# Prayers Needed for a Nervous Heart



## Gracie's Mom (Sep 7, 2007)

Please send us prayers tomorrow. My daughter, Kaeley, has been having lots of eye trouble. She is only 9 years old. She has dry eye - compared to a 45+ year old. It is extremely rare for children and even more rare because she isn't on any meds that would cause it. She is on artificial tears, and they have been pretty much been taking care of her eye pain and blurred vision after a 2 week regimen. But that is only masking the problem. We have an appointment with a Rheumotologist tomorrow that will be able to do more testing. We are suspecting an auto-immune disease in which she has many, many more symptoms. It's kind of scary for us. I am hoping the doctor is receptive to us and listens carefully. This is especially important because what we are suspecting is very, very rare in children (like 200 reported cases in the US. But not unusual for a Rheumy to detect in women after 40.). I'm guessing that it is rare in children mostly because optomotrist don't usually do this sort of testing with children because it is so not usually an issue with them. Regardless, I've emailed my Mom's Rheumy, who is suspecting it just hearing her symptoms. So, I have some reasonable suspicions. I'm really nerveous - please pray. I am ready to hear any news (except "We still don't know" - I just want to help her. 

I will be out all day tomorrow for work, appointment and Bible Study. I will update you on Thursday. Thanks so much.


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## mintchip (Apr 19, 2007)

:grouphug:*Sending them to you Kaeley and Karen*:grouphug:


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## mckennasedona (Feb 20, 2007)

I'll be sending prayers for you and for Kaeley.


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## Poornima (Jun 29, 2007)

Good luck to Kaeley! I pray that the doctor is receptive to you and has answers to help Kaeley.


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## isshinryu_mom (Mar 23, 2008)

I will be praying for you and your daughter, Karen. There's nothing worse than when it's our kids we're worrying for. Know that God is with you! :hug:


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## arlene (Jul 28, 2007)

Sending prayers your way


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## Gracie's Mom (Sep 7, 2007)

Thanks so much, everyone!!! I know this isn't hav related, but I'll take any prayers we can get.


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## mellowbo (Aug 12, 2007)

Aww Karen, darn it! You know I will be praying for Kaeley and you and your family. Have you tried that new thing I thing it's called Registasis (sp)? 
Carole
xxoox


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## Gracie's Mom (Sep 7, 2007)

mellowbo said:


> Aww Karen, darn it! You know I will be praying for Kaeley and you and your family. Have you tried that new thing I thing it's called Registasis (sp)?
> Carole
> xxoox


I think its Restasis?? My optomotrist said he will look into it if Kaeley gets worse. It is apparently safe in adults, but he hasn't heard of anyone use it on children. It is actually like a chemotherapy made into drop form for the eyes. Apparently no side affects like chemo though. I think I remember this right. I've read so many things lately. Sounds like you have some eye issues yourself??


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## Jill in Mich (Feb 24, 2008)

I'll keep you all in my prayers & thoughts. I hope you get some answers and an action plan to help Kaaley.


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## Missy (Nov 6, 2006)

Karen, my thoughts are with both you and Kaely. 9 is so young. Are you suspecting Sjorgenson's? We have auto-immune diseases in our family. And I know how tough they can be. But usually the hardest part is diagnosing them because they imitate so many other things. I hope you find answers tomorrow, so you can start to find relief and also be on the look out for other symptoms. As I am sure you know, many people with auto-immune have more than one. It sounds crazy but please ask your dr about a therapeutic dose of pharmaceutical grade of fish oil fo Kaely as a start of with other therapy. It has done wonders for me and has replaced a lot of scrarier drugs like steroids. 

Good luck and Hugs for you both.


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## Salsa's Mom (Mar 18, 2008)

Sending good thoughts your way for you and your daughter!


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## Gracie's Mom (Sep 7, 2007)

Missy said:


> Karen, my thoughts are with both you and Kaely. 9 is so young. Are you suspecting Sjorgenson's? We have auto-immune diseases in our family. And I know how tough they can be. But usually the hardest part is diagnosing them because they imitate so many other things. I hope you find answers tomorrow, so you can start to find relief and also be on the look out for other symptoms. As I am sure you know, many people with auto-immune have more than one. It sounds crazy but please ask your dr about a therapeutic dose of pharmaceutical grade of fish oil fo Kaely as a start of with other therapy. It has done wonders for me and has replaced a lot of scrarier drugs like steroids.
> 
> Good luck and Hugs for you both.


Missy - I'll check into the fish oil. I had not heard of that before.

Yes, we are suspecting Sjogren's Syndrome. Not something I would wish on anyone - but a 9 year old???!!! It kills me! She has both hallmark symptoms - dry mouth (noted at the last dental appointment) and dry eye. She also has many, many symptoms of it - too many to mention. My Mom & I both have Rheumatoid Arthritis and my sister, my Mom and both of my Grandmas had thyroid issues. So, auto immune diseases also run in our family, too.

What auto immune disease do you have, if you don't mind me asking?


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## Gracie's Mom (Sep 7, 2007)

We still don't have enough information to diagnose her. So, please don't think I'm trying to do that. But when my Mom's Rheumy mentions it because he suspects it from what he is hearing. Then, I start reading more and more. The more I read, the more it fits. Kind of crazy. I've been obsessed and have found a wonderful forum for it. The people there have been incredibly supportive and think I have enough to warrant further investigation as well.


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## Eva (Jun 20, 2008)

Hugs to both of you for tomarrow. 
I'll keep you in my thoughts and prayers.


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## JASHavanese (Apr 24, 2007)

Gracie's Mom said:


> Please send us prayers tomorrow. My daughter, Kaeley, has been having lots of eye trouble. She is only 9 years old. She has dry eye - compared to a 45+ year old. It is extremely rare for children and even more rare because she isn't on any meds that would cause it. She is on artificial tears, and they have been pretty much been taking care of her eye pain and blurred vision after a 2 week regimen. But that is only masking the problem. We have an appointment with a Rheumotologist tomorrow that will be able to do more testing. We are suspecting an auto-immune disease in which she has many, many more symptoms. It's kind of scary for us. I am hoping the doctor is receptive to us and listens carefully. This is especially important because what we are suspecting is very, very rare in children (like 200 reported cases in the US. But not unusual for a Rheumy to detect in women after 40.). I'm guessing that it is rare in children mostly because optomotrist don't usually do this sort of testing with children because it is so not usually an issue with them. Regardless, I've emailed my Mom's Rheumy, who is suspecting it just hearing her symptoms. So, I have some reasonable suspicions. I'm really nerveous - please pray. I am ready to hear any news (except "We still don't know" - I just want to help her.
> 
> I will be out all day tomorrow for work, appointment and Bible Study. I will update you on Thursday. Thanks so much.


You have our prayers. Could you do me a favor and email me privately please? My daughter has this and was diagnosed in her 20's but she has glossed over it with me and now this sounds scary. I didn't know other things went with it.


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## havaluv (Oct 15, 2007)

Karen, I'll be praying for you and Kaeley. I hope you get answers soon. :hug:


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## Lina (Apr 26, 2007)

Karen, I will keep you and Kaeley in my thoughts.


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## Leeann (Feb 28, 2007)

Karen you and Kaeley are in our thoughts and prayers.:hug:


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## Laurief (Nov 7, 2006)

Karen, you and your daughter are in our thoughts today - hoping for good news!!!


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## ivyagogo (Sep 11, 2007)

Good luck today. I'll be thinking about you and your daughter.


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## hartman studio (Feb 14, 2008)

Good Luck with the tests for your daughter. My husband is an eye doctor and I asked him if he had seen this in children in his practice- he had one who was diagnosed in her early teens. I didn't ask him about Restasis for children although he does prescribe this fairly frequently for his older dry eye patients. He did say that the Omega 3 fish oil supplements would be beneficial for her dry eyes. You want to keep them lubricated well to avoid keratitis which can be a chronic problem with severe dry eyes. If you have any other eye related questions, I'll be happy to ask him if you want. Jocelyn


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## Missy (Nov 6, 2006)

good luck today Kaely and Karen.


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## Paige (Sep 12, 2006)

Karen you and Kaeley I am hoping for the best for you today.


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## irnfit (Nov 21, 2006)

Sending healing prayers your way.


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## ama0722 (Nov 28, 2006)

Sending good thoughts your way this morning!


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## trueblue (Jan 22, 2008)

:hug:Keeping you guys in my thoughts today.


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## Leslie (Feb 28, 2007)

You and Kaeley are in my prayers.


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## juliav (Nov 21, 2006)

Karen,

Good luck today, we are thinking of you and sending our prayers your way.


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## havaluv (Oct 15, 2007)

Thinking of you today, Karen and Kaeley. Sending good thoughts and prayers your way.


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## Suuske747 (May 9, 2007)

Wishing you a lot of strength!
Sending warm thoughts your way!


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## mellowbo (Aug 12, 2007)

My first thought was of Sjorgenson's also. I am familiar with this disease although, like Missy says, the diagnosis is difficult. I didn't know Restasis was a form of chemotherapy. Interesting. My neighbor is using it and it has helped her eyes a lot!
Waiting to hear about the dr. appointment Karen. Praying for good news!!
Carole


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## SaydeeMomma (Sep 9, 2008)

Karen
I'm sorry to hear about your daughter. My 14 year old daughter has an autoimmune disease RA/Lupus/Srojens. She has lots of symptoms, but one of them is very dry eyes. Once diagnosed, we found out her contacts were destroying her corneas because of the dryness, basically sanding down the surface and causing permanent damage. Her rheumatologist gave her prescription drops for her eyes that help alot, but she says what helps her the most is that she carries a little bottle of saline solution in her backpack and moistens her eyes throughout the day.

My advice to you would be to MAKE the specialists listen to any and all symptoms. Don't stop until you find a doctor you are comfortable with. Before my daughter was diagnosed we saw one specialist that tried to downplay my daughters beet-red aching, arthitic hands as "poor circulation." My poor daughter left the office and bawled her eyes out because she knew it was much more serious than just poor circulation!Needless to say, a good doctor makes all the difference.

My prayers are with you that your daughter will be quickly diagnosed and well cared for.


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## suzyfrtz (Nov 12, 2007)

Karen, 
Please know my prayers are with you and your precious daughter.
Suzy


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## Missy (Nov 6, 2006)

Karen, just checking back to see how your appointment went today with the dr. 
One of my sisters has lupus, but it has been in remission for almost 20 years. My other sister has always had lupus like symptoms, but not officially lupus, but just recently got diagnosed with sjorgenson's and everything else seemed to make sense. My dad had something called periartiritusnodusa (PAN) he was allergic to his own blood. I have a lot of non-specific things, that get called fibromyalgia, and I also have crohn's disease. I have found the fish oil to be very helpful.

I suspect your drs will take your daughter seriously and hear everything out. She is too young for them to blame it on stress, or depression, or hypochondria - like a lot of drs do to women in their 30's, 40's, 50's.


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## Laurief (Nov 7, 2006)

Karen, how did you guys make out??


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## LuvCicero (Mar 31, 2008)

Praying for good news for your daughter ...and you.


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## marjrc (Jan 13, 2007)

Ah Karen, I'm sorry to hear about your daughter's condition. It sounds serious, but I do hope the doc you see will give you what she needs for her discomfort and pain. I know all about pain conditions and as others have said, finding the right doc to really hear you out and offer whatever he/she can is like finding gold! Good luck and know that I am sending healing thoughts and prayers. ((hugs))


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## isshinryu_mom (Mar 23, 2008)

Just checking to see how your appointment went today, Karen? You've been in my thoughts and prayers.


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## Scooter's Family (May 23, 2008)

Karen-you and your daughter will be in our prayers. 

We should also pray that the doctors are open to hearing her symptoms and situation and able to devote the time and effort needed for a proper diagnosis! My oldest son has had some health problems and I found great support from an online forum, best part was that he didn't have the disease they first thought! 

Hang in there! :grouphug:


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## Cheryl (Mar 17, 2007)

Karen--I am thinking and praying for you and your daughter. Let us know how the appointment went when you get a chance.


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## isshinryu_mom (Mar 23, 2008)

Just checking in on you, Karen.


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## mintchip (Apr 19, 2007)

:hug: Hope all went well:hug:


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## Gracie's Mom (Sep 7, 2007)

Wow - You guys are wonderful!!!!! I so much appreciate your prayers more than you can believe. Thank you!!

Kaeley was so brave yesterday!!! She was amazing with the appointment, and blood draw. She cried for the blood draw, but was truly amazing!! She kept her little arm out there despite the discomfort. She made me so proud!!! This is sort of confusing to her because she can't see the relation - "Why do they need my blood if my eyes hurt?" She understands they can see certain things in blood that could indicate problems that could be causing it. But doesn't fully understand all of it. But I'm not sure I understand either. 

At the Rheumotologist we first spoke to an intern or someone else and he took tons of information. Then, the doctor came in - he was informed by the intern. He really seemed to be on top of things and DID take time to listen - yeah!! He ran all of the tests for Sjogrens, I believe ALL needed to diagnose it. Results are due back by Monday. He ran a urine test for things (hopefully not related). He also had her do a chest X-Ray in case her dry cough had anything to do with her lungs and SJS (most likely not - I think it is habitual more than anything)??? I think he was trying to be careful. Unfortunately, the Optomotrist report came to him illegible!! But he took all my information I remembered, and is going to call him. He recommended we see an Opthamologist for a doctor more familiar with these types of eye issues and aa Shirmers test, which includes a small piece of paper in your eye for 5 minutes to measure your tears.

His ONLY thought was - he has never seen a case where the paratid glands were not swollen. BTW - the is NOT the case when you look at the sjogrensworld.org forum. (Kaeley has no problems with this that we've noticed. She has little chubby cheeks, so not sure if we would have noticed. But they certainly have not caused her pain.) He thought she had plenty of symptoms, but that was his only thought on that it might be negative. He was going to check with his colleagues to see if they new more about cases without swollen paratid glands.

Sjogrens is sort of a complicated diagnosis. 20% + who have it don't come up with a positive blood test. Some people do a lip biopsy of your salvitory gland to see if the disease has invaded those glands. That is another way of diagnosis. We both agreed that we didn't think it would be worth it at this point because her symptoms are not great enough yet. And it is quite a procedure for a 9 year old to endure. Though he does realize she could still have it without a positive test. She may test positive later in life based upon the information. 

That's pretty much it. Now, we just need to wait until Monday for the results. And then make an appointment with an Opthamologist.

Sorry for the lengthy post. It sort of helps me get my thoughts together. Now, just prayers are needed that - if she does have this that the results will be positive. I don't want her to have it, but I want to know if she does. Then, we can be on the lookout of certain things in her future.

Thanks again for your prayers - you guys are wonderful!


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## Gracie's Mom (Sep 7, 2007)

hartman studio said:


> Good Luck with the tests for your daughter. My husband is an eye doctor and I asked him if he had seen this in children in his practice- he had one who was diagnosed in her early teens. I didn't ask him about Restasis for children although he does prescribe this fairly frequently for his older dry eye patients. He did say that the Omega 3 fish oil supplements would be beneficial for her dry eyes. You want to keep them lubricated well to avoid keratitis which can be a chronic problem with severe dry eyes. If you have any other eye related questions, I'll be happy to ask him if you want. Jocelyn


Thanks, Jocelyn!! I'm going to start her on fish oils. Also - do you know if an Opthamologist can do a Shirmer's test or do I have to take her to an Opthamologist?


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## marjrc (Jan 13, 2007)

Karen, thanks for the update on Kaeley's doc visit. It sounds like the specialist is covering everything. How wonderful to hear because it means you can relax a little bit and know Kaeley is in great hands. We'll be waiting 'til Monday right along with you. 

Kealey is a very brave girl and you have every reason to be proud. You are a great mom! ((hugs))


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## Gracie's Mom (Sep 7, 2007)

SaydeeMomma said:


> Karen
> I'm sorry to hear about your daughter. My 14 year old daughter has an autoimmune disease RA/Lupus/Srojens. She has lots of symptoms, but one of them is very dry eyes. Once diagnosed, we found out her contacts were destroying her corneas because of the dryness, basically sanding down the surface and causing permanent damage. Her rheumatologist gave her prescription drops for her eyes that help alot, but she says what helps her the most is that she carries a little bottle of saline solution in her backpack and moistens her eyes throughout the day.
> 
> My advice to you would be to MAKE the specialists listen to any and all symptoms. Don't stop until you find a doctor you are comfortable with. Before my daughter was diagnosed we saw one specialist that tried to downplay my daughters beet-red aching, arthitic hands as "poor circulation." My poor daughter left the office and bawled her eyes out because she knew it was much more serious than just poor circulation!Needless to say, a good doctor makes all the difference.
> ...


Maya - Wow! I can't imagine what your daughter must have went through. I hope she is doing well today. How old was she when she was diagnosed?


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## Missy (Nov 6, 2006)

thanks for the update Karen. I will keep both you and Kaeley in my thoughts.


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## Scooter's Family (May 23, 2008)

Maya-Kaeley did well because you, as the mommy, handled it well! Kids are so resilient!!! I'm glad you'll get results so quickly and you'll both be in our prayers.

Get Kaeley an ice cream!!!:biggrin1:


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## Gracie's Mom (Sep 7, 2007)

Scooter's Family said:


> Get Kaeley an ice cream!!!:biggrin1:


That is so funny - that is the first thing we did - took her for ice cream.


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## Scooter's Family (May 23, 2008)

When my son was being tested for what they thought was an immune disorder he had to have blood drawn twice a week. At the time he was in 2nd grade and we'd go in and he would just "assume the position" at the table for blood draw. It broke my heart! But we would always get an ice cream or a donut on the way home.


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## hartman studio (Feb 14, 2008)

Karen, I hope you get good news on Monday. As far as the Shirmer's test goes most Optometrists can do this(usually it would be a tech- not even the doctor). Unless you feel that your Optometrist is not well qualified (some that practice at Walmarts, etc do not do much medical management and you might want a different doctor) dry eyes are so prevalent that almost any optometrist can easily manage that type of patient. Optometrists, on the whole, will see more dry eye patients than most Opthalmologists. If you do decide to see an Opthalmologist I would recommend seeing a corneal specialist as most issues will involve problems with the cornea. PS- I am a registered nurse that has worked off and on in the eye field for the last 10 years so I am pretty familiar with most of the drugs and treatments. Feel free to PM me if you have any questions at all. Jocelyn


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## Gracie's Mom (Sep 7, 2007)

hartman studio said:


> Karen, I hope you get good news on Monday. As far as the Shirmer's test goes most Optometrists can do this(usually it would be a tech- not even the doctor). Unless you feel that your Optometrist is not well qualified (some that practice at Walmarts, etc do not do much medical management and you might want a different doctor) dry eyes are so prevalent that almost any optometrist can easily manage that type of patient. Optometrists, on the whole, will see more dry eye patients than most Opthalmologists. If you do decide to see an Opthalmologist I would recommend seeing a corneal specialist as most issues will involve problems with the cornea. PS- I am a registered nurse that has worked off and on in the eye field for the last 10 years so I am pretty familiar with most of the drugs and treatments. Feel free to PM me if you have any questions at all. Jocelyn


Thanks so much, Jocelyn. I will definitely come to you when I come up with more questions. Have you seen Sjogrens in children?


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## isshinryu_mom (Mar 23, 2008)

Karen, Give Kaelay a big hug from me for doing so well at her appointment! My rheumatologist appointment was quite stressful for me (and I am 45!!!!!) I will keep you both on my prayer list while you wait on the results of the tests.


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## havaluv (Oct 15, 2007)

And another hug from me too...:hug: You're still in my prayers.


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## Cheryl (Mar 17, 2007)

An ophthamologist is a medical doctor, who diagnoses and treats diseases of the eye and its components. An optometrist is the person you go to when you need new glasses. They can also diagnose some diseases of the eye but they cannot treat with surgery because they are not medical doctors. You will need to contact your optomologist to see if they can perform this particular test. Even if they can, I would consider consulting a opthomologist because they can deal with more eye diseases. 

Karen, my thoughts and prayers are with you and your daughter. Keep us posted.


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## hartman studio (Feb 14, 2008)

Cheryl, I don't know about the state of California as state's differ in their scope of practice for doctors, but most Optometrists are quite capable of a simple Shirmer's test (which, by the way, is not a conclusive test). I am sure if her eyes are as dry as they sound she has significant punctate staining when they put flourescent dye in her eye. No, Optometrists can't perform surgery, but can manage most if not all medical conditions of the eye- not just prescribe eyeglasses!! My husband's practice is 75% medical management. They have all the equipment that any opthalmologist has to diagnose and treat diseases and conditions of the eye. I am not saying that they do not refer to Opthalmologists when necessary, but they refer to specialists in specialties such as neuro, retina, or cornea. Pediatrics when strabismus surgery is necessary, or for an ROP baby. One of my previous jobs was calling on Optometrists in North Carolina as a liason for TLC laser eye center, so I can definately say that most are well qualified. However, the "BIG BOX" retailers such as Walmart bring in Optometrists just to refract and sell glasses and contacts- they are not interested in managing medical conditions and do not have the equipment to manage them even if they wanted to. Sorry for the long tirade, but it is a sore subject with the Optometric community. As my brother is an Invasive Cardiologist (therefore a Medical Doctor), it is not that I dislike medical doctors, but if Karen likes her Optometrist and is comfortable with his ability, she shouldn't feel that she needs to switch doctors. In my experience most Opthalmologists will have their techs do everything and you will be lucky to see the doctor for more than 2 to 3 minutes and I have worked for Opthalmologists, too. An Optometrist that Karen has a repoire with will likely spend much more time with her and her daughter. If he feels she needs to see a corneal specialist- he would refer her to someone he feels would be good. And, no, Karen I have not personally seen a child with Sjogren's, but my husband has many adult patients that I have seen. Jocelyn


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## Gracie's Mom (Sep 7, 2007)

Thanks for the info - Chery & Jocelyn. I appreciate both of your opinions. I scheduled her Shirmer test on Monday with the Optometrist. I do love him. He spends so much time with us - it is unbelievable in todays world. Our Rheumatologist wants to "feel" out his experience when he calls to talk to him regarding his illedgible notes. We wants to make sure the _Rheumatologist_ is comfortable with the Optometrist treating Kaeley. My guess is maybe?? that we will continue to see the optometrist unless she has more serious complications - cornea related or complicated infections, etc. When I spoke with the Optometrist yesterday - he seemed to be very on top of things and showed much concern. He boosted my confidence. I'm sure he will refer out when the time is right.

Jocelyn - I was just curious if you had seen children with it because I was curious as to how severe their conditions we compared to Kaeley, how they are doing, etc. I've been trying to find the 9 year old on the sjogrensworld.org forum, but they haven't logged in for a while, and I haven't been able to reach them.


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## mellowbo (Aug 12, 2007)

If it helps at all to know, I've had the shirmer test and it is not painful or bad at all. You don't even feel it. The only irritating thing is sitting there waiting for the time to pass. Karen, maybe you could think of something you could talk to her about that would make the time go by faster? Even though I failed the test it was inconclusive for sjorgens syndrome. I'm praying Kaeley just has dry eyes. Thinking about you gf, your plate certainly is full right now.
Carole


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## Gracie's Mom (Sep 7, 2007)

I don't have the official results from the Rheumy yet. I'm hoping for a call back tomorrow.

But Kaeley had another (different) test for her eyes today. It's called a Schirmer's Test. It is different than the original Slit Lamp Test, but they are both useful. I could explain, but I don't want to bore you. Anyway, the Schirmer revealed that her eyes very severely dry in the way that she is not producing the amount of watery tears she needs!! It is my understanding that the Optometrist believes it is affecting 2 different types of glands in her eyes. 

I'm am really uneasy about this. Please say your prayers. We could really use them. Thanks so much!!!


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## Leeann (Feb 28, 2007)

:hug: Karen, our prayers continue.


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## mintchip (Apr 19, 2007)

:hug: You're still in our prayers:hug:


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## LuvCicero (Mar 31, 2008)

The hardest thing for a parent to have to deal with is worring about the health of a child. You and your daughter are in my prayers!!


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## hartman studio (Feb 14, 2008)

Karen, just got your pm-sent response. Try not to worry too much-dry eyes can be treated. Have you gotten her other test results back yet? Jocelyn


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## Mijo's Mom (Apr 19, 2007)

Jsut reading this thread for the first time Karen. Please know that I am praying for your daughter too.

~Connie


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## Gracie's Mom (Sep 7, 2007)

FINALLY - Results!! She is negative on everything. It kind of stinks - if you know what I mean. I was hoping to be able to have a cause to all of these problems. The Rheumy asked if we wanted to do a lip biopsy (quite a painful thing to endure and not always conclusive) and we have declined at the moment. I just feel as if I'm pushing her where she is not ready to go right now. I KNOW she can still have Sjogrens with all of her symptoms. As time goes on, we may retest. As of now, the Optomologist * strongly believes* she has an auto immune disease, but he just can't put a name on it. So, we are going to be super cautious in how we move forward. She is going to be carefully monitored with her eye condition - because obviously something is seriously wrong there. We are going to do MORE intensive artificial drop "therapy". He is going to check into Restatsis for children because he has heard how it is for children. Also, I will start her on Flaxseed Oil. He also mentioned fish oil, but he thought flaxseed oil would be more benefitial. I may end up getting a Salvitory Gland Flow Test to check out her saliva so I can determine whether or not I should get her teeth cleaned more than every 6 months. This is not the end of it, but this is as much as the Rheumy can do at this point - ARGHHHH!!!

Right now I'm feeling - happy, sad, excited, angry, frustrated, confused as to where to go and what to do next, wondering what is causing all of these symptoms. I still feel it could be sjogrens. So, so confused!!!!!!!!!!!!!!!!!!!!!!!!!!! I just want the very best for my little girl!!!

Thanks so much for all of your prayers and concerns. They came at a time that I needed them most.


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## Scooter's Family (May 23, 2008)

Karen-I understand what you mean, sometimes any diagnosis is better than none as you can at least plan and move forward. You and your family will be in our prayers. All the best to you and your family.

**Just curious...has she seen an immunologist?


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## Missy (Nov 6, 2006)

Karen, I know how you feel. It would be a relief to have an answer. But, no news is good news...in a way...yes? I think the flax/fish oil could have a real positive effect. as well as the tear therapy. I know my friends hate it when I compare dog experiences with their children's...but...I know how you love your Gracie. Cash had extremely dry eyes-- in fact the vet did that test to check his tears (with the paper in the eye) and he made half as many. We used a gel tear replacement for about six months and added fish oil. I stopped doing the gel out of laziness, but his eyes are completely better for over a year now. 

I am sure what Cash had was not the same as Kaeley but I just use this experience to tell you to keep the faith. Even if it is an auto-immune, these remedies could help her go into remission and perhaps a permanent remission. My oldest sister, had a bout with Lupus about 15 years ago. It was horrible...BUT...she went on steroid's for a few years and she has never, ever, had any problems ever again. Not even in her blood work. 

Hugs to you Karen. And extra hugs for Kaeley. I know it has not been easy.


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## Julie (Feb 8, 2007)

Just seeing this thread for the first time. I'm so sorry to read of your little girl's troubles Karen. I do hope the therapy works and her eyes will improve. I'm wishing the best for Kaeley....sending prayers-----


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## Thumper (Feb 18, 2007)

Gracie's Mom said:


> FINALLY - Results!! She is negative on everything. It kind of stinks - if you know what I mean. I was hoping to be able to have a cause to all of these problems. The Rheumy asked if we wanted to do a lip biopsy (quite a painful thing to endure and not always conclusive) and we have declined at the moment. I just feel as if I'm pushing her where she is not ready to go right now. I KNOW she can still have Sjogrens with all of her symptoms. As time goes on, we may retest. As of now, the Optomologist * strongly believes* she has an auto immune disease, but he just can't put a name on it. So, we are going to be super cautious in how we move forward. She is going to be carefully monitored with her eye condition - because obviously something is seriously wrong there. We are going to do MORE intensive artificial drop "therapy". He is going to check into Restatsis for children because he has heard how it is for children. Also, I will start her on Flaxseed Oil. He also mentioned fish oil, but he thought flaxseed oil would be more benefitial. I may end up getting a Salvitory Gland Flow Test to check out her saliva so I can determine whether or not I should get her teeth cleaned more than every 6 months. This is not the end of it, but this is as much as the Rheumy can do at this point - ARGHHHH!!!
> 
> Right now I'm feeling - happy, sad, excited, angry, frustrated, confused as to where to go and what to do next, wondering what is causing all of these symptoms. I still feel it could be sjogrens. So, so confused!!!!!!!!!!!!!!!!!!!!!!!!!!! I just want the very best for my little girl!!!
> 
> Thanks so much for all of your prayers and concerns. They came at a time that I needed them most.


I think that is the most 'frustrating' thing about auto-immune diseases (I have a few of them, starting as a child and still to this day!) The medical community seems to know very little about them, especially the newer ones that are mimicking lupus, lyme, and other things. Me? I have 4-5 auto-immune diagnosis, but personally, I believe it is ONE problem, and they just haven't figured it out yet.

Has your doctor told you to keep a food/beverage diary for her? If not, I'd highly recommend it as many AI diseases can have triggers with certain foods, preservatives, dyes, etc. Limiting triggering foods/drinks might not necessarily cure the problem, but it is helpful to know IF certain things exacerbate the problem.

I have every single symptom of Lupus, yet my last 3 tests came back negative, so did the Lyme, I know exactly how you feel because once you have a definitive ANSWER, then its easier to move forward in controlling the problem.

Also I'd check only for a Sjogrens forum or group if you havent' alreadyl They can be a wealth of information!

XOXO,
Kara


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## Gracie's Mom (Sep 7, 2007)

You are all so wonderful. Thanks for your emotional support through all of this for my daughter. She's not even a Hav!!! LOL!!! We are somewhat confused as to what to do for the next step. The Optometrist she is seeing is wonderful, but the Rheumatologist recommended we see an Opthamelogist. I'm somewhat confused!! I'm sure it will all work itself out. Then, we may end up doing some salvitory testing - to test the amount, flow, quality, etc. . . 

Kara - it seems like you were hit hard with the AI diseases. I hope you have them under control or are feeling OK. I found a Sjogren's forum about a month ago. They have been VERY informative and wonderful. Very warm people, but not quite as many active as this forum. They were the ones who kind of pushed the blood test. They said she had plenty of symptoms. I LOVE the internet - it is such a wonderful resource. Addicting - darn it!! But helpful.


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## Thumper (Feb 18, 2007)

Oh Karen,

I really hope its not an AI issue, because I've noticed that many people have more than just one AI problem. I don't know much about Sjogrens, but I do know she is more susceptible to other AI issues, they often go hand in hand with each other.

When I was a child, I had a mystifying rash on my legs and arms that no doctor could figure out how or why, then the allergies, then the other problems, and even in my 30's I started developing allergies to foods I used to be able to eat! And I mean, wheezing and red rashes on my skin. Baffling. Your body just decides to fight the 'normal' things that are supposed to be there, and treats it like an invader/virus/bacteria, etc. And there is no real insight or research.

But, over the last 20 years or so, I dont know anyone that doesn't have a friend or relative with an AI issue, so with all its costing the insurance companies, you'd think they'd be working on finding a cause!

I'm glad you found a forum! I do think blood tests can be wrong, especially with children.

Hugs,
K


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## Laurief (Nov 7, 2006)

Karen,
Just wanted to say that I am keeping your daughter in my prayers, and hoping for good news from the doctor. It is always harder being the Mommy, 
knowing that you would take this on for your kids in a second!! Keep the faith! 
Laurie


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## isshinryu_mom (Mar 23, 2008)

Karen {hug}

Just wanted you to know I am keeping you and your daughter in my prayers. It is so frustrating to have no explanation for what she is experiencing and I know how you must feel (going through this myself). You are a very caring, loving mom. Keep us informed!


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## Gracie's Mom (Sep 7, 2007)

An emotional moment . . .

Just had to share this song, I'm sure you have heard time after time. But it has been pulling at my heartstrings whenever I hear it. It is such a fitting song - especially since it is my daughters eyes that are causing the problems. Wish you all knew her - she has such a beautiful personality and such great compassion for her age. That is why she was truly sent to rescue me. It just makes me realize how important all of our children are. And sometimes we just blow them off because we don't have time for them. How sad!!! God is working in my life!!! Also - 2 pictures to see a glimpse of her. And another of me with both of my kids - in the role of Mom. 

In My Daughter's Eyes by Martina McBride

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes
Everyone is equal
Darkness turns to light
And the world is at peace
This miracle God gave to me
Gives me strength when I'm weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
Is had enough
It's givin' more when you feel like givin' up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes
I can see the future
A reflection of who I am
And what we'll be
And though she'll grow and someday leave
Maybe raise a family
When I'm gone
I hope you'll see
How happy she made me
For I'll be there
In my daughter's eyes


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## Scooter's Family (May 23, 2008)

You and your children are beautiful! Hugs and prayers to all of you.


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## BeverlyA (Oct 29, 2006)

Karen,
I'm just reading this thread for the first time and it's just breaking my heart. Your love for your daughter is so moving and powerful it brings tears to my eyes. You are so blessed to have each other.

I have secondary Sjogrens with RA and lupus, and although I'm 48, I've had undetermined autoimmune diseases since I was a child. 
For most everyone with Sjogrens, it takes years to get a diagnosis, which is frustrating, but at least you are aware of what is going on and can treat the symptoms.

One thing you mentioned was the paratid gland, and I have to admit, I have no idea what that is, I'm going to have to look it up. I'm guessing the Dr. did all the regular blood tests such as SSA, SSB, ANA, RA and sed rate. If indeed these were all normal, that's terrific, but I can see how it would be unsettling.

Along with my medications, I'm using Optive eye drops, it's OTC and there is also a good homeopathic lubricating drop but I can't remember the name of it at the moment. 
Some things I've found to really help me are to always have water available. I drink before I take a bite of food usually. I have water in my car and carry a bottle of water in my purse. I don't make a phone call unless I have a bottle of water available. I keep hard candy handy to suck on for my throat. These things might help that chronic cough.
Does Kaeley wear glasses? If she doesn't you might have her wear sunglasses whenever she's outside to protect her eyes from the wind as much as anything, and a pair of clear glasses if she ever uses a hair dryer.

I think the single most important thing is to get plenty of rest. Encourage her to take time to relax and always make sleep a priority.

Best of luck Karen, you and Kaeley will certainly be in my thoughts and prayers. Please keep us posted.

Beverly


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## Gracie's Mom (Sep 7, 2007)

Good advice, Beverly. (From someone who obviously knows) Love your sunglasses idea. She has always drank a ton of water. Now I'm wondering if that was just to compensate for her dryness naturally. So sorry to hear you have Sjogrens. Hope you are doing well. I found sjogrensworld.org. It is a forum. Very friendly people. Highly recommend it!!

I am going to take her to an Opthamologist afterall. I don't think I will learn much more, but just in case I'm gong to do that. I would be very interested in hearing what other drops you are using. We are trying to come up with the best plan for her right now, so we are still adjusting things around a bit.


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## Sheri (Oct 11, 2008)

Your children are beautiful, and so are you.

It is so hard when your child is not well....

Sheri


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## mellowbo (Aug 12, 2007)

Karen, you and your children are BEAUTIFUL!!!! I'm proud to know you! 
Carole


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## JASHavanese (Apr 24, 2007)

I stopped in to send Karen hugs and am sending them to you as well Beverly. :hug:


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## MaddiesMom (Apr 1, 2007)

Karen- I'm so sorry to hear about the health problems your beautiful Kaeley has been going through. As a Mom, I know how difficult this must be for you. You both are in my thoughts and prayers. :hug:


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## marjrc (Jan 13, 2007)

Karen, you and your family are beautiful and I love seeing the photos! I have no advice to give and it seems others have been through similar experiences, so they can help out more. Please know that you are in my thoughts and prayers. ((hugs))


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