Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: kitkat_2727 on June 30, 2009, 02:57:36 PM
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Hi,
I am a thal intermediate and 8 weeks pregnant. I am anxious and do not know what to expect with this pregnancy, as it is my first time.
I will be seeing doctors at a high risk pregnancy clinic soon. I do not get transfused, but understand that transfusions are crucial during my pregnancy term.
Could you share advice as to what I should be doing in this first trimester?
Are there any thal intermediates who were not transfused but needed transfusions in pregnancy? What were your experiences?
Thanks so much!
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Hi kitkat,
It is very important to take a high dose of folic acid during pregnancy. As high as 5 mg is standard. I would also recommend that you take a good B complex supplement. It helps to build red blood cells and also helps maintain the energy level. Try to eat a nutritious diet and resist cravings for junk foods. Transfusions may be necessary depending on how low your Hb drops. It's no big deal and will only be temporary. Because clotting issues can be a problem for thals during pregnancy, I also recommend natural vitamin E complex (400 IU daily). You might also want to ask the doctors if you should take one aspirin daily, as this will help prevent clotting problems that can lead to miscarriage. You may also want to search this site for "thal minor pregnancy" as many of the issues are the same. Towards the end of your pregnancy, monitoring of the baby will tell the doctors if you should deliver before labor begins. If this is the case, a C-section is usually done. This sometimes happens because the baby will stop growing late in the pregnancy because of a reduced blood flow from the placenta. As long as you are closely monitored, this should also be no problem.
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I have Thalassemia intermediate and delivered a healthy son on his due date. Prior to pregnancy I never received transfusions. I was transfused 4 times during pregnancy. The fear was not for me, but for the baby. If my level ever dropped below 7 I had a transfusion. The doctors warned me of blood clots in the uterus which would cause early delivery, as early as 20 weeks. I also took 4 mg of folic acid (folgard) which included b vitamins. It is important to eat healthy as well. My body retained a terrible amount of water so i was watched carefully for toxemia too. It was a fairly easy pregnancy despite all the precautions. My son was born on his due date by c-section, not planned. Getting a transfusion can seem scary, but it is the best thing for your body and the baby.
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Hi Morellilisa,
Welcome on the forum, :welcome2 and congrats on your little baby boy :hugfriend.
Zaini.
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Congrats on your baby boy:)
Sharmin
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Kitkat- my first 2 pregnancies, while extremely exhausting, were fairly straight forward. Both were delieved naturally, right about at their due date, weighing in at 8 and 1/2 lbs.
Currently, I am 33 weeks pregnant and have gotten 5 transfusions. I get weekly blood draws and blood count checks from hemotology at my local hospital. It was kind of a shock to need these but they are really helping.
My symptoms were shortness of breath (I couldn't even brush my teeth standing up), dizziness, racing pulse, craving of any kind of potato, and all food or drink had the aftertaste of chewing on a metal pipe. My OB did not recognize the symptoms and had me go to my regular physician after ignoring my complaints for 2 months. She basically told me I was overreating but if I felt the need, I could go see my regular physician. I ended up being admitted to the hospital until they could get my counts under control.
Needless to say, she is not my ob anymore. My suggestion would be to make sure you are an active part of your care; that your ob shares info with you and carefully listens. My new ob is great; very caring, very catious and very informative about all of my test results and what he is thinking.
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THANK YOU everyone. You have put my mind to ease. I went for an ultrasound last week (8 weeks pregnancy) and I hope everything goes ok from hereon. I am taking 5mg of folic acid and vitamin supplement without iron.
I still have one more decision to work through. I have posted my dilemma and perhaps you can comment on it!
Thanks Again. This forum is such a great means of communication.
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Did anyone get transfused post- pregnancy ? (ie. for those not transfused before as an intermediate who needed transfusion in pregnancy and also continued with transfusion)
Did anyone go on bed rest? In which trimester?
thanks again :hugfriend
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hi every one m also a thal patient.. m, ferritin level is 600 n calciuum is 8.59.. m married.. my ubby is very loving caring.... i got married in 2006 now i wish to have a child what shoul i do first for that.... i have read ur all posts n happy for thoso who have child healthy child godd bless u all... today my doc tell me that i m thal intermedia... now temme what should i do first ooops listen 1 thing i alsi have hepa c from 4 yrs.... but my sgpt wat 30 now a days.....i have taken interferon for 1 yr simple interferon but it didnot work for me,,, :( u gyss plzzz do me favor ... can a concieve baby with hepa c??? im taking 2 units of redd pack cell every month now .. m v tense how can its possible?? reply soon if possible then plz reply on my inbox coz i dun know how to fine replyis here on forum...m new here..
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Hi Atiya,
There is only a small chance that a baby would get hepatitis C from the mother. If the hepatitis is under control, there is almost no chance that the baby could catch it. So it is important to try to control the hepatitis. Some members here have taken a spice called Nigella (black onion seed, black cumin seed, kalonji) and it had made a difference in their liver enzyme levels (sgpt, sgot) and their hepatitis is under control. You can take 1/2 teaspoon of the ground seeds mixed with honey, once or twice a day. This is easy to use and may help. You also have to wait at least 6 months after stopping interferon before you try to get pregnant because interferon can cause birth defects.
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hello andy how r u m fine today i got tranfused 1 unit of red lood pac cell...m happy to that if hepa c is undercontrol then i can....yeah about nigella umair also told me about that... 11 seeds of cumin seeds mixed wid half teaspoon of honey,,, inshallah i will start it soon....what is thal intermedia?? i ave heard b4 here in form is a indian gal who hav thal intermedia...n hav a child a healthy child mashallah... so i thought i should disceuss here all that method u guys knows ver well about the disease...is there n e ultrasound is requierd for pragnancy..???? ultra of utarus is utarus is in normal positin..?? does thal effect on our these organ? like utarus.. periods etc../// m v shamed to tell u that but how can i post u personal msg????? zaini sis guide me about this????? utarus or should i consult wid any gynoclogist???? i have a lots of qustion in my mind...... but i dun know how to ask.. :( dear andy.....i have heard alot about u from umair.. nice frnd.. :) he is really a nice frnd..:) reply soon Andy iwll wa8... do u hav n e e mail id? like hotmmail?
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KitKat- my hemotologist thinks that I will need a few transfusions post-pregnancy because I plan on breastfeeding and that takes quite a bit out of you. I am 34 weeks today and thus far have not been put on bed rest. I do notice as my counts drop the braxton hick contractions get pretty wild (20 or so a day) but haven't yet sent me into full labor.
My dr has been following me more closely; the appts every 2 weeks started sooner and the weekly appts started at 32 weeks rather than the normal 36. This week he had me go for another ultrasound and then next week I start going to labor and delivery every week for NST's (non-stress tests) which monitor the babies movement and how it's heartbeat is effected by the movement.
Hope that helps a little
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I can be contacted by email at andy@thalpal.com
Umair and Zaini, can you help teach Atiya how to get around on the site? How to do PMs etc. Thanks.
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Andy,
I did PM her about all the details yesterday,and she has my cell number too.
Atiya,
Please PM me if you have any probs.
Zaini.
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hello every one zaini sis last night i did msg to u did u get it???? or wht is PM????? personal msgs????? thanks andy.......
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Atiya,
I am sorry but i didn't get any message last night,yes PM means Private message or IM as you can see on left side of your screen under my name,by clicking on this icon "IM" you can send me a private message,i did sent you a couple of PM did you get them?
Zaini.
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I haven't read all the messages, but when it comes to pregnancy, there is one important thing to remember:
don't let them vaccinate your new born child with mercury containing vaccines - which may occur right after giving birth.
There are already proofs that these vaccines are harmful, and a lot has been done to conceal the truth.
One of the links:
http://www.commondreams.org/views05/0616-31.htm
Bear in mind, that we all are probably vaccinated in this way, but now children are vaccinated even more frequently....
I've seen a few other threads on pregnancy, I hope this news will reach other pregnant women from the other threads. And this is actually good news for you, because you can do something about. So many people did not have this chance.
B.
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Many parents have seen normal children suddenly become autistic after being vaccinated. Of course, the mercury industry has had such power that they have been able to keep this information suppressed and belittled. To the parent of the autistic child, they can see themselves cause and effect but the medical industry is not about to agree and expose themselves to the monstrous lawsuits that would follow.
Mercury is a deadly poison and should not be ingested by any means.
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Thanks so much for sharing this information. This is really scary, but from what i read, there are no alternatives for these important vaccines??'''
Is there a way, children who have gone through all these vaccines to get rid of mercury toxcicity?? :huh
manal
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I never heard that before :( so much emphasis is put on kids getting vaccinated,its like a very crusial thing,ads are played on tv ,in newspapers,are there any particular vaccines containing mercury or all of them are this way ???
Zaini.
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I never heard that before :( so much emphasis is put on kids getting vaccinated,its like a very crusial thing,ads are played on tv ,in newspapers,are there any particular vaccines containing mercury or all of them are this way ???
So many questions and so little time to answer them... I will be brief, the detailed description can be found by searching the keywords from my description.
Mercury in vaccices:
Here is the list (2007 year) of vaccines contatining and not containing mercury:
http://www.autism-watch.org/news/thimerosal_canada.shtml
Allowed dosage of mercury is 0,1 ug per day per kilogram of body. For a young child the daily dosage is thus 0,3 ug.
Some of the vaccines contain 50 ug of mercury - 150 times more than allowed dosage.
Total dose in first 18 months of life (in some countries) may be as high as 250 μg Hg, but the greatest threat is by vaccines given in the first few hours of life - imagine that - little child is poisoned during first few hours of life!
Detoxication of mercury (chelation):
There are protocols of mercury chelation - these are based on chelators used by conventional doctor in case of acute mercury poisoning. However the very same doctors do not believe that something like vaccine poisoning or amalgam poisoning exists, although right now there is some pretty convincing evidence. These protocols are successfully used by parents of autistic children to help their children. If somebody would like to employ such protocols, there is one thing to remember - you have to remove amalgam teeth fillings, because chelators mobilize mercury from everywhere so it may be mobilized from teeth into bloodstrem - that we would like to avoid. Amalgam removal has to be done in proper way - so that it is not drilled and sprayed in the air and so that quite a lot of tooth near it is removed.
We of all people should know a lot about chelators, as majors take chelators to remove iron from the bloodstream. I wonder if this chelators are effective in removing mercury and is taking another chelators aloowed, when somebody is already taking one.
Other poisons in vaccines:
- Alluminium hydroxide - even when there is no mercury, there is still alluminium hydroxide, another poison
- Foreign bodies, like proteins from other animals, viruses attacking animals, chicken egg proteins and so on. These may cause leukemia (immune system is activated with these patogens during first few hours of life), autoimmune-neurological problems, allergy - young child is not allowed to drink cow's milk, but it is vaccinated REPEATEDLY with the same foreign proteins. Is there any sense in doing this? Here you can find more details (although there are a few sentences that undermine the reliability of the whole article, but it's worth reading anyway):
http://www.thinktwice.com/fraud2.htm
Vaccination itself:
Some of the scientists say that there are too many vaccines used. In such a great number, they put enormous stress on child's immune system. It's just as if the child was suffering from a few different diseases simultanously and then again and again and again a few at one moment, when in nature one child will suffer from only one disease at one moment and over longer periods of time (tens of years not tens of months).
Unfortunately now children get vaccines for eveything instead for a few most popular diseases. So what if one child in many gets sick? But it's cheaper for healthcare system and better for vaccine companies to vaccinate everyone, no matter the consequences.
Of course, vaccines undoubtedly have advantages too. They provide immunity against many diseases. But they should be used wisely.
Wisely means:
-without mercury in the first place
-vaccination against only most popular diseases in particular country
-accordingly with schedule for wise vaccination (these can be found somewhere, I hope)
-with vaccines that do not have many side effects (some of the vaccines have more, some fewer)
These all recommendations need to be checked. But consider yourselves warned! Spread the word in your own countries.
These all recommendations need to be adjusted individually. So a lot of research has to be done. Beware of quackery, as this is area that alternative medicine is very fond of. But there is also a lot of real research available and almost everything can be checked. Beware also of vaccine company sponsored research - this research is usually flawed by design, although claims to be real science.
B.
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Thanks so much Bigg for this informative post. I am so much interested in researching more and more in this though both my children has finished all their vaccines and definetly they contain thimerosal :wah ( we are considered developing countries and for sure vaccines with thimerosal are being circulated here)
In such a great number, they put enormous stress on child's immune system. It's just as if the child was suffering from a few different diseases simultanously and then again and again and again a few at one moment, when in nature one child will suffer from only one disease at one moment and over longer periods of time (tens of years not tens of months
It is very strange how we usually take things for granted and many of us just don't think that it is senseless to have all these vaccines in just the first two years of the child life and definetly this is exhausting to the immune system.
By coincedenc i was watching Oprah and she was interviewing Jenny McCarthy who wrote the book ''Louder Than Words: A Mother's Journey in Healing Autism'' and she also spoke that a vaccine shot was the reason for triggering autism in her child.
Off topic:
Jenny McCarthy gave hope to all mothers who have children with Autism that it could be reversible by many techinques that is wriiten in her book. It may not work for everyone but worth trying.
One of them is a suitable diet and it was found that cutting wheat and dairy products helped her child after only two weeks to start using some words to express some thoughts.
It is again suitable nutrition which seems to play an important role not only in thal but other fields too
manal
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hii there.im mudz from malaysia.i read many outstanding thread here.its really amazing and i think cant be write by ordinary people.atcually i got several question and hope u can answer for me..:
1)im doing thal test and doc said i have e-trait.is it alpha or beta thal carrier?im really confused.
2)my wife have alpha thal trait.what are chance our baby got thal major?\we go to genetic counceling and doc said its only 1% we got major thal baby.
3)my baby(30days old) hb rate drop from 13(2nd day after delivered) to 8(3day ago).is it a sign of thal major?
4)my baby have prolonged jaundice until now.total bilirubin only 111 but direct bilirubin is 74% of it.is it a symthom of thal?
i read in this site that thal major symptom only occor after 3month of age.is it true?
im really need your advice...here in malaysia few support group to get opinion..tq
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Salam Mudz,
I'm a new member here and also staying in Malaysia. Firstly, I am very sorry about your baby condition and I did have same experienced with my baby when she was about 3months old. The doc found that my baby's eyes were a bit offwhite(not clear white as they supposed). I am a Beta Thal carrier and my husband was just found having Hb E after my baby's born.
Yes, it is true. In Malaysia I found very less supports on Thal cases. To tell you the truth, I can't answer all your questions but my advise is you should do through check up on your baby. I supposed now he/she is more than 5 months. The only time we can get to know the exact condition of the baby is when she/he turns 1 year old.
As for now, my baby is 16months old and she's very active and healthy. I went to pediactric on her 1 yr old bday and the doc said it seems like our baby is in good condition. I am hoping and praying hard that she will be a healthy person.
Mudz, pray hard to God cos He will help us!
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Dear Friends,
Have any of tha majors undergone infertility treatment or rather been pregnant in India. I hope to leave to Craft Hospital in Cochin on 6th Dec (www.craftivf.com) seeking treatment for infertility inorder to try for a pregnancy. Have any of u with Diabetics been pregnant. How were you all treated. Were u abe to conceive after hormone treatment or did u all have to undergo IVF, ICSI Etc.
Please i need replies from you all.
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Hi Akka,
I am sorry i don't know anyone in this situation,but i wanna wish you luck :goodluck :hugfriend .
Zaini.
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Best of luck akka, hope you get answers from thal mums. All i know is that you should try as much as possible to lower the iron levels in order to help in all the issues concering fertility :hugfriend
manal
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Thanks Zaini and Manal. Inshallah am trying my best to lower fertain levels. Tgc.