CFRD, and CF update.

Cystic Fibrosis Related Diabetes.  Last week I registered to watch a webcast on CFRD.  I knew this was something I have been worried about with my two youngest kids, and wanted to educate myself on the issue.  I am so glad I watched it.  It was very informative. I was disappointed however, to learn that there is no way to prevent CFRD. It is very different from Type 1 and Type 2 diabetes.  I found myself crying a little over knowing there is nothing I can do to prevent it from happening.   The two Dr.s on the webcast did encourage people with CF not to be afraid of diagnoses.  That it is manageable and early detection and treatment are very important to a person's CFRD overall health.  I am hoping to find a book on CFRD to keep on hand.  There was so much information in the webcast that there is noway I can remember it all.  I  can't wait until I go back to see our CF Dr. next month I am going to have more questions for him.  I need to keep a journal of my questions for the Dr., because by the time I get into our appointment I forget to ask a lot of them.

  Also an update for those of you that Follow my blog or even care about what is going on with us.  on the CF side it appears that Felicity has started to develop some unexpected  Gastro. symptoms of CF.  Why unexpected, well the type of Cf my kids have is supposed to have sufficient Pancreatic function.  You can read more about our Diagnosis HERE on my CF page.  Any way, last month Felicity had been having some constipation problems. Not a big deal for most, but turned into a huge deal for her.  At her monthly CF appointment I explained to the Dietitian, Student Dr. and then our Reg. Dr. what was going on with her. To which Dr. Sindel replied. I think we need to hospitalize her.  I was in shock and said REALLY?! But her lack of weight gain and growth on top of the constipation was a big red flag to Dr. Sindel.  So I left his office took my other two kids and my nephew home, regrouped, and then head to the woman's and Children's hospital for the night.  They checked us in and then did and abdominal x-ray on Felicity.  It showed that she had a blockage high up in her bowel and that her bowl was already distended from it.  A lot of people who know about this issue have asked well couldn't you have just given her a suppository or an enema? No, in her case those would not have worked.  To resolve the problem the put a NG Tub down her nose and started her on a flush that they ran through her for 13 hours. and then monitored her BM until she was having nothing but the Flush coming out in her diaper.  We were at the hospital for only 24 hours, a very short stay. I am so glad that I had an appointment with Dr. Sindel that day, Felicity could have ended up very sick if it had gone on any longer.  And just to clarify, Yes I did speak to my pediatrician about the constipation twice the week before going to see Dr. Sindel.  But they were not seeing the red flags Dr. Sindel saw. and in Dr. Sindels word's as to why the pediatrician was not alarmed, " The eye doesn't see what the mind Doesn't know." Most Ped. do not deal with CF patients on a regular basis and it is something that is somewhat unfamiliar to them.  Now to help keep the constipation at bay Felicity takes a daily dose of Miralax every morning.
  Yesterday was our monthly Check up with Dr. Sindel. It has been one month since Felicity's constipation issue. And though she has a great appetite and eats lots of homemade baby food, on top of nursing 6 to 8 times in a 24 hours period. She is still dropping on the weight percentage curve.  She is completely of the curve now. She did gain some weight. she is 14lbs at 7 1/2 months. But she also is dropping on the Height Curve. She is still growing a little, but very little.  It could just be her, but with the rate at which she is dropping, Dr. Sindel started her on some pancreatic enzymes to see if we see any change in her weight gain and growth. It is better to catch the mal- absorption issue before Felicity stops growing in height altogether, if it gets to that point then that growth with be lost forever, and she will be stunted.  So far we are not to that point, and there is a possibility that she doesn't need the enzymes, it could just be a growth slump that she is in and may come out of on her own! I am hoping she will not need them.  Dr. Sindel said we will try the enzymes for a month or two and then maybe take her of them and just monitor the changes if any.   So that is where we are with CF.  Vincent still remains Healthy as a horse!  He will go in for a 4 month check up next month with Felicity.  Hopefully all will be well with both of them then!    Her is a little picture of Felicity from the hospital.

Just getting settled.

 Tube in, I watched then do the tube, they said most mom's can't handle it. I know that the screaming and fighting where more over not wanting to be held down than it was over pain, cause this is pretty much a pain free procedure, just an annoying. Once they gave her back to me she instantly stopped crying and fell asleep pretty soon there after.

 I wish I had a pic of when they first took the tape off. I think that was the worst part of the whole experience. it even made me cringe.  But her face was so so red, this pic was taken about and hour and half , maybe more, after the fact.  It was more purple looking in real life, but it cleared up completely by the next morning.

Well Hopefully next month we will have some good news on the weight and growth side of things.  Oh also, the dietitian suggested that I add a little butter or oil to her baby food for added calories, so we will see how things go!  Until then!

Becky K!