Pearson Syndrom, mom in desperate need to find told or untold research

My prayers go out to you, your post hit me like a ton of bricks. My son also has pearsons and I have been researching for over a year now with nothing for it but thats not to say there isn't anything out there. I hope someone can come on here and give you some news that I cant Cynthia. God bless you all  and I will keep you all in my prayers.

Hello Sharon

Talk to me about his health issues history and what are his treatments.

Thanks

Cynthia

Cynthia, 

My daughter has pearson syndrome and miracuoulsy she is 5 1/2.  She has many issues and complications.  Each year has new and different obstacles for us to try and over come.  She was diagnosed when she was one.  She has been throuhg a lot.  She actually passed away on us three times, due to infections, and was brought back with CPR.  She is a fighter.  She is on 24 hour g-tube feedings, she gets an ample amount of medications and  supplementations.  She gets blood transfusions monthly.  Her liver is enlarged and has abnormal function levels.  She has sleep apnea and has issues with blood sugar level.  She recieves neupogen shots 3 times a week, for white blood cell production.  She has progessively gotten weaker physicallly.   She is still walking, but it hurts her and she is very unstable.   She is also on dialysis for her kidneys, but she was able to keep both of her kidneys. I am not sure how bad you child's kidney is but dialysis may be a possiblity, along with taking it out.   Transplants have been reported to cause greater complications and be ineffective due to the underlyning condition.  Unfournately,  there are no exact answers and when problems occur they are dealt with the best way possible.  Please feel free to contact me with more questions.  I am not a doctor and every case is different, but I have been dealing with this for a while now and might be able to help a little.  Teara

Thanks Teera

My son helth issues started at birth.  Before finding out Pearson syndrom at 25 months old he had a bone marrow transplant.  One year later was operated for cataracts in both eyes.He as 24 hour G tube feeding at 32 ml hour because he as malsorption problems.  He vomits 2 to 3 times a dat and has chronic diahera.  His kidneys are actually 2 rocks full of calcium.  He as liver problems also.  His liver and kidney are so enlarge that his stomach is hard and so big.  He weight at the age 21!2 year old 8.7 kg.  Dialysis will be accepted only if is a candidate to kidney transplant.  They refuse once because of numerous health issues but they are restudying the possibility because me and his dad are the donors.  Since june 18th Zach refuses to walk or move around.  He is weaken and seems to hurt.  He as also diabities and is transfused every 3 to 4 weeks.  He has numerous metabolic crisis and probably forgetting lots more.  He his not stable so hospitalize since december 17th 2009.  I am suffering more than ever.  Sometime I wonder if we are fithing for are personnal reason, are we doing him a faver to keep him alive????  Zach as  his facebook group: You can find by researching Pensée pour le petit Zachary.  Do you pictures of you girl?

Thanks for your support.

Cynthia

I am so sorry.  I know how you feel,  helpless.  My husband and I have asked the same question about doing what is right, for our needs or hers?  It is so tough.  We were in the hospital once for a 5 month period.  It is no fun.  My daughter is 53 lbs and only 36 3/4inches tall.  She has a big hard belly as well.  She too has chronic diareha and vomitting.  She has an appt. so I have to be going, but I would love to keep in touch and I will check out facebook when I can.  Thanks for sharing and our prayers our with you and your family.

Teara

How much was her creatine level before she starded dialisis?  Because of Zach muscular stature and weight the max his for him 120 yesterday he reached the 137 of creatinine. Today at 126 the specialist is coming to visit us this afternoon to talk about his kidney issues.

Where r you from?