I Am New to Everything

[riehlism]

My name is Jasmin and I have a baby boy named Lucas. At birth he had meconium ileus and needed a laparotomy to irrigate his colon, nothing was removed. At 4 months it was disovered that he has a milk protein allergy and we switched him to Alimentum. He has been hovering around 14 pounds since then. He is currently 7 months old.
We were admitted at UCLA over a week ago for low albumin, which was 1. He had intermittent swelling in his eyes, which led our pediatrician to think he was losing protein somewhere. Liver and kidneys checked out clean, so the GI tract was the only other option.
He is being worked over for pancreatic insuffiency and is on Creon (very difficult to give to him). My husband, Lucas, and I were all screened for the initial panel for CF (I don't know what that panel is called), and were were negative for the most common mutations. Lucas has also had 2 sweat chloride tests that were negative, although it seems that test isn't too sensitive. Currently, all the attendings on staff are split down the middle if he has CF or not. Lots of his tests are still pending, so everything seems to be up in the air.
I have numerous questions, as you might imagine.
1) Are any of you out there in a similar boat? What have your experiences been?
2) If you/your child has a CF mutation that is outside of the most common, how have you dealt with it?
3) As we are having problems giving our son Creon (he now has a solid food aversion because we used to mix it in there), how are you dealing with that and daycare?
I have tons more questions, but I figured this is enough reading for anyone who wishes to help.

 

[riehlism]

My name is Jasmin and I have a baby boy named Lucas. At birth he had meconium ileus and needed a laparotomy to irrigate his colon, nothing was removed. At 4 months it was disovered that he has a milk protein allergy and we switched him to Alimentum. He has been hovering around 14 pounds since then. He is currently 7 months old.
We were admitted at UCLA over a week ago for low albumin, which was 1. He had intermittent swelling in his eyes, which led our pediatrician to think he was losing protein somewhere. Liver and kidneys checked out clean, so the GI tract was the only other option.
He is being worked over for pancreatic insuffiency and is on Creon (very difficult to give to him). My husband, Lucas, and I were all screened for the initial panel for CF (I don't know what that panel is called), and were were negative for the most common mutations. Lucas has also had 2 sweat chloride tests that were negative, although it seems that test isn't too sensitive. Currently, all the attendings on staff are split down the middle if he has CF or not. Lots of his tests are still pending, so everything seems to be up in the air.
I have numerous questions, as you might imagine.
1) Are any of you out there in a similar boat? What have your experiences been?
2) If you/your child has a CF mutation that is outside of the most common, how have you dealt with it?
3) As we are having problems giving our son Creon (he now has a solid food aversion because we used to mix it in there), how are you dealing with that and daycare?
I have tons more questions, but I figured this is enough reading for anyone who wishes to help.

 

[Aboveallislove]

Jasmin,
I am so very sorry dear mommy. I know how muc this hurt. First, a big hug.
I can't help with #1 because our son was diagnosed positive at 10 days old. Re #2: My understanding is even if not a common mutation, it doesn't matter--the treatment is the same, although they might not need enzymes if the pancreas functions--sounds like Lucus' dosen't.

Re #3: Our son refused his enzymes b/c I had been "forcing" food on him. I got some help from a wonderful nutritionsist/feeding expert on meds. this is the link. http://www.ellynsatter.com/june-2011-family-meals-focus-58-medication-and-the-division-of-responsibility-i-171.html It is hard to do but it works and has worked for all other meds since then in much shorter time (maybe 10 minutes first time with a new one). Our son liked them in prunes b/c he liked prunes. Does he have a puree he tolerates? If you have problems with the link or want me to walk you through the process let me know. I'd suggest starting on a weekend when you and your husband can take turns but you need to be on the same page and very strong in this--it truly will work.
Shooting up some prayers for you all today.

 

[Aboveallislove]

Jasmin,
I am so very sorry dear mommy. I know how muc this hurt. First, a big hug.
I can't help with #1 because our son was diagnosed positive at 10 days old. Re #2: My understanding is even if not a common mutation, it doesn't matter--the treatment is the same, although they might not need enzymes if the pancreas functions--sounds like Lucus' dosen't.

Re #3: Our son refused his enzymes b/c I had been "forcing" food on him. I got some help from a wonderful nutritionsist/feeding expert on meds. this is the link. http://www.ellynsatter.com/june-2011-family-meals-focus-58-medication-and-the-division-of-responsibility-i-171.html It is hard to do but it works and has worked for all other meds since then in much shorter time (maybe 10 minutes first time with a new one). Our son liked them in prunes b/c he liked prunes. Does he have a puree he tolerates? If you have problems with the link or want me to walk you through the process let me know. I'd suggest starting on a weekend when you and your husband can take turns but you need to be on the same page and very strong in this--it truly will work.
Shooting up some prayers for you all today.

 

[jbrandyn]

Hey Jasmin,
My Mommy would open the pills so the little beads came out and give them to me in a spoonful of applesauce or chocolate syrup, apparently that worked.
Hope your adjustment smooths out and that your son gets better.
Best Wishes!

 

[jbrandyn]

Hey Jasmin,
My Mommy would open the pills so the little beads came out and give them to me in a spoonful of applesauce or chocolate syrup, apparently that worked.
Hope your adjustment smooths out and that your son gets better.
Best Wishes!

 

[Printer]

Sweat tests for you and hubby have no bearing unless one or both of you have CF. Screening for most common mutations is a test for 250 mutations. There are more than 1800 known mutations.

LCLA is not an APPROVED CF CENTER and the Doctors that you are seeing are NOT CF Specialists. You need to have them consult with CF Doctors at LA Childrens. At the earliest possible opportunity, move son to LA Childrens and see a CF SPECIALIST.

Bill

 

[Printer]

Sweat tests for you and hubby have no bearing unless one or both of you have CF. Screening for most common mutations is a test for 250 mutations. There are more than 1800 known mutations.

LCLA is not an APPROVED CF CENTER and the Doctors that you are seeing are NOT CF Specialists. You need to have them consult with CF Doctors at LA Childrens. At the earliest possible opportunity, move son to LA Childrens and see a CF SPECIALIST.

Bill

 

[TestifyToLove]

LA Children's is UNDER UCLA. It's part of the same hospital system and YES they are INFACT an APPROVED CF CENTER.

Try checking your facts better before attacking yet another new family, Printer.

 

[TestifyToLove]

LA Children's is UNDER UCLA. It's part of the same hospital system and YES they are INFACT an APPROVED CF CENTER.

Try checking your facts better before attacking yet another new family, Printer.

 

[Ratatosk]

DS hated applesauce, so we'd give him enzymes with baby food bananas. They stuck to the spoon better. Have they discussed having you mix more powder to water for a higher calorie formula?

 

[Ratatosk]

DS hated applesauce, so we'd give him enzymes with baby food bananas. They stuck to the spoon better. Have they discussed having you mix more powder to water for a higher calorie formula?

 

[riehlism]

Lucas doesn't do the powder. He can only do the ready to feed. We are adding rice cereal to his formula. I tried bananas at some point and it worked fine, until he just avoided solid food altogether.

 

[riehlism]

Lucas doesn't do the powder. He can only do the ready to feed. We are adding rice cereal to his formula. I tried bananas at some point and it worked fine, until he just avoided solid food altogether.

 

[Mistyjo]

Jasmin, my daughter is failure to thrive and had bowel resection. She had borderline sweat test. Only one cf mutation showed up on full genetic testing that I know of and it is a rare one. Her bowel tissue was tested for cftr function and it was positive for CF. good luck and keep pushing for answers.

 

[Mistyjo]

Jasmin, my daughter is failure to thrive and had bowel resection. She had borderline sweat test. Only one cf mutation showed up on full genetic testing that I know of and it is a rare one. Her bowel tissue was tested for cftr function and it was positive for CF. good luck and keep pushing for answers.

 

[Printer]

TestifyToLove: It is possible to be seen at a hospital that is affiliated with or even has a CF Center in house without being a patient of the CF Center. I stand by what I said. If the child is seeing a CF Specialist, then fine. If not, he should be. I do appreciate your reply. FYI, I went 47 years of mis-dx and I am EXTREMELY sensitive to that happening to others. I would rather err on the side of pushing for a proper dx.
I understand that my being 72 and a CF Patient bothers you. I try to give the best advice that I can based upon my 72 years of experience with this disease and an untold number of well meaning but uninformed Doctors.
Bill

Bill

 

[Printer]

TestifyToLove: It is possible to be seen at a hospital that is affiliated with or even has a CF Center in house without being a patient of the CF Center. I stand by what I said. If the child is seeing a CF Specialist, then fine. If not, he should be. I do appreciate your reply. FYI, I went 47 years of mis-dx and I am EXTREMELY sensitive to that happening to others. I would rather err on the side of pushing for a proper dx.
I understand that my being 72 and a CF Patient bothers you. I try to give the best advice that I can based upon my 72 years of experience with this disease and an untold number of well meaning but uninformed Doctors.
Bill

Bill

 

[Beccamom]

Jasmine,

I just wanted to say your family is not alone and the people on this site are probably at least as responsible if not more responsible for my daughter's improved health then her doctors. You have many supporters here. Don't feel alone and ask as many questions as you have.

My daughter has been in limbo for a CF diagnosis for the past 16 months and she is 12 years old. Thanks to what I have learned from others on this site I know she is receiving all of the preventative CF care available. With these changes to her treatment her lung function increased from FEV1 of 55% in Jan 2011 to 100% in Jan 2012. Unfortunately she has permanent lung damage due to her mis-diagnosis of so many years and also has negative long term side affects from incorrect treatments due to her mis-diagnosis.

I hope others can learn from my mistakes. My daughter has seen pulmonologists since she was 6 months old and all were located at accredited CF centers. From ages 4 to 11 she was seen by a pulmonoloigst listed on the hospitals website as part of the CF team. To make a long story short regardless of what hospital it is important to ask how many CF patients a doctor sees. CF care is very different from other lung diseases and I wish I knew the difference many years ago.

Your child is very fortunate to have you as a mom because you are already an excellent advocate trying to learn all you can.

Best wishes,
Jen

 

[Beccamom]

Jasmine,

I just wanted to say your family is not alone and the people on this site are probably at least as responsible if not more responsible for my daughter's improved health then her doctors. You have many supporters here. Don't feel alone and ask as many questions as you have.

My daughter has been in limbo for a CF diagnosis for the past 16 months and she is 12 years old. Thanks to what I have learned from others on this site I know she is receiving all of the preventative CF care available. With these changes to her treatment her lung function increased from FEV1 of 55% in Jan 2011 to 100% in Jan 2012. Unfortunately she has permanent lung damage due to her mis-diagnosis of so many years and also has negative long term side affects from incorrect treatments due to her mis-diagnosis.

I hope others can learn from my mistakes. My daughter has seen pulmonologists since she was 6 months old and all were located at accredited CF centers. From ages 4 to 11 she was seen by a pulmonoloigst listed on the hospitals website as part of the CF team. To make a long story short regardless of what hospital it is important to ask how many CF patients a doctor sees. CF care is very different from other lung diseases and I wish I knew the difference many years ago.

Your child is very fortunate to have you as a mom because you are already an excellent advocate trying to learn all you can.

Best wishes,
Jen