In The Ditch or How this all began….


Beginning at 5 months of age, my  sweet baby daughter had trouble gaining weight. Everything seemed to go well until that point. Four ounces of weight in one month was a huge concern to me. Her primary care physician thought she was just going to be tiny!  He told us to come back in 3 months!  This was unacceptable to me, so I scheduled a follow-up appointment for one month later.  BEFORE AND AFTER PHOTOS HERE

At that appointment she had gained only 1 ounce (instead of 1 to 2 pounds). The doctor stuck by his assessment.

Second and third opinion physicians used words like wizened, malnourished, failure to thrive, etc. We worked with a lactation (breast-feeding) consultant for a few months without progress. We were then referred to a physician at a major children’s teaching hospital. That physician was the head of their diagnostic clinic. This seemed like great news!

He was certain I was too old to nurse (43, so yeah not 25) and started daily naso-gastric tube feedings, since my daughter (now 8 months old) would not take a bottle. She still did not gain weight.  Eight months later, the results had not changed despite numerous appointments, tweaking the program, testing and time.

For reasons unknown to us a surgeon wanted to talk with us. She recommended a g-tube, and said our daughter was slowly starving to death.

The diagnostic clinic doc said it wasn’t necessary, that there was still time to work on the n-g tube. We opted for the g-tube insertion.  When our daughter’s surgical site would not heal the surgeon had us move to a picc line (which failed 4 times) and eventually a central line. Our daughter then gained weight like crazy on hyperalimentation feedings (intravenous feedings that bypass the digestive system and are dumped right into a chamber of the heart).   After 2 months the g-tube site had healed and our little miss looked like a cute little chubby bunny with all her weight!  See the before and after photos here. 

During this time we entered the early intervention program (dept of education program for at risk 1 – 3 year olds), and began seeing an occupational therapist, a speech therapist, a physical therapist, and a developmental therapist.

The O.T. said our daughter had sensory integration disorder (now sensory processing disorder.)  When we provided research on SPD to the diagnostic clinic physician and tried to discuss it, he refused and even said he would not read it. He thought we were indulgent and foolish and referred us to a child psychologist.  He believed that was the only logical cause of the refusal to eat.  Subsequent feeding clinics in different parts of the country have said otherwise.

The primary care physician and the diagnostic clinic physician each made significant errors in diagnosis and treatment. Our daughter has suffered much as a result of these mistakes. Unfortunately, there have been additional mistakes since that time. Some clearly avoidable. We have also acquired three new docs on our team who have been OUTSTANDING!

The thing I have learned from this is to ask lots of questions, write down the answers, the treatment, record statistics (weight, etc.) and get second or third opinions. I trust myself  as Advocate In Charge more than I trust the medical doctors. I do not believe their intentions are malicious, but I think there is a problem in the system.  Doctors are extremely specialized now and there is no Physician Who Knows Everything to oversee a complex case. 

I never leave my daughter with anyone else while hospitalized, other than a trusted and courageous family member. I take the position that I am in charge. Anything that is done to my daughter has to go through my permission process first. I am courteous, professional, and good-humored. Also tenacious. It has paid off. Hospital staff has been surprised at times, but my daughter has received better care since I have become so proactive. 

See my posts in Free Stuff (above).  The keep asking questions and fear  posts have questions to ask the doctors and suggestions on how to deal with the fear that naturally accompanies complex medical issues! 

My girlie-girl is doing quite well now.  We are grateful and happy!

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2 thoughts on “In The Ditch or How this all began….

  1. Your story is heartbreaking. I, too, am a victim of doctor callousness and ignorance. It left me disabled, broke and facing home foreclosure. I never was treated. But I’m an adult. Treating you and your child disrespectfully and hurtfully is unforgivable. I’ve written about my doctor interactions beginning in 2003 chronologically at http://doctorblue.wordpress.com. I haven’t been able to find the magic that will convince a medical professional to help me. And I can’t seem to even find anyone who is willing to act as an advocate on my behalf. My most recent attempt at getting medical assistance has resulted in another $5,000 in tests that produced the same results as all the previous tests I had since I never received a proper diagnosis and treatment. After two months of testing, I’m hoping he’ll have some treatment recommendations when I see him on Monday. Unfortunately, he has refused to help me locate a competent gastrointestinal surgeon, who can address the root cause of my illness. Based upon how poorly I’m doing, I’m fairly certain that my untreated infections have caused my illness to turn into cancer by now. I’m glad your daughter is doing well. If you can think of anything that might help me my e-mail is anna.gardiner@verizon.net.

  2. Anna, thank you for responding to my blog. I’m so sad to hear about the struggles you are undergoing. Health is a big influence on our level of hope. Lack of help in that struggle can be crushing. I hope and pray that you’ll be helped on Monday and all the days following.
    Blessings and hugs to you.

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