Doing research for a panicked friend....

Hey, all-

New to online forums, so sorry if I don't know the ropes yet. I am curious about thal symptoms in toddlers. My friend has a daughter (now 3) who has been quite tiny her whole life. She is a picky eater, and has also battled constipation (daily Miralax for treatment). Since May, she's had several bouts of fever that have been variously attributed to Strep, UTI, or unspecified viral infection, but all bacterial tests have come back negative. However, her urine has had both white and red blood cells. She has also become VERY pale in recent weeks. I am worried after reading your info, because I know she loves orange juice, and I'm pretty sure she gets some vitamin/caloric supplementation to boost her growth. Does any of this sound even remotely like thal? Mom is of Italian descent, and has had difficulty carrying a child to term. Any ideas?

Hey, all-

New to online forums, so sorry if I don't know the ropes yet. I am curious about thal symptoms in toddlers. My friend has a daughter (now 3) who has been quite tiny her whole life. She is a picky eater, and has also battled constipation (daily Miralax for treatment). Since May, she's had several bouts of fever that have been variously attributed to Strep, UTI, or unspecified viral infection, but all bacterial tests have come back negative. However, her urine has had both white and red blood cells. She has also become VERY pale in recent weeks. I am worried after reading your info, because I know she loves orange juice, and I'm pretty sure she gets some vitamin/caloric supplementation to boost her growth. Does any of this sound even remotely like thal? Mom is of Italian descent, and has had difficulty carrying a child to term. Any ideas?

Hi,

What's her age? Normally if a child has Thalassemia major, it get's detected within 3 years of born at max (normally it does within 12 months only). He or she might have Thalassemia minor and also did he/she got some blood work done?

Blood is being drawn today. Doctors are stumped about why she isn't gaining weight well, why she's getting all these fevers, and why there are red blood cells in her urine. How many people have Thalassemia? (What percent of the population are symptomatic, anyway?)

Will a regular CBC pick this up, or does my friend have to request something more specialized? Also, we're on the west coast. Any good treatment centers/support groups out here?

Will a regular CBC pick this up, or does my friend have to request something more specialized? Also, we're on the west coast. Any good treatment centers/support groups out here?

CBC will most likely catch thalassemia problem (hb being low and other counts) but what's her age?

Will a regular CBC pick this up, or does my friend have to request something more specialized? Also, we're on the west coast. Any good treatment centers/support groups out here?

Hello QuestionQueen,

As Pratik mentions, the girl does NOT have Thalassemia (Major) as it is detected in the first year, so that's good news.

Testing
Individuals with beta thalassemia trait (meaning Thalassemia Minor) usually have evidence of microcytosis (small RBC in size) and increased levels of hemoglobin A2. Hemoglobin F is sometimes elevated as well. Individuals with alpha thalassemia trait usually have evidence of microcytosis and normal levels of hemoglobin A2 and F.

On the west coast, the Children's Hospital Oakland is a best hospital and has a very good support system - http://thalassemia.com for reference.

If you can post the results of the CBC once you have them, I can take a look and see if thal minor is suggested. A hemoglobin electrophoresis test should be done if the CBC shows a possibility of thal. Do you know if the child has been given iron supplements? Failure to thrive is part of the diagnosis for thal intermedia and HbH disease, but until the CBC results are in, it's speculation.
LA Children's is also highly recommended if it becomes necessary to go to a thal center.

I was diagnosed with Beta Thalassemia  Minor 8 years ago as a result of a pre-operative blood test.  My surgeon was worried about my test result and sent me to a hematologist  who diagnosed me.  I was very upset until she explained it wasn't a big deal, all  it meant was that I had smaller than normal red blood cells.  I would have no symptoms and t wouldn't impact my life.  That certainly made me feel better, but I don't agree that I have no symptoms.

Ever since I was a child, doctor's old me I was anemic and prescribed be iron.  I bruised easily and took forever to heal.  I was tired a lot and could not complete more than one time around the track without becoming so winded I nearly passed out.  Actually any aerobic exercise would result in breathlessness. 

As I get older my symptoms seem to be getting worse.  I'm tired all the time, my blood pressure is low, 90/60, I have palpitations even when resting and I generally don't feel we'll.  I went to the doctor who was I had heart problems.  He did tests, and didn't fin heart problems.  He told me to take iron because my blood test showed I was anemic.  I told him I had been diagnosed with beta thalassemia minor and was told not to take iron by my hematologist.  I also asked if my symptoms were because of my BTM.  .  He said BTM doesn't cause symptoms, so there is likely another cause which he said was anemia and gave me a prescription for Slow Fe iron pills. 

The iron pills did not really help.  So what do I do to feel better?  Both doctors said BTM has no symptoms.  My hematologist said not to take iron, but my internist prescribed me iron which hasn't helped.  What do I do now?

Betababy,

Ask your internist to run an iron panel on you before taking anymore iron. Long term iron supplements can cause damage to organs and tissue if not needed. An iron panel will include several tests, which together can show if you need more iron. However, bruising is directly related to vitamin C deficiency, and vitamin C also aids the absorption of iron from food, the source from where your iron should be coming. I would suggest trying a vitamin C supplement, of at least 500-1000 mg daily. Because vitamin D deficiency is found in over 50% of the public that is tested, I would suggest getting tested. The level should be at least 35. Many symptoms of thal minor are aggravated by vitamin D deficiency, so correctly deficiency is quite important.

We have literally thousands of thal minor members who do have symptoms. We have a thread on two studies that did show symptoms in thal minors, and more study is needed, but there is no doubt that many minors do have health issues related to thalassemia.
http://www.thalassemiapatientsandfriends.com/index.php/topic,2769.msg26748.html#msg26748