Ok so update: The test results are back for the 39 mutations and of course he was negative for any of those 39...so they are going to do a repeat sweat test because the Dr is convinced that the sweat test was incorrect because he was dehydrated. Ughhh!!!! Poor mom!!!! Any thoughts anyone??
21 Month Old
- Thread starter Super Man's Mommy
- Start date
Aboveallislove
Super Moderator
Put salt in beverages two days and one day before test to improve sweat. That what they had me do for ds for newborn. And insist on full screening no matter what results...sorry short we'd to do bedtime. Hugs and prayers
Super Mans Mommy,
Your symptoms sound nearly identical to what my son experienced before he was diagnosed at 3 1/2 months old. He had pneumonia 3 times, ear infections, projectile vomiting, blew out diapers like he was full of compressed air, and sweated really bad. His sweat test came back 88 if i remember correctly (that was 13 years ago), but we had geno test back very quickly though since he had a really common mutation pair. I do hope that you get the answers you are so anxiously awaiting, though I hope he comes back negative for CF. I wish you all the best, just hang in there!
Your symptoms sound nearly identical to what my son experienced before he was diagnosed at 3 1/2 months old. He had pneumonia 3 times, ear infections, projectile vomiting, blew out diapers like he was full of compressed air, and sweated really bad. His sweat test came back 88 if i remember correctly (that was 13 years ago), but we had geno test back very quickly though since he had a really common mutation pair. I do hope that you get the answers you are so anxiously awaiting, though I hope he comes back negative for CF. I wish you all the best, just hang in there!
Super Man's Mommy
New member
I am just beside myself. The nurse told me that the doctor said I should be satisfied!!!! Why should I be satisfied, I still do NOT have a proper diagnosis.... Geez!!!! I am told that we will re-do a sweat test, but we will not be doing further blood test! I don't even know what to say...
Aboveallislove
Super Moderator
I m so sorry. If after sweat test the doctor refuses to order full genotype screen ask the doctor to put in writing in the file that you requested the testing and that he refused and the reason and ask for a copy of it. At this point if he refuses you'll want a new doctor anyway, but this might get him thinking I better do it to protect myself. I am so sorry. Praying for you all. Also do give salt in drinks as much as possible without causing gagging.
Super Man's Mommy
New member
Will that cause any problems with the testing, or just cause him to sweat more? I am sorry if that is a stupid question...
Super Man's Mommy
New member
Printer,
we are using Austin Childrens Chest Associates... Jenny C. looked up the Pulmonologist... He is a CF specialist and the clinic is CF approved.
we are using Austin Childrens Chest Associates... Jenny C. looked up the Pulmonologist... He is a CF specialist and the clinic is CF approved.
Super Man's Mommy
New member
Bill
Dr. Jason Fullmer.... He works out of Austin Childrens Chest Associates. It is affiliated with Dell Children's Hospital.
Dr. Jason Fullmer.... He works out of Austin Childrens Chest Associates. It is affiliated with Dell Children's Hospital.
OK (For example) Massachusetts General Hospital Hospital is an Approved CF Clinic. They have more than 2000 Doctors on staff and another 1000 Doctors who are affiliated with MGH. Only seven Doctors (all on staff) are CF Specialists.
You do what is best for you but he is not a CF Specialist and being affiliated is not the same as being on staff.
Good luck,
Bill
You do what is best for you but he is not a CF Specialist and being affiliated is not the same as being on staff.
Good luck,
Bill
Aboveallislove
Super Moderator
It won't screw up test if he doesn't have cf. it will make sweat more and if cf could possibly raise levels...if no cf body processes salt properly.
Hi Bill, if I'm not mistaken I read an article that tells that he is actually the CF Director at Dell's. I guess he just doesn't see what we all see. 
But he is doing a repeat sweat test and I feel like it will have to come back probably around the same maybe a little higher and then she can push for the full panel and do like Aboveallislove suggested. Thank you for all of your help with this...I feel so bad for my dear friend and what they are going through I guess we were really blessed that her sweat test was a for sure positive at the time.
http://doctors.seton.net/stories/story-detail/dell-childrens-cystic-fibrosis-care-is-tops
But he is doing a repeat sweat test and I feel like it will have to come back probably around the same maybe a little higher and then she can push for the full panel and do like Aboveallislove suggested. Thank you for all of your help with this...I feel so bad for my dear friend and what they are going through I guess we were really blessed that her sweat test was a for sure positive at the time.http://doctors.seton.net/stories/story-detail/dell-childrens-cystic-fibrosis-care-is-tops
No problem I am just so sad for my dear friend and wish the dr's would try to get her answers sooner It's so hard watching your baby suffer when you are suppose to take care of them and make everything all better, just breaks my heart for her because I've been there done that just like probably over half the parents on this site. But I'm sure God has a reason for the delay we just don't know what that is yet
I am just so sad for my dear friend and wish the dr's would try to get her answers sooner It's so hard watching your baby suffer when you are suppose to take care of them and make everything all better, just breaks my heart for her because I've been there done that just like probably over half the parents on this site. But I'm sure God has a reason for the delay we just don't know what that is yet Super Man's Mommy
New member
We have been scheduled for a ANOTHER SWEAT TEST on Thursday Febuary 21!!!!!!!! Lots of salt and fluid!!!!!!
I would like to thank EVERYONE for your input, opinions, help, encouragement and kindness!!!! I am so greatfull!!!(L)
I would like to thank EVERYONE for your input, opinions, help, encouragement and kindness!!!! I am so greatfull!!!(L)
Aboveallislove
Super Moderator
Please know of continued prAyers.
Super Man's Mommy
New member
More then anything I NEED/WANT a Diagnosis!!!! I need to know what is wrong so I may receive the correct care plan and move forward!!! PICC line is scheduled to be removed on the 14th because that will be 28 days of antibiotics and I must say I do not want it removed because I know he will be sick all over again...
The doctors favorite thing to tell me is, oh its Viral... It will pass... No it will not pass in a matter of two days it will be bronchitis and in 4 to 5 days it will be pnuemonia...
The doctors favorite thing to tell me is, oh its Viral... It will pass... No it will not pass in a matter of two days it will be bronchitis and in 4 to 5 days it will be pnuemonia...