Hello All!
It's been a while! Quick Background, my son Jax (13 ...14 in 2 months!) was diagnosed with Crohns in Nov. 2011, 6 week taper of Pred., Started Pentasa 3X daily, VSL #3, and EN therapy 80% of calories. Labs continued to improve with every appointment and in Dec. 2012 we tried 3 months of Rifaximin to see if we could get them normal...we did...In June 2013 his labs showed he was in clinical remission....continued enteral therapy, stopped pentasa.
Started to swim competitively in the summer of 2012...returned to doctor in Nov and labs were slightly elevated...no symptoms. Doctor mentioned restarting Pentasa. We figured the return to school, not being compliant, probably the culprit (still drinking the same amount as in June prior to swimming), so we opted to retest stool in 3 months and be more compliant with EN.
Returned in February and labs were elevated. Lacto. 9.88, Calprotect. 288. Still no symptoms, but we decided to go with the GI recommendation and restarted Pentasa 3 x daily.
He began having mild belly aches in March right after Silver/gold 13 and up championships (he did great!). --Week of March 10th. We added an additional shake and started eating really well...no processed foods/junk. Bellyaches went away for 1 week and then...their back! He fluctuates between days of feeling fine, to mild bellyaches after he eats. I should also say he was a once a day pooper and now is going 2-3 times a day. He also has a terrible Tree Pollen Allergy and stated taking his meds March 15th (Xyzol 5mg).
We are waiting for stools to return. His Bloodwork came back normal, EXCEPT for CRP which came back as 12.8.
So here are my questions:
1.) How much do I panic? It seems as though I am consumed with his health/condition and have not been able to do anything but surf the net and worry!
2.) Is it possible for this to be a minor set back? I mean I know crohns is different for everyone and I'm asking non-medical personal, but sometimes I feel like we are more experts than the experts!
3.) What do your kids' typical flares look like? He is going to school, hasn't lost any weight yet...still growing...hitting puberty hard!
4.) We are going to see a nutritionist who specializes in IBD tomorrow, Dr. Melvin Grovit ( from Columbia Presbetyrian in NYC)...Can diet help or should I not mess around and get him on steroids right away? -- Waiting for GI to call after stool labs come in....
I am so scared right now. He has done soooo well and he is making his confirmation next Friday, going on his 8th grade trip at the end of May, and graduating 8th grade in June...with his first school formal dance. BOO!!!!
Thanks in advance for all the support....
It's been a while! Quick Background, my son Jax (13 ...14 in 2 months!) was diagnosed with Crohns in Nov. 2011, 6 week taper of Pred., Started Pentasa 3X daily, VSL #3, and EN therapy 80% of calories. Labs continued to improve with every appointment and in Dec. 2012 we tried 3 months of Rifaximin to see if we could get them normal...we did...In June 2013 his labs showed he was in clinical remission....continued enteral therapy, stopped pentasa.
Started to swim competitively in the summer of 2012...returned to doctor in Nov and labs were slightly elevated...no symptoms. Doctor mentioned restarting Pentasa. We figured the return to school, not being compliant, probably the culprit (still drinking the same amount as in June prior to swimming), so we opted to retest stool in 3 months and be more compliant with EN.
Returned in February and labs were elevated. Lacto. 9.88, Calprotect. 288. Still no symptoms, but we decided to go with the GI recommendation and restarted Pentasa 3 x daily.
He began having mild belly aches in March right after Silver/gold 13 and up championships (he did great!). --Week of March 10th. We added an additional shake and started eating really well...no processed foods/junk. Bellyaches went away for 1 week and then...their back! He fluctuates between days of feeling fine, to mild bellyaches after he eats. I should also say he was a once a day pooper and now is going 2-3 times a day. He also has a terrible Tree Pollen Allergy and stated taking his meds March 15th (Xyzol 5mg).
We are waiting for stools to return. His Bloodwork came back normal, EXCEPT for CRP which came back as 12.8.
So here are my questions:
1.) How much do I panic? It seems as though I am consumed with his health/condition and have not been able to do anything but surf the net and worry!
2.) Is it possible for this to be a minor set back? I mean I know crohns is different for everyone and I'm asking non-medical personal, but sometimes I feel like we are more experts than the experts!
3.) What do your kids' typical flares look like? He is going to school, hasn't lost any weight yet...still growing...hitting puberty hard!
4.) We are going to see a nutritionist who specializes in IBD tomorrow, Dr. Melvin Grovit ( from Columbia Presbetyrian in NYC)...Can diet help or should I not mess around and get him on steroids right away? -- Waiting for GI to call after stool labs come in....
I am so scared right now. He has done soooo well and he is making his confirmation next Friday, going on his 8th grade trip at the end of May, and graduating 8th grade in June...with his first school formal dance. BOO!!!!
Thanks in advance for all the support....