What an awesome visit! Has to be the shortest clinic visit so far! Philip weighed in at 30.6 pounds and he gained about half an inch. He is getting tall! Things dicussed: Zantac- we have cut the dose in half. I had concerns about stopping due to the fact that I read it can actually help with enzymes in cfers. Dr Schmidt explained to me that the benefit really only exists in patients that take >3,000u/kg of lipase, which Philip does not. He said I could taper the dose further or even cut it out completely if Philip does ok. This is HUGE since Philip was maxed out on Zantac this time last year. Salt lamps- they are safe and do not emit ozone. We will keep using them to purify the air in our house. Probiotics- he seemed very happy with our luck we have had since adding the 2nd probiotic. He does think the child's dose is plenty since Philip is borderline pancreatic sufficient. Cod Liver Oil + D- He agrees this is a good addition and we will check Philip's vitamin levels at his next visit (yearly) Enzymes- We are almost done with the Ultrase we had and the transition to Zenpep is going great! The thing we are most excited about is the fact that PHILIP HAS NOT HAD A SINGLE RESPIRATORY SYMPTOM SINCE STARTING HYPERTONIC SALINE.....as Dr Schmidt says, "He has his own personal salt room". All in all a very good visit! They did not even do a throat culture this time. His last 2 have been clean! Philip also began a CF tfood study last week that so far is going well. More details on that as it finishes.
May 25, 2011
I took Philip in today because he still sounds rattly and has a random cough. Dr Schmidt did a chest radiograph. All looks well. His weight was down 2/10 of a pound, but he is also a cm taller. They are not at all concerned with his weight. He thinks the problems may be reflux again, so we are bumping the Zantac back up to 2ml twice daily. Philip showed off his knowledge of colors (through M&Ms) and his letters. Gail made the comment that he is the only baby in clinic that never went through melt down stage when he saw the clinic. Jim also said he may be one of the three year old blowers (meaning he may be able to handle PFTs at three years old). Dr Schmidt gave him a pinwheel to take home and practice. They also did a throat culture that we should get back next week. All in all a pretty good visit. Now if we can just kick this cough!
June 23, 2011- 2 Year appt
This clinic visit was a pretty good one. Philip's weight was up just a little bit at 31i.24 (in spite of him never eating). His weight is 87th percentile and his height is 76th percentile. The dietitian actually told us he is considered overweight. She said looking at him, he's not a "fat kid" though. She thinks he has a lot of muscle mass. You can actually see ribs when his shirt is off. The good part about this is that she told us he is at NO CF nutritional risk at all and because he has never been in his first two years of life, we have statistically ensured normal lung function up to age 6! We have been working hard to achieve that! This doesn't mean a lung bug cannot come and mess it up, but we have done what we can do to help. We also asked Dr Schmidt about the EFlow Trio Nebulizer, but he says even though people use it, it's not FDA approved for CF drugs, so we will wait. The nurse did a throat culture so we could see if he still cultures anything. Last, we went to the Children's Hospital for blood draws. Philip had EMLA cream, and what a champ he was! He watched her stick the needle in and draw 6 vials of blood and never even flinched!!! The CF center nurses saw him pointing out the alphabet and they gave him a really neat learning box of flash cards for his birthday. UPDATE- 6/27/10- Dr Schmidt called today with his lab results. NORMAL respiratory flora. No h. parainfluenza or staph. IgE and IGg levels normal, so no allergies, no inflammation. WBC count low-normal, so no infection. Vitamin levels great! Liver and kidney values also perfect :-)
October 19, 2011
Today we went in because I was concerned about a couple of things. Philip almost never coughs. At night, before bed I ask him to cough. The last week or so, his cough has sounded wet. I also have been worried because he doesn't eat much, and I can see and feel his ribs and shoulder blades. At clinic, he weighed 31.24# (76.9th %tile) and his height was 92.5cm (73.5th %tile). Dr Schmidt did a throat culture. He also decided to try Philip on the 10,000 lipase enzymes rather than the 5,000 he has been on. He said since he is getting older and has been on a low dose for so long, we should try an increase. Hopefully we will not see any problems. The last time we increased enzymes, he got a partial blockage. The nutritionist said he is 101.43% of the ideal body weight and is technically right where he should be. It bothers me when he drops in the %tile like he did this time. She okayed the use of Scandishake to supplement when he does not eat. He should be eating 1714-2142 calories a day! So, he lost 0.3 kg, but he also gained 2 cm in length.