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how to talk to your child about PANDAS/PANS?


pr40
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I've seen good advice on how to talk to your child's teachers about PANDAS. But, how do you talk to your child who has PANDAS about his/her condition?

thanks in advance for your thoughts.

 

I would think that would vary greatly according to age and degree of functionality. How old is your PANDAS kid?

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I have told DD11 that her symptoms are caused by a bacterial (like sore throat, stomach flu) or viral (like chicken pox, cold virus) infection - all things that she has observed in other children. I explained that her body's response to these infections is somewhat different than the responses of others and this causes her symptoms to flare. I reassure her that, like she and her friends have recovered from lots of colds and stomach flues, she will recover from these infections as well, although it may take awhile and some help from the doctor. DD11 is scared of the word "disease" - as in Lyme Disease - so I call it an infection - she knows that infections are treatable, and that that is what we are doing, treating her infection. She does not have problems with contamination OCD.

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Sigh. When I explained this to my DS when he was ten many years ago (when far less was known) along the lines rowingmom suggested I added that doctors thought there was an excellent chance he would outgrow it by the time he was 17 or 18. His response: "That means I will never have enoyed being a kid."

 

Avoid my mistake--also it proved not to be true.

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Agree with Nancy - it depends on the age and their abilities. I've described it as an allergy to strep. I explained what was happening and assured him it wouldn't be forever and we'd get him well. Problem was - he had more than Pandas. We went on to find lyme, pyroluria and just this morning - a vision problem called convergence insufficiency that's contributing to reading problems. So it's been an onion for us. But my son feels like he's stuck in the song "The bear went over the mountain." Mom keeps finding more mountains he has to climb.

So for your own sanity, I'd avoid promises and certainties and keep things simple - answer their questions, try to refrain from giving more info than they want/need.

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We're still pretty new at this, but we have kept it simple with my DD7 and said that she had an infection and it gets in her head and can make her really act and feel not herself. We tell her that we're working with great doctors who work with lots of kids who have this and that they are going to help us get better (she feels the difference -- about a week after going on full strength abx, her words were: "I feel less fighty") and that we're all going to make sure we keep fighting the PANDAS together until we figure it out. Dr. L was really wonderful with her and really reinforced this message: you are not alone and you will get better.

 

She has a lot of friends with allergies and/or asthma so we have used that to try to help her feel better about the obstacles presented by PANDAS (e.g., J has asthma and that can make it really hard for him to breathe so he has to take medicine sometimes and sometimes he has to work harder at breathing than you do, but he does... you have PANDAS so sometimes it's harder to find clothes that work for you or to manage your feeling, but you have to try so that you can continue to do all the fun things you like so much). This seems to balance the expectations by making sure she knows that while medicine will help, she has work to do too and it may still be tough sometimes.

 

As others above have said, we emphasize that there are lots of kids who have this and get better. We do try not to make promises we can't keep, but endeavor to be optimistic while balancing empahty and realistic expectations!

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thanks. our kids are DD8 who was diagnosed with Pandas and ds4 who may have pandas.

i am especially interested in how to talk about PANDAS in respect to anger, irritability, certain kind of slowness in getting dressed, regression, and so on.

(By the way, it seems striking how our PANDAS kids, though their PANDAS is manifesting differently, do seem to have very similar behavioral issues.)

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i am especially interested in how to talk about PANDAS in respect to anger, irritability, certain kind of slowness in getting dressed, regression, and so on.

DD11 now understands that these are some of the symptoms that she gets from her infection (whatever it may be - lyme/bart/strep/myco). Although she understands this, if she is in exacerbation there is nothing she can do to stop herself from being angry and irritable, unable to do math, from ticcing, from her decline in writing skills, from lying on her back flailing arms and legs in the air talking baby-talk to the mini-schnauzer.

 

I will mention that the symptoms are showing up and she will say "I know, I know", but can do nothing to help herself. The harder she tries, the more frustrated she seems to get. While she is in a flare I spend a lot of time asking questions: teeth brushed? Dressed? Backpack ready? Got socks? Shoes on? What homework do you have? I pretty much have to do her executive functioning for her. If I don't she will spend all of her time dressing and undressing barbies.

 

When she is out of a flare she will say that she knew her symptoms were a problem, but that she was unable change her response/behaviour (other than to take herself out of the situation). This is an OK remedy for anger/frustration but doesn't work for handwriting and math. She just has to settle down and take her time. It often helps if I am sitting near her while she does homework at these times. Not to make comments, but just to be there.

 

When she is out of a flare she is quite capable of doing all of the above mentioned executive functioning herself, with a little more besides - offering to help make dinner, bring the clothes in from the line, putting clothes in the laundry, sitting down and completing homework, all without being asked. She is happy and witty and a very good writer of english compositions.

Edited by rowingmom
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My son was 2 at dx, so for him, it's just something he's always lived with. We explained it very matter of factly - when some people get sick they get a tummy ache, or a stuffy nose, his brain gets sick, and it makes him act in ways he doesn't want to. We kept the focus on that's why we see the doctors so much, and that's just the way God made him - it's nothing bad or to be ashamed of - just like some kids wear glasses, or have allergies and can't eat certain things, or have diabetes and need to take shots (like his little friend from school), God made us all different and he gave us the Doctors to help us get better. That explination worked for his 3 1/2 year old sister too who decided she didn't much like having a little brother any more (subsequently she was dx at 5).

 

They continue to ask more detailed questions, how it works, what each medicine does, and we explain them as age appropriately as we can. We made up a story about our immune system being the "army" to protect us, and our brain, the BBB being the fort to protect the brain, and the army gets confused beacuse the bad guys (strep) seometimes wear the same army uniforms as the fort guards, so the army attacks them by mistake.

 

It's extremely simplistic (and probably not 100% medically accurate!) but it helped them both visualize and understand. My husband's cousin is a published children's book illustrator, and he's helping us put it together into a publishable book - when I can ever get a chance to work on it some more!!!

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i know you are asking for serious help, i just love this story. . .

 

a kid runs into the house and asks, "mom, where did i come from?" the mom, having known and worried she was soon going to have to pony up with the real facts, launches into a detailed discussion of facts,figures and details of it all. at the end, she says, "is there anything you like to ask or say?" and the kid says, "that's all great, mom, but the new kids down the street are from Pittsburgh, where did i come from?"

 

we, like arial, although my kids are older than hers, 8 and 10, keep things pretty simple and let them guide.. we keep the main focus on the people who are 'helping' us. . . Mr. L helps us with school b/c school was it was difficult and we were having trouble with people who didn't understand why it was hard. Dr. S helps us b/c our bodies had infections that we needed medicine to help get healthy. my kids are really not so interested in the details. your's may be and then, of course, you'd want different advice. . . but i'd first be sure he's not just asking if he's from Pittsburgh.:lol:

 

 

 

as far as the symptoms, are you familair with the What to Do books? "what to do when your brain gets stuck"'; there are others for anxiety and anger also -- i can't remember the names right now. Our psych once showed ds, at time 7, a little blue brain and talked to him about his amygdala -- he loved it. we found a silly picture of "amygdala" guy and that we need to work to keep amygdala guy from freaking out. i'm not so good at explaining, but it's a really good thing for him -- he works to keep amygdala guy calm rather than him being "bad" or using bad behavior.

 

 

i'm a huge fan of Dr. Ross Green and The Explosive Child book and the technique of repeating what the child said with a "really?" or "oh yeah" or "oh. why?" to help garner info as to what they are asking or trying to communicate.

Edited by smartyjones
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My son is 10, and although we are still awaiting an official diagnosis, he was asking all about PANDAS a few days ago after hearing me making calls etc. I began to explain it to him in my own terms, when suddenly he changed the game a little and said "So it's like a war - Alexander is the territory, Germany (Strep) comes in to attack, and Australia (Antibodies) begin to fight back, but somewhere along the lines, some of the Aussies get a little mixed up and start attacking some of the home territory?" And it all came together from there! I think it really depends on the child, but being able to related it to something they understand, most definitely helps! We continued on our Military version of PANDAS until such time as he was confident he understood everything he needed to about PANDAS!

 

Good luck with it!

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The What to Do books Smarty mentions are "What to Do When Your Brain gets Stuck" and "What to Do When You Worry too Much" by Dawn Heubner. Great books! They don't discuss disease but like other have said, they set up an imaginary opponent you need to fight and it discusses strategies that a child can relate to. They also give you an introduction to ERP (exposure/ritual prevention) therapy. If you're not familiar with it, definitely pursue this. ERP, IMHO, is an important piece of treatment. When kids are in the height of a flare, it's only mildly helpful. But the tools are valuable for all of life's challenges and will serve you well.

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My son was 8 and I explained to him that when we are sick your body makes soldiers to fight infection. Your soldiers have just gotten confused and are trying to attack your brain and that is why it is making you do these things. He looked at me with such relief and said, "wow, that is great. I just thought I was a bad kid.". I then explained that all the doctor's visits, medications, etc were just to fix the soldiers and to help his body not make so many. Even his friends who take ADHD Meds when they come over say "oh yeah, His meds are for his soldiers". Pretty basic, but it worked.

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I would say to let them figure it out on their own. Let them come to you and ask questions when they are ready. Why bring up a conversation topic that is obviously painful, if the main person dealing with the pain doesn't come forward. Simply because you feel as a parents that the child is at a point in their life where they need to understand does not mean they are at the same place as YOU. As far as the discussion actually goes, you the parent should be in the back seat. i would let your child ask the questions and then answer them in a way which you think will build a mature and responsible adult. The child isn't going to steer the conversation in the wrong way, you the adult will so really think about the possible questions that are facing your child. Here are some of the questions that I faced having PANDAS.

 

My questions as a sick child.

 

Can I live a normal life with this?

 

How do I tell people about this?

 

What do I do when I get sick?

 

What treatments do I need to get better and where do I go?

 

How you answer these questions is up to you, but I turned out well with PANDAS and the one thing that my parents always told me was to stick with conventional medicine. If your child is in a crisis, in the end, they will end up in a hospital and you need to know what conventional medicine to ask for otherwise really- getting permanently drugged up in a psych ward could happen. Just be careful.

Edited by LaurenK
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