Hi, I haven't been on this board for a long time...our daughter (7w/CF) has this mutation 1898+1G<A, her lungs are fine, she has massive sinus problems and gastro issues/GERD when she deosn't poop she looks lile Santa sometimes....poop is very smelly, mushy, floaters, huge. She has always been underweight, at 5 to 15 percent group. Her sweat tests have been at 28 (CF clinic), one time at 100 at a non-CF clinic. She is going to get the 900 mutation test done...they said if another mutation doesn't show up, then this 1898 mutation could be it,.....they said it was rare.....they said overall she looks good but could be doing better, she is not at her best.She is not on emzymes yet, began inhaler, previcidd, zirtec and atarax for sinus, and nasonex plus daily sinus flushing, on Miralax to help go poop everyday. She has a aide to watch her at school, they do nothing else but watch.Her school district refuses to follow docs orders to document/chart her stools, he needs to how as to make adjustments in her meds.....They said they won't do more then 1 day a week!!!...Anybody have this school problem, what was your remedy w/ the school and anybody have this mutation??? What are your symthoms?? Thanks so much!!!
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1898+1G<G Mutation/School Problem
- Thread starter anonymous
- Start date
HI, just checking to see if ANYONE can offer info on the 1898 mutation and school problems with complying to docs oders??? WE found the sick kids web site on mutations, which was good, but looking for personal information. Thanks, BetJuliet in So. Cal, daughter w/ CF age 7.<img src="i/expressions/rose.gif" border="0">
Get your daughter on enzymes NOW! Sounds like she is having major pancreatic and digestive problems. Her malnutrician must be stopped or she will have some serious problems in the future. Even if her mutation is not clear, have your doc prescribe enzymes for her so she can use the food she eats. Sometimes people w/o CF need enzymes, those w/ pancreatic problems and some CF carriers. She will gain weight, have fewer stomach aches and her overall condition will improve when she has proper nutrician. Have her take tums or other acid neutralizers when she uses enzymes. Stomach acid can deactivate enzymes.Debbie22 yr old w/ CF, CFRD
Thanks Debbie for your help.....She sees the gastro doc on Mar.24....we think he'll put her on enzymes, as the CF doc wanted her to begin but didn't want to step on the gastro docs feet and meds schedule.........Yesterday Alexis had a chest x-ray and oh my gosh....her stomach was so big....the tech was shocked how big it was....she had eaten 2 hrs earlier...she was so bloated, looked like Santa and she weighs 48 pounds...RE: The school, the District Supertindent already said, the nurse will ONLY document her stools one day a week and do it "against her will", he said, "Take it or leave it"...It's very ugly at school, they will NOT let us talk, write or call the teacher, her aide, secy, NO one at school....I thought we lived in the U.S.A.....?? We can ONLY communicate through the principal.....looks like we are going to have to sue (we have contacted an attorney) the district and hopefully, she and brother can go to a private Chrisitna school, close by. It's gonna be a long fight.....we are not giving up or givng in..we love our daughter and will do whatever it takes. Thanks for your support!!!!
Have your attorney contact the CF foundation, maybe your local chapter. It is mandatory that you have access to every adult that your child has contact with during the school day. I can't believe you're have such trouble! I never ran into this kind of stuff when I was growing up, and it hasn't been a problem in college eiterh. Dose the teacher know about her condition? I don't know what you've done so far, but when I was in school, every year (through high school) my teachers were given an information packet my CF clinic gave me. I had meetings with them and my mom to discuss any needs I may have, and all were very receptive. Oh, I'm so mad at the people who are doing this to you!I know it sounds extreme, but contact the press, this is a case if discrimination.Debbie22 yr old w/ CF
Hi Debbie,Thanks for your support!!!! We appreciate you sharing w/ us....I have contacted an attorney and everyone I can think of...I know they are playing hard ball and it hurts us so very much to drop them off at school everyday, I can't bear it!! I feel like I am sending them to the lions den!!!!We want them out of that school, but if I keep them home from school they will call childrens services...I know how they work.....our therapist is very supportive, everyone BUT the school and everyone tied to that place!!Interesting we thought we should go to the media and God sent them to us!! ABC L.A. news came here to our home last Monday to do a story on a mountain lion that came into our yard and killed 2 of 3 goats, it happened last June..well, now we have a TIE-INTO ABC and trust me if we have to go completely public we will!!! I am sure Diane Swayer would love to get ahold of this story!!! Since the school has limited our communication w/ them to ONLY the principal we have sent a limited release to them so they can't talk to anyone outside the school, they can ONLY talk to anyone ONLY if I am present or on a 3 way phone call....WE are doing a 3 way phone call w/ her gastro doc next Tuesday....he is mad they wouldn't follow his direction...I will have to keep you posted....Today I take Alexis to the hospital to get a sinus cat scan......she'll be missing school part of the day and I hope they don't hold that against her or let her drown in work when she comes back, they will not help her academically, she's below grade level, but they said she still fits in the range of second grade...PLEASE...she nees help academically and emotionally as she knows she is below....well, have to go...Take care and again Thanks for your support..BetJuliet in So. Calif....
Do you have her on a 504 plan? This is a contract with the school for children with special health needs. The school MUST let you have one or they are in violation of federal laws. You and your doctor can put ANYTHING special that your daughter might need. If they refuse, talk to your local doc, the school board, and the school district superintendent. Do not take no for an answere. My daughter has a 504 and it works great. We can update it everyday if we need to. Also, there is no law against homeschooling! If your afraid of being turned in, just be sure to get a curriculum before you keep her home, document with your doctor the reasons for homeschooling and then do what you know is best. Hope this helps. Michelle
I copied this from another list. You should contact Beth and see what she has to say."The Seattle CF center just had its annual CF education day and Chiron (TOBI company) paid for Beth Sufian from Houston, Texas to come speak on what the law can do to protect people with CF of all ages. Ms. Sufian is a lawyer, 38 years old, and has CF herself. She is on retainer by Chiron to offer legal advice to pwcf. The number to call for advice is 1-800-622-0385. It was an excellent talk, expecially regarding ways for US residents to obtain and retain medical insurance. School issues were also discussed. I recommend everyone who has not heard her speak ask their centers to invite her to speak at their next education day. "Here is Beth's email if you want to email her: bethsufian@aol.comI wish you luck. Hearing this just makes me so angry and I want to come down there and fight too!!!Tammy 43wcf