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-   -   blood clohing and low platelet level (

tirlitta 09-15-2009 11:01 AM

blood clohing and low platelet level

I did ask this question on forum for hemangiomas as well, although this would be the correct forum.

Our five year old daughter has generalized lymphatic anomaly or systemic lymphangiomatosis (same thing but the term they use idepends on the doctor). Her case is complicated with blood clothing activity of her lymphangioma (consumptive coagulopathy, chronic DIC). In consecuense her platelet level in her blood is really low, as well some other coagulation factors.

Is there anyone else with trouble of blood clothig or consumptive coagulopathy? How have you/your kids been treated for it and have your doctros been able to get the disorder under control?

This is really lousy situation to be -to have a severe complication for what the suitable treatment is the cure of the underlaying disease and there is no cure nor proved treatment for her disease.

I really hope I could find someone with helpfull advise.

nickbar 09-16-2009 03:27 AM

Have you heard back from Linda. If not, please email me and I will work on getting you some advice.

tirlitta 09-16-2009 07:22 PM

Yeps, she did e-mail me. Thank you for your consern.

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