my 9 year old Undiagnosed
Hi everyone, wanted to thank everyone for sharing all your experiences. I must admit some of them scare the hell out of me, I really hope the Endoscopic and Colonoscopy finds nothing well, something because my sweet girl has been sick for awhile now. I want to know what so we can help her be normal as possible.
Her name is Savannah snd she feels bad everyday. Savannah has battled constipation since she was 6 and we just figured until December 2010 that it was caused by her poor apetite and what little she did eat. So, her pedi has had her on Myralax as needed for 3 years. This past December she got were she couldn't move her bowels even with the Myralax daily X2. When she was successful it was just little thin pieces that she would pass some days spending hours in the bathroom. By the end of December she was not eating hardly anything, she wanted to and tried but she would take a bite and it would make her sick. So this brought us to our local ER, they took xrays said she was pretty full but no obstruction. They gave her a suppository and it did nothing but add to her discomfort and make her feel like she needs to move her bowels but still couldn't. By this time anyways she always had the pressure of needing to go. Well, nothing happened so he wrote another script for Myralax and a suppostitory and told me to give it to her daily for 3 days. We did nothing happended. So, two weeks later we are still in the same boat, my child is sick waking up in the middle of the night in pain, missing school, not eating, and her bottom hurts. So, we take her to Texas Children's in Houston. We get there she has a fever of 101. They try an enima it also does nothing but make her uncomfortable. They end up admitting her and giving her Golytely thru a NG tube, after a couple of hours she starts moving stuff! YAY!!!! I am thinking we are about past this we can all get back to our normal lives. It took her till mid Februaury to start eating again but for the most part all is good.....Until the end of May, and her symptoms start returnig slowly. Now her pedi says I think she has Crohn's but don't worry my daughter has it and she is 50. Like that he trys to comfort me imediately.
Now we have a Pedi GI at Texas Children's. We went for Savannah's first appointment 2 weeks ago. The doctor stayed with us for an hour asking questions and going over medical history and of course examing Savannah. He orders a Sitzmarks test and a series of 4 xrays to check motility and stool samples. I have to admit I am a little disappointed by this because I want a colonoscopy!!!!! He said well, we aren't there yet, and there are risk involved, with the procedure and sedation. Savannah is severly malnourised and at this time its just not worth the risk. We need to work on her weight and get her healtier first. Ok.... I don't want to put my daughter at risk we will wait.
We do the series of xrays and the stool samples.. the Dr calls us back this past Friday and the motility test come back ok but the stool samples have microscopic blood, looks like we need to get her in here and get a endoscopic (upper gi tract, I believe is what he called it) and a colonoscopy. Her blood work was normal but he said some people with Crohns don't show up in blood. That flip from its not safe to we need to scares me plus he said Crohn's also.
Back in January the first really bad episode her blood work was normal except for a high absolute lymphocyte count.
Besides the symptoms mentioned above her typical body temperature is 96 before all this started she was 98.6, she stays cold her hands and feet are freezing.
Weakness
slime on her poo
mouth ulcers
leg and hip pain (always thought this was growing pains)
the stomach pain is most often just below her navel
low grade fevers
her weight has been between 50-55lbs for the last year
night sweats
Savannah knows there is something not right with her, she will ask me why I can't be normal or why can't I be like you? (not sick) why am I always so tired?
We have a pool and she loves to swim but doesn't even ask anymore cuz she feels so bad all the time.
When we go growing shopping I always take her so she can pick out her own foods hoping she will find something she can eat. With constipation being an issue most of the time she looks for fiber rich foods... cereal, granola bars
I just am hoping time will start moving again and we can get to the 25th the day endo and colonoscopy. How do you past the time between tests and results?
Ps. I hope this posts its the second one a wrote but the first time my computer or internet glitched and I lost it...
Best wishes to all
Hi everyone, wanted to thank everyone for sharing all your experiences. I must admit some of them scare the hell out of me, I really hope the Endoscopic and Colonoscopy finds nothing well, something because my sweet girl has been sick for awhile now. I want to know what so we can help her be normal as possible.
Her name is Savannah snd she feels bad everyday. Savannah has battled constipation since she was 6 and we just figured until December 2010 that it was caused by her poor apetite and what little she did eat. So, her pedi has had her on Myralax as needed for 3 years. This past December she got were she couldn't move her bowels even with the Myralax daily X2. When she was successful it was just little thin pieces that she would pass some days spending hours in the bathroom. By the end of December she was not eating hardly anything, she wanted to and tried but she would take a bite and it would make her sick. So this brought us to our local ER, they took xrays said she was pretty full but no obstruction. They gave her a suppository and it did nothing but add to her discomfort and make her feel like she needs to move her bowels but still couldn't. By this time anyways she always had the pressure of needing to go. Well, nothing happened so he wrote another script for Myralax and a suppostitory and told me to give it to her daily for 3 days. We did nothing happended. So, two weeks later we are still in the same boat, my child is sick waking up in the middle of the night in pain, missing school, not eating, and her bottom hurts. So, we take her to Texas Children's in Houston. We get there she has a fever of 101. They try an enima it also does nothing but make her uncomfortable. They end up admitting her and giving her Golytely thru a NG tube, after a couple of hours she starts moving stuff! YAY!!!! I am thinking we are about past this we can all get back to our normal lives. It took her till mid Februaury to start eating again but for the most part all is good.....Until the end of May, and her symptoms start returnig slowly. Now her pedi says I think she has Crohn's but don't worry my daughter has it and she is 50. Like that he trys to comfort me imediately.
Now we have a Pedi GI at Texas Children's. We went for Savannah's first appointment 2 weeks ago. The doctor stayed with us for an hour asking questions and going over medical history and of course examing Savannah. He orders a Sitzmarks test and a series of 4 xrays to check motility and stool samples. I have to admit I am a little disappointed by this because I want a colonoscopy!!!!! He said well, we aren't there yet, and there are risk involved, with the procedure and sedation. Savannah is severly malnourised and at this time its just not worth the risk. We need to work on her weight and get her healtier first. Ok.... I don't want to put my daughter at risk we will wait.
We do the series of xrays and the stool samples.. the Dr calls us back this past Friday and the motility test come back ok but the stool samples have microscopic blood, looks like we need to get her in here and get a endoscopic (upper gi tract, I believe is what he called it) and a colonoscopy. Her blood work was normal but he said some people with Crohns don't show up in blood. That flip from its not safe to we need to scares me plus he said Crohn's also.
Back in January the first really bad episode her blood work was normal except for a high absolute lymphocyte count.
Besides the symptoms mentioned above her typical body temperature is 96 before all this started she was 98.6, she stays cold her hands and feet are freezing.
Weakness
slime on her poo
mouth ulcers
leg and hip pain (always thought this was growing pains)
the stomach pain is most often just below her navel
low grade fevers
her weight has been between 50-55lbs for the last year
night sweats
Savannah knows there is something not right with her, she will ask me why I can't be normal or why can't I be like you? (not sick) why am I always so tired?
We have a pool and she loves to swim but doesn't even ask anymore cuz she feels so bad all the time.
When we go growing shopping I always take her so she can pick out her own foods hoping she will find something she can eat. With constipation being an issue most of the time she looks for fiber rich foods... cereal, granola bars
I just am hoping time will start moving again and we can get to the 25th the day endo and colonoscopy. How do you past the time between tests and results?
Ps. I hope this posts its the second one a wrote but the first time my computer or internet glitched and I lost it...
Best wishes to all