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NicoleMarie · 02-19-2013, 08:16 AM

Glad to hear that the seizures have stopped. I was headed down a similar path with my Cruz a couple months ago. Last July, he had his first seizure,then another in October. His bile acids after both seizures were not extremely high but still above the normal (1st Test were pre-3.5 & post-29.8. The results after the 2nd Test were pre-28.2 & post-58.6). This is when we were referred to a specialist where we had an ultrasound done. The ultrasound did not show any visible shunting outside the liver so they suspected Cruz had MVD.We started him on Hills prescription L/D and eliminated all treats. He has not has a seizure since! After 2 months of being on the diet completely we retested his bile acids and his numbers went down to pre-1.9 & post-45.4.

I hope the diet continues to work for Toby! One thing the specialist told us to keep in mind was that MVD can only be truly diagnosed by a liver biopsy and there is no surgery to fix MVD only diet & meds. I also read some things about a Protein C test that can be done to rule out PSS.

This forum was SO helpful when I need information. Just like others have suggested search MVD or PSS. Some members who have been through this with their little ones were so nice to share their stories with me. It was the only thing that gave me peace of mind! Best of luck to you & Toby!

02-19-2013, 08:16 AM	#28
NicoleMarie Yorkie Yakker Join Date: Oct 2012 Location: New York Posts: 52	Glad to hear that the seizures have stopped. I was headed down a similar path with my Cruz a couple months ago. Last July, he had his first seizure,then another in October. His bile acids after both seizures were not extremely high but still above the normal (1st Test were pre-3.5 & post-29.8. The results after the 2nd Test were pre-28.2 & post-58.6). This is when we were referred to a specialist where we had an ultrasound done. The ultrasound did not show any visible shunting outside the liver so they suspected Cruz had MVD.We started him on Hills prescription L/D and eliminated all treats. He has not has a seizure since! After 2 months of being on the diet completely we retested his bile acids and his numbers went down to pre-1.9 & post-45.4. I hope the diet continues to work for Toby! One thing the specialist told us to keep in mind was that MVD can only be truly diagnosed by a liver biopsy and there is no surgery to fix MVD only diet & meds. I also read some things about a Protein C test that can be done to rule out PSS. This forum was SO helpful when I need information. Just like others have suggested search MVD or PSS. Some members who have been through this with their little ones were so nice to share their stories with me. It was the only thing that gave me peace of mind! Best of luck to you & Toby! Last edited by NicoleMarie; 02-19-2013 at 08:19 AM.