Hi All:

After battling the stomach flu for 2 months in dec & Jan. My daughters doctor decided to do a blood test for ANA.. This diagnoses Lupus, Sjogren's Syndrome among other Autoimmune Diseases.
She did test positive for ANA twice. So off to the Rheumotologist we went. Within 15 minutes he had positively diagnosed Sjogren's Syndrome (not being able to produce saliva, tears etc) within the body. Which in turn produces massive stomache aches, migraines, fatigue and brings on anxiety.
This test should have been done 3 years ago when all of her stomach problems began and definately should have been done when her anxiety began interferring with her schooling.
This goes undiagnosed more often than should.
Anxiety becomes elevated when they do not feel anyone understands that they feel awful everyday.
So, further blood tests given, and he believes she has Advanced Stages of Lyme Disease, which also should have been tested for years ago.
Lyme Disease is spread by a bite from an infected tick. Ticks are bugs you pick up in the woods, or grass. I believe this is only in the United States. But I'm not positive.
Today we head on back to her new Gastroenterologist to see what sort of damage has been done to her stomache.
The no-tear situation definately hits my nerve considering courts thought she was being Obstinate..(Obstinate Defiance Disorder)because she wouldnt cry when being questioned in court.
Hope this sheds some sort of light for everyone...
Keep you posted....
Bonnie

What a mixture of emotions you must be feeling; relief that at last something has been diagnosed, but concern that your poor daughter has a whole load of diseases to contend with.

You must be wondering whether you should go back to all the agencies and tell them that there was something wrong with your daughter, and their lack of concern shows their lack of understanding - or just to get on with life taking it as it comes.

Lyme Disease is also around here in the UK. Ticks are more widespread now than they were as more methods of keeping sheep clear of them have been banned for environmental reasons. Believe it or not, I had a conversation with The Queen about this a few years back. She was worried about her sheep at Balmoral! but that is enough name dropping for today.

Thank you for bringing us up to date. And good luck to you both as you seek remedies.

Oh dear Bonnie, what a lot to contend with! At least you have some answers now - which on the one hand must be a relief- but on the other hand you now have to work through with these medical conditions.
Your poor daughter must have been feeling so overwhelmed by her physical symptoms. I have as a result, decided to push my doctor a bit further regarding my son as he so often complains he feels ill and has stomach pains but with the anxiety - not sure which comes first.
Take care and hope your daughter finds some support now. Hope you have some support too.
best wishes,
Linda

Stomach was clear of any severe problems and finally healing from the zoloft her psycologist gave her for anxiety. So that part worked beautifully. Shes steady. As far as the other medical situations, one day at a time. Every day is different. Being able to control the anxiety has been a tremendous relief.

I thank everyone here for always making me feel thats its ok to question and doubt every diagnosis and collect opinions. Just like the Bra commercial ...Support can be beautiful....

Hi Bonnie,

Remind me of what helped control your daughter's anxiety?
Linda

Mostly the Zoloft 50 mg..however they started her out small and worked her way up to this dose because of her raw stomach.

They also modified her day at school, which was a big plus. Started her out at 2 hours a day and worked up to 5. Kids with anxiety truly cannot handle more than 5 hours a day according to all her doctors. After the 5 the anxiety will set in..but we havnt seen it in months.

We also reassure her at every step shes doing well. Confidence boosting is a huge part too.

Thanks Bonnie. Will be looking into medication soon and just like to know what is out that and what is working. When your daughter did the two hours at school - were they the first two hours of the day or just any two hours?
Just wondering re any plans for getting my son back re what works for others.
He is sick at the moment (he seems to pick up every virus flying by.
Linda

Hi Linda:

We picked the two hours and chose the first two of the morning. It was her hardest time, so we started with the hardest so she could learn how to push through the hard times.

The whole virus thing....well...I am sorry for your sons sickness. Thats exactly what my daughter went through...that is why they did the bloodtest for ANA....it's the standard autoimmune virus bloodtest that doctors use to test for other things. This is the test they did a few months ago that technically should have been done years ago.

I will say...without the psychiatrists help with giving the Zoloft, I don't know where we would be. It gave my daughter the strength and confidence that she needed to speak up for herself in all her meetings and at doctors appointments. It took a few months to get her on her proper dose (due to her stomach being so raw from months of illness), however, now that she is at her peak point, the improvement is unbelievable. She went to her "Team Meeting" yesterday and told everyone there that she would very much like to attend summer school so she wouldnt fall any further behind. I was stunned. I almost cried in fact. In the past, she would have been twitchy, and anxious and eager to leave. My nerves would have been on edge for these meetings at first and now...they are pleasant. We get to discuss how far she has come and where she can go. This was also the case in court last month. They have seen Bailey take huge leaps and bounds.
The program they use at her school, is called Success.. I guess it is successful. They brought the school, court and doctors all in on these "Team Meetings" so everyone was on the same page and set up a schedule of sorts. They asked for her input which at first was nothing (refusal to answer any questions) to now her basically making her way through...(with her input) It was not easy. I remember the mornings when I had to carry her (physically) out to the van to take her to school, and once we were at school, the dread of prying her out. I did listen to the I hate you for doing this to me, but I stood strong (in front of her) cried when she was out of sight, and within one month did not have to do that anymore.
I sure hope that if any of what I say helps just one single parent, just one, that they will tell me.

Thanks Bonnie, that is so good to hear how your daughter is progessing. It has inspired me to push on and find if there is a medication that helps or a program I can work on that can help us move out of the rut we are in.
Regarding physical side - I find the doctors just brush everything aside and look at me as if I am just a pushy parent when I ask them to test and so apart from an iron test (which he was low) then they just say the anxiety probably results in low immunity. I will try and stand firm as I know until we work out any underlying illness etc then we could be going round in circles not knowing what might in fact be the cause. I know anxiety can weaken the body but I also recall my son always complaining of stomach pains (at any time of the day) from when he was about 3.
I'll keep you posted re any further developments on that front.
Meanwhile - good luck to your daughter and well done to you for standing strong. When I stand strong I know it helps my son push through but sometimes it just gets too much.
Take care,
Linda