Mystery Diagnosis

R

rose2wood

Guest
My son is 22 yrs old. Diagnosed at 4 yrs old. Heath was maintained until about age 16. After several years of battling weight loss and frequent I.V. meds. CF dr recommended Nissan Fundleplication and g-tube. At the time of surgery he weighed 140 ( 6 ft tall) pft around 32. Since that surgery 2008, he has been extremely ill. He does nightly tube feeds, he cannot gain weight (weights 104-110) bloating & nauseous daily, cannot vomit due to surgery but long bouts of retching daily, developed gluten intolerence/celiac disease. He has tried every medication nothing helps. He lives on phenergan. His pft have been anywhere from 30 down to 13. He is a fighter but at the same time very worn down from all the sickness. We have been to the two CF centers, several gastroenterologist and they are clueless. Something is not right, anyone been down this road?
 
P

Printer

Active member
I don't know where you live but I want you to Google Steven D. Freedman, MD, PhD. He is located in Boston and as other people will tell you with their following posts, He is the TOP CF GI DOCTOT IN THE WORLD.

You need to see him ASAP.

Bill
 
M

mysticrose

New member
Have they absolutely ruled out Crohn's through biopsy and blood test? I only ask because my son had horrible GI issues for years before he was finally diagnosed. Now that he has the meds he has made a complete turn around. Has he tried eliminating grains, corn, nuts, uncooked veggies and fruit?

I hope your son can find some relief and what is going on, it is so hard to wait and hope they figure out what is going on.

Jen mom to 4 kiddos. 3/cf and one lucky red head.
 
R

rose2wood

Guest
We live in Ohio, but at this point no place is too far to get help. From the time he was born until 4 years old, I kept telling doctors that something is not right. I know they thought I was nuts, because he was 75 percentile on growth chart. However, I knew that his frequent and unusual B.M., chronic sinusitis and coughing was not "normal". I took him from allergist, infection specialist to ENT then finally he was diagnosed with CF. here we are again with G.I. Issues and they have done CAT scan, swallow study test, endoscopy and say everything looks fine. They have tried changing enzymes, different tube feed formal along with different rate of feeding to all medications. I have asked several times about gallbladder and they say no. I can say one thing for sure, NEVER would have had his Nissan surgery, he has been worse since then. The CF center started blaming him on his decline in health, after 14 years, we changed CF center and doctors. Let me just say Dayton Children's Hospital and Miami Valley Hospital, doctors and nurses, staff etc WONDERFUL. Even though they are concerned and cannot find the reason behind his GI issues, they treat him like Gold. It is a hour drive but worth every mile. I definitely will contact Dr. Steven Freedman.
 
P

Printer

Active member
He only sees patients on Fridays and does CF research on the other 4 days. If anyone can help your son Steve can.

Bill
 
P

pencf

Guest
Has he been evaluated for transplant? With FEV1 in the 30's or lower, he is definitely in that range. What did that procedure you mentioned entail? Was it for his respiratory system or his digestive system???
 
T

tazgc1961

New member
The fundoplication could be to tight some doctors make them to tight and it can cause wretching, bloating, stomach pain , and inability to vomit .it woulld be wise to see a different GI to determine if the Fundo is to tight..
@PENCF it is a GI procedure inwitch the top of the stomach is wrapped around itself to help control severe acid reflux...
 
R

rose2wood

Guest
We have appt to see Dr Freedman, hoping he can figure out why Jordan is sick all the time.
 
R

rose2wood

Guest
My husband, Larry and our son, Jordan flew to Boston to see Dr Freedman. The visit went very well even though there is not a magic pill to prescribe that will make Jordan's GI issues disappear. However, Dr Freedman will be following Jordan's care along with his cf doctors (Dr Onady and Dr Polenakovik) here in Ohio to resolve his stomach problems. Larry and Jordan were impressed with the amount of time Dr Freedman spent with Jordan today. Thanks for recommending him, I am glad that I reached out on this forum for help.
 
R

rose2wood

Guest
It goes to show if you feel like you hit a wall with doctors, seek out for second, third or for us 6th doctor. There is someone out there that is or has been in your shoes that can give you advice or referrel for help. We had to travel out of state but worth the sacrifice.
 
P

Printer

Active member
I'm glad that your son went to see Dr. Freedman. If anyone can help Jordan Dr Freedman is the person.
 
You must log in or register to reply here.
Top