Discussions By Condition: Repiratory conditions

1 year old - undiagnosed fast breather/low oxygen levels

Posted In: Repiratory conditions 8 Replies
  • Posted By: owensmom
  • September 19, 2007
  • 11:25 PM

My son began breathing very rapidly at the age of 3 months (70-80 breaths at all times). He had a pulmonary function test that concerned his pulmonologist. Since then he has had a lung biopsy (fine), swallow tests (fine), every blood test they can think of (fine), but his oxygen levels are still lower 90's when he is awake. After many, many stays in the hospital and no diagnosis, he finally is not breathing as rapidly or with the effort he once did. At his check-up today, his oxygen levels are still too low according to the Dr. and she wants a sleep study performed. I feel that we are just running in circles and there is never going to be a real diagnosis. Yes, we know he has low levels, but there's never a reason. I have his function test results, but do not know how to interpret them. At the time, they were shocked at how bad they were.
I'm hoping that there is a simple reason to his difficulties, but it's just simply being overlooked. I hope that someone reading this might be able to help.

He was diagnosed as a diabetic at one time, but the blood sugar levels were normal after that one trip to the ER. (blood sugar was read at 300)
He ws diagnosed as aspirating at one time, although swallow tests were good, and Dr. wanted a permanent feeding tube put in. He has a temporary one for a few days during one hospital stay.

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8 Replies:

  • Hi! Your story sounds a lot like my daughters. At 16 weeks old she was admitted to the hospital with low oxygen levels and rapid breathing (over 90 breaths per minute). The did every test under the sun it seems like, with no answer. They Dr's would say "AHH HAH! we have a diagnosis" and then it would turn out to be wrong. The most they came up with is she was somehow aspirating formula into her lungs as she had lipids in her lungs. However, she's had two swallow tests, both came back normal. From the time she was 4 months to 6 months she was admitted to the hospital 4 times. All for low oxygen and fast breathing. She had a feeding tube put in which seemed to help. She is one year old now, and for the past 4 months or so she has been fine. No oxygen needed, feeding tube has been out. However, this evening I noticed she was breathing fast again. I have an O2 monitor at home, so I hooked her up and she is running mid 90's. I'm so worried whatever happened before, is starting over again. Keep me posted if they ever come up with a diagnosis for your son. Did your son ever come down with Pneumonia? When my daughter was first admitted you would NEVER know anything was wrong with her. She was happy, no fever, totally acted fine. Except for the breathing. Then about a month into the ordeal she came down with Pnuemonia, and then got it 2 more times after that. Its all been weird to say the least. Keep me posted! e-mail me if you want to keep in touch...Jamiedavis9@aol.com
    Anonymous 42,789 Replies
    • September 22, 2007
    • 05:36 AM
    • 0
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  • This is the first thing I have found on the internet that sounds similiar to my son. He is four months old. His oxygen use to be in the 80s, but is now in the low nineties. He has had all the test except for invasive testing. MRIs, Cat Scans, Nuclear Scans. Now has episodes which last for only about 5 minutes where he drops into the 60s and 70s but comes back up to the 90s. They also thought he was asperating into his lungs, possible vessels in his longs. My doctor is pursuing finding out what is wrong. We do a ?Bubble Test next week. I sympathize with you in not knowing what is wrong. The blessing is I know a lot of things that are not wrong. If I learn anything or find out I will update you and would love to hear any news. Thanks for sharing. I will pray for your children.ahetzer@integrity.com
    Anonymous 42,789 Replies
    • January 20, 2008
    • 05:01 AM
    • 0
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  • My 3 year old was recently released from a 3 day stay in the hospital because of rapid breathing and low oxygen levels. They said he had a combination of Pneumonia/Bronchiolitis/RSV. The ER dr only tested for that and said that was the problem. His oxygen levels were down around 87, and only up to 95 with the oxygen mask on. They did breathing treatments daily, and gave him physical therapy to loosen up the stuff in his lungs. His oxygen levels went up to 97 within 2 days and they let us come home.I'm not sure if that helps any, but maybe have them check your lil one for that! Good luck!
    Mom2ETnBM 1 Replies Flag this Response
  • Did any of you ever find out what was wrong with your children? My child is experiencing the exact same symptoms and the doctors are clueless.
    Anonymous 42,789 Replies
    • October 11, 2008
    • 02:35 AM
    • 0
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  • My child was just diagnosed with CCHS. You may want to check out this rare syndrome out.Congenital Central Hypoventilation Syndrome is not that common and easy to treat. It has to do with low O2 levels and high CO2 levels. She is 11 but almost everyother child has been diagnosed as babies.www.cchsnetwork.org
    Anonymous 42,789 Replies Flag this Response
  • I also have a 16 month son with the same problems. They have not diagnosed him with anything yet. We went from RSV to now Pneumonia and still no diagnoses. Now they want to keep them on breathing treatments every four hours. Does any have answers??Please help!
    Anonymous 42,789 Replies Flag this Response
  • Hi Everyone. These sound similar to my son who is just about to turn 2. He is healthy for months then all of a sudden, snotty nose, fast breathing and low oxygen levels. We have had about 6 stays in hospital over the past year. First time in he was diagnosed with RSV and Bacterial Pneumonia. Next one they said was bacterial Pneumonia again. Every other time we have been in, it ranges from astma, virual Pneumonia and they are not sure. I have been told he will grow out of it so here's hoping. will keep an eye on the issues here to see how you are going.
    Anonymous 42,789 Replies Flag this Response
  • My 2 yr old daughter has a rare lung disease, NEHI, neuroendrocrine hyperplasia of infancy. She was diagnosed at 8 months olfd, but before that she had severe feeding issues and was very restless at sleep. They (dr) too did all the test, but she had a lung biopsy conducted to confirm the NEHI disease as to they (dr) did a HRCT, hgh resoluiton CT scan. Any O2 lower the 92 is not normal especially if those levels are staying there. If your chid is working that hard to breath I am sure the heart is working double. The O2 will help both O@ & heart rate. Get a pulse ox machine to keep track of your childs levels.Best of luck!
    Anonymous 42,789 Replies
    • January 9, 2011
    • 08:54 PM
    • 0
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