So..I called Texas Children's to get Abby's sweat test numbers mailed to me so I would have something to compare to and was HUGELY disappointed in what they told me!!! August of 2007 at Seaton Hospital they measured her sweat and got an 89. Then in Dec of 2007 TX Childrens did another sweat test on both arms. Their results was 109 on one arm and 98 on the other?? Now the most recent one... June 27, 2012 all they are able to tell me is that it is greater than 100 on both arms. Why on earth would they not be able to get exact numbers 4 years later? I am greatly disappointed and shocked!! How on earth am I suppose to know how much her sweat chloride has dropped if they can not tell me her exact numbers? Has anyone else had this problem?
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Abby Sweat Tests
- Thread starter JENNYC
- Start date
Jenny, I am sorry you are disappointed I know you were expecting a better answer. You are a good mother. My daughter to goes to Texas Childrens. Who is your CF doctor? Ours is Fadel Ruiz. We have been pleased with him, he is very aggressive in his treatments. We started off at Tulane, and it really is a big difference in their knowledge and treatments.
Aboveallislove
Super Moderator
Jenny--I am so sorry--that is so frustrating. Have you tried talking to the clinic director (or the lab director) to see if they have more detailed records that just aren't "recorded" in her file? That seems so strange to me--I could see them marking something like >100, but cannot imagine they wouldn't record it. But on the other hand, I've got a feeling Abby's going to be so much below 100 you'll be in great shape for continuing!!!
Aboveallislove
Super Moderator
Jenny--I am so sorry--that is so frustrating. Have you tried talking to the clinic director (or the lab director) to see if they have more detailed records that just aren't "recorded" in her file? That seems so strange to me--I could see them marking something like >100, but cannot imagine they wouldn't record it. But on the other hand, I've got a feeling Abby's going to be so much below 100 you'll be in great shape for continuing!!!
Hi Crystal!! We see Dr. Chris Oermann. It's nice to have someone in our area <img src="i/expressions/face-icon-small-smile.gif" border="0"> I love Texas Children's but just am in shock that they have actually back tracked in technology and am not understanding why they would want to do that. It seems like I remember seeing Dr Ruiz in the hospital once. We love Dr Oermann, he is a giant teddy bear!! He is very good with Abby!! I wish he was more excited about Abby trying Kalydeco though. I had to push him into letting her try it and he hasn't even called to check to see how she is doing on it, which is a little disappointing, but I guess maybe he might be upset with me for pushing him so hard to let Abby try it. I also had to push pretty hard to get him to get her second mutation tested which was also a little disappointing, because we absolutely love how he has dealt with every other aspect. Abby trusts him which is huge, and he shoots straight with us. He has been Johnny on the spot every time we have had an issue with her and she's had lots! She usually is hospitalized twice a year for various things, and she likes to get optical cellulitous, and lots of sinus polyps!! It's been a while but she had 15 surgeries in about 2.5 year period. He was very good at tending to her every time I called with any concern. Anyways now that I told you our life history LOL.
How is your daughter doing? Abby cultured psuedomonus when she was 2 and 1 round of Tobi took care of it. I hope she is doing better. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If ever you need to talk please let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0">
How is your daughter doing? Abby cultured psuedomonus when she was 2 and 1 round of Tobi took care of it. I hope she is doing better. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If ever you need to talk please let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes I did talk with the Coordinator she is the one who told me that. I first asked the nurse and when she told me that's all she could find I went straight to the top. I couldn't believe it myself!!! Why would they want to go backwards in technology? I am still baffled. And I pray you are right, I pray so hard that it will have dropped by so much that it won't matter. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Aboveallislove
Super Moderator
I'll add that to our prayers tonight with ds. Hugs!
PS (I figured you had already done that, but figured it didn't hurt to ask!).
PS (I figured you had already done that, but figured it didn't hurt to ask!).
Jenny, my daughter is doing good. She has developed a nasty cough since being on tobi. I'm hoping it's just breaking things up, I don't know. I hope that it takes care of the pseudomonas, we are doing everything we can. How do you mom's try to avoid pseudomonas? She loves swimming, but we live in an apartment and the only place to take her is a public pool. I would love to hear others thoughts on this. Hannah always sounds like a pig when she sniffs. Doctor's have never said anything about polyps, I may have them start looking better for them. For the longest time I put all confidence in her doctor's, but am now realizing that I was way undereducated about CF. So I am taking the opportunity now. Jenny, does Abby go to school? How does that work for her? Hannah is 4, and would be starting pre-k, but I am hesitant to put her in school.
Yes Abby does go to school. I was very nervous to start her in school as well, but I wanted her to be as normal as possible and make as many friends as possible. She is a social butterfly. And she has been swimming all summer long, I swear she is part fish <img src="i/expressions/face-icon-small-smile.gif" border="0"> I worried about how she got pseudomonas(PA) for a long time and I still do. I do not allow her in any damp place such as Rainforest Cafe or Moody Gardens, places where I know bacteria could grow easily. I also air dry all of our dishes and her inhalers. I have no idea if any of these things help or not, but it gives me peace of mind. I have been told repeatedly that PA is everywhere and that it is impossible for me to protect her from it. We have been very lucky in that she has only had it that one time when she was 2. I try not to limit her from doing too many things, because I want her to feel as normal as possible. With that being said she also knows what will potentially be harmful to her. She knows that she can't be around smoke of any kind, she knows to politely shy away from people who are coughing or sick, and she also knows that if she does not stay on top of her medicines that it could make her sick as well. She is a very happy, enthusiastic little girl. She is a blessing. She doesn't let CF keep her down at all. She use to get frustrated about doing her treatments but since she's gotten a little older and understands a little more about what can make her sick she is ok with it all. She is one of those kids that if you don't see a smile on her face you better find out what is going on because more than likely it's serious!! LOL
I'm glad your daughter is doing good. I hate to hear of her nasty cough. It always makes me feel so powerless. It's been so long since Abby had it I can't tell you whether that is normal or not. <img src="i/expressions/face-icon-small-sad.gif" border="0"> As far as polyps goes, we didn't know she had polyps until the antibiotics weren't fixing the problem. She was so stopped up and snored a lot. About day 3 after antibiotics she'd go right back to running fevers, so they did a sinus CT and sure enough she was completely closed off with polyps. Abby was a severe case, I haven't heard of many others saying that their sinus' were as bad as Abby's, but for a while we had to have the polyps removed every 3 months, the ENT told us that usually people with CF have to have sinus surgery every 3 years. I guess we just got lucky. I finally had enough and tried to figure out what was triggering her sinus' being so bad. We lived in a new double wide in the country, the kids closets always seemed damp, and tons of dust everywhere, so I decided it was time to build and buy a HEPA filter. We purchased the HEPA filter and since then she has had no polyps until we moved in with my mom and dad while we were building and she had to have one more surgery then. Anyhow you'll probably know when or if she does have polyp problems, not everyone does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm glad your daughter is doing good. I hate to hear of her nasty cough. It always makes me feel so powerless. It's been so long since Abby had it I can't tell you whether that is normal or not. <img src="i/expressions/face-icon-small-sad.gif" border="0"> As far as polyps goes, we didn't know she had polyps until the antibiotics weren't fixing the problem. She was so stopped up and snored a lot. About day 3 after antibiotics she'd go right back to running fevers, so they did a sinus CT and sure enough she was completely closed off with polyps. Abby was a severe case, I haven't heard of many others saying that their sinus' were as bad as Abby's, but for a while we had to have the polyps removed every 3 months, the ENT told us that usually people with CF have to have sinus surgery every 3 years. I guess we just got lucky. I finally had enough and tried to figure out what was triggering her sinus' being so bad. We lived in a new double wide in the country, the kids closets always seemed damp, and tons of dust everywhere, so I decided it was time to build and buy a HEPA filter. We purchased the HEPA filter and since then she has had no polyps until we moved in with my mom and dad while we were building and she had to have one more surgery then. Anyhow you'll probably know when or if she does have polyp problems, not everyone does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
LittleLab4CF
Super Moderator
You are kidding? If you ever wondered why body temperature is exactly 98.6 degrees, well it is an average of a significant number of people, all averaged at mid morning body temps. I am 97.3 degrees. How hot was the day, did you spend a lot of a time in air conditioning, what time were the tests, what time of year, how did she feel, how stressed were you, how about her, when did she eat, what did she eat, was she identically hydrated, were her electrolyte levels the same, had she taken a shower or a dip in the pool, were the results sqewed by different test mothodologies? There could be a few variables.