Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Mubeen on June 08, 2017, 04:54:24 AM
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My son is 20 months and is beta+ thal and sickle cell .he has
taken hydroxyurea and folic acid plus lots of vitamins last 8 months.
He is currently doing fine and much active. his hb which is 8 to 9 last one year consistently.
HBF was 35.7 % and HBA was at 17.3 % HB S 42.9 and HB A2 4.1 % and no any blood transfusion ever.
Me carrier and my wife sickle cell and my question is we can take a chance for 2nd baby?
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There is the same possibility with every pregnancy. The only way to be sure and avoid having another affected child is by using PGD and IVF, a costly process that can take multiple attempts to succeed.
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Thanks dear for help me. Please tell me in detail what is PGD and IVF?
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PGD is preimplantation genetic diagnosis. The embryos are checked for status, so a non-carrier embryo is implanted via IVF, in vitro fertilization.
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Thanks Dear for reply me.
we take chance because 25% Chance for major thal 25% chance for normal and 50% for carrier so can we Plan?
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You can't plan anything based on chance. I know many families with three thal majors. The mathematical chances mean nothing.
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you said that we can not plan?
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No, it's completely chance and can't be affected by anything you do. You could easily have another child with the same sickle cell beta thal.
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I know a family both of they are carrier and they not take any child within 12 yrs.
Last year they take a chance and after 13 yrs fortunately they got a child who is carrier.
But couple like us which chances not successful...
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It's all just chance.
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:sadyup :sadyup
My First child who is 4 yrs old have E Beta Thalassemiia and need monthly transfusion,She have also ADHD,mild Autism Symptom and Seizure disorder. ??? ???
Though she have lot of disorders but she is so much active and intelligent and special memory :). She have not forgot anything if she saw that just one time.Her seizure completely under control and now fine.Last seizure happen on 2014.Last month her EEG report is normal. :hugfriend
Every development normal but speech still not improve.She pointing,follow every instructions,understand our every languages,operate computer,play computer game but her words are few.
Now I have started Fish oil for her speech problem.
Dear Andy you know my present physical condition and above I shared about my baby but still I am interested for my 2nd child... :heartpink :heartpink
What to say !!!!! :dunno :dunno :dunno
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This is by no means to scare you but what does your child's doctors say about the epilepsy and the thalassemia??? Do they think there is a connection. Because I have heard in the past that there is a form of thalassemia with epilepsy.....
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Lokkhi,
I can't answer this. It's up to you to decide on your family size.
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Andy I just want to say there are lot of problems and risks but we parents are expect next child..
Its natural.. :heartpink :heartpink
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My son is beta plus and sickle cell. he is quite fine without transfusion in 20 months of age so I can Plan for 2nd Baby?
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It's all just chance.
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Mubeen, it's not possible to say the outcome wouldn't be worse, but it is likely it wouldn't be. A child could be just a carrier of either or carry neither, in addition to having the same condition as your child does now.
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They become wounds on their language, they are unable to eat food properly so his weight just 10 kg
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Me is carrier and my wife is sickle cell we are different category of thal our 2nd child can be a major thal? or same as 1st child beta+sickle cell?
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It can't be beta major. It can be the same, beta+ sickle cell or lesser, carrier of one or neither..
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Thanks Andy.
Please Tell me can be a normal? chance is possible?
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Sickle cell and carrier both different category? child can be with major thal and beta+sickle cell and normal?
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sickle cell and beta plus patients can Iron over load? Is it possible?
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If transfusions are required, iron overload can occur. If the Hb is chronically low, less than 9-9.5, iron loading can take place over time.
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Mubeen,
There are 3 possibilities for children you might have.
1) HbE sickle cell. 25% chance.
2) Carrier of HbE, or sickle cell, but not both. 50% chance.
3) Non-carrier of either. 25% chance.
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Thanks dear for reply me
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Can we give iron containing diet in this case? Like mango , liver. Dates
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Dear me and my partner carrier and sickle cell . but HbE sickle cell and
Carrier of HbE what is this? please describe me in detail
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Mubeen, do not avoid veg foods that contain iron. There are too many other nutrients in these foods that are needed, and veg iron is not highly absorbed.
One of you carries HbE. One of you carries sickle cell. That is why your child has HbE sickle cell. Both affect the beta globin gene.
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Again thanks dear
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not gaining weight indpite of giving good diet, maintaining HB 8 to 9 what can be the reason? can we say his is genetically smart because parents are skinny and smart. we are much confused
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Bone deformities can be observed in sickle beta plus Thalaseemia?
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Is it dangerous like major?
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HbE sickle cell varies greatly in outcomes. For some, transfusions are needed and for others, no blood is required. Even without the need for transfusion, when patients have lower than normal Hb levels, there can be slower growth and bone growth can also be affected. A good nutritious diet is essential. Make sure the child develops a taste for fresh fruit and vegetables.
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dear should we go for transfusion for better growth and weight?
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If the Hb maintains between 8-9, transfusions aren't usually started. Even many thal minor children have this problem of slow weight gain when young. Find healthy foods the child likes. Try things like smoothies you can make in a blender using fruits and vegetables. You can find many smoothie recipes online. Wheatgrass might also help.
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5.8.2017 18.05.2017 9.05.2017
Haemoglobin 7.9 8.5 8.0
haemotocrit 22.8 34.9 22.5
red cell count 3.44 3.81 3.45
white cell count 10.0 9.4 7.7
ploymorphs 45 27 40
lymphocytes 49 68 55
monocytes 04 03 03
eosinophils 02 02 02
platelet count 272 326 209
serum total bilirubin 1.9 1.2
serum ALT 18 20
Serum Alkaline Phosph 198 292
Dear no any problem, he is very energetic and no any issues
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According to these reports child is quite well , active and happy baby. only problem is that he is not gaining sufficient weight and not interested in eating.
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Dear his iron value is just 48
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Is that his ferritin level?
Iron loading will happen with an Hb below 9. Over time, it can even require chelation drugs to remove. Iron supplements should not be taken. They only add to the iron load.
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Dear please tell me what should I do for weight gain and proper growth?
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Please give some suggestions for CVS. Me and my Patner different trade of Thal. carrier and sickle cell and my son is sickle beta plus?
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CVS should be done between 10-13 weeks. Your doctor should be able to set up an appointment for you.
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but my question is relate to sickle cell and beta thal?
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CVS is used to see if the fetus carries any of the hemoglobin disorders. It's the same for any condition that is being checked, 10-13 weeks.
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CVS done by 2nd January and I am waiting for report that come after 15 to 20 days. than I decide decision