Seizure and E Beta Thalassemia

Dear Andy,

How are you? Hope you are doing well.

Is there any relation between seizure and thalassemia?When my baby was 3/4 months old then she was suffered from seizure 2/3 times.Her EEG and ultra sound report of  head is normal.But doctor could not explain the reason.But another doctor said it may cause for low HB. Now she continuing medicine for seizure which have to her 2 yrs old.I am afraid for that.Bcoz I don't know what will be happen when the medicine will stop after her 2 yrs old.

As I mention earlier today I will get her serum ferritin result as she have already taken 9 transfusion.Is there will be any problem if she start her chelation medicine with her seizure medicine?

Now she is 18 months 20 days old but only she talk just mum mum (sometimes).But her hearing is ok.All day she enjoy animation film,cartoon and song.She do many sounds and sometimes also sing as her wish.She say always mum mum as her all requirements.But not call me mum specificly and no other word.Have you any information about the said problem?

As you know she have e beta thal (Intermedia),seizure and also this confusion of her talk I am really in problem.

You know Andy,now may be I am leading my life as normal but last 1 year I was feel mentally sick when I have face all problems of my baby.Only for my family support and now your this site help me to be lead normal life.Last 1 year I always cry cry and cry, no sleep.....etc..I never think that my baby will suffer this much of problems...

Best Regards

Dear Andy,

Please note , my baby is now taking for seizure -

Phenobarbital 10 ml per day in 2 divided doses.Each 5ml contains 20mg phenobarbital.

Doctor advised to continue it upto 2 yrs old.Please give me suggestion if she start her chelation with Asunra (In Bangladesh Asunra is available) then continuing the both medicine will have any problem?

Thanks

I do think that low Hb could be a cause of seizures, although there are other non-thal related reasons children have seizures. This is a problem more common in intermedia patients who are not transfused regularly.
This may be of interest to the doctor, http://www.bloodjournal.org/content/99/1/36?sso-checked=true

Thromboembolic Manifestations In Β Thalassemia

Cerebral thrombosis

There have been numerous reports of thromboembolic complications associated with thalassemia, many describing cerebral thrombotic events. As early as 1972, Logothetis et al,6 reviewing 138 cases of β-thalassemia major (β-TM) in Greece, described a “stroke syndrome” in 2 patients and neurologic deficits compatible with transient ischemic attacks in about 20% of the cases. An Italian multicenter study of 735 patients with β-TM reported 16 individuals with cerebral thromboembolic events accompanied by a clinical picture of headache, seizures, and hemiparesis.7 Cerebral thrombosis was also found in patients with β thalassemia/hemoglobin E disease and in α thalassemia.8 9 All these reports were from patients who were not given regular transfusions and were not associated with an individual blood transfusion. Other reports have described cases of hypertension, convulsion, and cerebral hemorrhage in thalassemic patients following blood transfusion.10-13 Asymptomatic brain damage has also been reported; results from magnetic resonance imaging (MRI) on 41 patients with β-thalassemia intermedia (β-TI) revealed asymptomatic brain damage including ischemic lesions as a frequent occurrence affecting 37% of patients.14 Damage was inversely correlated with hemoglobin levels in patients with β-TI and increased with age.

I can't say if the seizures may have had some lasting effect or perhaps delayed development. Talk to her a lot. Repeat simple words to her. The more she hears these, the more likely she will copy them. If the child's Hb is kept high enough at all times, above 9.5, she may not need the drug. Talk to your doctor about this and continue to ask about your concerns about her development. You can consider starting her on very low dose Asunra, 10 mg/kg daily, to get her body used to the drug. It can be taken along with the other drug.

Dear Andy,

Thanks for your support.Last night I got my babies ferritin report.That is 459 and hb is 10.03 After 6 weeks of transfusion.Last time she get transfusion on hb 7 .Do you think Asunra is applicable now?She is 18 months 21 days old and weight 13 kg.Her all development is normal.But speaks only mum mum...

Best regards

Dear Andy,

Its my pleasure to inform you that from last week my baby is talking continuously.All day she talk and make various word....Now she is 20 months old and every movement is ok just we are waiting for her speech...

Pray for my baby....I need all of your supports always...

I am very happy to read this news. 

Lokkhi maa,

That is such good news that our precious little one is talking!  Our prayers are with her.  May she thrive and develop on leaps and bounds and have a very bright future.

Love,

Sharmin

Thanks a lot Andy and Sharmin...

Lovely news in my morning. ..Happy for you Lokkhi maa

Manal

Thanks Manal...

Keep us always in your prayers..

Hello Andy,

My baby is now 23 months old and making various noise which is really out of control for us as she is so energetic and active.She says so many words,making sounds,shout,sing (when she wishes) and sometimes also called mum mum and papa but not specifically me or her father.She always marked what she needs but not in words.She understand our words but we noticed that she is not understand that we are her parents.She hold my hand then try to mark her wants.Doctor said all are meaningless.Yesterday doctor advice for her speech therapy.How it work? Please advice...

Lokkhi,

Since she started out making sounds very slowly and now is making many sounds and words, it may be a bit early to decide she needs speech therapy. Her development was delayed a bit but she should catch up. Speech therapy is very simple and teaches the child to repeat clear sounds. You can find examples of speech therapy in videos on Youtube.

I would say wait a couple months and see how development progresses. Continue to speak clearly to her and see if she will repeat words.

Dear Andy,

Her speech therapy date is 13/09/2015.What will we do?She speak herself but not to us.We are always talking with her but I think she is not interested.Maximum time she want to speak with her eye contact...

Hello Andy,

Have you any idea about occupational therapy.Doctor advised 10 occupational therapy for my babies hyper activity.He said first my baby should be stable by giving the therapy.Already I have started speech therapy.But don't know it will be workable or not.Also I am thinking for homeopathy for speech and hyper.What do you think...Now my baby do many many sounds..Suddenly papa papa but not call her papa.That's meaningless....

We are really in big trouble for managing thalassemia, seizure,delay speech, hyper activity....

I would suggest that you continue the speech therapy and see if it does help, before deciding on further therapy. Some kids develop more slowly and the long term effects of the seizures are still not known. At this young age, I see no reason to push things. Give the child a chance to get caught up before making any judgments.