Discussion Forums > Thalassemia Major
Mom of beta Thal major baby girl
Gurkiran:
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!
Princess'M':
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.
Himanshu Kumar:
--- Quote from: Gurkiran on January 20, 2013, 02:33:47 AM ---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!
--- End quote ---
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
Andy Battaglia:
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.
Pratik:
--- Quote from: Andy on January 20, 2013, 04:54:24 PM ---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.
--- End quote ---
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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