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Thalassemia and developmental delays

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Offline EMommy

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Thalassemia and developmental delays
« on: September 02, 2007, 01:09:14 AM »
Hi All:
I am wondering if anyone has any information regarding the development of children with Thalassemia major.  Our daughter who was adopted is behind in her gross motor skills such as walking.  I guess I am wondering if her delays are due more to the Thalassemia or being in an orphanage for 9.5 months.  Is there a relationship between the lack of oxygen getting to the body and developing motor skills.  Is our daughter going to tire easily from exertion? 
She is getting transfused about every 3 weeks right now.  She is almost 18 months and has never wanted to crawl.  She walks, but is still very wobbly. 
Anyone have any ideas, advice for me?  I do not want to push her too much. 
We are going to try to get her a physical/occupational therapist to help her but I want to have good information to tell them. 
Thanks!
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Rebecca
Mom to 4- Two Beta Thal Major (chosen)
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Offline §ãJ¡Ð ساجد

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Re: Thalassemia and developmental delays
« Reply #1 on: September 02, 2007, 05:40:44 AM »
Hi,

Low hemoglobin levels can cause lethargy resulting in lack of interests in such motor skills. I myself was diagnosed as Thal. due to the same reason when my parents saw me taking no interest in walking and spend most of the time only sitting the baby walker or taking some steps and stopping for rest too quickly.
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Offline Sharmin

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Re: Thalassemia and developmental delays
« Reply #2 on: September 02, 2007, 05:42:51 AM »
Hi emommy,

your daughter is adorable.  Having thalassemia should not cause developmental delay in your child if she is properly transfused.  The delay may have been due to her early time in the orphanage.  I'm sure your love & attention will help her catch up very soon.  All the best.

Sharmin
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Sharmin
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Offline Zaini

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Re: Thalassemia and developmental delays
« Reply #3 on: September 02, 2007, 08:24:57 AM »
Hi Rebecca,

I think you should check your daughter's calcium and vitamin D levels,if they are below normal,that could be the reason for her late or slow walking.Just to let you know, you are an amazing person :) ,i wish i could have adopted a child with thal major,but treatment here in our country for thalassemia is quiet expensive,anyways,may be there would be some day that i'd be able to adopt these little angels who deserve best care and love.

Take care,

ZAINI.
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Offline Canadian_Family

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Re: Thalassemia and developmental delays
« Reply #4 on: September 02, 2007, 01:24:07 PM »
Hi,

There is a fair bit of children who don't take interest in crawling or their motor skills development is delayed. Every child develops on its own pace but just don't push it. Since you daughter is transfused regularly, and already walking (doesn't matter wobbly) she is just fine.

For your information the penguin style walk can last upto 3 years. Its very normal, JUST BE PREPARED TO DEAL WITH LOTS OF BUMPS AND BRUISES FROM NOW ON :smiley :smiley

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Offline Andy Battaglia

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Re: Thalassemia and developmental delays
« Reply #5 on: September 02, 2007, 05:33:35 PM »
Growth in thalassemics is a complex issue and is affected by many factors. It is more than low Hb or iron overload that is involved. We recently had threads about the growth and bone development issues at

http://www.thalassemiapatientsandfriends.com/index.php?topic=1138.msg9121#msg9121
and
http://www.thalassemiapatientsandfriends.com/index.php?topic=1185.0

Your daughter may be a little behind but she should still be able to grow and develop normally even if a bit slower than non-thals. If the problem continues over the coming years, growth hormones may be recommended. Physical therapy may be of some benefit, and keep in mind that exercise does make bones stronger. Proper medical care will mean a lot to your child and fortunately, you have her early enough in life to make a huge difference in her development. It is essential that thal children be put on the right growth path before puberty.
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Andy

All we are saying is give thals a chance.
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Kathy11

Re: Thalassemia and developmental delays
« Reply #6 on: September 03, 2007, 12:23:52 AM »
Hi Emommy
Your daughter is very pretty. congratulations.
Dont worry too much I believe that now ,that she is getting the best of care ,she will thrive and improve tremendously.
Goodluck :clap :clap :clap
Kathy
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Offline EMommy

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Re: Thalassemia and developmental delays
« Reply #7 on: September 05, 2007, 02:30:45 PM »
Thanks everyone!  Our daughter is growing and learning so much every day.  She is very petite, so sometimes I wonder and worry about her.  She is gaining almost 1 pound per month though.  Because she is adopted, we do not have the advantage of knowing a family history. 
I think she will catch up developmentally, but she is going to need love and patience.  I am SO proud to be her mommy and feel SO blessed to have her in my life.
Let me also say that I am so glad to be a part of this group.  I have learned a great deal. 
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Rebecca
Mom to 4- Two Beta Thal Major (chosen)
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Offline aus

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Re: Thalassemia and developmental delays
« Reply #8 on: October 26, 2007, 08:13:19 AM »
I have an adopted son who is thalassemia major. He is now 4 years old. He was diagnosed at 11 months and was not able to sit at that age. He had monthly transfusion since then and was only able to walk at 18 months. He was thought to have developmental delay then. He was also diagnosed with medium hearing loss on both sides of ears at the age of 3. He has had hearing aids for the last 8 months. He has definitely caught up now. He can sing, dance, write his name, recite my phone number, fight like his Power Rangers Ninjas. So, I can safely say, he is normal. With regular transfusions, they will catch up.
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Offline Zaini

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Re: Thalassemia and developmental delays
« Reply #9 on: October 26, 2007, 03:08:30 PM »
Hi Aus,

Welcome to the forum,it's good to have people like yourself and Rebecca here on the forum who are showing their greatness and kindness  by adopting thal majors,hats off to you people.

ZAINI.
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Offline EMommy

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Re: Thalassemia and developmental delays
« Reply #10 on: October 26, 2007, 10:50:42 PM »
Our daughter that we have home has also recently begun to flourish.  Ever since we got her hgb levels up and staying above 10, she is doing much better.  She began walking and is exploring her world like crazy.  She is taking a lot more and growing too.  She gained almost one pound in the last three weeks.  It has been wonderful.  We are getting her therapy because she is still considered to be delayed in her gross motor and fine motor, but they said she is smart and that she is on target emotionally/socially.  She is loved and it shows.
Thanks for your reply.
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Blessings,
Rebecca
Mom to 4- Two Beta Thal Major (chosen)
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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: Thalassemia and developmental delays
« Reply #11 on: October 27, 2007, 12:15:18 PM »
Rebecca and Aus,

I can't express the greatness of your character. Parents who adopt Thal. children rather than non-Thals. deserve the highest humanitarian prize ever! :biggrin You guys are simply amazing!
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Offline aus

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Re: Thalassemia and developmental delays
« Reply #12 on: December 16, 2007, 07:06:18 AM »
Between scheduling my son's speech therapy sessions, his hearing check-ups, and his transfusion dates, I am ever glad that I am self-employed. If any of my employees take off work as many days as I do, I would have fired him without question. It is tough, but it is worth it. I must not forget to thank my mother and my late father for all the help they have given me. Although some people considered me indestructable, I must confess that without my family's help, I wouldn't have been able to make it so easily.
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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Thalassemia and developmental delays
« Reply #13 on: December 16, 2007, 07:10:22 AM »
Aus,
Respects to you and your entire family!
I know it is not possible to do such a thing if every one is not supportive.

Good to know that there are people like you!

:)
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