Need Suggestions

Hi.  I'm new here.  My 6 year-old daughter was diagnosed last fall with Alpha Thal Trait.  Kieren has horrible headaches and stomach pains.  Her specialist told us to give her a children's multi-vitamin with iron every day to help with the pains.  I'm not liking this suggestion.  It just doesn't do any good and I'm worried about giving her the iron.  Our family doctor said to give her motrin for the pain.  REALLY?  That is just not good for her over time!  Some weeks Kieren comes home from school in tears from the pain and just curls up on the couch with a blanket over her head, telling me how much it hurts.  The doctors are just not helping us!  I need something that will work, not turn her into a zombie, and is safe.  Yeah, I want it all for my little girl.  Can anyone PLEASE give me some suggestions???

Thanks for listening to my frustrated mommy-rant!
Sam
Mom to Kieren (6, adopted from Guangdong Province, China 12/11/05) & Cullen (14.5, homegrown)

Hi Sam,

Iron is actually advised against with alpha thal minor. Iron cannot help thalassemia, as it is a problem of low alpha globin production and has absolutely nothing to do with iron levels in the body. A multivitamin without iron would be appropriate but additional folic acid should be taken. At her age 400-500 mcg daily would be recommended. Folic acid is the only officially recommended treatment for alpha thalassemia, but following a good diet is also important. Avoiding chemical fumes is also advised, because they can cause an early breakdown of red blood cells. Keep in mind that her digestive system may not be able to handle an American diet at her young age. Her stomach pains may be due to a reaction to certain foods in her diet. Wheat is often a culprit. I have heard similar stories from parents of adopted children from China before, and diet may be a factor. Keeping a food diary and looking for times when she does feel OK may help to determine if diet is contributing to her pains.

Do you have any of her blood work results, like a CBC (complete blood count) and/or a hemoglobin electrophoresis? It might shed some light on whether or not her symptoms are thal related.

As she gets older she should be aware of the implications of being an alpha thal carrier. Knowing her partner's status is important in avoiding having children with a more serious version of alpha thal.

Hi Andy!
Thank you for responding!  I really appreciate everything you are doing!  I have taken your advice.  I had to order the chewable folic acid, but it should be here soon.  I took Kieren off the vitamins with iron.  She has always hated the taste of the vitamin, so she's a happy girl!  We had never given Kieren iron until the specialist insisted we do.  The iron always gave her constipation as a baby so we avoided it.

Kieren's diet is awful.  She doesn't really like food.  Because of the orphanage (she had never had anything except formula mixed with rice cereal for the first 9 months of her life), she just doesn't respond to hunger signals (just bacause a baby is hungry doesn't mean she will be given a bottle or even attention; everything is on a schedule and bottles are propped so if it falls over, too bad).  She really could care less if she eats.

Kieren will not eat meat, veggies, or many fruits.  There are very few foods she will eat.  She will eat pasta (butter and parm. cheese only), rice, banana, apples, grapes, some breads, potato, cheese (some of them), milk, Ritz Crackers, pepperoni (hard to believe), bacon (strange), and she loves ketchup.  She prefers "white foods".  Our doctor just wants to get calories in her to keep her from dropping weight.  "Making" her eat does not work.  She will just not eat because she really doesn't care about food.  When she is old enough, she will go to a nutrition therapist.  I'm only telling you this because I want to give you an idea of her diet.  Kieren did have food allergy testing.  She has a mild allergy to dairy, but she has it every day (for protein) so we haven't noticed a problem with the pains being on days that have certain foods.

I don't have a copy of Kieren bloodwork.  I will get copies at our next visit in August.  Requesting records with our doctors is a nightmare unless you have an appointment and refuse to leave without them.  (Been there, done that!  Been down this road with my son for Cyclic Vomiting Syndrome.)

Thanks again for helping!

Sam

Hi Sam,
While I was reading this thread it reminded me my childhood. I remember as a child and even as a young adult I never wanted to eat. I did not like most of the food. No fruits no vegetable. I used to go to school without having breakfast. I never like to eat in the morning. My mom used to get very angry with me for not eating. I was underweight as a child and as a young adult. I never had the appetite to eat.

Things changed gradually. When I was about 25 years old or so I was about 100 lbs and I started to enjoy food gradually. Now I do not have that problem and I love to eat. Currently I weight 122 lbs and I am seriously watching my diet. Now I am feeling I am gaining way too much. But it could be hormonal as well. I may have PCOS.

 Even when I did not like food I always liked moist food meaning foods that are not too dry. Pasta with ketchup is the perfect example. Cereal with milk, rice with curry ,any food that not too dry. I still have trouble finishing sandwich because it’s too dry for me.

One thing you can do for your daughter is to make sandwich with extra mayo and ketchup. You can also give juicy fruits like watermelon or orange or home made fresh fruits juice. Somehow make her food moist   See if it works.

I just wanted to share this with you. Hope it helps.