Discussions By Condition: I cannot get a diagnosis.

We need help finding a diagnosis for our 3 mos old. PLEASE read!!!!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: CamiAndCalliesMommy
  • September 4, 2008
  • 10:05 PM

Our 3 month old daughter ended up in the hospital on labor day after a very uneventful and relaxing day. My husband, sister, mother-in-law, brother-in-law, sister-in-law, grandparents-in-laws , 6 mos old nephew, and our youngest daughter all gathered together for a family weekend up in North Florida (about 8 hours from where my husband, myself, and our 2 little girls live). Our oldest daughter stayed home with with other family members for her Labor Day holiday. On Monday, the above listed family was together. We mostly relaxed on the back porch and enjoyed the holiday. Callie (our 3 month old) would go from myself to grandma to great grandma, or in to her swing. She was ALWAYS with more than one person at a time.

At about 4 or 5pm, my mother-in-law while holding Callie realizes all of her limbs are moving but one. She is not crying and is actually cooing. So, we lift up her right arm to see if there is a bite on it or if she is simply not using it at the moment. As soon as my mother-in-law lifts up her arm, Callie lets our a HORRENDOUS cry. We couldn't figure out why she was so upset. We touched it again, and the same thing. Due to her lack of moving it and the evident annoyance to her when touched, we decided to take her to the hospital. At this point, we are very worried a spider may have bit her. Any normal day I would have called my pediatrician (but again I was 8 hours away in a city with a population of maybe 1,000). We load up in the car (my husband, mother-in-law, sister, myself and Callie) and drive 45 minutes to get to a hospital. This hospital is the smallest hospital I have ever been to, but the best within a few hours radius.

We get there and the doctor's examine Callie. They do a urine test, general check up, and some x-rays. After about 2 hours waiting the nurses, DCF, and the police come in. They inform us Callie has a freshly broken bone in her right upper arm. We were floored. Callie had not had ANY incident to incur a broken bone. There was no bruising or marking on the exterior of the skin. She had also never been out of my sight for 24 hours and had never been left alone with any one person due to how many people were visiting for the holiday. I begin to cry in shock of my little girls arm, and just wanting it to be my arm not hers. The nurse then lays another wammy on me. She has 2 other old healing fractures that are about a month old. They then ask my husband and I how these all occurred. We have no clue. She has never been dropped, injured, hit, left alone, left with someone other than myself, her father, or her grandparents ever. There is no history of violence from anyone in our family. So we know SOMETHING is not right here.

After about an hour of what seemed to be a criminal interrogation, the actual doctor came in and said there is a strong chance there is severe and rare medical condition. He said there are many possibilities that will need to be screened for, and that in all the cases he has seen these conditions it has always started the same way with unknown cause of broken bones at a very young age and DCF involved.He said anemia, bone disease, and leukemia are all possible causes of this. HOWEVER, there are over 400 types of anemia, hundreds of bone conditions, and multiple other possible diagnosis (i.e. many many tests she will have to go through).

Right now, our daughter is 8 hours away and can not leave where she is located. My mother-in-law is temporarily caring for her, as DCF said until diagnosis is received it was advised I let grandma temporarily babysit her. Our other daughter has never had a broken bone in her life, or any injury. We are floored by this situation and terrified for our daughter. My family has a history of anemia, circulatory, and bone diseases. His family only has diabetes for medical history.

The doctor said this could take months and months of testing to determine the cause. He strongly believes this is a severe and rare medical condition and has advised DCF of this. However, Florida law mandates their investigation (which I do understand and respect as our daughter is only 3 months old ).


Previous anemia when I was pregnant (hemoglobin of 7) and was informed strong chance child would have some form for first few months

Callie bruises VERY easily (even just from her own hand bumping her face)

Callie's feet sometimes swell 2 to 3 times normal size with no explanation of why

Callie has a very wheezy/raspy heavy breath on and off throughout a normal day - this has never caused a rapid breathing

Callie has had oral thrush

She was born at almost 43 weeks vaginally...she weight 10lbs 1.3oz and was 22.5 inches.

Family history of some forms of anemia

Family history of weak/brittle bones

Has a hard time keeping down formula/breastmilk...had to be placed on special formula for this and still has trouble keeping it down.

Please, if you have any ideas of what this may be let me know. If I can have the doctors test for something sooner than later that would be best. That way she won't be subjected to too many tests and can come home asap. I am very nervous, has her medical team is no where near what I would consider is up to par.


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  • Read of your horrific experience. I did a quick search by typing in "brittle bone diseases in infants and children". It immediately popped up that there is a disease called "Brittle Bone Disease" and it, in fact, does often go misdiagnosed leading to the removal of children from their parents. The problem in this particular disease is a collogen protein mutation. You may want to run this by the docs to see if there is a test to determine if this is the case with your daughter. In the "Search" section of this website you can type in the same thing and there are other possibilities to look into if this does not lead you anywhere helpful. I hope all goes well. Please keep us advised.
    gracec 1 Replies
    • September 5, 2008
    • 00:15 AM
    • 0
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