Author Topic: My 13 year old With SJS and diminishing WBC  (Read 6329 times)

6blessings

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My 13 year old With SJS and diminishing WBC
« on: January 28, 2010, 02:41:16 PM »
           Hello Everyone,
 
 I hope all is well. I am sorry i do not spend more time on here, with four kids i do not have alot of free time. I know everyones time is valuable so ill keep it short. My daughters WBC is now 2 and her Neutrophil count is 1. There is not much more room for it to fall. She has had breahing problems for three months. Her rheumatologist refered her to a pulmonologist but the appointment can not come soon enough. She is having alot of bone pain. Seeing how she is the only patient this doctor has seen with SJS she really feels as if no one understands what she is going througth. For some reason i feel as if her SJS is really active. She is on METHOTREXATE by injection 20 mg, Plaq. 200 mg and folic acid 2mg and naproxen 1000mg, And they just started claritan just in case. I really wish i can understand what you all are going through. seeing my daughter like this everyday i can only imagine. ill take any advice anyone would like to offer. Thanks so much.

6blessings; Julie , MIRANDA'S mom :)

ohiolady

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Re: My 13 year old With SJS and diminishing WBC
« Reply #1 on: January 28, 2010, 02:59:07 PM »
I don't have any advice but my heart breaks that your young daughter has so much to deal with at this point in her life.  Hopefully, others will come along with some great words of wisdom.

Anna
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jaygee

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Re: My 13 year old With SJS and diminishing WBC
« Reply #2 on: January 28, 2010, 03:01:04 PM »
I am so sorry to hear how ill Miranda is.  I have no special advice, but just wanted to say I feel for you, and can only imagine how much of a worry it must be for you.  I am sure others, more knowledgeable, will be along soon.  xx

6blessings

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Re: My 13 year old With SJS and diminishing WBC
« Reply #3 on: January 28, 2010, 03:01:35 PM »
Thank You Neighbor for your response i am a
indy lady. lol :)

Navigator

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Re: My 13 year old With SJS and diminishing WBC
« Reply #4 on: January 28, 2010, 03:02:14 PM »
What state do you live in???   Are you near any big city? (I'm only asking because often the most experienced doctors are affiliated with teaching hospitals in big cities.)  Maybe you should consider a second opinion from a rheumatoligist with more experience?

The reference to breathing problems and bone pain is a bit worrysome to me as a mom, as is the "just in case" comment.   Is her pediatrician still involved?? or any internist??? while the problem may be auto immune a generalist might be more inclined to view the whole picture and do tests that a specialist may not consider.

I am so sorry your daughter is having these problems.  I will keep her in my thoughts.  

Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

6blessings

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Re: My 13 year old With SJS and diminishing WBC
« Reply #5 on: January 28, 2010, 03:06:52 PM »
Yes My daughter goes to Im not sure i can say it but it is listed as one of the top childrens hospitals in the world actually it is as well a university. I guess it is just uncommon for children to get it there for the doc have to get advice from the adult rheumy at the hospital it is affiliated with across the street. Bummer but better then nothing.

Navigator

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Re: My 13 year old With SJS and diminishing WBC
« Reply #6 on: January 28, 2010, 03:14:51 PM »
Ahhh...yes it appears the average onset of SJS is 40 so I can see that a childrens rheum. might not see many.   Sounds like she is in a fine insititution though.

You are her best advocate...so be insistant that she get seen.  Her doctor should have a view about the blood counts.  I would press the doc. on that.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

Joe S.

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Re: My 13 year old With SJS and diminishing WBC
« Reply #7 on: January 28, 2010, 04:03:23 PM »
I did not see flax seed oil or vitamin D. Check out the tones for asthma on my site. The fibro and lupus tones may help. PM if you wish. I would cry for her, but my tears do not flow. Be kind to yourself during this.

I have found Alpha-Lipoic- Acid and Acetyl-L-Carnitine to help me. Talk to your Dr before you try theses I do not know what  a child dose would be.
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Leisa

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Re: My 13 year old With SJS and diminishing WBC
« Reply #8 on: January 28, 2010, 05:39:22 PM »

6Blessings, Bless your heart and bless your daughters heart. I pray you find some answers for her and for your peace of mind. Be strong and don't give up getting diagnosis. You are her advocate in getting the best for her. We are all here for you, even if it's just to vent. Please keep us posted as to how she's doing. So many people just don't understand this disease and some want us to think it's all in our heads regardless of the blood tests we go through with positive results. I find it's very frustrating even to explain it to our families. I'll keep you and your daughter in my thoughts and prayers. Take good care of yourself and of course her.

rnathans

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Re: My 13 year old With SJS and diminishing WBC
« Reply #9 on: January 28, 2010, 06:56:32 PM »
Perhaps there is a pediatric hematologist who can be consulted re the low WBC's. There are injections that can boost the WBC's if the drop is due to the methotrexate and possibly if due to other causes. A hematologist will look for the cause of the low counts and can distinguish between whether her marrow does not produce enough WBC's or whether her immune system is destroying them.  With counts that low I think a hematologist might be the place t start. Good luck to you.

6blessings

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Re: My 13 year old With SJS and diminishing WBC
« Reply #10 on: January 29, 2010, 05:11:27 AM »
Thank you all for your replies. I hope everyone is having a wonderful day. ;) Mirandas principal called me from school. She was in his office i guess she could not even have a conversation with out getting out of breath it seems as if i amgoing to have to make calls today. Firm ones.  :-\ Ill check back in in a bit . tc e1!

6blessings; Julie

sewandsew

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Re: My 13 year old With SJS and diminishing WBC
« Reply #11 on: January 29, 2010, 07:37:41 AM »
My hemo ordered weekly shots of B12 and daily B12 sublingual to up the WBC.  It took a while but it helped and I continue with the injections monthly.  It is never a normal count but it is better than 1.5.

I'll say a prayer for her and send healing thoughts your way.

harlin

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Re: My 13 year old With SJS and diminishing WBC
« Reply #12 on: January 29, 2010, 10:43:22 AM »
6blessings
I am so sorry that your daughter is going thru this. I have a 16 year old neice with Lupus and she is suffering terribly. It is hard enough when you are my age but when it is a child it is heart breaking. I feel so bad for them. I know what I go thru and cannot imagine being their age.
Please give her a gentle hug for me
many prayers for her
hugs harlin

Nans

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Re: My 13 year old With SJS and diminishing WBC
« Reply #13 on: January 29, 2010, 11:54:21 AM »
Hi Julie,

I am located near Kokomo and have been checking out rheumys in the North-Indy area since my rheumy skipped town a few months ago.  There is one other in Kokomo but I am having no luck so far getting in to see her.  I did see that there are a couple of pediatric rheumys - probably one is your daughter's.  I do hope that Miranda's rheumy contacts another with more experience treating Sjogren's - perhaps between the two of them they can better treat a young person with SjS.

Hang in there and remember that there's a lot of folks here who will give you encouragement and support - even if all they can do is send an online hug.

Hugs to you and Miranda,

Nancy

jordozmom

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Re: My 13 year old With SJS and diminishing WBC
« Reply #14 on: January 29, 2010, 12:29:08 PM »
Oh Julie - I am so sorry!  My heart just sunk when I realized there is someone out there with a young one going through what we are going through.  You are my hero!!!  I have nothing to offer other than I am so sorry and I'll be thinking and praying for Miranda AND for you, too!!!!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
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