I am new to the board so I hope I am doing this right. I know this is going to get really long so please bear with me.
My son has been having issues with his stomach forever. He actually had his first test on his tummy when he was 8 weeks old and we found out he had reflux. He has been through a couple colonoscopys, egds and ph probes. Not to mention ct scans and mri's & etc..
My son wants to act like nothing is wrong all the time but he has been in out and out of hospitals for years. He has been on medicine almost everyday of his life. He has a kidney disease called hypercalcuira, and also benign rolandic epilepsy. He gets allergy injections once a week and has severe nose bleeds. So having stomach issues adds to it s but he alwasy just goes with the flow.
I have tried for years now to get something done about his tummy. I knew there was something not right but GI doctor always blew me off.. Now we have changed GI doctors after this last hospital stay.
I had to take my son to the ER on Valentines day because he was in so much pain. (He has a very high pain tolerace 4 years ago he rode his bike home from down the street with a broken ankle.) They did lab and urine cultures and said he had they thought a UTI because of blood in the urine. Uh no he doesnt. He always has blood in his urine. We were sent home. Ko started running a high fever during the night and by morning was throwing up and crying because he was in such pain. I called GI doctor and was told ER said it was UTI so now it was a Kidney issue I would have to call kidney doctor. I said I am looking at release papers from hospital and it says call GI in the morning. And this is what I am doing. Well we ended back up in the ER. Doctor that time said she thought it was GI issue. She ordered ultra sound of gall bladder and kidney. Ct scan with dye and contrast of kidney and gall bladder. Kidney looked good. But he had redness or something around appendix area. He was admitted into the hospital and did colonoscopy just a few hours later. Had to try and clean him out the best we could. Colonoscoy showed red streaks and abnormality where large and small intestines met and it was covered with puss. So byopsies were taken. Later that day they did an MRE with contrast which showed inflamation in a couple of different places.
After a few days in the hospital they were afraid he was also having seizures again. So he was sent to have MRI of brain and EEG of brain. A few minutes later they were rushing him back down to have MRI of brain with contrast to check his brain tissue. Yes I was scared to death. They thought he had a brain tumor on the right size but after this MRI said it was just a malformation on the right side that could have happened if he bumped his head when he was younger. All this time his heartrate never came out of the low 50s. So an EKG was ordered and came back fine.
Ko was asked how he was feeling when he was in the hospital. He said I feel okay other than my stomach. HE was told well honey your stomach is why you are here. He said I know but my stomach has hurt all my life. I dont ever remember not having stomach pain. That just about broke my heart.
He stayed 8 days in the hospital. The last 5 he was gettin IV steroids and Pentasa. .
Okay thats a little bit of what was going on the first couple of weeks ago.
So starting last Wednesday night his heart rate started going high. By Thursday morning I was calling GI and Neuro. I was advised to take him off of Elavil. They thought that was making his heart race. So stopped that and Neuro called me that afternoon and heart rate was 130. I waas told to take him to the Er. When we got there heart rate was 135. He said he felt like he had been running.They did EKG and chest xray and said everything was okay. Sent us home. Friday heart rate was still high. He finally thought he felt like going to the store. So we went to get finally things for his birthday party the next day. We were in store for about 10 minutes and he said his feet hurt really bad. SO I said we would go home. BY the time we got to check out his feet felt numb. So as soon as we got home I had him take socks and boots off. His feet where swollen and he said he couldnt feel them. I rubbed heard even tried to tickle his feet with him not even movign them. He said he couldnt feel it. Called doctor back and they said if it didnt get better to take him to er. Ko was so afraid of being in hospital and missing his party. And I was afraid of taking him back to er and catching something from another child there. SO we decided to watch him. The swelling went down. Heart rate stayed high all weekend.
Today
We got to GI office and doctor came in and asked how Ko was feeling. Ko let him know he feels the same stomach wise. But now he feels tired and achy. He let him know that he was having alot of trouble sleeping. I let the doctor know about the concern of the heart rate, swelling and numbing of the feet. He acted like he didnt know anything about Kota being at the hospital Thursday with the high heart rate and the swelling of the feet. Acted like it wasnt a big deal.
Then I told him he says his knees and shoulders ache all the time. He said he had no idea why that was happening. I said he had been in alot of pain but doesnt see the point in taking tylenol when it doesnt do anything. He said well he can take Motrin. I let him know UH no he cant.. He said it wouldn't be effected by his crohn's. Okay well we were told years ago he cant take it becasue of his nose bleeds. He said well one dose want effect that Uh yes it will because the first night I called GI clinic and you were on call before Ko went into the hospital you advised me it was okay for him to take Motrin and guess what we woke up the next morning to nose bleeds. He said well if his pain is so bad that tylenol is not helping then he needs to be in the hospital. Well thats great now Kota will not tell me that he is hurting out of fear of having to go back to the hospital.
He then said we needed to treat Ko like a regular 12 year old boy. Okay we pretty much already do. He has chores, he does homework and etc. I told him he stays so tired but cant sleep. Its been 4 in the morning the last few nights/mornings before he goes to sleep. He will lay there for hours and not be able to sleep. Well I have always been the type of mommy thats not asleep til my kids are sleeping. So I know when he is sleeping. He said well when he was a 12 year old boy his momma would have smacked him if he wasnt asleep at 4 in the morning. (Well your momma is not Kotas momma). He said there is no reason why he isnt sleeping. He asked what time he wakes up in the mornings. I said he gets up at 8:30 takes medicine and eats breakfast and then goes back to sleep until about 9:30-10. He is homeschooled so I have been working his days around him and how he feels. We have been having to do class work when he is laying around but he hasnt felt like doing alot at a time. He said he shouldn't be sleeping during the day or really having to rest. If he didnt rest or sleep during the day he would be tired at night. Which I call bullcrap on that. I know Ko and know his not sleeping at night has nothing to do with the day time. He is so tired. HE said he had no idea what to do to help him sleep. Because he has never had troube sleeping. He said we could try melatinin (sp) we have tried that in the past but caused head aches.
Then he said just like any other 12 year old we have to watch his weight and not let him get over weight. He has gained 5 pounds in 3 weeks. I said yes I understand that can you give me any ideas what he can snack on because he says he is always hungry but your office said he could not have any fruits or veggies. He once again said he really didnt have any ideas on snacks. We just had to watch his weight and he didnt need to be gaining weight or snaking. Okay great now Ko is going to be worrying more about his weight. He already gets so upset because he says he is always hungry. Doc said he needed to get more active. Outside playing, walking running or bike riding. All things Ko loves to do and use to do but says now he doesnt feel like it. Plus I worry him running or being really active with a heart rate thats staying at 115 and up. If he feels like he is running when he is really just sitting still.
We are taking 17 year old son to see this GI doctor on the 2nd on April because he has always had trouble with his stomach and had blood in in stool.
So I got a little discouraged at the doctor today and I know Ko did. Because he was in a horrible mood when we left there. I feel we didnt accomplish anything. He still has high heart rate, still going to be in pain, still cant sleep, and now worry about him gaining weight.
Right now his meds are 3/250mg Pentasa 2 times a day, 20mg Prednisone in morning and 15 at night 2, 40mg nexum 1 time a day, 1 culturelle a day, mg 6mp and multi vitamin
He is so tired all the time and always hungry.
Any advice on snacks.. Should I be worried about heart rate.. Is there anything he can do to help him sleep.. From what I read it seems to be normal for him to be tired but dr acted like it wasnt.. Is it normal for him to hurt.. The attitude I was told was probably from the pred.. Thanks so much for any help or advise.. Just want to be doing the right thing for him and I feel so helpless. I dont want to be a mother that is crazy and drives people crazy but I dont want to over look anything either..
My son has been having issues with his stomach forever. He actually had his first test on his tummy when he was 8 weeks old and we found out he had reflux. He has been through a couple colonoscopys, egds and ph probes. Not to mention ct scans and mri's & etc..
My son wants to act like nothing is wrong all the time but he has been in out and out of hospitals for years. He has been on medicine almost everyday of his life. He has a kidney disease called hypercalcuira, and also benign rolandic epilepsy. He gets allergy injections once a week and has severe nose bleeds. So having stomach issues adds to it s but he alwasy just goes with the flow.
I have tried for years now to get something done about his tummy. I knew there was something not right but GI doctor always blew me off.. Now we have changed GI doctors after this last hospital stay.
I had to take my son to the ER on Valentines day because he was in so much pain. (He has a very high pain tolerace 4 years ago he rode his bike home from down the street with a broken ankle.) They did lab and urine cultures and said he had they thought a UTI because of blood in the urine. Uh no he doesnt. He always has blood in his urine. We were sent home. Ko started running a high fever during the night and by morning was throwing up and crying because he was in such pain. I called GI doctor and was told ER said it was UTI so now it was a Kidney issue I would have to call kidney doctor. I said I am looking at release papers from hospital and it says call GI in the morning. And this is what I am doing. Well we ended back up in the ER. Doctor that time said she thought it was GI issue. She ordered ultra sound of gall bladder and kidney. Ct scan with dye and contrast of kidney and gall bladder. Kidney looked good. But he had redness or something around appendix area. He was admitted into the hospital and did colonoscopy just a few hours later. Had to try and clean him out the best we could. Colonoscoy showed red streaks and abnormality where large and small intestines met and it was covered with puss. So byopsies were taken. Later that day they did an MRE with contrast which showed inflamation in a couple of different places.
After a few days in the hospital they were afraid he was also having seizures again. So he was sent to have MRI of brain and EEG of brain. A few minutes later they were rushing him back down to have MRI of brain with contrast to check his brain tissue. Yes I was scared to death. They thought he had a brain tumor on the right size but after this MRI said it was just a malformation on the right side that could have happened if he bumped his head when he was younger. All this time his heartrate never came out of the low 50s. So an EKG was ordered and came back fine.
Ko was asked how he was feeling when he was in the hospital. He said I feel okay other than my stomach. HE was told well honey your stomach is why you are here. He said I know but my stomach has hurt all my life. I dont ever remember not having stomach pain. That just about broke my heart.
He stayed 8 days in the hospital. The last 5 he was gettin IV steroids and Pentasa. .
Okay thats a little bit of what was going on the first couple of weeks ago.
So starting last Wednesday night his heart rate started going high. By Thursday morning I was calling GI and Neuro. I was advised to take him off of Elavil. They thought that was making his heart race. So stopped that and Neuro called me that afternoon and heart rate was 130. I waas told to take him to the Er. When we got there heart rate was 135. He said he felt like he had been running.They did EKG and chest xray and said everything was okay. Sent us home. Friday heart rate was still high. He finally thought he felt like going to the store. So we went to get finally things for his birthday party the next day. We were in store for about 10 minutes and he said his feet hurt really bad. SO I said we would go home. BY the time we got to check out his feet felt numb. So as soon as we got home I had him take socks and boots off. His feet where swollen and he said he couldnt feel them. I rubbed heard even tried to tickle his feet with him not even movign them. He said he couldnt feel it. Called doctor back and they said if it didnt get better to take him to er. Ko was so afraid of being in hospital and missing his party. And I was afraid of taking him back to er and catching something from another child there. SO we decided to watch him. The swelling went down. Heart rate stayed high all weekend.
Today
We got to GI office and doctor came in and asked how Ko was feeling. Ko let him know he feels the same stomach wise. But now he feels tired and achy. He let him know that he was having alot of trouble sleeping. I let the doctor know about the concern of the heart rate, swelling and numbing of the feet. He acted like he didnt know anything about Kota being at the hospital Thursday with the high heart rate and the swelling of the feet. Acted like it wasnt a big deal.
Then I told him he says his knees and shoulders ache all the time. He said he had no idea why that was happening. I said he had been in alot of pain but doesnt see the point in taking tylenol when it doesnt do anything. He said well he can take Motrin. I let him know UH no he cant.. He said it wouldn't be effected by his crohn's. Okay well we were told years ago he cant take it becasue of his nose bleeds. He said well one dose want effect that Uh yes it will because the first night I called GI clinic and you were on call before Ko went into the hospital you advised me it was okay for him to take Motrin and guess what we woke up the next morning to nose bleeds. He said well if his pain is so bad that tylenol is not helping then he needs to be in the hospital. Well thats great now Kota will not tell me that he is hurting out of fear of having to go back to the hospital.
He then said we needed to treat Ko like a regular 12 year old boy. Okay we pretty much already do. He has chores, he does homework and etc. I told him he stays so tired but cant sleep. Its been 4 in the morning the last few nights/mornings before he goes to sleep. He will lay there for hours and not be able to sleep. Well I have always been the type of mommy thats not asleep til my kids are sleeping. So I know when he is sleeping. He said well when he was a 12 year old boy his momma would have smacked him if he wasnt asleep at 4 in the morning. (Well your momma is not Kotas momma). He said there is no reason why he isnt sleeping. He asked what time he wakes up in the mornings. I said he gets up at 8:30 takes medicine and eats breakfast and then goes back to sleep until about 9:30-10. He is homeschooled so I have been working his days around him and how he feels. We have been having to do class work when he is laying around but he hasnt felt like doing alot at a time. He said he shouldn't be sleeping during the day or really having to rest. If he didnt rest or sleep during the day he would be tired at night. Which I call bullcrap on that. I know Ko and know his not sleeping at night has nothing to do with the day time. He is so tired. HE said he had no idea what to do to help him sleep. Because he has never had troube sleeping. He said we could try melatinin (sp) we have tried that in the past but caused head aches.
Then he said just like any other 12 year old we have to watch his weight and not let him get over weight. He has gained 5 pounds in 3 weeks. I said yes I understand that can you give me any ideas what he can snack on because he says he is always hungry but your office said he could not have any fruits or veggies. He once again said he really didnt have any ideas on snacks. We just had to watch his weight and he didnt need to be gaining weight or snaking. Okay great now Ko is going to be worrying more about his weight. He already gets so upset because he says he is always hungry. Doc said he needed to get more active. Outside playing, walking running or bike riding. All things Ko loves to do and use to do but says now he doesnt feel like it. Plus I worry him running or being really active with a heart rate thats staying at 115 and up. If he feels like he is running when he is really just sitting still.
We are taking 17 year old son to see this GI doctor on the 2nd on April because he has always had trouble with his stomach and had blood in in stool.
So I got a little discouraged at the doctor today and I know Ko did. Because he was in a horrible mood when we left there. I feel we didnt accomplish anything. He still has high heart rate, still going to be in pain, still cant sleep, and now worry about him gaining weight.
Right now his meds are 3/250mg Pentasa 2 times a day, 20mg Prednisone in morning and 15 at night 2, 40mg nexum 1 time a day, 1 culturelle a day, mg 6mp and multi vitamin
He is so tired all the time and always hungry.
Any advice on snacks.. Should I be worried about heart rate.. Is there anything he can do to help him sleep.. From what I read it seems to be normal for him to be tired but dr acted like it wasnt.. Is it normal for him to hurt.. The attitude I was told was probably from the pred.. Thanks so much for any help or advise.. Just want to be doing the right thing for him and I feel so helpless. I dont want to be a mother that is crazy and drives people crazy but I dont want to over look anything either..
