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Aboveallislove
Super Moderator
Are you sure it's not Arkansas University Hospital Children's Clinic? Arkansas' Children Hospital is different a center and from my family in the medical profession, I have heard NOTHING even slightly negative concerning its Ped. Pulmonary staff. I'd hate you to have posted the wrong name by mistake because you never know if it gets back to the clinics and they think they need to do something legally tp protect their name. Can you confirm which one it is again?
IMO, instead of trekking halfway across the country to a clinic that doesn't even have a CF program, I would go thru your local clinic -- anyone can order genetic tests for CF, anyone can order CF cultures and anyone can prescribe meds for the symptoms. Rochester (Mayo) is an expensive town in terms of lodging. Maybe if you work locally with a pediatrician or pulmonologist they can get you a referral at a nearby CF clinic.
B
bluewriter
Guest
Thank you. I just talked to Mayo Clinic. Appt days away. Already told my daughter, cancelled appts, packed...they said they talked to her PCP here and the PCP won't give a referral so her state insurance can't be transferred and since they know we're poor they won't let her have an appt. When were they going to tell us I asked??? They said your PCP was supposed to tell you. Yah right. She doesn't do anything. I said I'm trying to get around the PCP she's not treating my sick daughter. They said a lot of people try to do that with us but being that you have state insurance-you can't. I'm so depressed. How am I supposed to tell my daughter...live with the fact that since we're poor she doesn't get to get medical treatment. I feel like a failure.
Aboveallislove
Super Moderator
Of goodness, I though the appointment wasn't until next week and you were all packed and ready to go. That must be so upsetting.
Please do confirm though the hospital you are getting treatment (see above) b/c I think you have the name wrong and I want to get ahold of family in medical profession with contacts so that the Arkansas Children's Hospital (if that's the right name?) can know of the problem with their staff. Unfortunately, I don't have any contacts at Arkansas University Children's Clinic, though, so if you made a mistake and it is that center let me know b/c I'd hate to get the folks at Arkansas Children's Hospital looking at this if it was a typo. Thanks!
Please do confirm though the hospital you are getting treatment (see above) b/c I think you have the name wrong and I want to get ahold of family in medical profession with contacts so that the Arkansas Children's Hospital (if that's the right name?) can know of the problem with their staff. Unfortunately, I don't have any contacts at Arkansas University Children's Clinic, though, so if you made a mistake and it is that center let me know b/c I'd hate to get the folks at Arkansas Children's Hospital looking at this if it was a typo. Thanks!
B
bluewriter
Guest
We've been and are still scheduled to go to Arkansas Childrens Hospital in Little Rock. I have the records. We saw a year ago Dr. Bauer in pulmonology. A month ago, we saw Dr. Schellhase. Dr. Schellhase says he's ruled out CF through mutuation analysis 46 mutations that was negative but didn't do sequencing and she had a positive sweat test. Johns Hopkins and I disagree. Dr. Schellhase refuses to correct incorrect information on her chart. Dr. Schellhase wants to evaulate her for Interstitial Lung Disease. Dr. Schellhase's staff was cruel to both of us. Dr. Bauer, a year ago, put down that he thought she had habit cough and nothing else wrong. I wasn't done packing but yes, I had started. I am a meticulous packer and we were excited to go and get answers. I talked to childrens in Houston after I got the news and they said they still believe she needs another sweat test and needs to be referred to National Jewish in Denver and they plan on telling my daughter's PCP that in a letter tomorrow. I don't know if I should continue care at Arkansas Childrens in the meantime. In two weeks they want to do more blood work and a CT scan with contrast on her even though they didn't see anything in the first CT and contrast can be dangerous and two CT scans in 6 months can be dangerous to a child who they already said is possibly immunodeficient from her labwork. I don't want her getting sicker from the tests they run. I don't know what to do. I love her so much and I'm smart but I'm not a doctor and I don't know which road to take.
Diagnosis of CF
Ok if her sweat test was 60 its positive for CF. The doctor from Arkansas Childrens Pulmonology Dept. should be willing to send her blood off the Ambry Genetics in Ca. for a complete gene sequencing. They conduct the most comprehensive DNA analysis for CF in the world right now. I don't quite understand how you talk about your 8 year old daughter being so sick and not getting any treatment? If she's 8 and she has been so sick--without treatment for infections---How is she still here? Or, did I misunderstand--has she been treated with antibiotics when she has an infection? I have been to National Jewish and they do treat many,many children there. They treat children with CF, asthma etc. If you Google Angel Flight you can get info about free flights for medical care/diagnosis. Its private pilots with small planes that donate their time and planes to get people to medical care in different parts of America.
Your daughter could also have some type of priamry immune deficency disease. (PIDD) you can look up the Immune Deficency Foundation and check out their web site for more info.
SMMC, adult w/CF , mom of a 15 year old son w/CF
Ok if her sweat test was 60 its positive for CF. The doctor from Arkansas Childrens Pulmonology Dept. should be willing to send her blood off the Ambry Genetics in Ca. for a complete gene sequencing. They conduct the most comprehensive DNA analysis for CF in the world right now. I don't quite understand how you talk about your 8 year old daughter being so sick and not getting any treatment? If she's 8 and she has been so sick--without treatment for infections---How is she still here? Or, did I misunderstand--has she been treated with antibiotics when she has an infection? I have been to National Jewish and they do treat many,many children there. They treat children with CF, asthma etc. If you Google Angel Flight you can get info about free flights for medical care/diagnosis. Its private pilots with small planes that donate their time and planes to get people to medical care in different parts of America.
Your daughter could also have some type of priamry immune deficency disease. (PIDD) you can look up the Immune Deficency Foundation and check out their web site for more info.
SMMC, adult w/CF , mom of a 15 year old son w/CF
We've been and are still scheduled to go to Arkansas Childrens Hospital in Little Rock. I have the records. We saw a year ago Dr. Bauer in pulmonology. A month ago, we saw Dr. Schellhase. Dr. Schellhase says he's ruled out CF through mutuation analysis 46 mutations that was negative but didn't do sequencing and she had a positive sweat test. Johns Hopkins and I disagree. Dr. Schellhase refuses to correct incorrect information on her chart. Dr. Schellhase wants to evaulate her for Interstitial Lung Disease. Dr. Schellhase's staff was cruel to both of us. Dr. Bauer, a year ago, put down that he thought she had habit cough and nothing else wrong. I wasn't done packing but yes, I had started. I am a meticulous packer and we were excited to go and get answers. I talked to childrens in Houston after I got the news and they said they still believe she needs another sweat test and needs to be referred to National Jewish in Denver and they plan on telling my daughter's PCP that in a letter tomorrow. I don't know if I should continue care at Arkansas Childrens in the meantime. In two weeks they want to do more blood work and a CT scan with contrast on her even though they didn't see anything in the first CT and contrast can be dangerous and two CT scans in 6 months can be dangerous to a child who they already said is possibly immunodeficient from her labwork. I don't want her getting sicker from the tests they run. I don't know what to do. I love her so much and I'm smart but I'm not a doctor and I don't know which road to take.
B
bluewriter
Guest
In the past, they treated her with steroids, both nebulizer and oral, with antibiotics whenever she had a flare up. The last two flare ups, they did not treat at all. I don't know why. Believe me! I don't know why. I have been told my every place I've called including National Jewish and it also says on their web site, that they do not accept out of state medicaid and if you have medicaid in your state you will be turned down for financial assistance. I know about the angel flight system. They are wonderful. I haven't used them but I know about them. I agree 60 is positive. Arkansas Childrens does not agree. I can show you her record where they say it's borderline. They won't send off her blood. It was so so so so so hard to get her blood with her needle phobia and then they didn't do the sequencing on it. It's such a waste. She doesn't have the failure to thrive symptom. She has a lot of diarrhea with a lot of mucus and once twice there was blood too and frequent stomach aches but she loves to eat and has always had a high calorie diet. With that balance, she's a perfect weight. That's why they didn't even consider CF at first. I already tried talking to Arkansas Childrens again. They said "the doctor does not correct anything he puts in the record. Once the record goes in the computer, it is sealed permanently." That's ridiculous. That goes against HIPAA and common sense. I asked them if she could have common variable immunodeficiency because all her numbers-IgA, IgM, IgE, etc are all off. They said "the doctor believes this is due to environmental allergies"-again in her chart. When they took her blood, they made me and four people hold her down while she screamed and cried and was retraumatized despite me saying she can't be held down-it triggers her-she dissociates. She had trouble breathing for ten minutes after they let her go. My hip got permanently damaged my doctor said. They called in the respiratory therapist cause she couldn't breath. It was horrible. I can't forget it. I hate that they had me participate in it. We begged them to give her a sedative or call psych or anything. They just stood there. Then they put on her chart "she handles medical procedures well with no problems."
I'm tired of fighting. I guess we can't get out of state. We got a prescription for sedatives from her psychiatrist so that last thing shouldn't hopefully happen again. I guess I'll have to let them do the CT even though I think it will be needless radiation on her. I wish they'd do another sweat test while they are at it. But they won't listen and because we have no money it doesn't look like we can make them. I'm sick. I wish i could work. I tried to work. I hate being disabled. But they kept firing me. Kept saying "we can see how sick you are and how much pain you're in, please go to the doctor". I told them I've been to doctors and I want to work. Now because I can't work, my baby can't get better care. If anyone knows of another option, somewhere we can go and get financial assistance or afford it to go so they'll take us, I'm still listening. Thank you all for caring. I'm sorry. It's so hard to watch her suffer when it seems so simple for it not to be that way.
I'm tired of fighting. I guess we can't get out of state. We got a prescription for sedatives from her psychiatrist so that last thing shouldn't hopefully happen again. I guess I'll have to let them do the CT even though I think it will be needless radiation on her. I wish they'd do another sweat test while they are at it. But they won't listen and because we have no money it doesn't look like we can make them. I'm sick. I wish i could work. I tried to work. I hate being disabled. But they kept firing me. Kept saying "we can see how sick you are and how much pain you're in, please go to the doctor". I told them I've been to doctors and I want to work. Now because I can't work, my baby can't get better care. If anyone knows of another option, somewhere we can go and get financial assistance or afford it to go so they'll take us, I'm still listening. Thank you all for caring. I'm sorry. It's so hard to watch her suffer when it seems so simple for it not to be that way.
ajlindsley
New member
Have you tried another PCP? Maybe they will be more willing to listen to you. Also, I can't figure out why Children's in Houston keeps telling you to go to Nat'l Jewish in Denver. They are wonderful but like you said they mostly deal with adults. Denver has an awesome CF Clinic at their Children's Hospital. Although, National Jewish is one of the leading experts in Non tuberculosis mycobacterias (NTM). I can see them saying she needs to go there if she has cultured an NTM.
B
bluewriter
Guest
Believe me I've tried switching PCPs for a while now, for myself and my daughter. I have medicare. It's slim pickings here for doctors that accept either Medicaid or Medicare, worse for Medicaid. The worst doctors end up in Arkansas and Louisiana (they are usually the ones who have been sued more than 15 times) and then the worst of those accept Medicaid here. I know it's different in other states. I've been there years ago when I had better insurance. It's a black hole here. I too don't understand why Houston is saying that. National Jewish themselves said Childrens would be more equipped. I think Houston is awesome and rated 3rd best nationally. I don't understand why. I wish I had more money to take her somewhere else. I wish I hadn't told her when I thought it was a sure thing. She is so hopeful now and I've never broken a promise. I didn't know it would be impossible.
B
bluewriter
Guest
She has never had sputum cultures or tests on her fecal matter or TB test or biopsy. She has had 50 chest xrays and 1 CT scan and 50 pages of blood work and 4 pumonary function tests. I also need to add that while the doctors haven't treated her recently, I continue to treat her at home with allergy meds and albuterol nebulizer. The last pulmonologist at Childrens in AR said no need to do the albuterol. I said "why would I stop that? It's the only think helping her." She has gone cyanotic during a bad spell with wheezing etc and needs that for those times. Nothing makes since here.
B
bluewriter
Guest
Ouch Albino. Albino and Bill-what's wrong or I assume unbelievable about our story? I assure you it's very real and heartbreaking here. You can ask anyone involved in this case-call and ask 50 different people or let me scan and email you evidence. It's painful when you are trying to get support for people to say stuff like that.
B
bluewriter
Guest
What am I saying that sounds so wrong?? Maybe if you tell me then I'll know why the local docs aren't helping. Maybe it's something I'm doing. Please try to be helpful and constructive though instead of just throwing stones at a desperate person.
What gets me is that they haven't done sputum cultures but have done every other test including CT scans. A sputum culture would yield so much information, if she is having many infections, then I would think that they get a culture on her to see what is causing her problems.. I think that is something that needs to be done. Not clear as to why they haven't done that because sputum cultures are pretty routine in a pulmonary/CF clinic.
Do you feel she is sick enough to be admitted? If that is that case, I would drive to another CFF accredited center (even if it is in another state), go the the ED department and then they will have no choice but to admit her (just say you are travelling and she got sick en route). That way, she will be seen by another team and my guess is that she will get a full work up including sputum cultures.
Other than that, not sure what else to suggest other than find another PCP, pulmo who is willing to diagnose your daughter.. It sounds like she could easily have immunodeficiency disease (which would explain her frequent infections and bronchiectasis) Perhaps you should go to an immunologist or allergist. They will no doubt run complete tests on the immune system and look for other causes that would explain your daughter's symptoms/findings. They should also keep CF on their radar until it is completely ruled out.
I hope you find answers soon
Jenn 40 wCF
Do you feel she is sick enough to be admitted? If that is that case, I would drive to another CFF accredited center (even if it is in another state), go the the ED department and then they will have no choice but to admit her (just say you are travelling and she got sick en route). That way, she will be seen by another team and my guess is that she will get a full work up including sputum cultures.
Other than that, not sure what else to suggest other than find another PCP, pulmo who is willing to diagnose your daughter.. It sounds like she could easily have immunodeficiency disease (which would explain her frequent infections and bronchiectasis) Perhaps you should go to an immunologist or allergist. They will no doubt run complete tests on the immune system and look for other causes that would explain your daughter's symptoms/findings. They should also keep CF on their radar until it is completely ruled out.
I hope you find answers soon
Jenn 40 wCF
As the "customer" you are paying for the service. So IMO, go to your doctor and indicate your child is sick, you want answers, want tests to "rule out CF", you want her symptoms treated. Demand a CF culture to see if she's growing any common CF bugs or at the very least find out what antibiotics the infection is sensitive. Being that her stools are irregular, demand additional testing. If they refuse then say please put that in writing in my daughter's file that parent requested additional testing and that they refusted because of....
Jewish isn't a CF clinic per se. Most of the children/parents I know who go live in Colorado go to a Children's Hospital/Facility in Denver. Again Mayo is also NOT a CF facility. They do treat a handful of CF patients, but with one the top clinics in the Nation just an hour away U of MN, most Minnesota residents go there or to Minneapolis Children's for accreditted CF care.
Jewish isn't a CF clinic per se. Most of the children/parents I know who go live in Colorado go to a Children's Hospital/Facility in Denver. Again Mayo is also NOT a CF facility. They do treat a handful of CF patients, but with one the top clinics in the Nation just an hour away U of MN, most Minnesota residents go there or to Minneapolis Children's for accreditted CF care.
B
bluewriter
Guest
JustDucky and Ratatosk, I am in complete agreeance with everything you said. I have been saying the same things and so have my family and friends and some of our other doctors that aren't included in her care. It is so hard for people to understand who don't live in Arkansas how different and bad the care is here. During her last visit, the pulmonologist said he heard crackles in her left lower lobe and she had moderate clubbing and a dinstinctively bad cough-those were all his observations yet he released her with no further testing or treatment. I said "but you just said you here crackles and a bad cough so shouldn't you treat with at least antibiotics or test sputum to see if there's an infection". He said no. I asked why and he just walked out of the room and wouldn't come back. Today, I'm going to call them and say that if they are going to insist on a ct with contrast that I'm not sure she needs, that while they are doing that I want another sweat test and sputum cultures done. I'm going to tell them what Houston and John Hopkins said about CF not being ruled out and that I wanted the gene sequencing done on her blood. I know I won't get anywhere with them-they don't follow logic, common sense, or sometimes even the law. Then I'm going to call the patient advocacy there and speak with them and see if that gets us anywhere. Even though I feel hopeless, I cannot give up on her-I promised her I wouldn't. She is not currently in a flare up. She got over the last one with time. Yes, I'm not sure it's CF, it just fits with symptoms and the 60 sweat test, but it could very well be immunological or sarcoidosis. They said they were going to refer her to allergy/immunology and gastroenterology in their hospital at AR Childrens but have not done that yet and I don't know why. Thank you all for your constructive comments.
Why submit your daughter to another CT when they haven't even done a sputum culture? This is really messed up. To have such a young girl with such dramatic symptoms is alarming. Clubbing indicates chronic pulmonary and possibly cardiac disease. Please go to your patient advocate asap with the medical files/notes, stick to the facts, and be specific regarding your requests. Note the inconsistencies in what the doctors are saying and then writing in the files, etc. You need to be taking detailed notes for every dr visit. Dates, names, dx, treatment plan, etc.
B
bluewriter
Guest
Thank you 2roses, that is very helpful. I am taking a recorder with me from now on too. I agree it's alarming. That's why I've been working day and night at this. I just got back from the visit with her PCP. She says she wasn't against Mayo Clinic but Mayo Clinic told her that they believe she should have those tests run locally since they don't take our state medicaid. She wrote down everything I said about Arkansas Childrens and she asked if we want to do without the CT then and I said "I want good rationale risk vs benefit of doing that and I definitely want them to actually completely rule out CF with a gene sequencing or another sweat test and I told her what Johns Hopkins said." I already spoke with the hospital nurse about it earlier today and the doctor was out and she said she'd call me back tomorrow with his answers. The PCP is referring my daughter to an immunologist now. She doesn't like that people keep blaming her and putting the responsibility on her which is understandable but also kind of the PCP's job. The visit went as well as it could have. She seems to agree that if Arkansas Childrens refuses to test sufficiently for CF that we should be referred out for that but she wants to give them one more chance to do it there. Serious immune problems and heart problems run in my family including me and my daughter's biological father. No one has checked out her heart at all, which worries me too but they seem to only be able to focus on one thing at a time.
Here's something weird though-Clubbing does indicate chronic oxygen deprivation usually by lung or heart and we know she has the cough and abnormal chest xrays BUT whenever pulsox is checked-she's at 98 or 99. When is her oxygen being deprived? Twice in the last four years she had some cyanosis with wheezing but that was before I got the abuterol nebulizer and that's not chronic. So that one I can't figure out.
I'll let you all know what Arkansas Childrens and Johns Hopkins says. Thank you.
Here's something weird though-Clubbing does indicate chronic oxygen deprivation usually by lung or heart and we know she has the cough and abnormal chest xrays BUT whenever pulsox is checked-she's at 98 or 99. When is her oxygen being deprived? Twice in the last four years she had some cyanosis with wheezing but that was before I got the abuterol nebulizer and that's not chronic. So that one I can't figure out.
I'll let you all know what Arkansas Childrens and Johns Hopkins says. Thank you.