Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Gurkiran on December 16, 2012, 01:37:52 AM
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Hello Everyone!
My daughter ( 7 week old) has beta Thal major. I have been using this site for more info and to know aout the quality of life for these patients. Somewhere in the posts I read that transfusion interval for one of the member's son was increased from 2 weeks to 5 weeks by taking homeopathic medicine. Can they please tell us the name/details of that doctor?
My daughter is just being monitored for Hb right now. Oakland CH say they will monitor her and start transfusion when Hb falls below 7.
Also, I wanted to thank everyone on this site for the great work they are doing for parents and patients like us who need support at this time of their lives.
thanks
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welcome to Thalpal Gurkiran. Since you are going to oakland, you are at the right place. Your child will grow and thrive and will get all the treatment she needs. so, do not worry. Just enjoy her and treasure all the moment. The time passes very quickly.
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welcome to Thalpal Gurkiran. Since you are going to oakland, you are at the right place. Your child will grow and thrive and will get all the treatment she needs. so, do not worry. Just enjoy her and treasure all the moment. The time passes very quickly.
Exactly.
I stopped crying during transfusion when I was hardly two and half or three. I quickly adapted it as my routine and part of my life. Instead I used to enjoy them because I used to eat all my favorite food that day during transfusion. :P
I don't know how fast I grew.
Don't worry, the path is easy and with the modern treatment that is available today and also the trials undergoing to eliminate thal major and curing it is not very far. It's only a matter of time till someone breaks out through success.
Thal majors are now living in their 50's and 60's, considering they were born in the era where the word chelator was hardly heard. Then you can expect a lot and better life expectancy with today's treatment and drugs.
Just enjoy your child. I don't even remember I've thal major until my transfusion day comes which also hardly takes 5-6 hours and that's it. :)
-P.
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Thanks so much Pratik and Bostonian. Your encouraging words mean a lot.
Right now, there are good moments and bad moments. When I read something positive like this, I feel we can conquer all but then sometimes, I feel for the pain/ discomfort that my little one will have to go through.
I just want her to lead a happy and normal life. And our family is committed to providing her that. :)
We are going to be seen at Oakland early next month. Hopefully, her Hb hasn't dropped much.
GURKIRAN
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Prateek........I salute ur positive attitude.....it is an inspiration to others
good luck
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Prateek........I salute ur positive attitude.....it is an inspiration to others
good luck
Thank you Aabha.
It's very little that I could do, providing others an encouragement and the boost that they need. :)
-P.
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My daughter's Hb has dropped from 10.1 to 8.6 in just 4 weeks. Doctors at Oakland are going to monitor her CBC in 15 days now.
Is there anything I can do to slow the drop in Hb so fast?
Please advise.
Thanks,
Gurkiran
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Gurkiran,
At this age, there isn't much you can do to slow down the rate of drop in her hemoglobin. You may begin to notice some paleness in her skin and of her lips if her hemoglobin drops, continue to monitor her activity level and her feeding.
My 14 year old son has thal major, her was diagnosed at age 3 months and he has been transfused since that time. He is a very normal and active 14 year old boy with thalassemia being a very small part of his life. We usually forget that he has thalassemia until transfusion day.
As your daughter grows it will be important to give her a nutritious diet, vitamin supplements and keep her iron levels low. The doctors at Oakland and thalpal can guide you through that. Your daughter will grow up to be a healthy and very normal young lady, and she will live a long healthy life. We are all here to support you along the way.
Best,
Sharmin
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Gurkiran, we are in the same boat. Our girl is 15 weeks old today. In November her hb was 9.5 and a month later it had dropped to 8.7 (she was 12 weeks at the time). Her next checkup is in two weeks. I salute your doc for being proactive and ordering the CBC every 2 weeks. Ours hasn't said anything yet about checking more frequently but after the next appt and seeing where the hb is, I may request this also. God bless our babies and give us strength to give them everything for the happiest and healthiest lives :)
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Thanks Sharmin for your encouraging words. I am so glad to have come across thalpal.com. You guys are already proving to be such a source of courage. Thank you!
I am monitoring Hunar's feeding and sleep schedule. To make things a little bit more complicated, she was born 4 weeks early so sometimes I can't tell if she is sleeping so much because she is lethargic from anemia or because she is a preemie.
We are taking her for another blood draw this week. Will keep you all posted.
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Princessm, hope your daughter is doing great. Sharing each other's journey will be a great support network.
Do you see any paleness on her skin yet? I am always worried about missing any signs and not following up on any symptoms.
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You have plenty of good advice from our members.
Please note that your daughter is still producing fetal haemoglobin, therefore she will perhaps be just monitored for a while. Oakland is good place for thalassemia management, you are in good hands. Your child will at one point stop fetal HB production and when the time comes to switch to adult HB then you would see HB numbers sliding down and require blood transfusion.
As long as she is monitored and her HB remains above 9 or so, do not be alarmed. If the HB level is below 9 in two continuous counts then your child may need transfusion onwards.
Please note thalassemia is a genetic condition, homeopathic although is an established science but does not have a cure for thalassemia. You may consider this option for general health of your child but do not expect things like transfusion duration increased from 2 weeks to 5 weeks.
Last advice, always seek knowledge and ask lots of questions (on this forum or to your doctor). The more knowledge you have about your daughter condition, the more you will be able to take care of her and better manage this condition.
Keep visiting.
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I just want to note that you are getting great advice from these posts and everyone is right. You won't find better care than in Oakland, and in fact, probably the most important thing we could tell you is to go to Oakland. The one thing I learned observing Dr Vichinsky with the father of a newborn is that the most important thing is that the parents bond with their child. There's plenty of time for the medical side, but sometimes parents get so caught up looking for answers that they spend less time with the baby than they should, and that is the most important thing all parents can do for their kids.
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Thanks Canadian_family and Andy.
During her last visit, he Hb was 8.6 and we are going again today for blood draw. So, if it is below 9 now, they will start transfusion? I thought they wait until it drops below 7.
Also, regarding homeopathic medicine, that's where our research has led us that it might just be good for overall health.
I cannot be grateful enough for you guys and this website for the work you are doing. The vast knowledge I have obtained through you guys is priceless.
Andy, I will do my best to spend quality time with her alongside getting the best medical care for her. I don't even mind multiple late night feedings for her. ;D
Gurkiran
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Gurkiran,
In general the rule for beginning transfusions is two consecutive Hb readings below 7. However, in recent years, it has been recognized that there is little reason to wait until it's that low if it is certain that transfusions will soon become necessary, and some doctors will start transfusing once the Hb drops below 9-9.5. The reasoning is that low Hb can slow growth at a critical time in the baby's development, and transfusing earlier has proved to help provide a normal growth rate. At the Centers, each patient is an individual. The decision to transfuse will be based on your child's requirements and not just the formula.
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Hello everyone,
Just wanted to give a quick update and seek advice on the situation we are in since past 2 days.
So, Hunar started having tremors on Thursday evening which started increasing in frequency and duration by Friday afternoon. We rushed her to Oakland on the advice of their hematologist. Her Hb was 7.2, dropped from 7.9. But they are not sure if her tremors are being caused by thalassemia.
They have her on Video EEG since morning. They plan to monitor her for 24 hours and see what it might be. Her tremors feel like seizes but doctors are not saying anything yet.
If any of you have heard or know about the relation of thalassemia with tremors/seizures, then please advise.
Past 2 days have been horrible for us. I just can't bear to see my baby girl in so much pain.
In the meantime, they are starting her first transfusion in a couple of hours.
Thanks,
GURKIRAN
Please pray for my daughter!
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I'm so upset to hear about Hunar... Was waiting to hear back from you but now I know what was happening. Will be praying for her continuously... Give her lots of love and please keep us updated.
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Hello everyone,
Just wanted to give a quick update and seek advice on the situation we are in since past 2 days.
So, Hunar started having tremors on Thursday evening which started increasing in frequency and duration by Friday afternoon. We rushed her to Oakland on the advice of their hematologist. Her Hb was 7.2, dropped from 7.9. But they are not sure if her tremors are being caused by thalassemia.
They have her on Video EEG since morning. They plan to monitor her for 24 hours and see what it might be. Her tremors feel like seizes but doctors are not saying anything yet.
If any of you have heard or know about the relation of thalassemia with tremors/seizures, then please advise.
Past 2 days have been horrible for us. I just can't bear to see my baby girl in so much pain.
In the meantime, they are starting her first transfusion in a couple of hours.
Thanks,
GURKIRAN
Please pray for my daughter!
Dear Gurkiran,
By the way of your description it seems it could be seizure. My daughter, Avni, too experienced 2 bouts of seizure when she was admitted for transfusion for the very first time. My pediatric had advised CT scan of brain and thankfully there was nothing to be found out. Through my experience I can tell you that seizure has got nothing to do with Thalassemia as I have seen this happening with two of my nieces as well who are non thals. Many babies have seizure like attack during the first 4-5 month. My eldest niece kept having seizure like bouts till she was good 4 years old and then subsequently it stopped.
My daughter's first bout of seizure was so severe that she became still for almost 2 minutes, there was no movement of limbs, eye lids or the pupil. The sister just picked her up run towards the ICU in case anything needed to be done. We almost felt that we lost her but thankfully it did not turn out to be anything serious.
I can also tell you that bouts similar to seizure can occur if the child is allergic to some of the products or medicines or even when the child starts having solids.
Suggest you keep monitoring Hunar's activity and wait for EEG reports. Most of us have gone though similar phases and have come out of it successfully. I am sure your difficult time too won't last for long.
Best wishes,
Himanshu
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Anytime seizures occur in a thal, viral illness must be considered. I am also concerned about numerous reports of seizures in babies after vaccinations. There has never been a single study done on the effects of combining the many vaccines that are given to babies. We're basically going on faith that the drug companies that makes billions from vaccines have our best interests at heart. For me, it is a real stretch oif faith and I wish doctors would demand independent research of vaccines, rather than having blind acceptance.
I hope your baby recovers quickly.
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Anytime seizures occur in a thal, viral illness must be considered. I am also concerned about numerous reports of seizures in babies after vaccinations. There has never been a single study done on the effects of combining the many vaccines that are given to babies. We're basically going on faith that the drug companies that makes billions from vaccines have our best interests at heart. For me, it is a real stretch oif faith and I wish doctors would demand independent research of vaccines, rather than having blind acceptance.
I hope your baby recovers quickly.
Andy,
Can you shed some light in the seizures issue? Can that happen to us or maybe has anything to do with the pain near my stomach area?
-P.
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Pratik
There can be various causes of seizures. As I mentioned, viral illnesses is one and many people see a correlation between the amount of vaccines given to babies and seizures. In the cases mentioned here, low Hb may be a contributing factor.
Your pain remains a mystery and most possible causes seem to be ruled out. You should not relate that to seizures, as there is no likelihood of that happening to you as a result of your abdomen pain.
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Quick update again. Hunar's transfusion went well and her Hb is 11.9 now.
Some concerning news is that doctors are still trying to find the cause of her seizures. She is being monitored with Video EEG and will go for an MRI and lumbar puncture tomorrow.
They are saying thalassemia is not even an issue they are thinking about right now. According to them, there is some brain abnormality showing up on EEG.
I know that this forum is to discuss thalassemia and its issues, but some extra prayers from all you wonderful people won't hurt.
Thanks for the wishes Himanshu & Andy.
Please please pray for my baby girl's recovery. Waiting for a miracle to happen right now.
Gurkiran
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Quick update again. Hunar's transfusion went well and her Hb is 11.9 now.
Some concerning news is that doctors are still trying to find the cause of her seizures. She is being monitored with Video EEG and will go for an MRI and lumbar puncture tomorrow.
They are saying thalassemia is not even an issue they are thinking about right now. According to them, there is some brain abnormality showing up on EEG.
I know that this forum is to discuss thalassemia and its issues, but some extra prayers from all you wonderful people won't hurt.
Thanks for the wishes Himanshu & Andy.
Please please pray for my baby girl's recovery. Waiting for a miracle to happen right now.
Gurkiran
Absolutely in our thoughts and prayers. Please update us when you can!
Nicole
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Praying for your family ...
love,
Sharmin
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Praying for baby Hunar......God willing baby is well and healthy. Ameen.
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Praying for Hunar...Hope it turns out to be a non-issue.