The Story of “Little Miss”

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!


3 thoughts on “The Story of “Little Miss”

  1. Thank you for sharing. I am amazed at how similar our stories are. I understand when you say that the doctors are not malicious… I feel the same way; it is very frustrating though, when our sweet little children suffer because doctors failed to properly diagnose and treat the problems. I am happy to say that I have started taking matters into my own hands as well. Advocating and making sure that the doctors are not repeating or missing important things. That is one of the reasons I have decided to start feeding Braydon homemade blended formulas instead of the canned junk.. I need to get a better blender first. We are going to use a food processor, then use a blender. Hopefully this will work out until we can afford to buy a good one. With the small changes we have already made, we have noticed a big difference. I really believe that as a mom, we know what is best for our children. If the doctor would have listened to me a couple of years ago, we could have avoided a lot of issues and suffering. I am so grateful to have found your site. I am looking forward to trying out your recipes, and watching my little guy grow and thrive like your beautiful little girl. Thanks

  2. wow! its sooooo good to find someone else out there that has struggled with this topic, and to see im not alone! i have a now seven year old son, with many of the same issues as your daughter. how old is your daughter now? my son stopped drinking anything at 6 months old. he stayed the same weight 16 lbs. for 4 months, till he was placed with a feeding tube, (through the nose, then later, with a g-tube.) after many therapies, he still has not overcome his problem with food. (and as ive said, is 7 years old now.) i wish you and your daughter all the best. i know its tough! but were tough moms! our kids WILL grow up to be just fine! GOD bless you!!!!!!!!!!!!!!!!!

    • Hello… My daughter is almost 16! as much as we all hoped we could help her overcome her food aversions, we have been through many programs and we are still tube feeding 3 meals a day through her g-tube. If I could have afforded to hire someone to do the SOS program in our home every day, I think we would have made more progress, but it is what it is. I wish you and your son all the best as well!!!! God bless you and guide and protect you and your family! ❤

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s