Mom of beta Thal major baby girl

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!

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.

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

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.

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.

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.

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

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

Praying for your family ...

love,

Sharmin

Praying for baby Hunar......God willing baby is well and healthy. Ameen.

Praying for Hunar...Hope it turns out to be a non-issue.