Author Topic: 16yr. old daughter is being tested for Sjogrens.  (Read 4108 times)

RachelsMom

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16yr. old daughter is being tested for Sjogrens.
« on: August 04, 2010, 01:32:43 PM »
Hi All!

A friend of mine referred me to Sjogrens World and I'm so glad she did!

My name is Monica and my 16yr old daughter is currently undergoing testing which seems to be pointing towards Sjogrens. She's had joint pain and fatigue for about 8 yrs. I've taken her to several Dr.'s all of whom dismissed her symptoms. To give a brief history, Rachel is a Senior this year and has been active in sports the last 6 yrs. and is currently doing Swimming and Softball. She's never been a complainer so she doesn't let her aches and pains stop her very often. As time has gone by her symptoms have progressively gotten worse and are attacking more joints on both sides of her body. She can be sitting, watching TV and her knee will start hurting or walking in the mall and her shoulder and elbow will start up. She has had stomach pains for several years with no definitive pattern in association with it. Severe fatigue and now in the last year she has had fainting spells and middle back pain. Her back pain is such where she has a hard time straightening back up if she's bent over. She now has to take Aleve before doing any of her sports or she's in terrible pain. She tries to ride it out most of the time but it's getting worse. When she saw a Rheumatologist a year and a half ago, they tested her for RF, ANA, Thyroid etc. and they came back negative. She was positive for inflammation (not sure what the initials are for that.) and that was it. They sent her home and suggested repeating the Thyroid in 6 months because it was slightly elevated. That was it. So a year and half passes (new thyroid test came back normal) and like I stated earlier, her symptoms are getting worse and more often. So I made an appt. with a Pediatric Rheum who ran a slew of blood tests. He seemed to be dismissing us at first but that's mostly Rachel's fault. Because she isn't a complainer, she minimizes her pain and discomfort to make it sound like she isn't that bad. Her blood tests came back with a Positive ANA & SSB this time but she showed no inflammation. He was scratching his head because he says her symptoms don't really fit but like I said earlier, she was severely minimizing her issues out of embarrassment. He sent her for an Xray on her knee and we are waiting for an MRI consult to be approved for the same knee. (Dr. said to pick a joint to have analyzed since they all bother her.) He also sent her home with a script for Plaquenil and we need to have the eye dryness test performed. I'm 40 and was diagnosed with OA & CDDD about 2 yrs. ago. I had a cervical spine fusion a year ago. So with that in mind, I have always thought she had a form of arthritis but tests seem to show otherwise. I also thought that the symptoms she has told me about, I fear sound very much like Lupus. I don't have any background info in regards to my family background and whether AI disorders run in the family. I do know that cancer runs rampant in the women on my mother's side.

I should also add that about 2yrs. ago, Rachel was taking Sotret (off brand of Accutane) for approx. 6 months. She had joint pain prior to taking the medication but noticed it was getting worse so her Dermatologist and I took her off. Unfortunately the joint pain didn't subside but instead continued to get worse. Flash forward a year and a half to this past July and Rachel decided she wanted to try the medication again since her acne came back in full force. (She was NOT on the medication when her blood draw was taken.) She just started the Claravis and after the second day she woke up feeling really dehydrated with her lips cracking and a week after that she had to start using eye drops several times a day. We both found that odd since the last time she took the medication, it took 3-4 MONTHS before her body began to dry out. So our question remains...is her rapid dryness from the medication or is the medication irritating an underlying issue? I asked Rachel to put together a list of her symptoms, how long they've been there, how often she feels them and on a scale of 1-10 what her pain level is. I also asked her to make a note of a typical day or week in regards to her aches and pains and what she does to treat her pain (Aleve, rest, ice etc.). This way we can give it to her Dr. so he can fully understand her symptoms without her being too shy or embarrassed to say otherwise in person. She has a follow up with him in 6 wks. I'm hoping we know more then.

Are there any other Teen sufferers out there with Sjogrens that may have similar issues?

Thanks for reading my ramble. :0)  I'm terribly nervous for her and because we are still testing, I haven't told anyone outside of my husband and daughter and the friend who referred me here. (Thanks Judy!)

romalo

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #1 on: August 04, 2010, 04:31:51 PM »
I was diagnosed in June, and had my 16 year old tested a few weeks ago.  Here ANA and SSA came back positive.  We are waiting on the pedi rheumatologist.  So, don't know if she has it or not, but probably will get it if not.  She only seems to suffer with fatigue and sun sensitivity.  She hasn't complained of the hallmark symptoms of sjogrens.

RachelsMom

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #2 on: August 05, 2010, 09:31:19 AM »
Hi Romalo!

Thank you for your reply. I appreciate any information I can get right now in regards to her blood tests, the disease and knowing that we're not alone helps too. I'm sorry to hear your daughter tested positive but happy that she's not suffering from any of the symptoms associated with it. What made you decide to see a Dr. who ran your blood screen? The friend who referred me here strongly suggested that I get tested myself since I have OA and AI diseases are known to run in families.

lynnmarie219

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #3 on: August 05, 2010, 06:38:30 PM »
Hi RachelsMom and Welcome to Sjogrens World!

I'm sorry to hear about the progressing symptoms that your young daughter is experiencing but glad that she has you in her corner to believe her and help advocate for her.

Since her ANA and SSB was positive this is definitely an indication that there is something autoimmune going on and it points to Sjogrens (I also have a positive ANA and SSB).

Plaquenil is also one of the first medications that our doctors give to us for autoimmune issues...it is meant to help with some of the inflammation, pain, and fatigue although it may take a while to reach its full effect (may take up to 4-6 months).

It sounds to me like the Pediatric Rheumy that she is now seeing is pretty much on the ball with the lab follow ups and treatment plan....a keeper for a doc!

Keep us posted!



 

RachelsMom

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #4 on: August 06, 2010, 12:55:38 PM »
Thank you Lynnmarie! I appreciate the kind words and encouragement.  :)  I finished making her appt's for further testing and therapy. By the sounds of it, this is going to be a long haul in regards to diagnosing. In the meantime I'm keeping my chin up and praying for the best. :0)

Joe S.

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #5 on: August 06, 2010, 01:29:18 PM »
Monica, I do not like reading about young people joining our numbers. I would suggest that you also read "Spoon Theory" at Butyoudontlooksick.com to help you understand what your daughter is going through. Peer pressure can be very difficult for our young to handle if they have an AI disease. Girls as you know have an even bigger challenge than most boys. I hope that she does not have this illness.
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aussie mum

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #6 on: August 06, 2010, 02:52:30 PM »
Hi Rachelsmom,

I know exactly what you're going through as my daughter was diagnosed with SJS at 17, just as she was starting her final year at school. She was very sporty too, playing both Netball & Soccer. She was rarely sick as a child so it was quite difficult for her to come to terms with having a chronic illness. Three years on, as a parent, I think the emotional toll can be one of the hardest things to deal with.

Once you are ready, I think it is important you let her school know what is going on. My daughter missed a lot of school that year and it helped that the teachers knew at least some of the implications of this illness.

In time, I think it helps if she tells her closest friends as well - they can be a great support if they know what's going on. My daughter chose not to tell them at first but quite often she had to pull out of social occasions at the last minute which did add to her stress. Stress really is a big factor in how my daughter is feeling, so she wasn't well during her exams and her end of year formal - thankfully she did get through it.

I think it's a good idea that you keep a diary of her symptoms and her reaction to medications. I really wish we did that. It is so easy to forget things and I think it helps the Dr too - Especially when the girls are too shy to say anything or complain when they see the Dr. (I still go to the specialist with my daughter)

I hope i don't sound too negative - My daughter had other issues as well, developing thyroid problems which went undiagnosed for about 2yrs and insulin resistance - but is doing a lot better now that she is on medication for those. She is at Uni, playing netball again. She has learnt how to read her body and rest when she needs to.

Sounds like your daughter is a very determined girl, so her attitude is great - that helps.

Take care, I hope you find answers soon.

Aussie Mum


   
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

romalo

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #7 on: August 09, 2010, 05:19:32 PM »
Hi Rachael's mom.  I had terrible gritty, dry eyes and dry mouth.  It started with enlarged lymph nodes and an elevated esr blood test.  Finally the dr. tested for Sjogrens.  My daughter has the reactions to the sun, just like me, so i asked her pedi to run the sjogrens antibodies tests, which she was pos to.  The ssa and ana.  we are waiting right now for the pedi rheumatologist appt. 

RachelsMom

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #8 on: August 10, 2010, 07:53:29 AM »
Thank you so very much everyone for sharing your thoughts and experiences with Rachel and I. Joe, I'll be sure to check out the link and info you suggested, thank you! IToday is her first day of Physical Therapy... hopefully it will help.  :)

SLEEPY101

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #9 on: August 10, 2010, 05:28:22 PM »
I am so sorry to hear about your daughter. I always had bad joints pain as a joint pain as a child and teen. But because my RF factor was negative it was always dimissed as growing pain. But I am wondering if my condition started as a child.

I am not sure if this information it accurate but a few weeks ago on a Attourney commercial it said some patients that have taken Accutane and developed Lupus. This might be something you might might to research.

RachelsMom

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #10 on: August 16, 2010, 08:41:45 PM »
Hi Sleepy101,

Thank you for your response and I wouldn't doubt your issues started young. From what I've learned, Sjogrens is difficult to diagnose mostly because many Physicians don't consider it and it can take so long to decide, 'Yeah, you have an Auto Immune disorder that best fits Sjogren's, let's see if we can't offer you some relief from your discomfort...'
 I've considered the Accutane road and how the medication could have contributed to her current issues and my conclusion is that she had them previous to starting the medication, however, it has gotten progressively worse after. I don't think I could prove that the medication is the underlying factor that got her here but I can't rule it out either. Regardless, we knew the medication had some risks involved, but we didn't know it could bring on Lupus. We were mainly educated in the horrible birth defects that could happen if a child was conceived while taking the medication. Joint pain was kind of presented as a side note to be wary of.

Frustrating day today. Took my daughter to a pediatric Opthamologist her Rheumatologist recommended, to give her the Shirmer test and apparently they don't DO that test at their clinic. ?!  Even though I mentioned at the time of making her appt. what she was being seen for, they failed to mention that they have never come across a 'child' that has possible Sjogrens to perform the test on. So, half the morning spent, not to mention the $35 co-pay and who knows what our insurance was billed, all for nothing. Kinda irritated!!! :0\

Joe S.

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Re: 16yr. old daughter is being tested for Sjogrens.
« Reply #11 on: August 17, 2010, 05:25:54 AM »
I understand your irritation. That situation happens a lot to us. I think it is part of the new treatment model of the AMA (American Money Association). As long as we are patient we are given the "Treatment". There are no "cures" only dollar extraction "Treatments".

I hope you find something that will help Rachel. Children are worse than chickens when it comes to pecking order. Support her all that you can.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism