More questions...testing...spleen issues?

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Offline gorgemom

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More questions...testing...spleen issues?
« on: January 10, 2009, 06:55:11 PM »
Hello, I am not sure if this is the right area to post this or not, but here goes.....
I came on here for the first time in August after finding out that my newborn was diagnosed with Alpha Thalassemia. I was not told which type, I guess we will know more when she has some repeat labs done at her 6 month appointment. This diagnoses came out of the blue for us, as she is my fourth child and to my knowledge no one else in my family had this.
After learning of her diagnoses I remembered that when I had some labs done a year or so ago, the doctor that reviewed the results had questioned whether I had thalassemia as I was microcytic and anemic, and have been most of my adult life. I blew this off at the time as I figured if I had something like that, surely I would have known about it. Now with this diagnoses of my newborn it makes a bit more sense, so I am in the process of getting some labs done to see if I may have it.
My question though is regarding my 15 yr old daughter. I am sure they did not test for Thalassemia when she was born. She has always bruised very easily, we have had bleeding times checked and it was normal, but she was mildly microcytic. Recently she started complaining of left sided abdominal pain that radiated into her back and shoulder, so I took her to the doctor and I mentioned the alpha thalassemia, not knowing if she could have it as well. My understanding is that thalassemia can cause spleen enlargement which can cause left sided abdominal pain. So, they are doing some lab tests to see if anything shows up as a potential cause for the abdominal pain, including some preliminary tests for alpha thalassemia, and then they are going to do a ct scan if nothing shows up there.
I am just wondering though, do you see spleen enlargement very often with alpha thalassemia? Is it possible she has had alpha thalassemia all this time without anyone knowing? Could her bruising be a symptom of alpha thalassemia? Or am I way out in left field here? They labs were done last week, but I haven't recieved the results yet so I am in the dark still.
If anyone has any thoughts or suggestions I would appreciate any input.

Thank you!

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Offline Andy Battaglia

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Re: More questions...testing...spleen issues?
« Reply #1 on: January 10, 2009, 09:12:55 PM »
Alpha thalassemia can affect spleen size and splenectomy is a treatment for more severe cases. Any anemia that causes defects in the red blood cells can affect the spleen, so we must try to find ways to make the red blood cells last a little longer. Supplements that should be considered are L-carnitine, vitamin D and E and magnesium. Magnesium is far more important than realized, as it is necessary for the health of the walls of red blood cells and those deficient in magnesium have more gallstones, which are a by-product of the bilirubin produced by the destruction of the RBC's. Also, fava beans and benzene have to be avoided completely as they will cause hemolysis in alpha thals. I have also heard of reports that in some people, other types of beans can cause hemolysis, so please watch for any reaction after eating other types of beans or legumes, such as lentils (dal) or peanuts. These may be perfectly safe but you should observe to make sure these do not contribute to problems which would be reflected in lower Hb or enlargement of the spleen.

It is very possible that your daughter is also a carrier. DNA analysis is the only method to absolutely determine alpha carrier status. I would highly (as highly as I recommend anything) that she begin daily vitamin C supplements of at least 500 mg. Easy bruising is most likely related to vitamin C deficiency and I swear by C as a remedy. I have a terrible bruising problem whenever I neglect taking vitamin C. The difference it makes is great and vitamin C is perfectly safe in large doses except for thal majors with iron overload.
Andy

All we are saying is give thals a chance.

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Kathy11

Re: More questions...testing...spleen issues?
« Reply #2 on: January 18, 2009, 10:41:43 PM »
PreImplant Genetic Diagnosis - Testing, Treatment for Genetic Illnesses http://www.woai.com/news/local/story/Testing-Treatment-for-Genetic-Illnesses/9cISgLT2aUu-Gjzx4RvPIg.cspx As Utah Jazz basketball player Carlos Boozer and wife CeCe investigated ways to save their son from sickle-cell anemia, they found a procedure that would not only reverse his disease, but give them more children born free of the fatal disorder. Within a five day window, and that's all they have, in vitro experts genetically screen the embryos looking not only for those compatible for a later stem cell transplant into Carmani Boozer who already had the disease, but embryos that could be transferred back in to CeCe free of the sickle cell gene. The Boozers got the best of both worlds last year. Healthy sickle cell-free twins were born and stem cells taken from their discarded umbilical cords were transplanted into Carmani curing him of the disorder. UN sets June 19the as Sickle Cell consultation with member states and international organizations, SCDIO will be structured to reinforce health systems and obtain the best health care for people affected with Sickle Cell disease. Great progresses have been achieved in recent years in developed countries “we need to double our efforts in developing countries where the disease is highly neglected and have a negative impact on the development” per Edwige Ebakisse-Badassou president of SCDIO. It’s only by doubling the efforts in fighting the disease that the tendency will be changed. To decrease the high mortality rate the SCDIO is urgently asking the international community to double its efforts in improving the care of patients affected by Sickle Cell disease. For more information please contact Didier Raymondo at didier.raymondo@drepanetwolrd.orgDonating bone marrow, saving lives

The above is the recent info I receive in the monthly e-mail, I hope the it make good reading for some and bringd hope to young mothers and children.
Kathy


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Kathy11

Re: More questions...testing...spleen issues?
« Reply #3 on: January 18, 2009, 10:51:29 PM »
.Pubmed_RVDocSum Ask the ExpertsQuestion - Are headaches more common in children with sickle cell disease?

 Answer -Headaches are fairly common in children with sickle cell disease. Doctors considering whether headache could be a sign of stroke in sickle cell disease are (a) often less worried when the headache is in a younger child rather than an adult, (b) less worried with the SC type than SS or S-beta-zero-thalassemia types, and (c) less worried when there are no signs of neurologic problems (change in strength, vision, balance, or ability to think. Nausea or vomiting can also be a sign of neurologic problems). Here is a link to another recent study. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17586193

some more interesting Answers
Kathy

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Offline Zaini

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Re: More questions...testing...spleen issues?
« Reply #4 on: January 19, 2009, 03:12:07 AM »
Thanks for the info Kathy  :hugfriend

Zaini.
^*^Xaini^*^

 

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