I breathe too shallow to "trigger" my oxygen regul

Back again, had a Root Canal last Friday, they found I have an infected jaw, so I am back on heavy antibiotics.

Mips & Meps was it? I may have done them at National Jewish, but I do not remember the name. Then again, I gave up on keeping track of the test names about the 3rd week.

I had asked for the Platinum XL with Homefill II unit so I could carry the small bottles instead of E bottles.

I slept 38 hours in 3 days, so I hope I am getting caught up on my rest.

The other part I don't think I mentioned (because it made no sense) was that my wife and a friend tried to wake me up for approx. 30 minutes on May 5th. I knew what they wanted, but I couldn't remember how to wake up. See? Sounds weird. I will started testing when this jaw infection is cured. My fun meter is about pegged.

Hi. I forgot to mention that MIP's stands for maximal inspiratory pressure and MEP stands for maximal expiratory pressure. They aren't usually done as part of ordinary pulmonary function testing but I bet that National Jewish did.

Good luck,
Margaret

if they suspect CCHS, from the link SWS provided there seems there is a specific gene test they can perform to confirm it:

In 2003 independent research efforts in France, the United States and Italy confirmed the key role of a de novo mutation of the phox2b gene in well over 90% (in the US study) of CCHS cases. (See the CCHS Literature pages for further reading.)

...These studies confirmed clinical observations that there is a wide range of affectedness in CCHS and suggested that there may be other candidate genes for explaining CCHS. These results mean, for example, that each child of a CCHS parent (i.e., of a person with the phox2b mutation) has a 50% chance of also having CCHS. Testing for the phox2b mutation (or other factors in CCHS) is now available.

Have any kids? if so it may be important for them to know, the above may mean offspring may also have the mutated gene, UC Davis can perform that kind of test, I know they do gene testing for Lupus and other disorders.

Have you ever had a high res MRI brain scan done? You could have plaques or lesions contributing to the problem and most likely won't show unless high res and someone that knows what to look for.

I would be making an appointment with UCSF Neurology, your doctor can refer you there in about 5 minutes, might take 2-3 months to finally land the appointment but you will truly have someone who will get to the bottom of the problem. Been a few years since I was last there but they are pretty sharp.

Snoredog, first let me thank you for your sincere efforts here. Many people take their time to look things up for us and it is an act of kindness on your part.

I have contacted the only lab in the USA who can do this test. My Pulmonologist is a friend of the lady who owns it. It is apparently affiliated with Rush Hospital. I called for instructions a few weeks ago and they said $670 up front. Cash. I am on Medicare, Tricare for Life and a 3rd supplemental insurance. What this lady is saying is......and this may not be legal ..... at least in California I don't think it is legal to charge a person a higher amount than you would charge an insurance company.

Example: I had 3 skin cancers cut off a few months ago (thanks to my hundreds of days in Sunny South East Asia). They charge $150 for the office visit. Medicare paid about $27 and my Tricare will pay about $9. So the real price is $36. WHY SHOULD PEOPLE WITHOUT INSURANCE HAVE TO PAY $150? MAYBE THE PEOPLE WITHOUT INSURANCE COULD AFFORD MEDICAL CARE IF THEY WEREN'T GETTING SCREWED SO BAD. Sorry, almost fell off my soap box.

Delta Dental of Calif. told me about this when my Dental Insurance ran out after the multi-car pile up we were in during June 2001. Delta told me the dentist could only charge me what Delta paid. I would think it is the same with medical care. Maybe not. Some of you are more knowledgeable than I on that subject.

Snoredog, I emailed our kids. We adopted two of the five so they are safe. I hope. Only one grandchild has respiratory problems and my son-in-law runs a lab in a major hospital. He is taking care of it. My oldest daughter has been diagnosed with MS and Fibromyalgia (hope I spelled it right).

UC Davis is difficult to deal with. I called them but I have to see their doctors, which I don't mind, but I think the lady said I have to join their HMO or something like that. I said no thanks. I have been told that this lab at Rush Hospital in Chicago is THE only lab. The lady patented the process or something like that.

I had a high res MRI brain scan done. I was in there over an hour. My brain had no lesions they could find. I am not sure whether to be happy or not.

Oddly enough, National Jewish Hospital, in Denver, does NOT have an MRI machine, or did not last summer.

UCSF is a good hospital, a great hospital, but this PHOX2B test can only be done at Rush. UCSF is an outstanding hospital. They rebuilt my neighbors bladder, etc. and he is cancer free.... for the moment.

At http://rarediseases.about.com/od/raredi ... 071004.htm you will find this about half way down the page.

Diagnosis
In order to be diagnosed with congenital central hypoventilation syndrome, an individual must have the following:

* Persistent evidence of poor breathing during sleep YES
* Symptoms begin during the first year of life YES
* There are no other respiratory or muscular conditions that could account
for the breathing difficulty NONE WE KNOW OF
* There is no evidence of heart disease. NONE WE KNOW OF

Some infants with CCHS may be mistakenly thought to have heart defects, or to have another type of breathing problem. Unfortunately, some infants with unrecognized CCHS may die and be thought to have had SIDS (Sudden Infant Death Syndrome). THEY SAID I WAS BORN WITH AN ENLARGED HEART AND I SLEPT ON MY MOTHER'S STOMACH THE FIRST YEAR AND A HALF AFTER I WAS BORN. No one had heard of CCHS. Only a mother's love won the battle for my life.

My current view is that I have met every criteria listed above and the only other thing would be the DNA test. Why spend $670? If they say yes, then I spent $670 to prove what other criteria already proved. IF the DNA test said no, the test is not 100% conclusive, so I am back to square one and have spent $670. It won't bankrupt us, but I would rather help the homeless than spend money for a test I am not sure I really HAVE to have.
Does that make sense?

Thanks again, and I will call UCSF to see if they have found another way to test my DNA.

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