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dw172
12-27-2011, 09:50 PM
My 16 year old grandson has SLE and he has had 6 heart attacks this year.. Here is a list of his problems.

Lupus (SLE)
Hypoalbuminemia
Lupus Nephritis
Pericarditis in Lupus(SLE)
Pericardial Effusion
Chest Pain
CRP Elevated
ESR raised
Pericarditis secondary to Lupus(SLE)
Headaches
Joint Pain and Swelling

and these are the meds he is on:

Singulair 10 mg
Nexium 40 mg.
Enalapril 20mg
Prednisone 20 mg.
Cellcept 1000mg
Plaquenil 200mg
Zofran 4mg
Celexa 20mg

He has had numerous CT Scans, Lung biopsy, Bloodwork,Been hospitalized 4 times all in this year.He now has a new symptom where he regresses to an infant and this can last anywhere from 20 minutes to 6 hours. He has a lot of pain. I wished i knew what to do to help him. He is now homebound and gets tutored twice a week. All suggestions are welcome and thank you for listening.
There are no support groups near us. We live in West Viginia between Parkersburg and Clarksburg

Sandie

kim,l
12-27-2011, 11:57 PM
i am so sorry your grandson is going through this it is hard to know what to do or say all you can do is be there for him. i am sorry you have no support group where you are but we are now your support group we are here to listen when ever you need we are like a family here, feel free to vent anytime and you can leave any mesages in lauri lounge we are all here to support one another. take care and a big hug i will be thinking of you and your grandson.

steve.b
12-28-2011, 05:45 AM
hi sandie,
i am sorry i cannot offer any advice.

but i did want to stop by and welcome you to our cyber family.

dw172
12-28-2011, 10:24 AM
Thank you for your replies. I think i can learn a lot here.

Sandie

tgal
12-28-2011, 10:36 AM
I usually start with a welcome to the group but I need to start with "I am so sorry" this time. It is hard enough when we have this disease but when you have to watch your grandchild go through this it must be so much worse.

Now I will welcome you to WHL. This is a wonderful group full of fabulous people who are always here to help and support. We are not doctors. We can't diagnose but we can tell you of our experiences and hopefully help point you in the right direction. The only thing worse than going through this is going through it alone. You are no longer alone. Hopefully that brings a little comfort

I look forward to getting to know you

Saysusie
01-06-2012, 10:30 AM
I wanted to take a moment to also welcome you to our family. I am so sorry that your Grandson is suffering so much from this disease and I know that this must be very difficult for you. He is very lucky to have you and you are doing one of the most important things that you can do for him right now: learning as much as you can about this disease so that you can help him in any way that you can.
Please know that, you are not alone and that we are here to help you in any way that we can as you reach out to help your Grandson.
I am sure that you will learn a lot here and we are more than willing to answer any questions that we can, give you all of the support that you need and provide you with a safe and reliable place to get information. I wish you the very best :-)

Peace and Blessings
Namaste
Saysusie

magistramarla
01-06-2012, 10:01 PM
Hi DW,
From one Grandma to another, I'm sorry to hear what your grandson is going through.
Whenever you need information, support or just someone to vent to, there will always be someone here at WHL for you.
Hugs,
Marla

Mica
01-07-2012, 05:13 PM
Im sorry he is having to go through this. From being in that position myself its hard but it is a lot easier to handle with the support of family. I couldn't image what my mother felt and still feels when I first got sick, to have to witness this and not be able to fix him, and have no one to vent with. Please feel free to vent here, it helps, and when he starts to get better have him come on this site. He wont feel up to it now but later he might and it will help deal with the isolation he is dealing with right now from his friends and his peers.

dw172
03-29-2012, 09:32 PM
We finally found out it was caused by the Cellcept.They lowered the dose and no more regressing to an infant. He goes to his heart doctor tomorrow.

steve.b
03-30-2012, 02:13 AM
hi sandie,
thanks for the update.
i was a little concerned when i had heard nothing.

kim,l
03-30-2012, 05:42 PM
sandie glad to hear they found a cause hope things go alright at heart doctors hugs .kim

lisalewis1973
03-30-2012, 06:22 PM
welcome sandie..i'm sorry your grandson is going through this..