Rn's Urgent Help Please !!

[Samantha999]

*grassman *grassman

I AM THE MOTHER/GAREGIVER TO A 32 YEAR OLD SON WHO IS NON-VERBAL AND DX'ED WITH LGS. HE IS ON A LOT OF ANTICONVULSANTS. JUST OVER A BOUT OF GLADDER INFECTION AND ON HIS SECOND ROUND OF RAGING-----SEVERE REFLUX !!!!!!
I SEE THE DOC TOMORROW AND HE IS ON A STATE PROGRAM THAT WILL PAY FOR 14 HOURS OF NUSING CARE A WEEK. BUT BUT BUT THE DOC HAS TO WRITE UP THE ORDER AND THEN I CAN PROCEED TO GET SOME HELP.

MY SON IS NOT THRIVING. HIS FIRST BOUT OF REFLUX ENDED 2 YEARS AGO AND HE GAINED A GOOD AMOUNT OF WEIGHT BUT OVER THE PAST MONTH AND A HALF HE HAS NOT BEEN ABLE TO EAT MOR THATN A COUPLE OF BITES OF FOOD. HE IS ON PREVACID TWICE A DAY BUT IT IS NOT HELPING. TO GET HIS MEDS TO STAY DOWN AND SOMETHING TO EAT TO STAY DOWN AND TO KEEP HIM HYDRATED IS JUST ABOUT MORE THAN I AM ABLE TO DO. O BUT I AM GETTING GOOD AT IT. FINALLY RESORTED TO HIGH CALORIE BOOST............

HE THROWS UP THE MOST YUKY MESS OF PHLEGM AND MUCUS....AND IS IN A LOT OF PAIN UNTIL HE DOES. THIS WAS UNTIL I JUST DECIDED TO KEEP ON A LIQUID DIET UNTIL SOME HEALING STARTS TO OCCUR. STUFF GETS STUCK IN HIS ESOPHAGUS AND THEN THE FLUID BUILDS UP AROUND IT. IT IS AWFUL FOR HIM.

I NEED THE EXPERTISE OF A RN.

WHAT SHOULD THE ORDERS/SCRIPT SAY????? PLEASE HELP ME.

[joy]

Hi there mother. You did not give a name so mother will have to do. I am not a nurse but do have to wonder about just prevacid. I know I was given that for a lot of acid reflux. I took it so long myslelf that i think it caused me to have other problems. Is it possible to ask doctor if he need something else at this point? I understand that he is on Keppra also? Is this for seizures? Sorry but I was just trying to get some ideal of your son's total problems. I understand that you mother have your hands full trying to be his full time caregiver all alone. I truly wish you had more help in this. Please keep us updated in all of this as you have the time. We may not be able to do much but at least I know we all care and wish you well in this undertaking.

[Samantha999]

Well,
It is October 2008 and my son has rebounded. I did not receive any help from outside RN etc. I slowly reduced the keppra and he is off of it altogether now.. He had a kidney cat scan and his kidneys are/were normal. So without being able to know exactly what was going on with him....reflux and the throwing up etc. The removing of the keppra was my safest bet. Of course his seizures are worse and he is on as much felbatol as is allowed plus some depakote. He does not take reflux meds anymore.
He has gained all his weight back and then some and is a happy camper as far as I can tell.
So onward and ever upward!

[joy]

I am so glad to hear of any good news. Sorry it has to be with also bad news. I'm hoping to hear that soon as well.

It has been a loving battle for you all the way. Love at work is always a great thing to be a part of.;)

[Nana4&cntn]

Samatha,

I am sorry I just saw this, I apologize. I worked with people with seizures disorders and LGS. Your son sure has had a tough time. LGS is tough and you are try to do this all on your own?

I am so glad to hear he is doing so much better. One of the things I was going to suggest instead of prilosc, which kills the acid, is to add pro-biotics to help his food move thru the system faster and help prevent the reflux. I stopped taking Nexium several months ago and only take it if I am having pain.

Can you tell me a bit more about your sons abilities?

Is he verbal,to tell you when he hurts?

How big is he and is he able to ambulate on his own or is he in a wheelchair?

Does he have any behavior problems? I know that can be a huge problem with some LGS folks.

Does he go to a day program/work?

That is enough questions, and please don't answer them it you don't want to. It is not a problem, I just needed a bit more info.

Please take care and please reach out as often as possible! I will keep watch, I loved the name of the thread, it caught my eye. The past few weeks have been nuts here as my mom and myself have both been dealing with health problems.

Sending my best,
Kathy