so he can go to the bathroom. This kid hates using public restrooms! He spent most of his time at home when in school because of this.
So, since taking Humira, his stomach is not as bad. He seems to be going to the bathroom and the bouts of constipation are less, and his diarrhea as well.
He has been on the Humira since around November of 2014, so we shall see how things go. I will let you know if this really fixes the problem or we have to start all over again.
I really think this disease is allergy based, his skin and scalp also are affected, along with swelling of his eye lids which we think is from ankylosing spondylitis. In a perfect world Nick would eat gluten free, and drop a lot of foods from his diet, but being a 21 year old guy makes this really a challenge. Maybe, just maybe one day I can convince him! Good Lord he is still so tall and skinny!
Wednesday, April 29, 2015
Tuesday, April 28, 2015
Humira seems to be working but...
So his symptoms are better on Humira, he sees a difference in between shots, he always knows when its time. His symptoms re-appear close to the day.
The true test will be if he has an upper endoscopy and it comes out negative of eosinophils. The hard part is trying to get him to do the test now that he is 21.
I can't deny that this stresses me out. I worry so much it almost makes me sick. When will they have a treatment for this awful disease?
The true test will be if he has an upper endoscopy and it comes out negative of eosinophils. The hard part is trying to get him to do the test now that he is 21.
I can't deny that this stresses me out. I worry so much it almost makes me sick. When will they have a treatment for this awful disease?
Sunday, November 23, 2014
Humira was started
Its going to take time to see results, but Nick had his 2nd shot of Humira this past Tuesday. When he's been on it for a while, he will need another upper endoscopy to see if the EE has calmed down at all.
I may be repeating myself, but we've noticed some food reactions. I made stuffed pasta shells with ricotta cheese, etc. He said he ate a shell and his throat swelled up, he felt it happening. I stopped buying regular milk, now its only Organic, but we may switch to another option like the almond beverage.
Certain foods make his throat swell, which is interesting. He's still very skinny, He's about 6 feet tall and 126 pounds. Sometimes I can't focus on this, its all too overwhelming. Its been a long road, since he was a baby. The doctors said I was basically, nuts. I knew when his baby teeth erupted, and looked like little pieces of chalk there was a serious problem. Then came the endless days and nights of agony with stomach pain & not being able to eat. Once he was given some medicine he was able to start eating again, and I am thankful I decided to defy the doctors somewhat and give him whatever he wanted to eat. My husband was so mad at me, he'd be eating candy bars, like a Snickers bar, or pizza, anything he wanted, at any time. I mean the kid was literally starving to death, and was SO SMALL! So tiny, and weighed so little it did not seem even possible...he was a big baby, 9 pound wonder!
We still struggle with him eating, he doesn't like to. He has issues with going to the bathroom. Its a wild life, sometimes he does not like to leave the house in fear he will have to go. I can't deny its not been fun and it really stresses me out. I'm literally, the food pusher! If he's gotta go to an appointment, he won't eat. He refuses to use a public bathroom. He was like this while in school too, so the kid spent most of his life at home during those years. Amazingly he did graduate, but that was not without a lot of work! There have been times we go somewhere and have to leave, rush home, for him to use the bathroom. I was told this is part of the EE. It stinks! Its happened when we go out to eat, and have to quickly leave. It is amazing how much we have adjured to, and how his life has changed because of this. But, he's an amazing kid, now 21 and has a great personality. I often wonder what his life would be like if I did not allow him to eat anything he wanted, and if he did not grow. As you can see he's much taller than his brother who is 5 years his senior. I sure hope they get a treatment together soon, I know Amgen is working on one, and I'm guessing its going to take a long time before we see it at the pharmacy?
I may be repeating myself, but we've noticed some food reactions. I made stuffed pasta shells with ricotta cheese, etc. He said he ate a shell and his throat swelled up, he felt it happening. I stopped buying regular milk, now its only Organic, but we may switch to another option like the almond beverage.
Certain foods make his throat swell, which is interesting. He's still very skinny, He's about 6 feet tall and 126 pounds. Sometimes I can't focus on this, its all too overwhelming. Its been a long road, since he was a baby. The doctors said I was basically, nuts. I knew when his baby teeth erupted, and looked like little pieces of chalk there was a serious problem. Then came the endless days and nights of agony with stomach pain & not being able to eat. Once he was given some medicine he was able to start eating again, and I am thankful I decided to defy the doctors somewhat and give him whatever he wanted to eat. My husband was so mad at me, he'd be eating candy bars, like a Snickers bar, or pizza, anything he wanted, at any time. I mean the kid was literally starving to death, and was SO SMALL! So tiny, and weighed so little it did not seem even possible...he was a big baby, 9 pound wonder!
We still struggle with him eating, he doesn't like to. He has issues with going to the bathroom. Its a wild life, sometimes he does not like to leave the house in fear he will have to go. I can't deny its not been fun and it really stresses me out. I'm literally, the food pusher! If he's gotta go to an appointment, he won't eat. He refuses to use a public bathroom. He was like this while in school too, so the kid spent most of his life at home during those years. Amazingly he did graduate, but that was not without a lot of work! There have been times we go somewhere and have to leave, rush home, for him to use the bathroom. I was told this is part of the EE. It stinks! Its happened when we go out to eat, and have to quickly leave. It is amazing how much we have adjured to, and how his life has changed because of this. But, he's an amazing kid, now 21 and has a great personality. I often wonder what his life would be like if I did not allow him to eat anything he wanted, and if he did not grow. As you can see he's much taller than his brother who is 5 years his senior. I sure hope they get a treatment together soon, I know Amgen is working on one, and I'm guessing its going to take a long time before we see it at the pharmacy?
he's on the right with the dark glasses.
Wednesday, May 28, 2014
Humira is coming soon...
Nick will be trying Humira soon, we have the prescription, and it should be interesting to see if the EE gets better with this drug.
I know the ankylosing spondylitis may get better, but the doctor at Cedars Sinai had mentioned that Humira sometimes helps the EE. And the rheumatologist at Childrens Hospital Los Angeles thought the two diseases went together.
I have to get Nick some pre-medication scans to chart his progression on the drug, and then I have to sign him up for co-pay assistance, and then we shall see what happens. His AS has been out of control, he's had a lot of flares, and his skin has been involved.
I know he's 20, soon to be 21, but he's still so young, and having to cope with these types of diseases even at my age is horrific, you need help and guidance. Life is not easy when you dont feel good, another reason this child needs my help. It makes me mad when we go to a facility and they make a big fuss about him being an adult and read me the law. Give me a break, I know the law, I know he's an adult, but this process of going on meds, and managing the shots, etc, is not easy. Even for an adult. And Nick is alone, without us. He doesnt have a girlfriend who can help him through this. These people at the doctors, hospitals, etc, make it seem like I'm enabling him. Another give me a break, I'd like to see them tell their 19 or 20 year old son to figure it out himself, be alone and order your own medications, and manage all these documents, and papers, etc. Make a choice about which drug your going to inject into your leg...alone! I can guarantee, these healthcare workers would be just like me!
Time will tell what happens next, I will report the findings, which will require yet another upper endoscopy with biopsies. This will take a lot of time, and I'm guessing until end of the year to have another update!
I know the ankylosing spondylitis may get better, but the doctor at Cedars Sinai had mentioned that Humira sometimes helps the EE. And the rheumatologist at Childrens Hospital Los Angeles thought the two diseases went together.
I have to get Nick some pre-medication scans to chart his progression on the drug, and then I have to sign him up for co-pay assistance, and then we shall see what happens. His AS has been out of control, he's had a lot of flares, and his skin has been involved.
I know he's 20, soon to be 21, but he's still so young, and having to cope with these types of diseases even at my age is horrific, you need help and guidance. Life is not easy when you dont feel good, another reason this child needs my help. It makes me mad when we go to a facility and they make a big fuss about him being an adult and read me the law. Give me a break, I know the law, I know he's an adult, but this process of going on meds, and managing the shots, etc, is not easy. Even for an adult. And Nick is alone, without us. He doesnt have a girlfriend who can help him through this. These people at the doctors, hospitals, etc, make it seem like I'm enabling him. Another give me a break, I'd like to see them tell their 19 or 20 year old son to figure it out himself, be alone and order your own medications, and manage all these documents, and papers, etc. Make a choice about which drug your going to inject into your leg...alone! I can guarantee, these healthcare workers would be just like me!
Time will tell what happens next, I will report the findings, which will require yet another upper endoscopy with biopsies. This will take a lot of time, and I'm guessing until end of the year to have another update!
Monday, March 17, 2014
Ironic meeting
Nick still has EE. We are still battling high's and lows of swallowing issues, and the diarrhea and constipation that go in cycles. He's dealing with a shattered calcaneus right now, had one surgery, and is having another next month to remove the metal plate and 8 screws put into his foot to keep it together. Once this is complete we can focus again on the EE.
Interesting thing happened, I was helping out someone, long story. But the woman I was speaking with turned out to be a rheumatologist, working for Amgen. And ironically enough is working on creating a treatment for EE. So there is hope, coming soon!
Interesting thing happened, I was helping out someone, long story. But the woman I was speaking with turned out to be a rheumatologist, working for Amgen. And ironically enough is working on creating a treatment for EE. So there is hope, coming soon!
Friday, October 25, 2013
Still the same
Well Nicks last upper endoscopy and the camera endoscopy both showed the same results. Nick still has EE, and it has not gotten better.
Its a mystery, really. I guess we are lucky he did get so tall and is able to somehow keep going. His diarrhea and constipation and the stomach issues have not disappeared but I think he just keeps living and ignoring or possibly is used to this now.
They wanted to make sure he did not have Crohns disease, which was ruled out thank god. But there still are changes in his guts that I dont understand. I guess its par for the course with EE.
I have been looking into clinical trials, to see if I can get him involved, but I'm thinking he may put up a fight now that he's 20 he doesnt want to be thinking about this stuff.
Its a mystery, really. I guess we are lucky he did get so tall and is able to somehow keep going. His diarrhea and constipation and the stomach issues have not disappeared but I think he just keeps living and ignoring or possibly is used to this now.
They wanted to make sure he did not have Crohns disease, which was ruled out thank god. But there still are changes in his guts that I dont understand. I guess its par for the course with EE.
I have been looking into clinical trials, to see if I can get him involved, but I'm thinking he may put up a fight now that he's 20 he doesnt want to be thinking about this stuff.
Saturday, January 26, 2013
MILK is one of the culprits!
Nick is now 19, and is slowly noticing what is bothering his esophagus! He's decided that milk makes his esophagus swell!
Funny he didn't test positive when having allergy skin testing at Children's Hospital!
I hope he notices more as time goes on, needless to say he's cutting out all dairy!
He spent the last 24 hours with a stomach virus that really wiped him out . He is so skinny!
Funny he didn't test positive when having allergy skin testing at Children's Hospital!
I hope he notices more as time goes on, needless to say he's cutting out all dairy!
He spent the last 24 hours with a stomach virus that really wiped him out . He is so skinny!
Subscribe to:
Comments (Atom)