Pancreatic Questions - Help!!

[Justinsmom]

Hi,
My beautiful 7 year old son is being evaluated (and currently treated for possible) atypical CF. Hehad a normal sweat test and one confirmed mutation (associated with negative sweat tests.)
His plancreatic function declined quite rapidly from January to July of last year (fecal elastase 148, 70 in the end of Feb and 25 in July) with drop of bmi to less than 3%. He has been on creon with excellent improvement in weight gain (3 1/2 to 4 lbs - put him back to the 25% where he has always been for weight) and reduction of symptoms until recently. He has began to have pain, bloating and nausea again. These are the same symptoms he had when he had all the problems. Can anyone tell me if their child has had these symtoms related to the pancreas while it was declining? Does it mean the "other side" may be failing? He also has eosinophilic esosphagitis, constipation and food intollerances that make it difficult to say what is what except I know he had all of these symptoms when his pancreas was declining.
I appreciate any advice or experience you may have and also realize that each child is different. Thank you in advance.
Justin's Mom

 

[Justinsmom]

Hi,
My beautiful 7 year old son is being evaluated (and currently treated for possible) atypical CF. Hehad a normal sweat test and one confirmed mutation (associated with negative sweat tests.)
His plancreatic function declined quite rapidly from January to July of last year (fecal elastase 148, 70 in the end of Feb and 25 in July) with drop of bmi to less than 3%. He has been on creon with excellent improvement in weight gain (3 1/2 to 4 lbs - put him back to the 25% where he has always been for weight) and reduction of symptoms until recently. He has began to have pain, bloating and nausea again. These are the same symptoms he had when he had all the problems. Can anyone tell me if their child has had these symtoms related to the pancreas while it was declining? Does it mean the "other side" may be failing? He also has eosinophilic esosphagitis, constipation and food intollerances that make it difficult to say what is what except I know he had all of these symptoms when his pancreas was declining.
I appreciate any advice or experience you may have and also realize that each child is different. Thank you in advance.
Justin's Mom

 

[Ratatosk]

How do his stools look? DS had issues with constipation when he was much younger, so sometimes we'd have to give him milk of magnesia to get him cleaned out. A friend of mine's daughter is on maintenance miralax due to constipation issues.

Most of DS' issues recently tend to happen if he eats too many peanuts, so we've limited the amount he can have. Othertimes it's if he doesn't get enough enzymes -- usually because he's snacking/grazing all day long on the weekends.

 

[Ratatosk]

How do his stools look? DS had issues with constipation when he was much younger, so sometimes we'd have to give him milk of magnesia to get him cleaned out. A friend of mine's daughter is on maintenance miralax due to constipation issues.

Most of DS' issues recently tend to happen if he eats too many peanuts, so we've limited the amount he can have. Othertimes it's if he doesn't get enough enzymes -- usually because he's snacking/grazing all day long on the weekends.

 

[Printer]

Josette:

Having been hospitalized almost 70 times over a 10 year period, prior to being dx with CF, I understand something about what your son is experiencing.

If he were my son, I would find a Gastrologist who deals with CF patients. Each time son is experiencing pain he is (in my experience) having a pancreatitis attack. If I'm right, each attack is causing PERMANENT damage to the pancrease.

If you need help in finding a qualified CF Gastrologist, send me a private massage and I can help.

Bill

 

[Printer]

Josette:

Having been hospitalized almost 70 times over a 10 year period, prior to being dx with CF, I understand something about what your son is experiencing.

If he were my son, I would find a Gastrologist who deals with CF patients. Each time son is experiencing pain he is (in my experience) having a pancreatitis attack. If I'm right, each attack is causing PERMANENT damage to the pancrease.

If you need help in finding a qualified CF Gastrologist, send me a private massage and I can help.

Bill

 

[Justinsmom]

Hi Bill,
You have been very helpful and I really appreciate it. Since I do not know how to send you a private message, I will contact you through this and hope you read it. Justin is being treated by the ped. GI at CHOP (Phila) who is the CF expert. She is out of town and I will be talking to her next week. Could you tell me anything about your experiences? I assume Justin is completely insufficient in that they stopped testing his elastase level because they said anything under 15 they could not detect and he was at 25. Kids normal is 400-500. Does it seem quick to decline so quickly (I see this noted in a letter to his ped?) Once the function is gone, does it continue to do damage? I hate to see him in pain again. Last year he would curl up in a fetal position and cry almost every night. He wore (and has started again this past week or so) a nightgown to sleep in EVEN in front of his 9 year old brother because it doesn't hurt him so much. Because he has gained weight, I know they are seeing him as doing much better (and he had been for several months) on the Creon. Did you still have pain/nausea after being treated with Creon? Are you diabetic? How long did that take? Do/did you have lung issues? Justin was diagnosed with well controlled asthma when he was 18 months old. Just began needing a little more help (Singular, nose spray, adding Flovent 3 times a day early this month) and the last few nights coughs all night without a neb treatment of Xopenex. Do you have any suggestions that might make a little boy feel better? We do a warm bubble bath and look at pictures of our "Sunny Days" including anything with Elmo.
I thank you so much for your input.
Josette

 

[Justinsmom]

Hi Bill,
You have been very helpful and I really appreciate it. Since I do not know how to send you a private message, I will contact you through this and hope you read it. Justin is being treated by the ped. GI at CHOP (Phila) who is the CF expert. She is out of town and I will be talking to her next week. Could you tell me anything about your experiences? I assume Justin is completely insufficient in that they stopped testing his elastase level because they said anything under 15 they could not detect and he was at 25. Kids normal is 400-500. Does it seem quick to decline so quickly (I see this noted in a letter to his ped?) Once the function is gone, does it continue to do damage? I hate to see him in pain again. Last year he would curl up in a fetal position and cry almost every night. He wore (and has started again this past week or so) a nightgown to sleep in EVEN in front of his 9 year old brother because it doesn't hurt him so much. Because he has gained weight, I know they are seeing him as doing much better (and he had been for several months) on the Creon. Did you still have pain/nausea after being treated with Creon? Are you diabetic? How long did that take? Do/did you have lung issues? Justin was diagnosed with well controlled asthma when he was 18 months old. Just began needing a little more help (Singular, nose spray, adding Flovent 3 times a day early this month) and the last few nights coughs all night without a neb treatment of Xopenex. Do you have any suggestions that might make a little boy feel better? We do a warm bubble bath and look at pictures of our "Sunny Days" including anything with Elmo.
I thank you so much for your input.
Josette

 

[Printer]

Josette

I sent you a personal message.

Bill

 

[Printer]

Josette

I sent you a personal message.

Bill

 

[Printer]

Creon does not treat pancretitis. Creon helps with the issue of mal fat absorption. Pancretitis is a much more serious situation than gas and diarrea. Has he had a full cf sequencing done yet?

 

[Printer]

Creon does not treat pancretitis. Creon helps with the issue of mal fat absorption. Pancretitis is a much more serious situation than gas and diarrea. Has he had a full cf sequencing done yet?

 

[Mommafirst]

Bill is much more knowledgeable on this than I am, but I can affirm that our doctor just recently told me that pancreatic function in CF kids can fall off very quickly, which is why the majority of CF babies are born pancreatic insufficient. My daughter is sufficient but we watch her stools regularly to assess any fall off. The doc also talked about the miserable pain of pancreatitis that tends to coincide with pancreatic decline, but not necessarily.

I'm so sorry your son is dealing with this. I'm surprised they won't give him a CF diagnosis with all the symptoms.

 

[Mommafirst]

Bill is much more knowledgeable on this than I am, but I can affirm that our doctor just recently told me that pancreatic function in CF kids can fall off very quickly, which is why the majority of CF babies are born pancreatic insufficient. My daughter is sufficient but we watch her stools regularly to assess any fall off. The doc also talked about the miserable pain of pancreatitis that tends to coincide with pancreatic decline, but not necessarily.

I'm so sorry your son is dealing with this. I'm surprised they won't give him a CF diagnosis with all the symptoms.

 

[dmsbclayton]

My son is 13 and has chronic pancreatitis with his CF. I would love any information that any of you have about pancreatitis. I don't feel we have gotten a lot of information about this and we aren't sure he is getting the best care with regards to this.

 

[dmsbclayton]

My son is 13 and has chronic pancreatitis with his CF. I would love any information that any of you have about pancreatitis. I don't feel we have gotten a lot of information about this and we aren't sure he is getting the best care with regards to this.

 

[Printer]

dmsbclayton:

If you tell me what your concerns are I'll try to help. You can also Private Message me if you like.

Bill

 

[Printer]

dmsbclayton:

If you tell me what your concerns are I'll try to help. You can also Private Message me if you like.

Bill

 

[1woodswoman]

I have had problems w/chronic pancreatitis, enzyme deficicency, & Atypical CF. If he has gained weight, he may need a higher dosage of Creon. The doasage is based on a mathamatical formula based on weight, that the CF nutritionalist can calculate, or you can calculate from the info sheet packed w/the Creon. OR he may not be tolerating the Creon any longer, & may have to switch to a different enzyme, like Zenpep, which I had to do after 9 months. To help the cramping, I have an extra large heating pad that I use, which might comfort your son, or a hot water bottle, which I used as a kid. Also keep an eye out for CF-related diabetes(CFRD), which is part of the endocrine system of the pancreas. If the GI-CF specialist isn't available when you have questions, find out who is on call, or find out if her RN could be helpful to you for questions. Hope this helps.

 

[1woodswoman]

I have had problems w/chronic pancreatitis, enzyme deficicency, & Atypical CF. If he has gained weight, he may need a higher dosage of Creon. The doasage is based on a mathamatical formula based on weight, that the CF nutritionalist can calculate, or you can calculate from the info sheet packed w/the Creon. OR he may not be tolerating the Creon any longer, & may have to switch to a different enzyme, like Zenpep, which I had to do after 9 months. To help the cramping, I have an extra large heating pad that I use, which might comfort your son, or a hot water bottle, which I used as a kid. Also keep an eye out for CF-related diabetes(CFRD), which is part of the endocrine system of the pancreas. If the GI-CF specialist isn't available when you have questions, find out who is on call, or find out if her RN could be helpful to you for questions. Hope this helps.