Discussions By Condition: I cannot get a diagnosis.

Toddler with big head and extra-axial fluid

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: mbuhajla
  • November 13, 2010
  • 07:49 PM

I am writing on behalf of my daughter who is 27 months old. She is a large child al around in part because her dad is quite tall, and she inherited a large bone structure. She is 43 pounds, 3 foot 1, and her head measured 54 cm. When she was about 6 months old, her pediatrician noticed her size grew past 2 standard deviations on her growth chart. So he rightfully ordered a ctscan. It cam back that she has larger ventricles than normal, so he recommended a specialist. We went to the specialist, he measured the head and gave her another ct scan (2 so far total). He told us what her pediatrician already told us that her ventricles were enlarged, but she also had some extra axial fluid. As a result, he wanted to keep an eye on it. We came back in three months and had another ct scan (#3 before she turned 1). He saw no change in her scans. She still had large ventricles and extra fluid. Everytime we came for a visit, they kept asking if she was full term, and I answer yes. She was born on her due date with no problems. They also ask how she is developing and the answer is always "of course, she has met all of her milestones, and she is really happy." Since she has been to the pediatric neurologist she has had a total of 5 ct scans, and has developed an irrational fear of the doctor and ANY office building due to all of the scary activities that occur there. I have been unhappy with the neurologist, because he does not explain anything. I have not see one of the ct scans. He has not explained anything to me or my husband. He is very condescending and seems offended when I ask a question. Because of the lack of communication, I requested all of her medical records, so I could learn what exactly her problem was.

At her last appointment, I did not want her to have a ct scan because she is so afraid. I think the doctor was frustrated with us for canceling it. After evaluating her, he said he wanted to see her after a ct scan in 4 months. I really do not think she needs a ct scan especially since researching the two conditions that were the neurologists indications: Benign Extra-Axial Fluid collections and enlarged ventricles. I've read in multiple doctor journals about children like my daughter, the end result is they lead happy healthy lives with no intervention. I expressed my concern about another ct scan stating "is another one really necessary?" He said "I wouldn't order it if it wasn't necessary!" He was quite rude. I then responded, "Maybe I asked the wrong question, are there symptoms I should be looking for if there is in fact a problem." He mentioned, "Signs of pressure such as vomiting in the morning, headaches and excessive sleep." She has never had these behavioral symptoms. I am extremely worried about exposing her to multiple ct scan radiation. I am so scared the doctor is over prescribing these scans. I do not know what to do. My gut says my daughter is perfectly healthy. But he wants to see another scan, but this time giving my daughter a sedative so that she will cooperate. I am totally confused. I would love to hear from doctors or nurses or parents who dealt with this or knows about the issue surrounding multiple ct scans in toddlers. I will, at the very least, be firing this doctor.

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