"A Logen Brief"

Logen Duncan, born in 2003, was 18 months old when he was diagnosed with Cerebral Palsy, after an abnormal MRI. In 2007 another MRI was completed because Logen's "Cerebral Palsy" was found to be unusual per text book signs and symptoms. Milestones were not being reached and a multitude of testing began, the MRI at this time returned results of "normal" and the search for an appropriate diagnosis began. Logen began having seizures in May of 2008, which are still uncontrolled regardless of medications. In December 2008, after a "bad day" Logen was admitted to Arkansas Children's Hospital for 48 hours of observation via EEG, seeing as many as six specialists per day and again a battery of tests were performed.

Our Arkansas Doctors and St Louis Childrens Doctors began collaborating with each other on the next treatment plan and further testing to include genetic testing. Unfortunately, as each test was returned no additional information was found to help Logen.

In January 2009, a rare fatty tumor was surgically removed-adding yet to the long list of strange characteristics Logen exhibits. We were then referred to a Neurogeneticist and Diagnostician, Dr John Shoffner, as a "last resort" effort to find a diagnosis and hopefully a medical treatment for Logen. We were also informed the testing would cost around $20,000 and may not be covered by our insurance. At this point, we felt cost was not an option and we did not hesitate to move forward. Dr Shoffner was given all of Logen's medical records in June and within one week of him reviewing his records he requested Logen be in Atlanta, GA to undergo a Muscle Biopsy, Skin Biopsy, Lumbar Puncture for cerebral spinal fluid testing, multiple blood draws and various other testing pertinent in finding a diagnosis.

Dr Shoffner agreed with the previous doctor’s, Logen’s symptoms do not add up. Logen has made little progress in some areas and lost skills in other areas throughout the last year. We are hopeful, as is our medical team, that Dr Shoffner and his lab will be able to find what is causing Logen to be the way he is.

The surgery was performed July 2, 2009 and results will take up to 3 months.
Logen continues to be seen by a variety of Specialists in St Louis, Mo, Little Rock, Ar, and Atlanta, Ga.

St Louis Bound (Again!) & Logen Update

Posted On 5:39 PM by * ~ *Jessica* ~ * | 0 comments

Hey All! Hope you all are doing well... :) We are on the road to St Louis (again!).

Logen has 2 appointments on Monday. He sees the Neuro and Epilepsy Doc this trip.

In the past 2 weeks to 3 weeks he's started having seizures again, so we made a med increase. He's also been having some "quirky" little jerking movements, increased drooling, and just some random things I don't like. So, I was glad it started around the time for our appointments. (If it had to start at all...)

Logen was moved to a new school this year (b/c of injuries last year and lack of progress). So far, so good. He seems to be doing very well. He appears to be happy about staying there and I don't get that "yuck" feeling I got when he was at "the other place".

I will update after our appt! Please pray for good news. Our 3 month post-surgery date is Oct 2, so we *should* be getting something soon! I am getting sooooo very anxious.
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Posted On 9:15 PM by * ~ *Jessica* ~ * | 0 comments

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

Thank you all for the continued prayers.

{Original post date July 16th'ish', 2009}
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Posted On 9:32 PM by * ~ *Jessica* ~ * | 0 comments

I hope to use this blog to keep you all updated about Logen. Over the next week or so, I plan to take some of the "old" posts off of our family blog and move them here so the "new readers" get to know Logen a little better. I will post the original post dates with them so you can see what's been going on for the last few years.

Please keep praying for Logen. :)
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