I need advice

cgerhardt

New member
I have a quick question... My 6 year old had gentic testing done in Dec.and it came back that he had 5t 7t. He has had respitory problems and family history that was the reason for the testing. He has never had a problem with his weight, he did have problems with constipation when he was a newborn but once we found the right formula he seemed to be fine. 2 years ago he was complaining of a stomach ache for a few days so I took him to the doctor and they said that he could tell that he was constipated he hasn't had any problems since than, until now. In Feb. he had 3 episodes of throwing up and only once he had a fever. No one else in the house got sick, We had the stomach virus in the house the whole month of March he was the last one to get it, 10 days later he was sick again he was sick in the morning before he ate than was fine all day he ate normal food than at night about 12 hours later he was sick agian than hungery. Is it possilble he needs enzymes or is he sick again. Does the fatty food make you throw up if you are not taking enzymes,and if so does that mean it would do that every time or could it only happen sometimes?
 

Printer

Active member
Is he seeing a CF SPECIALIST or just his pead? Who did the "gentic testing" and how many mutations did they test for? Do he take Mirilax?

Bill
 

Havoc

New member
it could be that he needs enzymes, but I would like to have more information before giving an opinion. Have you spoken to your doc yet?
 

Ratatosk

Administrator
Staff member
It's hard to tell. DS is pancreatic insufficient and had issues as a baby with constipation and throwing up when he got constipated. So we had to use a laxative as per his doctor to get things moving again. Then he started having vomiting episodes a few years later and we were trying to figure it out -- was it his zithromax upsetting his stomach, certain foods, overheating/dehydration, reflux.... Turned out back then he had a bowel obstruction. More recently we've had vomiting issues again and sometimes it has to do with overeating, drinking too much water in one sitting, and just last week he had a low grade fever, which made his stomach upset.
I suggest not only going in to see the doctor, but to create a log with dates and times, foods, etc. to figure out what may be causing this.
 

JennifersHope

New member
Well I was just put back on enzymes and I sure as heck don't have trouble gaining weight but I have bowel obstructions and well lets say I have to flush the toilet more then once several times a day. I would highly recommend going to the best place you can go, Even normal CF centers are not up to date on a typical CF, or CF that does not present in the normal fashion.

I don't know where you live but National Jewish is the best pulmonary hospital in the country and they straightened me right out.. or are close to.......
 

Anomie

New member
Usually people with cf will have really loose stools without enzymes and constipation is a result of taking too many enzymes. Thats how it was with my DD but maybe other people have the opposite effect. I would say that if he is a good weight and good BMI then he's probably PS and doesn't need enzymes. Maybe take him to a G.I. Digestive issues are rarely ever clear cut.
 

jbrandyn

New member
I have this problem too and enzymes help, but its kind of just a problem I have to deal with. I would suggest keeping his bowels active with senna and using miralax everyday and especially when his belly hurts. Unfortunately the miralax will make the belly hurt more if he is constipated, but it is better than getting an obstruction (trust me). Defiantly go see a GI doc and keep his diet healthy to avoid overeating I drink a lot of whole milk and it dosent upset my belly, just remember to enzyme with it. Best of luck.
 

cgerhardt

New member
Thank you everyone. We go to Childerns Hospital in Wash. D.C. I wil be calling the Doctor in the next day or so if he doesn't seem to be getting any better. Thank you again.
 

Ratatosk

Administrator
Staff member
Sometimes, too a person can be constipated -- have a lot of stool in the colon -- yet have very loose stools. What's able to get thru in DS' case was liquid. With DS' last blockage, because his enzymes weren't able to get thru, the stool was very hard -- surgeon described it as similar to concrete and both he and the anesthesiologist question whether he ever took enzymes due to the meconium tinge and very hard (petrified) stools.

The whole digestive issue with DS was tricky when he was a baby -- did he need more enzymes, fewer enzymes, was it teething, was it certain foods. So it's best to see a specialist and keep a log of what can be causing these issues.
 

cgerhardt

New member
Bill yes we do see a CF Specialist at Childerns. I am taking him to the doctors today he had another episode last night of getting sick. Thank you and I will keep you updated.
 
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