DEAR DR. GOTT: Our daughter, age seven, is high functioning with Down syndrome and celiac disease. She is 42 ½ inches tall, 53 pounds and her BP is 105/71. She was born one month early with two holes in her heart which healed on their own by age 18 months. She has only been ill with a cold three times in all her seven years.
We were having her CBCs run annually until last year when we were told to run them every six months; but, as of latest report, we have been told that blood work now needs to be done every three months. Our biggest concern is leukemia; however, I have been reading that her results can point to other things. Below is a list of concerns, supplements and blood work results. Could you please let me know if you see any red flags or if you have any concerns you think we should address and who we should talk to (her regular doctor or a hematologist)?
1.) She seems to bruise easily and the big bad bruises seem to clear up faster than the small bruises, but all are gone within five to nine days.
2.) She can sleep for up to 14 hours a day (if we let her).
3.) She used to love to go out and run, but in the past few months she will run for a few moments (playing kick the ball or racing mom to the end of the yard) and then tends to want to just walk or sit; however, she will dance around the house for five or ten minutes straight.
Recent blood tests show a vitamin D level of 23.1, vitamin b12 level of 1159, hemoglobin level of 15, and a mean corpuscular volume of 91.
Our daughter drinks about 30 ounces of liquid a day. Is she getting enough or too much? She loves “Honest Kids” organic grape juice, which is very watered down. At least eight ounces of her liquid intake is clear water.
She also takes the following supplements: Animal Parade children’s chewable multi-vitamin and mineral supplement (one per day even though the bottle says it should be two), Animal Parade vitamin D3-500 IU (one daily), Animal Parade Kid Greenz (one daily), and Nordic Naturals children’s DHA-250 mg (four daily).
P.S. When I say she is high functioning, I mean that she learns “anything” you teach her with one or two quick lessons but she is still having problems speaking clearly, even though her mouth is not deformed. Otherwise her common sense, problem solving, logic, sense of humor and all other brain functions are normal for her age.
DEAR READER: Easy bruising is often a sign of anemia, which your daughter does not appear to have. Without knowing the rest of her lab work, such as her red blood cell count, platelet count, etc., I cannot determine if something else is going on causing her bruising. However, I can give you some general information about what the results you provided may mean.
A normal vitamin D level is usually between 30 and 74. Your daughter’s is low at 23.1, despite supplementation. If even small amounts of gluten are still getting into her diet, this could be the cause of her low D. Other possible causes include decreased exposure to sunlight, too little vitamin D in the diet, the use of certain medications, malabsorption, and liver or kidney disorders.
A normal vitamin B12 level is between 200 and 900. At 1159, your daughter’s is high. This can be the result of myeloproliferative disorders (those that affect the blood cells), liver disease, and over-supplementation (although excesses are typically excreted in the urine).
A normal hemoglobin level that measures how much oxygen the blood is carrying, is between 12.3 and 15.3. This places your daughter’s level on the high side of normal. A normal mean corpuscular volume measures the size of the red blood cells is between 80 and 100. Your daughter’s level is right in the middle, placing her within normal limits.
Without knowing what changes have occurred that have prompted your daughter’s physician to recommend more frequent testing, I cannot begin to guess what he or she is looking for. Close monitoring, such as your daughter is receiving, isn’t warranted without cause, so I urge you to speak with her physician regarding his concerns. You will likely also benefit from a consultation with a hematologist (blood specialist). Perhaps he or she can shed some light on the situation.
Beyond that, your questions regarding your daughter’s fluid intake are best addressed with her pediatrician when you can also review her vitamin and mineral supplements. These may be beneficial for her because of her celiac disease but unless recommended by a doctor, she may not need them if she consumes a healthful, balanced diet.
All that being said and because your daughter has Down syndrome, she is more prone to certain health problems because of the holes in her heart at birth, certain forms of leukemia (which typically present within the first three years of life), hearing and respiratory problems, thyroid conditions and more.
You may already be aware, but a good source for information is the National Down Syndrome Society which can be found on line at www.NDSS.org. Information can also be obtained by phone at 1-800-221-4602.