- EEG @ Phoenix Childrens
(First EEG/ with Hyps)
- MRI @ Phoenix
4/18//2005 - Analisys for Heavy Metal
(Showed increased levels)
- EEG @ Phoenix Childrens
5/4/2005 - VEEG @ St Joe's Hospital/Barrows Neurological (24 hour Video EEG before starting ACTH)
- Chest X-Ray (questioning enlarged
heart) (Came back negative)
5/19/2005 - EEG @ St Joe's Hospital/Barrows Neurological (Showed Major Improvement)
6/2/2005 - PET SCAN/EEG @ UCLA Medical
(Negative - PET Showed Brain Atrophy)
- MRI @ UCLA Medical
6/7/2005 - EEG @ St Joe's Hosptial/Barrows Neurological (EEG was Normal)
In order given. ACTH at the bottom of page.
- Loss of appetite in the beginning. Stopped sweating (hot all the time).
B-6 - Not on long enough for side effects. Given by the 1st
Dr. on a low dosage.
- SEE BELOW
- Helped with Reflux. No
known side effects.
- Made him extremely lethargic. Almost
non-responsive. Even though BP from ACTH was in the 130 range, had to
take him off.
- The biggest side effect with Zonegran was
figuring out how to get him to take it. It's the worst tasting off all
his meds. After several weeks of trying different things, (and his not
eating anything other then a bottle) Grade B Maple Syrup did the trick.
one of our left over syringes from ACTH, disposed of the
needle, sucked out a small amount of Syrup (Grade B Syrup is much
darker, and more natural than the normal table syrup. It can be found
at most health food stores) and put it into
a small glass. Then we
break open the Zonegran pill and dump the powder into the syrup, mix it
up, suck it back into the syringe, and into his mouth. It took a few
weeks but now he opens wide for it.
- ACTH was by far the worst when it came
to side effects. The obvious one is the weight gain. The two pictures
in this section are Before ACTH and 45 days into ACTH.
Visually this was the most disturbing side effect. The next few photos were taken at the end of ACTH.
Shortly after the last injection he started to decrease in size. The next picture is 2 weeks after ACTH.
Then 4 weeks.
Then 8 weeks post ACTH.
Logan's 1st Birthday (October 2005) 90 Days Post ACTH
And Logan in December 2005 (5 months after ACTH)
When he first started ACTH we couldn't feed him enough. He was fussy
and wanted to eat all the time. At times he would drink 20oz of breast
milk and one hour later drink 20 more. This continued for the first several days. He cried a lot and some days the only thing that would stop him from
crying was the swing (a life saver for us) and eating. He spent many
nights in our room swinging.
The other major side effects were heavy labored breathing. Logan sounded
like he had run a marathon all the time. It was a fast paced short
blood pressure was high for the entire time on ACTH. At one
point it was 149 over 115. Because of the added weight gain it made
getting an accurate BP reading almost impossible. He had a Chest X-Ray
done as there was a question of an enlarged heart (came back negative)
and when he was @ UCLA Medical Center for testing he had noted brain
atrophy. (will be tested again 2006)
Although it was difficult
for everyone involved we are so thankful that he has become seizure free and
pray that his progression continues. There are many other
medications and alternative treatments such as the Ketogenic Diet (our
next step if ACTH didn't work) to try. As a
parent/grandparent/sister/brother/etc., the choices made are difficult
ones. There are some kids who become seizure free and live "normal" healthy
lives. There are others who are not so fortunate. All we can do is make the most informed decision possible.
(page 4 Links/Appreciation)
If you would like to e-mail Logan's family for questions or comments
please feel free to do so.The address is firstname.lastname@example.org