Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Lokkhi maa on April 15, 2015, 03:49:28 AM
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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
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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
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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.
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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
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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... :smiley :smiley :heartpink :heartpink
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I am very happy to read this news. :biggrin
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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
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Thanks a lot Andy and Sharmin... :heartpink :heartpink
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Lovely news in my morning. ..Happy for you Lokkhi maa
Manal
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Thanks Manal...
Keep us always in your prayers.. :smiley
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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...
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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.
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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...
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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....
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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.
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Thanks Andy and pray for my baby :heartpink :heartpink
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Hello Andy,
My 26 months old baby doesn't respond when I call her name and lot of talk to her.But if TV turn on then she pay attention and move to the TV for watching.Hearing is normal. She turns the pages of a book, but didn't pay any attention when I read,she only smile. She shows me what she wants, but doesn't use words. She doesn't do what I ask her to do. But when I back to home and say come to me she run to me and hold me happily.She gets upset when I don't understand her and shout loudly. Is this normal? Does she just need more time to catch up?
All day she makes various words and sounds.Sometimes call mama,papa but not specifically call us.She make copy all of our movements but not able to copy speech.Every movements,sense,feelings,emotions are ok.She also play with us,with her dolls and toys also.Feels interest to child and when she saw babies in TV or outside she shows it to me,hug with the child,feel very much happy and start dancing.But one thing I have marked when she feels happy then she flapping her hands and shaking boy by dancing..Her speech therapist said this is not good its one kind of autism sign.But I have not seen any abnormalities except lacking of attention and speech.
Doctor advised for occupational 10 therapy but still not start.Thinking to visit a neuro medicine Doctor.
Whats your opinion Andy?Any opinion,advice,helpful link please share.
We are worried because she is growing up and time are passing. We won't late....
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Lokkhi,
She may just need more time to catch up. At her age, it is normal for her to express frustration. Pay close attention to what she is trying to tell you through her motions and her sounds. Make sure you speak clearly to her and let her know the names of things in her environment. She can learn by hearing words repeated to her. It seems like she is still trying to figure out how to communicate, so be patient and encourage her efforts. I think you can still wait a few months and see how she develops. At 2 1/2, if she is not making progress, then you should consider therapy to help her. She had a slow start and you don't know how much she is behind because of it and it may take a few months to see if she is catching up.
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Thanks a lot Andy... :) :)
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Hi Andy,
Is watching TV and look at the mirror are harmful for my baby?She always try to see her shadow and she likes it very much to do.We try but its really out of control.After evening she engage to see her shadow..
What to do?
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She's discovering new things. Little children will repeat the same thing many times. It's perfectly normal. Children learn by repetition. And it sounds like she's having fun.
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Hello Andy,
How you can give such a wonderful,positive reply !! :)
I have no words.Thank you so much Andy... :heartpink :heartpink
You know Andy, my baby now always trying to speak.Repeat a word and making various sounds and words.Though all words have no meaning.I am waiting when she she will specifically call me mama....
After reading your reply I am so much happy now and really after long time feeling better...
Thanks a lot Andy..
Which I have post to you about my baby same thing I present to her speech therapist.She observed my baby only 3/4 minutes.After that she advised us which was hard to accept.
"She said, look don't mind actually your baby is autism.Don't worry.Do you know our prime minister have 1 grand daughter who is also autism".
This information I first heard from her and really feeling hopeless.. :sadyup
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Hello Andy,
My baby never chew any food.She keep all in her mouth and if not give some water then she vomit all.So when we see she keeping food in her mouth then we give her 1 spoon water then she swallow.Its her eating process.As she not chew its also another problem not to talk.I read in google if baby chew then the mouth exercise help to speech.What to do?
We tried always but result is vomit everything.Even soft food she swallow by water.Any idea .. :mom
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She may need some physical therapy for this. She is getting to the age where this will be easier to do.
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Hello Andy,
We used electric tooth brush only 15 days and my babies swallow problem has removed.Now she chew her food and enjoying the taste... :smiley
Before 1 week ago we visited a Neuromedicine Doctor for my babies hyper activity and speech problem.He advised for CT scan.We did it and report is perfectly normal.No problems,no autism or abnormalities found.Doctor advised give her time for speech.Now my baby understanding the environment and sometimes speech new words.Doctor also said after stopping phenobarbital next May'16 then her hyper activity and speech will improve and no seizure during this 2 yrs its great...
Thanks to Allah and thanks to all of you... :hugfriend
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That is such great news Lokkhi Maa!
Wishing good health for your child in the future.
Best,
Sharmin
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That's really good news, Lokkhi maa. She's just a little behind and will catch up quickly. Once she is off the drug, she should progress normally.
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Thanks Andy and Sharmin .. :)
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Really a good news..
Congrats..
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Thanks msarika.. :)
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Hello Andy,
My baby development is much better then earlier.Now she is so much active and could understand the environment.She does not make sound but when we call her she make eye contact and could understand our language.
All of developments are ok and normal but speech not so much improve.But sometimes she make new sounds and words.
As phenobarbital delay speech so we are waiting for the weaning off the medicine.Already doctor has reduced 2 ml.Also we are very worried for the low dose result.Hope the low dose will not raise any problem...
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Dear All,
Now my baby taking Phenobarbital only 1 ml without any problem.
Please pray for her as she get normal good life..
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It's good to see progress. :thumbsup
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Thanks Andy.. :smiley :smiley
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Hello Andy,
At last after 3 yrs now my baby got free from phenobarbital without any problem.Now she is fine.
She understands our all instructions and words but only her speech still not any remarkable progress.Otherwise all development is ok.
Please pray..
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She is coming along well. I am happy to hear she is off the drug. If her speech does not develop, she may need some speech therapy in order to catch up.
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Thanks Andy.
Your words inspired us... :heartpink :heartpink