Ideas, anyone? For my teen daughter.

[Rachel F]

Hi all-
I got significant help with this forum several years ago- a member  of SJS referred me to the rheumy that finally diagnosed me (after seeing several Drs who had no idea)- so now I am back to get your ideas for my daughter. I most likely have Sjogrens- no lip biopsy but given bloodwork and symptoms that is probably what I have.

My daughter, Tess, is 15- began having body aches and diagnosed with mild hypothyroidism (not hashimoto's) a few years ago. Then she had signs of Raynaud's and was diagnosed with that. Last year she started have post-exertional malaise. If she did anything that was an all-day activity, the next day, or next few days, she could not leave the house.

In November this year, she just started having bad days that would not stop. She hasn't been to school since November- is in Cyber now. She is extremely tired in the AM- feels better as the day goes on. Her rheumy has diagnosed her with Amplified Musculoskeletal Pain Syndrome (?). She seems to have symptoms of POTS, chronic fatigue, and fibromyalgia but he will not give her those other diagnoses. She is able to get out of the house once a week in the evening for an hour or so but that is it. 

Her symptoms are extensive (these come & go, may not have each one each day): headache/migraine, stomach aches after eating/feeling full right away, pounding sensation in her chest, muscle/joint aches, mild tremor in her hands, fatigue, lack of appetite, sensitive to light (visually), trouble concentrating/foggy, cold hands and feet. At times she will get sore throat and tender lymph nodes in her neck, and she has weight loss since being sick. She was about 120 and is now 109. She sleeps about 12 hours a day.

Her blood work so far has shown only mildly elevated  ESR(Sed Rate) and elevated IGG (gluten sensitive). She is on gluten free diet since December.

She takes Armour and seeing a hormone dr who put her on the Pill to balance hormones as well as vitamins, and has her taking Pregnenalone supplement. Hormone Dr. is testing cortisol and says her hormones are whacky. She is trying different things to get those on track. Sorry I won't put all the hormone test results here- they aren't standard tests I don't think.

To make it worse, Tess hates going to any medical Dr. She sees a chiropractor that seems to help with the headaches. I mentioned maybe POTS and the pediatrician has referred her to a cardiologist. She is starting to refuse to go to the dr because "no one does anything that helps anyway."

Ugh. So frustrated. We live in Western PA. Any ideas, doctors, suggestions, I'll take anything. I can't convince her to try acupuncture yet but that is on my list.

My Sjogren's is tolerable- I stay within my "energy envelope". Hopefully she will get there too. 
Thanks- this is a great forum. I'm just glad I went through my misadventure prior to my daughter getting sick. I feel like at least I somewhat know the drill although my symptoms were never as full-on as hers are.
All the best-
Rachel F.

[angeldancer]

Please let your daughter know that finding the right combination of meds will get her back on track.  Let her know that you are determined to find the right doctor for her.  You may need to travel outside of your area to find the doctors.  It has to be someone hear that knows the area where you live.  Most of us have gone through many doctors to find the right one that will listen and be willing to go the extra distance to find out what you need.  Let your daughter know there is hope and as long as she has breath she will be able to find the answer.

We are all sick of doctors and want some since of normalcy but our reality with autoimmune issues, we have to make sure we find what will give us the best quality of life we can have.  My daughter is showing some of the symptoms that I have and although she doesn't want to listen I think once it gets bad enough she will go to the doctor.

I hope I don't have too many typo's because I am tired and waiting for the meds to kick in so I can sleep (insomnia).  Please keep us posted.  Be your daughters cheerleader and remember she is a teen and they get stuck sometimes in their funk but they always come out of it because of loving parents.

Peace and blessings,
Angeldancer

[aussie mum]

I totally understand what you are going through.

My daughter was diagnosed at 17 after about a year of becoming increasingly unwell. We were "lucky" I suppose as she had positive blood results for SJS. Within the next couple of years she also was diagnosed with an underactive thyroid, other AI's and a heart condition. (all listed in my signature).

She was also very "anti Doctor" and I really had to force the issue to try to get answers. I was totally on a mission to fix my baby. She was sick, tired and depressed.

Here is a link to a previous thread about a teenage boy which I commented on a few years ago which gives some general advice.
https://sjogrensworld.org/index.php?topic=20464.msg218499#msg218499

Can I also suggest you hold back on the alternative medicine appointments until you know your daughter's full diagnosis (mainly to avoid her Doctor fatigue).

Just to show there is light at the end of the tunnel.... my daughter is now 24 and had her first child last December. She now totally understands why I pushed so hard to get answers to her health issues.

Wishing you all the best. I hope your daughter gets some answers and treatment soon.
Aussie Mum

[Winnie]

Rachel
My son has migraines and when he gets them, they are severe.  We got lucky and discovered that he reacts to mainly nitrates/nitrites in processed meats.  We also minimize his caffeine intake.  There are triggers like MSG and tyramine that may cause migraines. You can google this and find more.  We now only eat nitrate free bacon and hotdogs that are easy to find.  I also am gluten free and it may take many months to feel better.  Make sure that everything is gluten free, even the spices- only use McCormick.  Research foods through celiac.com.  Is she on plaquenil?  That is the only thing that helped my fatigue along with taking an anti depressant for awhile.  Hope this helps.

[SjoDry]

Rachel,

I am really sorry to learn of all of your daughter's challenges. I can certainly relate to seeing physicians & feeling like you're getting no help.

I don't have a suggestion for you. What I do have, is an invitation. I run a Sjogren's Support Group in Pittsburgh. Sjoggies In Pittsburgh (SIP).
Our next meeting is May 9th. Our speaker is: Dr.Ghaith Noaiseh who is my Rheumatologist & is also starting a Sjogren's Syndrome Clinic here in Pittsburgh.

If you would like the details, please pm me.
SjoDry (Sandy)

[Joe S.]

It sounds like your daughter is fragile at this point in time. I have since added Cistanchi with good results to my list of meds and supplements. Most of these tips work with all AI diseases.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Rachel F]

Thanks, everyone. I needed to hear that. I do need to power on with my daughter to get her to the dr that can help her. There has to be one. She's so dang stubborn!
I have a feeling I will be posting more!
Rachel F.

[quietdynamics]

Hello Rachel F,
Here is a  link to Chronic Illness Resources for Teens: Stories by Teens with Chronic Illnesses
http://geiselmed.dartmouth.edu/koop/resources/chronic_illness/

Teens like anyone do not want/like to be 'different' and pulled away from their normal group, friends.. miss out on life.

When my daughter was at the start of 8th grade she got very sick and could hardly sit up.
Drs. did not provide answers and did not bother to investigate, rather it appeared they took the 'depression' route. I eventually called Child Crisis Intervention to intervene to get my daughter proper medical care. (Ended with a hospitalization for a thyroid storm). Having a Child Advocate made a world of difference, Doctors knowing they where being documented.
It took her about a year to recover from this, and she was transported daily to a class where she could be monitored.
She is still Doctor resistant and will turn 22 this month.

This was before I hit my own brick wall. I learned from her experience.
Even though your daughter is taking classes online.. she is entitled to attend school events, etc.
Or even attend half days with transportation for special needs students?
Not sure if that helps.

The Children's Hospital of Philadelphia (CHOP) treats children with Sjogrens and other disease. (I was informed about this by Dr. Vivino when I mentioned a 5 yr. of girl I knew about Dx'd with SJS)
http://www.chop.edu/

[irish]

I feel so bad when I hear of school age kids having autoimmune diseases. Life is not fair is it!

The first thing I noticed was that so many of her symptoms seem like ones that could be influenced by the thyroid. I totally understand her being sick of doctors because they don't do anything--she is right. Unfortunately that is the way it works. In order to get help we have to keep pressing onward and seeing doctors until information is gleaned that helps the doctors to come to a diagnosis.

Because she is in the teen years her body chemicals are changing and it will take awhile for the doctors to sort things out. You might want to do the doctoring in a more intense manner for a month or two and then take a month or two off. I know that I have had times when I felt like I could not take one more apt so I gave myself permission to avoid appts for a time.

Autoimmune disease can be very scary and when we feel like we are losing control of our body things get really hard to deal with. Have you had her get some counseling to help her learn to cope with her health issues? Maybe give her ideas on things she can do to maintain more independence and find things to do that her body can tolerate. Hopefully things will slowly resolve and get sorted out. Good luck to you both and tell her to hang in there cause things will eventually work out.

She will learn a lot about herself and life going through these challenges. She will grow up faster than her classmates and that is one thing that is good cause it will give her the advantage in life. Good luck. Irish

[Rachel F]

Thank you Irish and Quiet Dynamics. Thanks for the resources and also the insight. I honestly did not think about how this might give her some maturity and how that might benefit her. That's why I love this place.

Typically her energy is very limited. On most days she only leaves her room for a short time in order to get food out of the kitchen. She is able to sit in her bed or at her desk and Skype with friends (and do some online school work) but that is about it. We will keep going on- getting to one dr. at a time. Today she is actually having a good day and I can't tell you what a relief it is. She vacuumed her bedroom! On her good days, I feel 1000% better. It's pretty hard for her to leave the house. She usually can't-- too exhausted to deal with steps, focusing, interacting, etc. 

Thanks all.

[Rachel F]

Hi all-
A quick update. We saw one of my daughter's doctors- although thyroid levels were all within range according to lab results she did a calculation- some kind of ratio of one to another (?) and said her body was not using the thyroid medication so increased Armour. Irish- you were right! A few days after taking the new dose, she is feeling some better. Not really great, but I notice she is not so completely miserable. It is nice to see a small improvement. She continues to feel worse in the AM and better in the evening. This DR. is big on not relying on the lab provided ranges and has a way of trying to use age-based and gender-based norms, as well as calculating ratios, to interpret blood test results. Interesting. Our next visit is a cardiologist to rule out POTS.
Thanks for all of your suggestions and encouragement! Irish, any other ideas?
Thought I would mention- she is very light sensitive (visually) very often. She also from time to time reports pain in her chest when taking a deep breath. She does have mild asthma, so maybe that is just a result of the asthma.
Rachel F.

[isie98]

Hi Rachel,

I'm glad people have been able to give you some input and advice and that your daughter is doing better (even if it's only a little)

I thought I'd add a little insight as I'm 16 right now and have been diagnosed with Sjogren's for 2 years, so I can understand the situation your daughter is in and since you seem to be getting a lot of input about treatment and the likes, I thought I'd add my tidbit regarding school.

I don't know if your daughter wants to get back to school or if she is liking the online school, but I know I personally just missed seeing friends all the time when I was out of school for awhile. Anyway, all schools are different, but most should (hopefully) helpful. Once my guardian and I got a 504 plan (Accommodations the school will allow.) set up it was a little less stressful and at least a little more bearable to handle school.

Obviously it didn't make me feel physically better, but it allowed me to not be anxious about certain things because now the school knew about it.

At my worst I would be gone for weeks at a time, which I would be excused for, and I was/am allowed to turn in homework way later and make up tests later as well, and if the teacher wasn't helping me figure this out for that specific class, I would go to the school counselor for help. I'm allowed to go to the nurse whenever (She knows me by name now) if I have too much joint pain or (as was common when I first was diagnosed) if I was getting too overwhelmed with everything (school work, people asking where I was, etc.) I still tend to miss at least a day of school a week, but I have good grades and am in hard classes and that is all that I can really ask for.

Either way, schools should generally be helpful as long as you get a doctor approval. This cut down on A LOT of stress, which in the end has reduced some symptoms.

My main point is this: Right now both of you need to find a balance with meds until your daughter is feeling better, not 100%, but better. Once she feels ready and if she wants to go back to school the biggest thing she'll need to to is advocate for herself. That is something that I have been told and learned works wonders. She'll know her limits and she will know what she can and can't do (I was able to get excused from the required gym class as my joints can't handle the rigorous activities because I explained the issue to my rheumatologist and we figured it out).

Your daughter has a great mother and I'm sure after you get this stabilized things will get easier for the both of you.

I'm not sure if you really need all this info, because it seems like you'd be all over this, but I've found that having a second opinion/experience helps you remember you aren't alone and that things might not be perfect, but they can and will get better and become pretty standard. With already having experience with yourself, I'm fairly sure you guys will be fine.

Sorry for the long post 

-Isabel (isie)

[Rachel F]

Hi Isie98,
I just wanted to thank you for your kind response It is nice to hear from a such a young, insightful person. I will keep this in mind and re-read as we make progress! Right now Tess is unable to attend at all but we do have a 504 plan. Maybe she can go next year if we can get her on some meds. Still trying to get that figured out.
All the best to you- so much help and maturity from a young person is refreshing!
I"m looking forward to reading more of your posts.
Rachel F.