I think I have come to the realization that I need a revision

[Larra]

Maybe wth his new GI anatomy he isn't absorbing his anti-seizure meds as well as before. Did they check a blood level?

 

[DSRIGGS]

Maybe wth his new GI anatomy he isn't absorbing his anti-seizure meds as well as before. Did they check a blood level?

The ER Dr said they didn't check keppra levels in the er. Assuming they will check at the epilepsy center.

 

[Larra]

Check also to see if he's on the regular or the extended release form. Even though he doesn't have a DS, he still could have somewhat faster transit time of the meds, esp if they are extended release.

 

[DSRIGGS]

Check also to see if he's on the regular or the extended release form. Even though he doesn't have a DS, he still could have somewhat faster transit time of the meds, esp if they are extended release.

I am pretty sure it is regular release as he takes 1,000 me twice daily. Thanks for the suggestions.

 

[DSRIGGS]

Poor Cameron! I hope he get answers and a fix soon.

Thanks

 

[hilary1617]

Best wishes for Cameron! Sorry to learn of the seizure event. How is his digestive system doing?

 

[DSRIGGS]

Best wishes for Cameron! Sorry to learn of the seizure event. How is his digestive system doing?

Digestive system is doing better

Thanks

 

[Bagaof4]

Sorry to hear about Cameron's seizure just as things seemed to be on the upswing. Hope they figure it out soon and your family can start breathing easier. I can only imagine the stress.

 

[Nancy Roberts]

Hi Scott, I am sorry to hear about Cameron having seizures. Is he your son? I am also reading about that you want to have revision surgery. Who is this doctor that I need to avoid for surgery? Also what is Creon?

 

[DSRIGGS]

Hi Nancy -

Cameron is my 21year old son who in the the last five years has had:
-Hodgkin Lymphoma
-Pulmonary Embolism from clot forming in central line
-POTS
-chronic back pain since Lymohoma
-GERD that was refluxing 65 times an hour
-Nissen Funfoplication for gerd
-Failed Nissen redo and hiatal hernia repair
- Gastroparesis from vague nerve cut during repair.. Surgeon didn't tell us he cut it 2 years ago and we just found out in March that he had gasttoparesis severe, because of it
-surgucal repair to fix Nissen and hernia, rny limb and drain to cure gasttoparesis, ventral hernia repair and a meckels divitruculum was found and removed (all Dr k this June 2)
-.emergency appendectomy 2.weeks before Dr k
- severe depression and suicidal last 2.years because of the horrible symptoms from the surgeon effing him up
- pulled off plane unconscious and seizing at lax on Feb 14..in ICU for several days on tube having hundreds of seizures
- 12 total surgeries in 5 years


My ds surgeon is a Great surgeon, in fact director if trauma for OSF St Francis (level 1) trauma center in Peoria. He does standard 100 cm common channel like many ds surgeons. 2 good friends had a ds with him just fine absorption. My ds was a big success and I may need the CT channel lengthened but my surgeon didn't screw anythung up and I would recommend him to anyone considering ds... Just ask him to do Hess method.

CREON is a pancreatic enzyme that aids absorption. You take with food

Thanks for the post
-

 

[DSRIGGS]

Sorry to hear about Cameron's seizure just as things seemed to be on the upswing. Hope they figure it out soon and your family can start breathing easier. I can only imagine the stress.

Thanks Pam.

 

[brooklyngirl]

Ugh! Wtf!?!? Poor kid. I have no advice, just hoping you all find resolution for your issues. {{{{{hugs}}}}}

 

[southernlady]

All I can add are hugs for Cameron (and you and your wife)

 

[duh_Mom]

WTF
WTF
WTF!
Great idea about the seizure meds level - that boy can't get a break.
Scott, hugs to you and your family. I am so sorry this saga continues.

 

[robs477]

Not a day goes by Scott that I dont think about you guys and send my best wishes, my hopes and my prayers.