A new journey is what this truly feels like. I'll start at the beginning.
Edit: She has NOT been officially dx yet!
6 months old her pains started to hit. They started as abdomen pains. Soon to follow was belly and knee pain. Grace from birth to about 11 months old had to be "help" to have a bowel movement. Her toe nails curled under (malnutrition). As she grew her pains became worse. She developed asthma and sinus problems. Acid reflex reared it's ugly head. He growth was slow. Her weight was study ( always a good eater). Around 2 1/2 yrs. old she should no more sighs, we thought great the nightmare it done. However it came back around her third birthday with a scary vengeance. Now her symptoms were worse and she started losing weight fast. Our GP how has seen Grace since birth has always taking a wait and see approach finally took blood and stool samples over a couple weeks and found she had HIGH LDH, elevated liver enzymes and other thing. He also found she had c. diff. He was hoping that was the culprit all along. It was not. She declined more. She was taken off every kind of food and drink worth living. In this time I found this forum heart: you guys) She was sent to a GI downstate. He is the one to mentioned IBD, which we already thought.:wink: However her blood results were normal enough and he also wants to wait. He put her on Miralax and another med. Constipation is also more of a deal than diarrhea. She's had an impaction. A mother knowns her baby. We searched for answers and we meant a wonderful family that told us about there girl that has Mastocytic Entercolitis. I remember reading their story and info on this new IBD. The next day I had this info in my nurse's hands. I said this is it!!!! She said they would read it and they did. I think it shocked them that I could be right. I got a call on Friday and she said they believe I COULD BE RIGHT. She and the doc seem excited (in a sad way) that this could be it. She said on Tuesday we're to get in and we'll talk more. So their is the long short of it. I KNOW I forgot things but that will be brought up in time.
Grace is doing better today but she's having potty accidents again. BTW Bladder spasms can be from Mastocytic Entercolitis (ME) also known as MIBD or MC. Her acid reflex has started up and tomorrow will be day #3 of no poo.
I'll post more about this new IBD in my next post.
Again this can change! We might be pointed in another direction next week?:biggrin::heart:
UPDATE AS OF 11-5-12
Blood and mucus in stool.
Joint pain causing limpness of the left leg and pain that has to be treated with meds.:thumbdown:
Started EN, but to sick to contuniue it, right now because of bad stomach pains.
Update as of 11-10-12
ER visit because of blood in stool
Stomach got worse. She's on zantak now.
Losing weight at first but now steady. Still on two shakes of EN a day.
Edit: She has NOT been officially dx yet!
6 months old her pains started to hit. They started as abdomen pains. Soon to follow was belly and knee pain. Grace from birth to about 11 months old had to be "help" to have a bowel movement. Her toe nails curled under (malnutrition). As she grew her pains became worse. She developed asthma and sinus problems. Acid reflex reared it's ugly head. He growth was slow. Her weight was study ( always a good eater). Around 2 1/2 yrs. old she should no more sighs, we thought great the nightmare it done. However it came back around her third birthday with a scary vengeance. Now her symptoms were worse and she started losing weight fast. Our GP how has seen Grace since birth has always taking a wait and see approach finally took blood and stool samples over a couple weeks and found she had HIGH LDH, elevated liver enzymes and other thing. He also found she had c. diff. He was hoping that was the culprit all along. It was not. She declined more. She was taken off every kind of food and drink worth living. In this time I found this forum heart: you guys) She was sent to a GI downstate. He is the one to mentioned IBD, which we already thought.:wink: However her blood results were normal enough and he also wants to wait. He put her on Miralax and another med. Constipation is also more of a deal than diarrhea. She's had an impaction. A mother knowns her baby. We searched for answers and we meant a wonderful family that told us about there girl that has Mastocytic Entercolitis. I remember reading their story and info on this new IBD. The next day I had this info in my nurse's hands. I said this is it!!!! She said they would read it and they did. I think it shocked them that I could be right. I got a call on Friday and she said they believe I COULD BE RIGHT. She and the doc seem excited (in a sad way) that this could be it. She said on Tuesday we're to get in and we'll talk more. So their is the long short of it. I KNOW I forgot things but that will be brought up in time.
Grace is doing better today but she's having potty accidents again. BTW Bladder spasms can be from Mastocytic Entercolitis (ME) also known as MIBD or MC. Her acid reflex has started up and tomorrow will be day #3 of no poo.
I'll post more about this new IBD in my next post.
Again this can change! We might be pointed in another direction next week?:biggrin::heart:
UPDATE AS OF 11-5-12
Blood and mucus in stool.
Joint pain causing limpness of the left leg and pain that has to be treated with meds.:thumbdown:
Started EN, but to sick to contuniue it, right now because of bad stomach pains.
Update as of 11-10-12
ER visit because of blood in stool
Stomach got worse. She's on zantak now.
Losing weight at first but now steady. Still on two shakes of EN a day.
Last edited: