pulse oximeter readings and CF - Cystic Fibrosis Message Board

ASDGRMama · 03-29-2005, 07:35 PM

Does CF cause a change in oxygen saturation levels?

Our appointment didn't go very well. It's an incredibly long story so I won't go into details but it was awful.

The PA (physician's assistant) ordered tests (I had to request them as he doesn't want to "push any panic buttons") but didn't sign the release before he went home (he was ill with a sinus infection) so I wasn't able to have them done yesterday or today (he'll be in tomorrow). He also isn't finished looking at my daughter's chart (as stated by the nurse) and her pulse oximeter reading was 92 which the nurse verified is "on the low side".

DD is not quite 22 months has had pneumonia twice and her hands are frequently cyanotic. Yet no one was alarmed at her oxygen saturation levels (except me). Then again the PA hasn't even seen them yet

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I requested the sweat chloride test which will be done along with the blood draws tomorrow (I'm demanding they be done tomorrow).

I took her in largely because of her lack of weight gain and they weighed her on an adult scale (doesn't have ounces just one of those sliding weight types) fully clothed with shoes and a full diaper!!

I am so shocked at the lack of concern we were shown yet I feel I got the tests I wanted for her. It's such a let-down though. I fully expected someone to show some concern. They didn't even have me remove her clothing. No one pushed on her belly, looked in her ears, nose or throat.

He strongly feels it's allergies (gluten); which I'm inclined to agree with him but want to rule out CF and diabetes (DD drinks enormous quantities of water; up to a gallon a day at times).

I just really don't know what to think about it all. My husband keeps asking me if the tests all come back "normal" if I'll let it go and believe them. Is the sweat chloride test definitive? Does an "in range" reading always mean one does not have CF? Should I request the genetic test along with it? Is the blood test definitive? I really feel something is wrong. I do not have a tendency to fret over things yet this has me quite concerned.

Well, if anyone can answer my question I'd appreciate it; thanks for reading all the gobbledy-gook that went along with it

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Love and Prayers, Kelly

Ratatosk · 03-29-2005, 08:41 PM

DS is also 22 months and they always have a difficult time getting a pulse-ox reading -- they never seem to have his size equipment or he's a busy squirmy toddler. But if those readings were accurate -- run, do not pass go and see a real doctor --- specifically a pulmonologist NOT a PA. My theory is you're going to get charged for a doctor's appointment, might as well see a real doctor. Besides, 8 years ago I was sick as a dog and went to a PA, who sent me home with the just a virus song and dance -- two weeks later the clinic called and indicated a radiologist had reviewed my chest xray -- I had pneumonia.

Some people have passed the sweattest with flying colors. DS's came back NORMAL. Not borderline. Before DS was diagnosed DH and I fought about his health. I KNEW in my heart of hearts something wasn't right and DH thought I was being a gloom and doomer and wanted something to be wrong with him. The doctors were the experts, right? But throwing up nasty green stuff isn't normal for a newborn. Nor is not pooping.

And it might be asthma -- that too is treatable. Better living through science an medicine. It's amazing the advances they've made in treatment options for that also.

BYHOPE1113 · 03-30-2005, 03:26 PM

Go with your gut feelings, so what if your wrong, at least you can start to get some answers. If you don't fight for your child no one will. Maybe you'll be wrong if so GREAT, if not at least you'll know what your dealing with and that will go a long way in helping get control of whatever the problems are. How can you fight a disease you don't know is there. Hang in there!!!

My daughter is 2 1/2 and on her first birthday we rushed her to the hospital because she was gasping for air. She had never had an asthma attack before but in retrospect, this was her first, in fact they didn't diagnose asthma at that point they said bronchilitis but she stayed in the hospital for 5 days. They sent us home with a nebulizer and said to give her breathing treatments every 4-6 hours. We were out of the hospital 3 or 4 days and I was rushing her back because she couldn't breath again and I was giving treatments every 2 hours. This was probably the worst because it got so bad so fast. Finally they said it might be asthma since my husband's family had a history of it. About 3 weeks later we were back at the hospital for the same thing.

To make a long story short after five more times in the hospital, multiple sinus & ear infections, several pneumonias, four CT Scans of the sinuses, two sets of tubes in the ears, adnoids removed, a sweat test for CF that was normal, a ciliary diskensia test that was normal, a genetic test for CF that showed no CF mutations, allergy testing with the results showing no known allergies here is what the doctors did find.

KA has moderate to severe asthma
Acid reflux triggers her asthma
The doctor believes she has allergies regardless of the test results. (Apparently tests performed before the age of 2 are less reliable and my daughter was 2)
At the same time as the genetic testing for CF the doctor also asked for genetic testing of any Polymorphisms and they found she had two polymorphisms called M470V and according to the doctor this is why KA was having some symptoms that mimic CF.

Do the sweat test but don't stop there, if you keep having trouble insist on the genetic test for CF. According to our Pulmonary Doctor who is also a CF Specialist, the sweat test can miss about 2% of CF cases.

P.S. I know Asthma can cause the oxygen level to lower because several times my daughters was below 90 in the hospital and we couldn't go home until she could maintain a 96 level.

Good Luck

sharon728 · 03-30-2005, 06:13 PM

Definitley stick to your gut feeling. I know how you feel about the PA. We are at the doctor every other week and on another anibiotic, except for a month my son couldn't even get off the couch anymore(he's 5). He stays constipated but this time it had been 7 or 8 days trying to get him to have a bowel movement. The doctor finally ran a cbc, never heard anything. I did not call to check the results, after another week of him getting worse not eating at all can hardly stand up, did not want to get out of bed, I took him back, I had to beg him to look on the bloodwork that had been run, if I had not insisted I would have not known he was anemic, Nor would they have known and he would not be getting the iron supplement he has to take now that has made such an improvement. Mothers know! Keep fighting it will all pay off. We go for CT SCAN MONDAY and SWEAT CHLORIDE TUESDAY.
So I don't know if my son even has CF, and I hear the same thing from my husband too if it helps ya to feel anybetter. I remind my husband that our son cannot live on antibiotics all the time, So until I know what it is he can stay out of the way

ASDGRMama · 03-31-2005, 02:43 PM

Well, my DD's sweat chloride test is tomorrow at 1. She had her blood drawn today. They were going to only do allergy and lead tests. I said I refuse to do this again; do the full blood work up as well (CBC, glucose, hepatic function, metabolic panel and thyroid). I don't think they're going to though. On Monday, the doctor said those were the tests we were going to have done so I'm not sure what caused him to change his mind.

I am so worn out and can't believe I actually have to fight to have tests done on a child the doctor admits has failure to thrive. I just feel like every day treatment is put off more damage to her little body is being done. Hopefully it's not anything that can't be undone.

Love and Prayers, Kelly