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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/23/2009 5:24 PM (GMT -7)   
Most of you know that when my son was 7 (he's now 11) he developed what the doctors now think is Juvenile Arthritis.  My daughter is 7 and she has always had pretty low energy compared to most kids her age and takes lots of rest breaks during the day.  Sometimes the fatigue is worse than others and every so often it gets bad enough that I take her to the pediatrician.  The doc always runs an ANA along with all the other bloodwork because of family history and it has always been negative.
 
Well, my daughter's fatigue got really bad again recently to the point where she would stay in from recess and lie down.  She is into dance pretty seriously and dances competitively and loves it and she gets very tired from dance - way more tired than her classmates.  So the pediatrician ran all the bloodwork again and this time the ANA came back positive, although it was only 1:80. and her sed rate was borderline at 15 (15 is borderline for kids).
 
Both the pediatrician and I agreed that it wouldn't do a lot of good to have a referral to a rheumy at this point.  She really doesn't have any other symptoms aside from fatigue and as we all know, there isn't much that can be done for that.  For now, we will just keep an eye on things.  It just stinks that now my daughter possibly has to deal with all this stuff too.  I've been kind of bummed out lately and this sure didn't help. 
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/23/2009 5:53 PM (GMT -7)   
(((Oh Hippi))) I'd be worried too. My daughter (23) has always been sickly with many frequent fevers. She had sinus surgery when she was 9 and tonsils out at 17. She's never had an ANA and I'm not looking forward to finding out. I sure hope she's ok. Love, Donna 

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/23/2009 6:34 PM (GMT -7)   
Oh, no!

I'm so sorry that it now seems as though your daughter might be affected as well as your son. I know it's got to be a huge source of stress and guilt when you are so powerless over their health. You haven't posted much about your son lately so I've been hoping that means he is doing well.

I think of you often, and hope things get a bit easier this year,
Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/23/2009 8:02 PM (GMT -7)   
Very sorry, Hippi.  Just having it yourself is plenty to cope with.  The only positive thing I can think of is that at least your daughter has a mom who understands the disease, which will help her in so many ways.  I know it isn't much comfort.  I also hope your son is doing well.   
One day at a time....
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/23/2009 8:42 PM (GMT -7)   

Oh Hippi, I wish I was there to give you a hug. There are just no words that can express how sorry I am to hear that there's a possiblity your daughter could possibly have this awful disease. It is hard enough to watch your child sick, but seeing your child suffer with a RA or Lupus is something I would never wish on anyone. Please know that my thoughts and prayers are with you and your family.

(((hugs)))

Melissa


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/24/2009 6:34 AM (GMT -7)   
Thank you so much for all of your kind words and support. I am just praying that things never progress with my daughter. When I see her get so tired and pale and just wish she had the energy of other 7 year olds who seem to be able to go non stop. She does have a doctor's note now to be able to take little rests at school and to be able to stay in from recess if she needs a rest. I haven't talked to her dance teacher yet, but she is a wonderful person who knows my daughter really well and already knows that she struggles with fatigue.

I was talking to my mom yesterday about it and my kids get a double whammy with genetics. My dad's sister had lupus and died last year from complications and then a huge amount of people on my mom's side have RA and at least two of her relatives have lupus.

Butterflake, I'm sorry to hear about your daughter. I pray that she is not developing one of these awful autoimmune diseases.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/24/2009 6:57 AM (GMT -7)   
Hippi thanks for the kind words. I can't imagine how you must feel with two sick kids. I hope your daughter doesn't get any more symptoms. I know she hates missing recess- that's the best part of the day! Please keep us updated. Love, Butterflake 

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/24/2009 8:52 AM (GMT -7)   
(((( Hippi ))))) I sure hope your daughter doesn't develop an AI disease. I know you will worry though, I do the same with my daughter, she is 13 and sometimes complains of fatigue or this or that and I worry. Also since my husband had thyroid cancer we've already had her checked out. Like your daughter, she gets it from both sides of the family, all the way around.

(((( Donna ))))) I sure hope your daughter is ok too. Us mother's always worry about our children no matter how old they are.

My prayers are with you both :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/24/2009 10:12 AM (GMT -7)   
Oh Hippi!!! This just makes me sick. I really hurt for you today, and I know that we moms worry so much more about our kids than we do ourselves. What I wouldn't give to keep all of this from affecting little Abby. I had no idea there was such a history of AI problems in your family.

Hang tough, girl, and remember that we're never given more than we can handle. Not that that's much comfort to you at this point.

I'm running out the door to an appointment, but will write to you this weekend.

Love ya,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/24/2009 9:59 PM (GMT -7)   
Hi Hippi:

I'm so so sorry you hear that you'll have this worry on your shoulders. I can't offer up any new suggestions, I know you must be scared and frustrated over this. Sounds like AI diseases are common in your family and I know I'd be worrying like crazy if I were you.

I would like to mention to you tho, that Nikita has a positive ANA at 1:640 and she's seen a rheumy several times over it. They always say to me as long as she's not showing more than 1 out of 11 criteria other than the positive ANA not to worry. Well of course, that doesn't make me feel to good about it. I've notice that Nikita is having a lot of fatigue and she complains about her joints hurting. I've taken her in to have some labs done and they all were negative. I'm thinking it may be possible that she's got Fibro. It's possible that your daughter may have fibro instead of an AI disease.

I'll be praying that she has nothing more than positive ANA and that her fatigue is caused by her being really active and maybe not getting enough sleep. I hope that your worries for your kids doesn't make the flare you're in any worse. I know people say not to worry, but we're moms and we do worry over our kids. I'll be praying for you all.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/25/2009 7:59 AM (GMT -7)   
Thanks again everyone. I am praying that Abby never develops a full blown disease. Right now we are working on coping skills for her fatigue. She is much better at listening to her body and recognizing her fatigue than my son is. He just goes full force until he completely falls apart.

I have to say that Abby is doing well with the coping skills she is using and she is a real trooper about dance and loves it so much, but gets frustrated with getting fatigued while dancing. We put pillows and blankets in the car, so she can make a little nest for her to rest in for the drive home and we have a comfy place on the couch for her nest once we get home, so those things have helped. I just find myself wishing so much that she had the energy of most 7 year olds. Her little friends just go and go and go.

Barb, I know how much you worry about Nikita and that she has had some health problems on and off. It's a rotten feeling to think that our kids might have to suffer through this stuff some day. I pray that Nikita does not develop any of these AI diseases.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/25/2009 9:50 PM (GMT -7)   
Hi hippi--
Have you thought of having her blood tested for vitamin levels and hormones? I was hypothyroid as a kid and it was miserable, I was tired alot. Does she have any pigment problems like vitiiigo or hyperpigment?

I went to an MD--a real MD not a naturopath-- that does natural hormones and vitamins and he tests your levels of your vitamins and hormones properly and then prescribes the proper dose--not an overdose--of the needed vitamins. While it may not be a solution, it might help alot. The one I went to was an ob/gyn as well, but I could see them for this problem. It might be a simple nutritional thing. Is she anemic by any chance?

Many docs might jump to this or that drastic conclusion, but it would be nice if she could get thoroughly tested with regard to vitamins, hormones, and a few other thing so you could know exactly what is happwning. I feel much better with the changes I made per my doctor regarding hormones and vitamins.

Also, remember about sleep studies, snoring, inadequate sleep too. Ihad very dry eyes from sjogrens and lots of growing painsand didn't sleep well so that made the hypothyroid worse.

I've been sick lately and either the infection (which is slow, long drawn out) or my medicine has causedmy lymphocytes to go up and it has made me really tired for over a month now.

Low blood sugar can cause fatigue espeically if she is excerising alot and not eating adequately to keep weight down. In that case, orange juice woud help me. Also my son gets like that from electrolyte imbalance from his epilepsy medicine. in that case gatorade would help him.

I'm really hoping this is something simple this time and easily treated. I hope Josh is doing well and will pray for you and your family.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/27/2009 1:35 PM (GMT -7)   
How are you feeling Hippi? I've thought so much about you and your kids this week. I promised to write but came down with a bad cold and have been down and out for a few days. School's out here because of the weather, and most offices are closed too, and I've thought all day that it would be so nice for you if you and the kids had a few days to hang out and watch movies and drink hot chocolate.

Tell Abby I'm rooting for her. With your knowledge and tlc I know she'll get the best care knowledgeable.

Hang in there Hippi.

Love,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Fatso
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/14/2009 10:33 PM (GMT -7)   
cry Im so sorry your children are going through this hippi....my prayers are with all of you. My daughter was diagnosed with Lupus, Juvenile Rheumatoid Arthritis, Hypothyroidism, Fibromyalgia and Idiopathic Anaphylaxis when she was 13 eventhough she had been experiencing pain and fatigue for a few years. She is now 15 and had to stop going to school at 13 because it was too difficult to even get the energy for her to walk, she gets lots of fevers and is now getting small seizures. It got so difficult that this year I decided to homeschool her....but this child went from being very active in sport and a straight A student to being too sick to even speak..she was in the hospital many times before she was finally diagnosed. Unfortunately she inherited the diseases from ME! I also have Lupus, Rheumatoid Arthritis, and Fibromyalgia so do all my sisters, my mother and all my female cousins. It has been very hard to try to understand why all this is happening to us and especially to a young child that has lost her teen years to chronic diseases. I feel your pain and totally understand thw way you feel. Hang in there and support your son and daughter...they need to know you are there for them and understand what they are going though since many get sick of being around chronically sick people. My daughter lost all her friends as did I so it is good to know that there is a place where others understand exactly what we are going through. I am so glad I found this place....my prayers are with all of you and please keep me updated on your kids hippi.......(((((((((((hugs))))))))))

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/16/2009 12:45 PM (GMT -7)   
(((((((Hippi))))))))) I have often wondered how people with Lupus raise children while dealing with all that goes along with Lupus, I can't imagine the extra stress and heartache of having children with health problems of their own. I'm so sorry Hippi and I will be praying for you and your precious babies! By the way...I love the name Abby! God Bless You, Judy

StayStrongSomehow
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 3/19/2009 7:56 AM (GMT -7)   
Hi Hippie!
I am so sorry to hear about your children, you and yours will be in my prayers. I am 35 and was diagnosed with SLE in 2001, after several years of misdiagnosis. My little girl, a very active age 8, was recently diagnosed with JRA (juvenille rheumatoid arthritis), which requires surgery, since it is affecting her growth plates and causing deformity. She cries herself to sleep often even with children's motrin from the pain in her hips, legs, wrist and arms. We are awaiting an appointment with a pediatric rheumatologist in July to have her screened for lupus as well. There is a strong family history of discoid & systemic lupus as well as fibromyalgia, reynauds, and hyperhydrosis. My child's doctor, the orthopedic, mentioned the possiblity of allergies causing inflammation in the joints and suggested looking into that and perhaps trying msm & glucosamine in a child's dose for at most health food stores. Just wondering if you have tried that and if so, with any success? I
Live for tomorrow!!!


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 3/19/2009 6:45 PM (GMT -7)   

Aww Hippie, I am sorry your daughter is hurting too, that really sucks. I am always worried about my girls, everytime they get a new ache or pain I always think the worst.

I hope her symptoms don't get any worse. Please give her a gentle hug from us.

 

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/20/2009 5:03 PM (GMT -7)   
Hippy I hope your daughter is doing okay. My brain isn't workings so well. I hope that it is not the dreaded thing but perhaps something they can nip in the bud. My son keeps having problems but he finally got an ANA and it was normal. I was very happy about that. Epilepsy and heart problems is enough. I hope she is feeling better and doing well with her dance.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/22/2009 7:46 PM (GMT -7)   
Hippi, I'm also sorry to here about you daughter, I hope she will be able to dance forever, since she loves it so much. My thought's and prays go out to you, your daughter and son.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 

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