[tsnreb525]

#1059636

Approx. 6 years ago my daughter was diagnosed with PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Her symptoms (starting around age 7) included violent outbursts with repetitive OCD like rants. Ultimately her tonsils were removed since it was thought that the strep virus was pooling there. The episodes tailed off within 6 months and basically disappeared until just recently there was one eerily similar occurrence. About two months ago, an endocrinologist suggested we test for Graves because she has many of the symptoms like increased sweating, irritability, heat intolerance, increased appetite, hair loss, attitude changes, mood swings etc. We’ve just started on the road to testing this week so we have nothing conclusive at this time. Has anyone had experience with these two disorders being linked in a young person officially diagnosed with Graves?

Just fishing here I realize because very little is said about PANDAS and was barely heard of when we were going through the diagnostic process.

[vanillasky]

#1176325

Hi and welcome to our support group.

Her symptoms sound like Graves’.

Is he testing for TSI (Graves’ Anti-bodies?)

That antibody is definitive of Graves’ Disease. That’s how mine was found.

TSH could be surpressed, and FT4 and FT3 should be checked for abnormalities. lots of endos dont’ always test for TPO and TSI so insist on it if he hasn’t. Good luck to you!

[snelsen]

#1176326

Gosh! Sounds like it has been a tough road for your daughter and you! I am so sorry!
My first thought is that she has, and has had, many of the classic symptoms of hyperthyroidism, i.e., Graves. Sure does prompt me to wonder if, anytime in the past six years, if the docs have thought of Graves’, and ordered a thyroid panel lab. Incidentally, for your own knowledge, after the blood draw, most labs have the result in just a few hours, not days or weeks.
So I suggest you move forward now and get those labs. I am sure you have had multiple exposures with the health care system, and doctors, so I am hoping you have the existing relationships that will help you get this done soon. IF you have access to electronic medical records, you can look up the labs yourself, so you know when they are done and what they are. I say this, cause there is no reason at all for you to have to wait and wait and wait for these results. I am not sure from your comment if you have already done this, or not. The road of testing is very fast, with results very quickly.

I have read the PANDA studies, and articles on the NIH website, and as you inferred, there is not much that is known, and a lot of questions exist about its’ diagnosis and existence. And treatment. “further research is needed,” as they say. And with rare diseases, it is hard to conduct studies, becasue of the few number of people who have the rare disease.

Regarding your question about OCD behavior, and outbursts, this can certainly represent a very hyperactive person. You just feel totally crazy, out of control. If you read some of the posts in this forum, you will see this is a consistent theme. We hate to feel like that, and we are not ourselves. Plus, all the other symptoms you listed in your post. Add increased heart rate, and tremor when you hold your arm straight out in front of you.

I think it is time here for me to say that I am “just” another Graves’ person.
I have, however, worked in health care for the past five decades, so some things are more comfortable and familiar to me, having worked in this field all my life.

So, part of me is hoping that she has Graves’, and if she does, I feel sad about all the years that this has not been thought of in a differential diagnosis. But I am making assumptions that I really do not know, about how the path has been for you and your daughter.
Welcome to this site. IT is wonderful.
Shirley

[snelsen]

#1176327

Agree. Antibodies should also be ordered. As well as TSH, T3 and T4. Your endocrinologist should know this. If you find that the endocrinologist does not seem very familiar with Graves’, I suggest you consider finding the “right” endo, if, indeed, she does have Graves’.
Shirley

[tsnreb525]

#1176328

vanillasky wrote:

Hi and welcome to our support group.

Her symptoms sound like Graves’.

Is he testing for TSI (Graves’ Anti-bodies?)

That antibody is definitive of Graves’ Disease. That’s how mine was found.

TSH could be surpressed, and FT4 and FT3 should be checked for abnormalities. lots of endos dont’ always test for TPO and TSI so insist on it if he hasn’t. Good luck to you!

Wow I am humbled and grateful for the sincerity of these posts already. We are trult at the very beginning of the process and I am not sure of the technical side of what tests we’re doing. So far 2 swabs have been presented to the lab and we have a Dr’s visit tomorrow. Thanks for starting me on a thought process.

Bob

[tsnreb525]

#1176329

snelsen wrote:

Gosh! Sounds like it has been a tough road for your daughter and you! I am so sorry!
My first thought is that she has, and has had, many of the classic symptoms of hyperthyroidism, i.e., Graves. Sure does prompt me to wonder if, anytime in the past six years, if the docs have thought of Graves’, and ordered a thyroid panel lab. Incidentally, for your own knowledge, after the blood draw, most labs have the result in just a few hours, not days or weeks.
So I suggest you move forward now and get those labs. I am sure you have had multiple exposures with the health care system, and doctors, so I am hoping you have the existing relationships that will help you get this done soon. IF you have access to electronic medical records, you can look up the labs yourself, so you know when they are done and what they are. I say this, cause there is no reason at all for you to have to wait and wait and wait for these results. I am not sure from your comment if you have already done this, or not. The road of testing is very fast, with results very quickly.

I have read the PANDA studies, and articles on the NIH website, and as you inferred, there is not much that is known, and a lot of questions exist about its’ diagnosis and existence. And treatment. “further research is needed,” as they say. And with rare diseases, it is hard to conduct studies, becasue of the few number of people who have the rare disease.

Regarding your question about OCD behavior, and outbursts, this can certainly represent a very hyperactive person. You just feel totally crazy, out of control. If you read some of the posts in this forum, you will see this is a consistent theme. We hate to feel like that, and we are not ourselves. Plus, all the other symptoms you listed in your post. Add increased heart rate, and tremor when you hold your arm straight out in front of you.

I think it is time here for me to say that I am “just” another Graves’ person.
I have, however, worked in health care for the past five decades, so some things are more comfortable and familiar to me, having worked in this field all my life.

So, part of me is hoping that she has Graves’, and if she does, I feel sad about all the years that this has not been thought of in a differential diagnosis. But I am making assumptions that I really do not know, about how the path has been for you and your daughter.
Welcome to this site. IT is wonderful.
Shirley

Yes these years have been tough for the family yet I know so many folks with much worse life issues to face I have never really asked for help coping or trying to unload some of dumb questions I have had gnawing at me. The worst part of the outbursts coming from a teenager is we’re (my wife and I) always first to respond negatively as though we’re dealing with typical teen age ATTITUDES rather than taking a step back to try and empathize first but it always ends up a combative situation with my duaghter doing most of the escalation. Thanks to you also for starting me on a thought process about really looking at the progression of testing and doctor interviews. I appreciate your kind thoughts.

Bob

[Kimberly]

#1176330

Hello and welcome! I’m not familiar with Graves’ and PANDAS being connected, but as Shirley mentioned, we are fellow patients here.

There is a group over on Facebook for parents of Graves’ patients, so you might be interested in posting the question over there:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.facebook.com/groups/265484340175004/

It not an official page of the GDATF, but was started by a couple of our members for parents to exchange information and give support. It’s a closed group, but if you ask to join and explain your situation, the moderators will get you approved.

Hopefully, this latest round of testing will give you some further direction. In the meantime, if you are interested in learning more about Graves’, we have a couple of presentations on children and Graves’ on our YouTube site:

http://www.youtube.com/user/gravesandthyroid

Wishing you and your daughter all the best!

[vanillasky]

#1176331

Bob, I’m glad I got your thought process going. I had been to many endocrinologists and they NEVER cared to test for antibodies so I remained undiagnosed for years and years. Hashimotos was my only diagnosis which was not correct.

Antibody testing is very expensive and I think doctors are not wanting to test for these because insurance companies dictate and just don’t want to pay. JMO. But once they are tested, it’s a sure sign if the count is high.

TSH could be in normal range and she could still be having symptoms. Everyone has their “set point” or “optimum level” that their body feels comfortable with.

You should also be familiar with “Graves’ Rage” if you are not. It does very unpleasant things to our minds (I have had many rants and destructive episodes) and act like a spoiled child. I never knew what was going on with me. Right away I got called “mental” by husband, but after coming to this support group, I realize it is normal for us to carry on sometimes. LOL!!

[tsnreb525]

#1176332

Kimberly,

Thank you for the facebook suggestion. I wonder If I can visit that page and not have my daughter know from facebook herself? I dont want to upset her since I am keeping my research to myself for the time being until we are sure of what we’re dealing with.

I will check out the youtube link later on today.

Take Care

Bob

[tsnreb525]

#1176333

vanillasky,
Yes, we are all too familiar with the rage episodes. When she was 8 she punched straight through a sheet rock wall! Eyes as wide and black as a sharks eyes. 2 hours later……….sobbing and physically spent.

I am sorry you have to go through your episodes. It is heart breaking to watch a loved one suffer this way. I hope your husband understands now. Can you tell when they are coming on? Is there any treatment for you to control them?

Bob

[vanillasky]

#1176334

Hi Bob, yes, the doctor has me on Klonopin (Clonazapam) to control my outbursts. I also get “triggered” from time to time. It happens mostly when my TSH is undetectable. It is Hell to go through. One just feels so horrible, they want to rant and rave and destroy everything in their path. At least that’s how I feel. I’m sure some patients don’t have this “Graves’ Rage,” and I certainly wish I did not!

Karen

[tsnreb525]

#1176335

Sounds like my kid……………we used to know her triggers but since there has been a few years free of the rage episodes until this latest couple we may have to re-learn them if they’re indeed coming back.

Take care. Your insight has been helpful, thank you.

TTYL

Bob

[Kimberly]

#1176336

Hi Bob – Yes, Facebook gets tricky when the whole family is on board! That particular group is “closed” (private), so I *think* that any activity that you engage in there is hidden from your timeline.

Take care!

[tsnreb525]

#1176337

I will give it a try.
Thanks Kimberly.

Bob

[jeanierd]

#1176338

My daughter was diagnosed with Graves when she was 10. She had all sorts of allergies and asthma starting in first grade. She was treated with allergy meds, and steroids. The doctors could not pinpoint her issues as they never really met all the criteria for asthma or some allergies, but treated them anyway. In 5th grade we noticed ADD like symptoms, weight loss and a huge growth spurt. She had the radioacitve iodine treatment 1 month before her 11th birthday. From May to August of that year she went from 5’2 to 5’7. From Aug to Nov after the treatment she went from 82 pounds to 129! All in the midst of entering puberty. Middle and high school were HELL! Nobody understood and I begged and begged for answers only to be told it was puberty. She was finally diagnosed with ADD one month before her high school graduation! Her last marking period showed 95 and above in all subjects! Take away message…..get her into counseling to let her know how to deal with the special emotions related to Graves disease. Educate your school on Grave and get her help! At age 19 she finished her first semester of college, is doing well but the anxiety and depression are issues. She see a therapist weekly and started accupuncture. I think all the meds/steroids she was on early in her life triggered her autoimmune system to react. Good luck !

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