Update on Colby

June 2, 2005

I haven't posted here in quite some time, but I do occasionally come

back and read and try to keep up with everyone. I just wanted to

let you all know what was going on with my son.

For those of you who don't know me, he is 17 years old and was

diagnosed with MS 4 years ago. We tried Avonex and Rebif, and his

condition worsened. He was on LDN for 9 months, and doing

wonderfully. In his teenage mind, he decided he was " cured " and

stopped taking the LDN regularly, and he also had to have

gallbladder surgery and experienced a mild increase of symptoms

after that. We saw a new neuro, and he insisted that we take him

off the LDN for awhile and try Copaxone alone.

He has done fairly well with the Copaxone, and has been using it for

3 months, but we have noticed huge differences in him without the

LDN. His cognitive skills and memory have declined, as well as a

return of heat intolerance and fatigue. Now whether this is because

of the absence of LDN or the introduction of the copaxone remains to

be seen. Regardless, he saw the neuro again yesterday and will be

going back on the LDN.

The neuro said he has several patients on it seeing great results.

He also noted several differences in Colby regarding his usual

reflex neurological testing, and determined that he DID need the

LDN. So, we are anxiously awaiting our script to arrive from good

old Skip.

We plan to reduce the copaxone to every other day, rather than daily

for a bit. TEVA did trials at this dosage the same time they did

the other trials and the results were just as good at this dosage,

so that is what we have decided to do for now. (Not sure exactly

what all this means, but I think you get my drift...) Eventually,

we will probably leave off the Copaxone all together, but for now,

we are so excited to have a neuro without blinders on that we are

doing as he asks us to do!

Just wanted to fill you all in and let you know what was going on.

Alot of people here helped me tremendously in the past, and I made

some very dear friends. Take care, and I hope this finds you all

doing well!

Kim

July 6, 2005

Colby looks so adorable in his new DOCband! Sounds like he's doing

great in it! I love thinking of new themes for Waydon's bands also!!

I enjoy making look cute with stickers! He's in a " Sun Fun " theme at

the moment. I put stickers of a pool, water splashing, slide, kite,

bubbles and all sorts of things to do fun out doors in the summer!!

It's a cute one!!

Glad to hear the casting went well! Waydon didn't cry either, I was

sooooo glad for that! These babies are amazing at what doesn't bother

them!

Lacy

Waydon's mom 8.5 months

Docband 2 weeks

> I have not had the time to post over the past few weeks, but wanted to

> give everyone a " Colby update " . Colby was casted for his Doc-Band (CT

> in Glenview, IL - LOVE THEM!)the first week in June. He did

> wonderfully! Did not cry at all - although he drank his bottle during

> the entire process. He was " officially banded " on June 14 and is doing

> very well. I truly think the process was much harder on me than him!

> Now I spend my time thinking of new " themes " for his band...we had

> a " BLAST " sprucing it up for the 4th of July. I also wanted to take

> the time to thank everyone on this board for your information, opinions

> and support.

>

> I posted some pics - they are in the Colby folder.

>

> Take care everyone!

>

> Mom to Colby - plagio and slight tort

July 6, 2005