Wednesday, October 10, 2012

Tests completed

 Call from neurology department came in at 11:30 this morning. By 5:00 this afternoon we had all tests and blood work done for  the ACTH drug.  CBC, TB, and even a chest x-ray.  As we explained to Cully's medical team.... At any moment that they ask us of ANYTHING we will drop everything and get to it.

Now we just wait for the time to admit to the hospital.

How desperate must we be to be excited about using this drug?

Here is what we are up against....


ACTH therapy in infantile spasms: side effects.



162 children with infantile spasms were treated with ACTH at the Children's Hospital, Helsinki, and at the Aurora Hospital, Helsinki, during 1960--76. In a large proportion (37%) of the children the treatment caused pronounced side effects, and the mortality was 4.9%. The most common complications were infections: septic infections, pneumonias, and urinary and gastrointestinal infections. Other side effects were arterial hypertension (11), osteoporosis (2), hypokalaemic alkalosis (2), and other marked electrolyte disturbances (10). In children necropsy showed fresh intracerebral haemorrhages. Four children developed oliguria and hyperkalaemia during and after withdrawal of ACTH. One of them had tubular necrosis confirmed by renal biopsy. Infections were significantly more common with large doses (120 units) of ACTH than with small ones (40 units). It is concluded that side effects, even severe ones, are more common during treatment than had been assumed. Careful watch is important before and after treatment. The benefit of very high dosages should also be reconsidered.

3 comments:

  1. I know that excitement that you speak of! We get so desperate for something, anything to stop our kids' suffering that we try are willing to accept the risk! http://faithfulmomof9.wordpress.com/2012/10/05/a-photo-essay-of-bethanys-hospital-visit/

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  2. I visited your page. I spent a good long time there learning about Bethany and the rest of your family. You have a great family. I will be excited to share your button on this page once I learn just how to do so. We are honored to have caught your attention.

    And yes, we also are willing to accept the risks and try all we can for Cully.... but frightened to death at the same time. It's really nice to have others out there who have an interest and can share their experiences with us to help us along.

    A huge "Hiya Bethany and family" from all of us Johnson Clan...

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  3. So glad you stopped by and figured out how to add my button! Funny but my second son's name is Brian Johnson!

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