I just need to see if anyone has had this experience with their liitle one...I have a 5 year old daughter; she was born at 36 weeks and sounded like she was congested when she was born. The doctors released her after 24 hrs but I wanted to stay in the hospital (I have 2 other children and didn't like the way she was eating) The nurses noted thick white seceation on day 2 and then her blood sugar dropped to a very low level. Then on day 3 the "thought" she had a seizure and we spent the next 2 weeks in the hospital. After 6 weeks of crying she was dehydrated and put in the hospital and switched to Alamemtium formula. For the last 5 years we have: spent weeks each year in the hospital for the congestion, coughing up thick white to green mucos, high fevers, reflux, weigh loss, rare bacteria infections...the list goes on. She has had a fundo to correct the reflux (if she has milk products she will still throw up) a feeding tube placed to make sure that she gets all her nutriution.(The mucos gets so thick that she can not eat) Every test we can think of. Everything has come back neg. Her pulmologist thinks that it is some form of CF, but he has been unable to find anything. This summer we started her on GSH and for the first time she was able to breath without the junk, then 2 weeks after school started a little girl in her class had a green nose and here we are. She has been on 5 different antibiotics and she is still coughing up white to yellow junk. She sound like she is breathing under water. This last time she grew out H influenza bacteria. Sorry this is a long post, but I just want to know if anyone has had anyting similar. I looking for a needle in a haystack.
Wow, your daughter has been through some difficult times. When was the last time she had a sweat test done? Alot of times if the test is done when they are an infant it will come up neg or border line. Infants can't produce the sweat needed to do a proper testing. My daughter was sweat tested at about 6 wks then again at about 5 months and still it was border line. Although, they were 99% sure she had CF because her older sister, who had just been diagnosed the week before she (the younger) was born and they had matched her cord blood with the older ones. Anyway... Rachel, my youngest, never had another sweat test done until she was 11 yrs. Somehow no one ever thought to do it again. We're military and have been to several different CF clinics and I guess it just slipped past.
There is also a blood test that can be done to look for the CF mutations. Maybe you could/should ask about that. I have heard that the only lab that does the full line of mutations is in California, that the others only look for the common ones, or just a few. So be sure to ask that she be checked for the whole line of mutations not just the common ones. It's a thought.
I surely hope that they can find something to pinpoint what is going on with your daughter. I will be thinking of you and your daughter.
May I ask, just out of curiosity, where you take her? I am from Texas and was just wondering. My family is from Austin, but others are spread out from San Antonio, to Houston, to Ft.Worth. We have been to both the CF centers in Dallas and Ft.Worth.
Thanks for your reply. We live about 75 miles away from Dallas. All of Carli's Dr are in Dallas at Childrens Medical Center. She first went to Southwest Medical School to an ENT for an airway obstruction when she was 9 mo old. That corrected everything went well until we started cereals and fruits - again she got sick. That was when he got us in to the GI clinic. They did an enzyme test at 13 mo and found her to pancreatic insuf. At this point he was sure that she had CF. She had had a sweat test she she was a few mo old and he redid it at @14 mo and again it was neg. At 2 1/2 she was in CMC to have tonsils and adniods removed and they found that sudamonus and strep neumo had colonized and was causing lots of problems. That was when the Pulmo. dicided to do the blood workup for CF. Again it was neg. He has said that he feels that it is some sort of mutation that they cann't id. After 18 mo on enzyme replacements her levels were normal and that thew everyone off again. She continues to have the breathing problems like CF. I did not know that all the labs do not test for all the mutations. I need to call her Pulmo and see if he can get her in and have the blood redone (maybe).
Have you ever heard of GSH supplements for CF. A friend of mine saw the article in a magizine and Carli's Dr. OKed it. After a few weeks she was doing GREAT..She went 3 mo without antibiotics (the longest before has been 4weeks) then school and sick kids. But she still seems better on it than off. Just wondering...
quiksliver--Thanks for your reply. We have seen an immuologist and he has said that her immune system was working, but at the same time she continues to grow out strange bacteria.It has been 3 years since she has been tested for CF. We have done the sweat and DNA and both have been neg. I am going toa ask about the labs in Cal. to see if her Dr. know about the complete mutation testing.
Hi again, It's been so long since I've been home, I thought Bridgport was near Houston. Well, I've been home, just not lived there for about 17 yrs. Anyhow...
I have heard of GSH. I saw the newsclip on the Today Show a while back and shortly after asked my daughters' CF clinic about it and the CFFoundation had just put out a bullitin that they pretty much did not endorse it as a treatment for CF yet as there were not enough completed studies on it yet. They are looking into it, studying it. Safety was a main issue, the exact amount etc. If you are curious what they had to say about it, it is posted on the CFF.org website.
It does however look to be very promising and I have heard good things about it from people who have tried it. CF people, both here and on another board. How wonderful that you got the go ahead from your doctor to try it out though. Ours here at the CF clinic at UNMC didn't really say anything about it, the nurse just gave us the statement from the CFFoundation.
My daughters went to the Dallas Children's Hospital for 6 months when my husband was deployed to Desert Storm/Shield. That was the last place my youngest had her sweat test done before having re-done 10 years later. They later went to Cook Childrens when my husband went to PA school. It was closer to my parents house.
How old is Carli? oops, I see she's 5 yrs old. How is she taking the GSH? By nebulizer? HOw long has it been that she's been on it?
I too, like the other post mentioned, thought that pseudomonus was a tell tell sign of CF. Hmm. She sure sounds like she has CF. Are they treating her like she has CF though? I mean with nebulizer treatments, antibiotic treatments etc? How is she doing right now?
[This message has been edited by chacha (edited 10-21-2003).]
hi-Carli has been on GSH since the end of May. She is on 28cc orally 4 time a day and I have just upped her to 300mg thru neb 2 times a day. That is all that she is on right now. The past month she has been on several different antibiotics for the infection-none seemed to have made any change and also a mild steriod thru neb. All any of these seemed to do was irriate her more. She is "spitting" and coughing as much or more than she ever has. Also her breathing is noisy and she is sweating at times from working (?). The cloths also have an 'odor' if I leave them out. I have xyopenex to use as needed but I cann't hear her wheezing. Would you as a mother call the Pulmo and check on retesting for CF or wait for her to go the hospital and have them do everything then. Unless something changes she will get so tired from all the work breathing that she will start to run a fever that I cann't control. Also has anyone had them do a spinal tap to check for other metabolic disorders?
This is just a thing I know about.
I was in a medical study awhile back to measure the bodies electriacal curent in the nose. Appearently people with CF have a didfferant current than others. The doctor I did this with said that if it worked it would be used to look at borderline patiants whos sweat tests came back negative. I don't know what has happend to this since then but you might want to ask and see.
It's been a long time. Carli had a hard time for a while. At last post, we were trying to figure out what all the extra congestion was---reflux again. She has had a fundo wrap and it is still in place but milk is coming back up if she is layed down to eat which was happening at school. That got better then she had a case of pneomonia beginning in Feb. We battled it for 3 mo. and today got the all clear with her lungs. She is still coughing up junk and the Pulmo saw it today. He said that it looked like it was coming from her lungs-I had just told him that every morning when I start the GSH treatments that she begins coughing up junk. He had talked about getting her a shaker vest before and today said that he was ordering her one. I hope that it helps. He also agreed to retest for CF in about a year. He has assured me that she is on a treatment course for CF even though she doesn't have the diagnosis. Does anyone else have a child with CF and developmental delays? Carli is trying to crawl and she walks with a gait trainer but she gets tired. I forgot to ask about the nasal testing. I'll make better notes for our next visit.
Hello, my sons, age 12 and 4 have been diagnosed just this last month of CF. Everything I have read from you says CF. I am curious, what were the sweat test results exactly? I am from Tulsa Ok. Just recently, St. Francis Hospital's Lab call everything over 40 a positive.
The sweat test was done 4 years ago. I don't think we were ever told an exact number, and at that time I wasn't asking questions like I do now. Now I get copies of all the results that I can. I need to call Childrens and see what they can tell me. I'll get back to you as soon as I know.
Just a quick update and to see if everyone else has had the same results---It has been a very busy few weeks and now we have a airway clearance vest for Carli. She uses the vest twice a day for 20 min each time. She is coughing up a lot more junk (mostly within a couple of hours after she uses it in the morning). She also seems to have more energy and is talking more. Is this the usual results? Her Dr. got her into a study for children with CF symptoms without the diag. He will test again within the year. Yea!! Now if we can get her to eat some by mouth since the junk is down. We go Thur for help with that issue.
My youngest daughter (now almost 7) was born with a volvulus. Since it looked like CF, we had all the tests. She and her older sister came back as carriers and sweats were borderline. The docs let it rest. Her older sister kept getting really sick and finally as doctor went back to the CF question. This time we had the AMBRY GENETICS testing and both were positive for CF. They were 13 and 6 at diagnosis. The CF doctor taking the family history said that he thought I had a mild case as well. I was started on enzymes and sent to the adult clinic. My testing has since come back and the results are strange. I am not "diagnosed" but am treated and followed anyway because I have the symptoms. (See the recent post about M470V's and 5T/7T. Apparently, I am not alone with my strange genetics.) That is what is important. I just wish we had not lost the 6 years of treatments for my girls because they didn't test positive. I feel like they would be healthier today had we been more aggressive and not let the issue drop. Hind sight, you know? Anyway, as long as your daughter is getting the appropriate treatment, the diagnosis isn't as important. Good luck and God Bless. Catherine