PDA

View Full Version : mother - daughter SLE



lilmisssunshine
01-30-2009, 01:09 PM
Hi! My 7 yr old daughter and I both have SLE. She just recently met her 4th criteria for diagnosis.....it's been 15 months of battling with various docs to get her treatment. So, needless to say, I am tired of battling!
Just wanted to touch base with others who are LIVING with lupus, COPING with lupus, and THRIVING with lupus. Specifically, any mothers of children with lupus.
We're both on plaquenil, prednisone, methotrexate, NSAIDS, prevacid/nexium, and various vitamins. The daily grind of this routine is a struggle. Although we're fortunate in that we've both been tolerating most meds without difficulty, I'm finding it very challenging to stay strong emotionally....
I hope that this can be a place of support.

iseedeadmonkeys
01-30-2009, 02:23 PM
Hello lilmisssunshine :D

Welcome to the forum this is defently the place to be for any kind of support that you need,
I got diagnosed with SLE in sept 07, ive had soo much previous problems had no idea and DX of anything mostly by drs telling me it was all in my head :( but now after being thrown from pilla to post im under a fab consultant and still with my GP who originally dx me :)
sorry to hear you and your daughter has it and at such a younge age too, the peeps and mods on here are fab ppl 8) you are very welcome here

peace and light
ISDM
xxx

sits_inthe_corner
01-30-2009, 02:56 PM
Hello and welcome lilmisssunshine

I'm not diagnosed as yet, my mother had lupus and my sister is diagnosed.

I'm on plaquenil and arthrotec. Glad to hear you and your daughter adjusting to the meds.

How long have you been on plaquenil? It can take up to six months to kick in, but once it does...wow. It's made a big difference in my quality of life.

Glad you found us, this is a very warm and supportive group of people :)

lilmisssunshine
01-30-2009, 03:21 PM
thanks so much for the welcome! i was diagnosed 4 yrs ago after recurrent pericarditis and arthritis; started plaquenil at that time. i continue to flare every 4-6 wks, but it's so much better than it was. i'm not tolerating the methotrexate as well. i'm constantly picking up infections! imuran was HORRIBLE for me - never ending vomiting and chills, vision changes, etc.
my daughter just started her plaquenil, and is tolerating it well so far. she's home from school again today(fever and cold symptoms). this is a huge issue for me - when to send her to school, when to stay home, etc??? how much do i push her to get through the day versus encouraging her to learn her limits and support her with those decisions?
i know she's only 7, but very mature for her age. and she has seen me struggling for the last several years.....it's a constant juggling act.
i'm a nurse practitioner, and constantly getting called to come pick her up from school. my boss is wonderful and has allowed me the flexibility to so. i've made it clear that she is my priority. it's just very difficult to live "normally!"
thanks so much for listening. it's so nice to be among people who just get it!!!

sits_inthe_corner
01-30-2009, 06:16 PM
Gentle hugs to you and your daughter lilmisssunshine

My heart goes out to you.

When I was in school, there were days I was so tired I would tell my mother that I had a sick belly, even though I was just plain tired.

She was a stay at home mom, so even though she was suspecious she could let me stay home, but she would make it clear that I was to stay in my bed or she'd dress me and take me to school.

:lol: That was just fine by me because I was so tired all I wanted to do was sleep.

All you can do is your best. Some times we do have to struggle through our day, other times we can rest. I'm sure if your daughter was truely not up to it, you can sense it. Or she'd protest loudly enough.

It's a tough call.

I'm on a combination of plaquenil and arthrotec 75. This combination is really doing alot for my joints. I had to try alot of medications to find the mix that was right for me.

I have a very good family doctor who also treats my sister. So she's familier with the family history.

lilmisssunshine
02-03-2009, 07:48 PM
Hi, and thx for sharing. I think most days I have a decent grasp on whether or not to send her to school. It's those fuzzy gray days that drive me nuts! Like when she has a 99.8 temp, is complaining everything hurts, and is clearly more swollen. She always takes a nice warm bath before trying to move around too much, and this is usually all the "warm-up" she needs to get started. However, at least once a week, those baths just don't do it. I stress over wondering is she getting sick, are her friends at school sick, am I sending her into the germ-pit, etc. Her school and teachers are wonderful, and will call me if they feel she needs to come home.
Or when I pick her up and see/hear all the coughing, sneezing, in her class. I think oh lord! And now there's chickenpox going around. Some of her classmates are not vaccinated, and I'm sending my immunosuppressed child to school! AHHHHHHH!!!!!!

KathyW1958
02-04-2009, 04:07 AM
Hi,
Welcome to the site. My name is Kathy. I am 50 years old and I did not get diagnosed with SLE, Lupus and Sjogrens until I was 36 years old, but they believe that I have had Lupus since the age of about 5 or 7 years old or there abouts. I see where you are worried about sending your daughter to school where the chickenpox are going around right now. I have to ask whether your daughter is vacinated against the chickenpox. I think if it is possible that she should be vacinated against the chickenpox, because in my case I got them at the age of 35 when they did not have the vacine available and boy it really made the Lupus a hundred times worse for me.

I am very fortunate that this disease has not as of yet shown up in my daughter or my son. They are adults now. I pray everyday that my daughter will never have this illness. I often worry about whether if she has a daughter if the granddaughter will have it.

I have a younger sister with Lupus and my twin sister has Celiacs Disease. There are a lot of Auto-immune disorders in my family.

I hope that you keep posting.

Hugs,
Kathy

rob
02-04-2009, 04:56 AM
Hello Lilmiss,

I'm Rob, I am 41 and was diagnosed with Lupus 5 years ago. I am in the unique situation of being a son, who's mother also has Lupus. I'm sorry I can't help you with mother-daughter issues, but I wanted to say welcome to our group. Looks like you've already met some of our other regulars. They know their stuff and won't steer you wrong. Please, make yourself at home here.

Rob

lilmisssunshine
02-04-2009, 10:29 AM
HI guys! thx for responding. My daughter has 1 of the 2 required varicella vaccines. She can not receive the 2nd now as she is on methotrexate and prednisone. She should be "covered" in terms of protection from this virus; I just drives me mad to think I am sending her to school with a suppressed immune system. I am all for freedom of choice, but this is the first time those freedoms put my child at risk.
Rob, is there anything you can add in terms of being the son of a mom with SLE? Things you wish you knew more about, or less about? Things you can suggest I do/not do? My daughter has seen me very very ill, but I limit the amount of information I tell her. And of course, try to do all in an age-appropriate manner. I just ordered 2 workbooks from the Lupus Foundation to assist us with all of this. I hope they help!

sits_inthe_corner
02-04-2009, 04:11 PM
Hi lilmisssunshine

I understand your concerns about the germ pit :lol:

I used to work with special needs children in an intergrated daycare. Lordy talk about your germ fests!

Ask your doctor if it's okay for your daughter to take coldfx. I'm not allowed to take any cold or flu medications because of the medications I'm on. But I am allowed to take cold fx. It's pricey, but man I have dodged some really big colds and flu's.

Soon as anyone around me starts barking coughing sneezing or feaverish sickyness I start pounding in the cold fx.

Or if I start with symptoms of my own. So far so good. By the end of the first day of taking it I am starting to feel better and as I said have avoided any really nasty bugs.

Only thing I found (which took me a while to clue into) is that cold fx boosts your immune system, kicks it in to hyper drive. Which is why some of my blood work was coming back with elevated white blood cell count. :lol:

When I figured it out I mentioned it to my doctor and she laughed. She hadn't thought about that either.

Cupcakelove
02-06-2009, 02:40 AM
Hi Lilmiss,

My heart goes out to both you and your daughter. Only 7 years old and having such a huge struggle on her shoulders...wow she must be a strong little one.

I definitely can say that there is a genetic link in families with Lupus. Its obviously hereditary and can is passed on to others in the family.

My mother and brother both are diagnosed with Lupus.

As for me, I have a gazillion symptoms, yet I am undiagnosed. I just have alot of other health issues as well. I just keep telling myself its only a matter of time before the PHYSICAL changes start to occur. My dr's keep sayin we just have to wait and see...Like I don't understand the point of waiting for the worst to happen. Why not treat in advance so perhaps I don't get so sick, I am untreatable...

I suppose being 24 doesn't help things either. They think young people don't get sick...ha. Im an exception to that rule.

Anyways, I wish you and your daughter the best in your fight with Lupus. I do believe God only gives the strong, the highest of mountains to climb...

Take care. :wink:

lilmisssunshine
02-21-2009, 07:45 PM
oh! I big-puffy-heart cupcakes, too! they're my new guilty pleasure. i found a great bakery that makes teeny-tiny-petite sized one's so i don't even feel guilty eating them.
my daughter has rapidly become my hero! at 7, she's endured far more than i. yet, she continues to remind me "don't worry, be happy, momma!"
we struggled with many symptoms before getting treatment, too. i can't tell you how many times i argued with the docs...what difference does it make which name you eventually apply - most rheumatoid processes are treated with very similar, if not identical, medications. NSAID's, steroids, immunosuppresants, etc. thankfully, we've overcome that obstacle.
i wish you wellness!!!!!

mountaindreamer
02-22-2009, 10:04 AM
hi lilmisssunshine,

welcome to the group. As you can already tell, there is a magnitude of experience, knowledge and compassion among the people here.

I can not help with the mother/daughter issue, I just want to tell you how much my heart breaks for you. It must be so difficult, and we are here for you to vent or ask questions. I know there others here who have children diagnosed and i am sure they will be along with lots of compassion.

angel hugs to you and your daughter.