My daughter who was 9 last May started to bleed, I researched it and all I could come up with was possibly salmonella poising. She has two turtles and a tortoise. Symptoms were all there. I flushed her system and did as recommended about one week later my daughter told me all was good and fine, no more problems. So I never checked or followed up.
In July she started getting these red bumps on her legs, they almost looked like bug bites but not quite. Took her to the dr. gave her allergy meds, steroids etc. nothing worked. I found a better pediatrician who ran extensive blood work and during that visit my daughter disclosed she has watery bowel movements and she would bleed. I was shocked she didn't share this with me sooner. It never stopped. So from May to July she was bleeding the whole time. Now the guilt of not knowing or doing something sooner came over me. The dr. told me at least three days for the results, to my shock she called the next morning at 7 am asking me to bring my daughter in ASAP. I got to the office and they took me right back which that would not usually happen when you have a room full of patients there before you. She told us that she thinks my daughter has IBD and she needed to go to the hospital immediately they were waiting on her and the hematologist would be waiting on us. She had been immediately admitted and remained there for a week. There she had tons of tests run, blood work, pic lines and a blood transfusion because her cell count was so low. Lost over 10 lbs. On a 9 year old that is a whole lot of skinny.
After being discharge she was on ASACOL 4 a day, Iron 3 a day, Prednisone 20mg, and omprezole. The prednisone had horrible side effects and she had to be weaned off faster than they would of liked. It took several months to get her regulated with the meds then she bottomed out and was diagnosed with Crohn's. The next course of action was the remicade, 4 asacol, 3 iron, a day. When they saw the remicade working they weaned her off of the asacol. As of now she does the remicade infusion every six weeks and the iron daily.
Over the summer she did great, no flare ups no problems. About a month ago a couple of days after her remicade she started to get minor nose bleeds. Then she had a pretty severe one while visiting her dad. She just had her remicade infusion on Monday the day before school started. Since she had the infusion she has had three severe nosebleeds. Gross long clots coming out. The only way to describe it would be as if i pulled two earthworms connected out of her nostril. The length and width were unlike anything I had seen. She also started to flare up. I'm thinking new school year and she is stressed. At 2:30pm today i get a call from the nurse and my daughter is in there again with a nosebleed, she described it as normal. I was walking towards the school when she called by the time I got to my daughter these long bloody clots were coming out of her nose, then she said oh god its going down my throat and she starting gagging and coughing up the blood coming from her nose.
I immediately called her GI doctor and she said that this is not a side effect from the remicade. Im at a loss because some remicade sites say it is.
She has also developed a weird head jerk twitch thing. At first I thought she was tossing her head to move her hair from her face, but as i watch her it is definitely a twitch of some sort. I am still new to all this so if anyone can shed some light on the nosebleeds and twitching i would really appreciate it.
In July she started getting these red bumps on her legs, they almost looked like bug bites but not quite. Took her to the dr. gave her allergy meds, steroids etc. nothing worked. I found a better pediatrician who ran extensive blood work and during that visit my daughter disclosed she has watery bowel movements and she would bleed. I was shocked she didn't share this with me sooner. It never stopped. So from May to July she was bleeding the whole time. Now the guilt of not knowing or doing something sooner came over me. The dr. told me at least three days for the results, to my shock she called the next morning at 7 am asking me to bring my daughter in ASAP. I got to the office and they took me right back which that would not usually happen when you have a room full of patients there before you. She told us that she thinks my daughter has IBD and she needed to go to the hospital immediately they were waiting on her and the hematologist would be waiting on us. She had been immediately admitted and remained there for a week. There she had tons of tests run, blood work, pic lines and a blood transfusion because her cell count was so low. Lost over 10 lbs. On a 9 year old that is a whole lot of skinny.
After being discharge she was on ASACOL 4 a day, Iron 3 a day, Prednisone 20mg, and omprezole. The prednisone had horrible side effects and she had to be weaned off faster than they would of liked. It took several months to get her regulated with the meds then she bottomed out and was diagnosed with Crohn's. The next course of action was the remicade, 4 asacol, 3 iron, a day. When they saw the remicade working they weaned her off of the asacol. As of now she does the remicade infusion every six weeks and the iron daily.
Over the summer she did great, no flare ups no problems. About a month ago a couple of days after her remicade she started to get minor nose bleeds. Then she had a pretty severe one while visiting her dad. She just had her remicade infusion on Monday the day before school started. Since she had the infusion she has had three severe nosebleeds. Gross long clots coming out. The only way to describe it would be as if i pulled two earthworms connected out of her nostril. The length and width were unlike anything I had seen. She also started to flare up. I'm thinking new school year and she is stressed. At 2:30pm today i get a call from the nurse and my daughter is in there again with a nosebleed, she described it as normal. I was walking towards the school when she called by the time I got to my daughter these long bloody clots were coming out of her nose, then she said oh god its going down my throat and she starting gagging and coughing up the blood coming from her nose.
I immediately called her GI doctor and she said that this is not a side effect from the remicade. Im at a loss because some remicade sites say it is.
She has also developed a weird head jerk twitch thing. At first I thought she was tossing her head to move her hair from her face, but as i watch her it is definitely a twitch of some sort. I am still new to all this so if anyone can shed some light on the nosebleeds and twitching i would really appreciate it.