Update on my daughter after new ped. visit

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mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/16/2009 12:29 PM (GMT -7)   
I couldnt find my prior post about my young daughter and my problem with her pediatrician, sorry.
Finally after a few months of waiting, my daughter saw her new pediatrician. I took my daughter in to have her blood drawn yesterday for a complete ANA panal and a RA panel. She thinks she might have RA because of her achiness is the morning and the redness on her knees occassionally with the joint pain in knees and elbows. She's also drawing other normal labs because of her history of anemia and pica and the fact that iron never helped her in the past. This pediatrician, least to say, said in so many words that it would have been very appropriate for her prior pediatrician to have done further testing instead of using a wait and see or that its growing pains. She also thinks that her anemia may have been autoimmune related. I know I had hemolytic anemia three times in my lupus life. She as well made a comment about her vision. My daughters vision has deteriated significantly over the past year. She went from a 20/20 in Dec. of 08 to 20/200 in both eyes. We had gotten her glasses in Feb but over the summer she kept standing closer and closer to the tv until she was right in front of it. She had her eyes checked again in Sept and thats when both eyes turned out to be 20/200. This she also believes may be involved with an autoimmune process. As I think I had said in a prior post that over the summer she started to go through puberty development. Just pray that if they find something that it is something that can be controlled. Im really scared for her and she is terrified. I explained to her not to worry about the unknown right now "You let mommy worry for you." Just need prayers (if I can ask for that here)
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/16/2009 1:12 PM (GMT -7)   
I hope your ped can find answers. Can I suggest a ped rheumy? It might be time to call one in.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/16/2009 1:38 PM (GMT -7)   
Sure, her new peadiatrician said she would need to go to one
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 10/16/2009 4:16 PM (GMT -7)   
Wow! I am so sorry for you and your little girl! Please know that your family will be in my thoughts and prayers! I had eye involvement with lupus a couple of years ago and my eyes went down hill pretty fast, but i'm actually regaining some of what I lost! Judy

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/16/2009 5:47 PM (GMT -7)   
What a scary time for your daughter. Can I ask how old she is? It must be horrible to watch her suffer and not be able to make her better. I am sorry you are both going through this.
 
 
 
 
 
 
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.


Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/16/2009 7:13 PM (GMT -7)   
So sorry about your daughter,this must be very hard for you as well as her. I will be praying for you and your family that God will guide your hearts and bring peace to you and your daughter.
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 10/16/2009 7:58 PM (GMT -7)   
I will give you all the prayers you want!!! I live by them :-) As i believe most of the people here do! I will say a bunch for her tonight when i go to bed, i the bathroom, and in the kitchen. That is my usual travels for the night. And then another one when i wake up. How's that?

Good luck, and as i said you'll be in my prayers along with your daughter. Laura
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1.possible Lupus and/or ankylosing spondylitis. Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, vitamin 2000 D, Vitamin B complex, Hydrocodone, Tylonal Arthritis, Cymbalta.prednisone ,Lyrica and Avara.


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/16/2009 7:59 PM (GMT -7)   
Thank you for all the support and thoughts/prayers. Its very hard esp on her. I just dont want to see her crying uncontrollably anymore because of severe pain. I know I have to be the strong one but I also know what kind of pain it is to make a person cry like that.
MJLD what happened to your eyes? was it like an optic neuritis?
Smokeyswife my daughter is just barely 9 years old and has had problems on and off with anemia, severe joint pain, ulcers in her month, fatigue, blindness now, and fatigue and achy body in the mornings. She cant even get motivated until she has a bath in the mornings. This has been happening on and off since she was 3 years old. ANA has been positive homeo/speckled, C3 was low, sed rate was high along with anemia and these labs were done when she was 5 years old. That was also the last time she had labs done. Her prior ped refused to check her further calling the joint pain "growing pains". They didnt do anything further with the results. Until now when we changed to a new female pediatrician.
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/17/2009 2:24 AM (GMT -7)   
mypearl,

Your daughter is the same age as my granddaughter so I can just imagine the nightmare of watching my little one go through that. I'm glad you're going to look for a pediatric rheumy, and hope they will get your daughter on a treatment plan soon. I also hope your daughter understands that there are medications that will help her feel better. Do you have access to a child psychologist or therapist who your little girl could talk to? And don't forget to take care of yourself.

God bless, and hang in there. We're here for you.

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

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/17/2009 5:20 AM (GMT -7)   
Mypear, I am so sorry to hear your daughter is so young and is dealing with this! I know how badly it makes me feel and how hard of a time i have dealing with it sometimes, I can hardly imagine how hard of a time someone so young must have dealing with this beast! Life isn't fair sometimes and I am so sorry she is so sick !!! Please give her a gentle hug and let her know how proud of her I am for dealing with this! Even though I don't know her I think she is a warrior for going through what we do every day and still fighting!!!
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA,IBS (Irritable Bowel Syndrome) Acid Reflux,
Taking Plaquenell, Folic Acid, Synthroid,Nexium, Singulair,extra Strength tylenol when needed,and Zytram.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/17/2009 10:53 AM (GMT -7)   
So sorry to hear about your daughter. As a mother I know that this must be very
difficult for you. Sending gentle hugs and prayers. Know that we care.
 
Hugs
 
Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/17/2009 2:17 PM (GMT -7)   
Patty, Im going to ask my rheumatologist at swedish in seattle for a good ped rheumy. My whole thoughts exactly on early intervention no mater what type of autoimmune problem there is. I just dont what to see her go through her organs being affected one after the other like me. You know there is alot of my cousins with lupus. I think there is now 5 of us. These cousins are all related through my mother and her siblinings. There is also other autoimmune problems with her side coming through my grandma.
connie, one thing I always tell my children which they can recite now is:
"Sometimes you have to do things you dont necessarly want to do but you have to do them anyways." You know the odd thing is that when she is hurting you know its really bad because in general she wont complain otherwise. She's deffinantly a fighter. Born at only 4 1/2 lbs and 4 weeks early with a cord around her neck twice and small for gestational age, with a mother in pre eclampsia, I knew she was a fighter from the begining.
Thank you everyone else for the prayers and thoughts. It sure helps!
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/20/2009 10:58 AM (GMT -7)   
Well the pediatrician called me back. Her RF came back +, her ANA came back +, and a new test came back positive that she ran along with the RF test. Apparently this new test is more specific to Juvenile Rheumatoid Arthritis called Citrulline antibody. She now going to have an apt with a pediatric rheumatologist in spokane. I am really scared for her!
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,

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