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Rare blood disorder (TEC) anemia - Page 2

post #21 of 24

Wow. I had no clue that there were others out there! Your story is EXACTLY like ours. In 2009 Our 15 month old daughter had been sick. We thought it was just your typical virus that she could have contracted from our other two school age-children or from a child from church. But after a week, still the same. Nothing we did worked. My wife too really paid attention to her color as well. She's already pale with blonde hair and blue eyes, but she had noticed the dark circles under her eyes, and the purple lips. She had also become very non-active and lethargic at times even sleeping almost 10 hours a night. We had scheduled an appointment with our PED the next day, but then my wife had become sick, so she asked me to take our daughter to the doctor that afternoon. Once we arrived and they did their typical check up/vitals/stats, and she suddenly jumped up and left the room. She then returned with half of her staff, and they immediately had me administered oxygen. One nurse looked at me with fright on her face and said "You have 15 seconds to decide what to do with your daughter. Either I call to air lift her to Gainesville, or we send her to the local ER and an Ambulance from St. Petersburg All Children’s will come get her." Having just moved to Tampa area from St. Louis, Mo I blurted out "All Children’s!" I asked what in the world was going on, the doctor looked at me, and said "In all my years of profession, I don't exactly know what's going on, but I will tell you, she’s dehydrated, I have detected a heart murmur, her body is not oxygenating, her CBC is below a 4, and she is beyond the capability of this office. We will do everything we can until the ambulance arrives." One nurse asked for my car keys, and she said she would go out to our vehicle and get her car seat for us because the ambulance would put her on the stretcher in her car seat. I then called my wife, and tried my best to explain everything and told her to get here as quick as possible. The ambulance would only wait for her for 10 min. My in-laws were at my house and the time so my father in-law drove my wife, as my mother in-law stayed with the other children. When we arrived at the local ER, we still had no clue as to what was going on. They were having trouble starting and i.v. Not only was she only 15 months old, her veins were collapsing. They were even looking to try on her feet or her groin. THANK GOD, the All Children’s ambulance crew arrived and she walked up and in one shot got the vein. It took a little while to get transferred to All Children's because her organs where starting to fail. To shorten the story we spent two nights in the ICU, received two transfusions and she received multiple tests, including the spinal bone marrow biopsy which made my wife almost pass out and she had to leave the room. We too thought we were looking at leukemia. After the second day, the Oncologist ruled that out. On the third day we were starting to see improvement. Her vitals were looking good. Her fever was gone. And the urologist said her kidneys were working properly again! They then moved us out of the ICU into a normal room. But there was still no clear answer as to what was going on. That is when the Hematologist Finally told us we were looking at TEC. The Hematologist looked me right in the face and said “I don’t know who you are, or what you believe, but I can tell your people of faith, so who ever you believe in, you better thank them because 48 hours ago, you would have put your daughter to bed and she would have died in her sleep” Before it was all said and done, she had to have one more transfusion. And they let us go home. We had to have two more weekly visits before she was officially released. She was put on a few different medications; the worst was the iron drops. That junk just smelled just plain nasty, and of course she fought us on taking it, but after that bottle was done, she didn’t have to do it any more. But they told us to always be on the look-out for these symptoms, and she should out grow it by the age of three. She is now 6 years old, and havn't had any trouble since. She's half way through her kindergarten year, and every night when we put her to bed, we thank God she is still here!

post #22 of 24
My daughter had this 21 years ago. And I have researched this often. I am curious if all of our children have A- blood type? And if all of us mothers are also negative blood types with a spouse with negative blood type. I had to have a rhogam shot when I I was pregnant because I did not know what my husbands blood type was. I think the shot might have caused the TEC. I did not get the shot with my second child because I knew we were both rh negative. She never became sick with TEC. Her blood type is 0 negative. I also wonder if any of your children have had another 1 in 5 million chance of anything happening to them? If only we could win the good lottery and not bad. I have gone through a number of things with my oldest child still to this day that might come from the TEC. Another 1 in 10 million. Would love some feedback. Thank you, PK
post #23 of 24

First, i am Dutch so sorry for my poor English!
Our daughter has had TEC at the age of 17 months. The doctor did not know what was going on and we have been stuggeling for 6 weeks. I have been countless times too the Docter but I always came back with just antibiotics. finally she has been hospitalized with a bloodcount of 2.1!
We now know she was nearly dead but we are thankfull to get her tranfusion in time.
I never found an other parent in the Netherlands who has experienced the same. I am so glad i found this site!

Our daughter is now 4 years old and is doing well. She still suffers al lot of illnesses and seems to have has difficulty to recover every time. Does anyone recognize this?

She has bloodtype B en we are both positives. So completely different from the last post here.
post #24 of 24
Wow I am reading your experiences after a scary few days for our family. I am happy to find personal stories and compare. My Bridgette just turned 2 and all all week had been fighting some kind of virus. She was throwing up and had some kind of physical pain either head or stomach maybe even nausea but didn't have any fever or diarrhea. I took her to the pediatrician on Thursday and all weekend everyone was commenting on how yellow she looked. I thought jaundice but her eyes were not yellow. I took her back to the pediatrician on Tuesday morning and they did a CBC and then doctor came back in shock saying that her hemoglobin level was super low and her blood sugar super high. He was concerned and directed us to to go to the ER for further testing immediately. So we did and they did all sorts of testing. Urine, 2 ultrasounds, 2 xrays, blood. Again her hemoglobin level was 5.3 and they said she looked sallow. When the ER doc got back to us she said she didn't think it was leukemia because she saw some newer red blood cells but she wanted to transfer us to the children's hospital so the hematologist could run more tests. We were in shock and hearing the words bone marrow and cancers freaked us out but we didn't think ahead too much and tried to just go with what was happening. after they transferred us they asked if we were open to do a transfusion. I really really did not want to do this I was scared of the implications but said if she needs it to survive then of course. Luckily my Bridgette did not need a transfusion. Something clicked and she started making a ton of new red blood cells. The hematology dept and ER doctors confirmed it was TEC and said bone marrow suppression of red blood cell production was most likely triggered by a viral infection 2 to 3 weeks prior which was on or around her birthday and we compared pictures to see if we could pinpoint her color fading. We noticed she looked more normal pink color, pink lips, in her b day pics. We feel so lucky that the grandma's kept saying that she was yellow and that something was wrong because aside from the puking I didn't really notice anything. We just got out of the hospital and already followed up with the hematologist and her numbers are looking much better. This whole thing has been really quick and scary but I am feeling so blessed that it is only this and not something long term or terminal! We have another child as well my 3.5 yr old dylan has down syndrome and we were introduced to doctors bringing us shocking news early on so maybe this helped us handle this situation better. Someone was curios about blood types my daughter has O negative blood and I am A Positive. My daughters blood had plenty of iron and the doctors said what great shape she is in for having such low hemoglobin. This is all new to me but to the moms that have previously posted thank you! I love that I can search the Web and find other parents that are going through similar situations. Thank u for your honesty
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