Discussions By Condition: I cannot get a diagnosis.

My daughter is sick, please help

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Ruebug122
  • November 4, 2009
  • 07:27 AM

I will try to make this as brief and straight to the point as possible.

I have a 19 month old daugher, who one month ago, was perfectly healthy.

On October 6th, I took her to the doctor because I noticed her hair had been falling out. That same day, I noticed a giant bruise on her head, but I knew she didn't hit her head. (she is only with me - no other caretakers). The doctor told me she had Alopecia and told me that toddlers fall and bruise all the time. But I insisted she did not hit her head. I took the doctor for his word and thought London (my daughter) had Alopecia.

On October 10th, London woke up at about 3:00 am. I changed her diaper and noticed bruising all over her legs. I freaked out and was holding her. While I was holding her, a huge clump of hair fell out of her head. I called my mom at 3:00 am and took London to the emergency room.

While there, her liver enzymes came back elevated. She was admitted to the hospital where several more tests were done. She was then transferred to a high level care children's hospital.

Here are her abnormal labs from being admitted to the children's hospital.

Alkaline Phospate - 640 (normal range is 145 to 300)
AST - 196 (normal range is 20-60)
ALT - 304 (normal 4 and 45)
PTT - 45 (normal less than 37)
D-Dimer 2189 (normal is between 0 and 500)
LDH - 1682 (normal 425-975)
Creatine Kinase - 1139 (normal less than 296)

Her CBC is normal. No indications of Leukemia whatsoever. Her blood smear came back normal. Her platelet aggregation study came back normal.

She has seen every specialist - GI, Hematology, Oncology, Rheumatology, Genetics, Infectious Disease, and Dermatology.

Nobody has ever seen anything like this, ever. Her vital signs have remained stable and was able to go home. However, she is losing more hair and she has lost all the color in her face. Her face appears to be sunken in and it's a grayish skin tone.

She doesn't appear sick - just very very tired all the time and needs to be held constantly. Her vital signs have always been stable.

The doctors first believed this was a post-viral reaction to a simple cold she had in September. But if that was the case - her levels would continue to trend down. Now London's liver is fluctuating all the time. When she feels worse - she loses more hair in massive clumps. Her liver enzymes have elevated to the 700 levels. They will be doing a liver biopsy soon, but want to wait for some pending blood tests in case those have an answer rather than putting her body through a biopsy. And the GI doctor has a feeling the biopsy is only going to show inflammation - which we already know. He doesn't think her liver is the actual problem, but more that her liver is not functioning properly because of whatever illness she has. Because if it was liver disease - it wouldn't cause her hair to fall out and it wouldn't cause her Creatine Kinase levels to be so high. That is why they don't actually think it's her liver generating the problems.

Since her vitals are stable, she doesn't have to stay in the hospital. However, she has been in and out of there several times in the past month. She is following up daily, with several specialists, trying to get to the bottom of this.

She has had abdominal CT's and it came back normal. The ultrasound of her liver showed it was enlarged, but no explanations as to why. They did a full tox screen to make sure she isn't being exposed to led, mercury or any household chemicals. All came back clear

In the mean time, i have a very sick little girl and no one knows what's wrong with her.

If anybody knows, ANYTHING that could be of importance, please let me know. I am trying to add pictures - before and after and of pictures of her hair loss but I can't seem to figure it out.

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.