Next question: How do you bring up and tell your child?

[Phasmid]

How do I explain that he is going to another appointment to see yet ANOTHER doctor? This is really tough, because he thinks he's ok.

 

He did, bless his heart, tell me today that he actually couldn't control getting very angry at the coach during baseball tonight (the usual situation). Should I start by mentioning his anger issue, and telling him that a doctor can help him with that? I am so glad we have an appointment with Dr. K., as he came home with a patch of eyelashes missing today

[Stephanie2]

That's just awful that your son is pulling out his eyelashes! I'm so sorry!

 

Anyway, here is my philosophy. During our first year of marriage, my husband and I realized that I had horrendous PMS and that was the source of many of our monthly arguments. Once I realized that I had this "anger/depression" problem the week before my period, I was better able to see it for what it was - MY problem, not my husband's. Knowing that what I was feeling toward him was due to hormones, I no longer took everything out on him (at least I tried ).

 

Fast forward to my 5yo son's diagnosis a year ago. When he has sudden onset pandas and he feels terrible about everyone around him, I explain that it is pandas that is making him feel so sad and angry at everyone. I think it helps him to know that there is a reason for his feelings and that mommy and daddy are working very hard to make it go away for good.

 

It makes him happy that I am consulting all kinds of doctors and trying all kinds of "medicine" to make him better. He has full trust in me that I am going to get to the bottom of it (no pressure there!). In fact, one night I was on this forum and he woke up and came out and sat by me on the couch. He said, "what are you doing, mommy?" and I told him that I was reading about pandas and he said, "you are a very good mommy"! I just felt for him that it meant so much to him that I was doing that! They are so much smarter than we think!

 

Anyway, my mom thinks it's terrible that I told him he has pandas b/c she thinks that it gives him "license" to act bad, but he absolutely does not make excuses for his behavior. Every once in awhile he will say he did something b/c of pandas, and usually he is right. But I always tell him that there are still boundaries that are not to be crossed even if it is due to pandas. I tell him that he needs to be strong and act right even when it is hard. Do I make accomodations? Definitely, buy I make sure he knows there are certain things that are never ok...

 

I'm not sure if that answers your question. I just feel that it is best to let them in on what is going on so that they don't blame themselves or others for how they feel.

 

Now my 2yo is a different story! I hope that I never have to tell him!!

 

 

How do I explain that he is going to another appointment to see yet ANOTHER doctor? This is really tough, because he thinks he's ok.

 

He did, bless his heart, tell me today that he actually couldn't control getting very angry at the coach during baseball tonight (the usual situation). Should I start by mentioning his anger issue, and telling him that a doctor can help him with that? I am so glad we have an appointment with Dr. K., as he came home with a patch of eyelashes missing today

[Phasmid]

Thanks very much, this was very helpful. As far as the PMS stuff/depression... my husband just knows (I really do think he keeps a calendar) if it's a good night to come home or not!

[LNN]

I agree with Stephanie 100%. If you had something wrong, wouldn't you want to know "it" had a name and that "it" could be treated? My son knew something was very wrong, and it really helped to know what it was. It made him feel like he wasn't crazy and that people where working hard to help him get better.

 

We explained it like being allergic to strep (he was 6 - couldn't get into anything too complex). Knowing the enemy takes away some of the fear and the power "it" has over you. As for it being a license to misbehave, ds tried that excuse once. But I made it clear that while he couldn't help the fact that he had Pandas, he was still responsible for his actions and there were still consequences. I might be more understanding about a rage, but he still lost tv or some other privilege if he didn't take steps to minimize it (it's ok to pummel a pillow or punching bag, never ok to pummel little sister, disease or not).

[Suzan]

How do I explain that he is going to another appointment to see yet ANOTHER doctor? This is really tough, because he thinks he's ok.

 

He did, bless his heart, tell me today that he actually couldn't control getting very angry at the coach during baseball tonight (the usual situation). Should I start by mentioning his anger issue, and telling him that a doctor can help him with that? I am so glad we have an appointment with Dr. K., as he came home with a patch of eyelashes missing today

 

My daughter (8) was so very glad to know something was wrong and what it was. But she was very aware that there was something not right and that we had been searching for a long time. When she found out she said something like "See, I'm not making it up!" She was so relieved.

 

My 7 yr old is more in the clouds and just doesn't get it but I told them both at the same time. She will cry that she wishes she didn't have pandas or have to be gluten free.

 

It was easier for me anyway for them to know so I could talk freely if I needed to. We also used it as a way to start educating them on how to manage those times (like when your son got very angry and out of control).

 

HUGS!

 

Susan

 

PS... Oh yeah, forgot to mention that when Dr. Cunningham's test results came, that's when I told her. "We figured it out!!" It was a happy moment.

Edited May 21, 2010 by Suzan

[matis_mom]

How do I explain that he is going to another appointment to see yet ANOTHER doctor? This is really tough, because he thinks he's ok.

 

He did, bless his heart, tell me today that he actually couldn't control getting very angry at the coach during baseball tonight (the usual situation). Should I start by mentioning his anger issue, and telling him that a doctor can help him with that? I am so glad we have an appointment with Dr. K., as he came home with a patch of eyelashes missing today

I don't know my son knew anything was "wrong" with him, but he would definitely suffer with the OCD/fears/anxiety, it was totally limiting his life. We started noticing but did not know what it was, and we kept going from being sympathetic to being just frustrated with him and demanding he stop (clueless parents here!). So, when we first heard that this could all be a "physical" issue (as opposed to "mental"), we were excited to check it out. And when we came back from the doctor's with instructions to look out PANDAS, well, you can imagine! He was so glad to hear it was not HIM, it was something making him sick and not the real him. It helped us so much to separate things.

I think maybe if you get one of those OCD books for kids, they really explain things well. There is a bully in there making him do things he does not want to do. He can't get the bully out (well, maybe after PANDAS goes away?), but he can stand up to it. That was a turning point for our son. Sure, the medical treatment helped. But understanding OCD was very important. Even now, when he has a flare, he understands it's just because he has been exposed. We work together at not letting the old OCD habits take hold again. I hope I am making this clear... I think your son knows there is something different about him, and he will find great relief in knowing what it is and how he can get better.

 

Isabel

[T_Mom]

Our d is 12 -- She remembers everything about what she went through two years ago. (very severe)

 

We started talking about PANDAS with her as soon as we thought that was what it was. I think it helped her to know that (1.) It was not going to be permanent, and (2.) that other kids had it!

 

She read Saving Sammy this past year and had great compassion for what he went through--her experience was similarly severe. She is now 110% back--straight As again, decent handwriting, adv. math, and a very normal 12 year old. (Full strength long term abx and 2 steroid bursts + TIME)

 

There is something to be said for taking responsibility for your health--

Very few times has she asked why she has to take her "pills" and she understands why--She also understands it is illness/and/or strep triggered so she knows to be aware if kids are ill around her.

[airial95]

We haven't come right out and told our son much - since he's so young, only 2 1/2. But he's already been able to tell us when he feels "better" or "happy" and when he feels "dark" or "yucky". (His words) We got a clue that he understood something was wrong with him when he was having a particularly rough day and during a violent rage he just collapsed into tears repeating "I want to feel better" That's when we decided to tell him that the medicine he takes every day is doing just that, helping him to get better and feel "happy". Since then, he's never once given us a problem about taking his medicine (we had some rough going getting him to take it at times). And if he's getting ready for bed, he'll even remind us that he hasn't taken it. When we lowered his dose and went to 1x a day, for about 2 weeks we had to deal with him crying in the morning because he wasn't going to get his medicine at that time - only at night!

 

Our bigger challenge was with his sister - who doesn't have PANDAS. She's only 4, and has struggled with why he gets treated differnetly. Even though we try to be firm on behavior and punishments, there are certain OCD things that he does (opening doors for instance - he won't go through if someone else touches it) She doesn't understand why there are things that he ALWAYS gets to do and she never gets a turn. It's kinda funny in a way b/c one of his things is making sure that all the dog poop in the yard is cleaned up. Every day as soon we get home, he can't focus on anything else until my husband takes him out to do it. The other day my daughter was hysterical because she never gets a turn to clean up the dog poop! My hubby and I had a good laugh over how we'll remind them both of their passion for the poop when they're teenagers and complaining about having to do it!

[dcmom]

That is a great story about the poop. We have stuff like that happen, here, as well. It is tough balancing two kids, mine both have pandas, but have exacerbated at different times (thankfully). In a way, it gives them a little more understanding of each other- sometimes.

 

I feel very strongly about being as honest with kids as possible and appropriate. (of course age is a factor). My kids were 5 and 8 when they started with pandas. As soon as we had diagnosis, we explained it to both of them. They both understood it. For them it is as simple as, when kids with pandas get strep throat, some of their antibodies (we call them fighters- fight infection) get confused and bother their brain instead of the strep. This is what causes ocd, separation anxiety, etc. They were both relieved when they received diagnosis (different times)- because they knew something was going on. It was a relief to them that it wasn't their fault they were suddenly afraid to do things a toddler could do.

 

Now they are in recovery, and we talk about it a lot. I tell them about other kids on the forum and some symptoms they have had, especially when it is what they suffered. They really seem to like hearing that. They know about the pepsi grant contest, and want to win. We talk pretty openly about ocd, also.

 

The only thing I haven't been really up front about, is that there is a chance they could have another episode. They know if they get strep it is a big problem, or if they are around it - it will bother them (I use the allergy thing)- but don't know other illnesses could be a trigger. I don't want to put that worry on them- we'll just have to see how it goes. I don't talk about it coming back.....

 

They are annoyed that they had to get pandas, take medicine and be in the hospital. But, my dd,9, has a diabetic friend, who takes insulin, and is also allergic to a whole list of items....so she says she would rather have pandas than that. So, for kids, they are able to keep it in perspective.....

[smartyjones]

i do certainly agree with what others are saying about being honest. . . i also think there is the chance to be too honest and get into answering things they are not really asking or thinking about.

 

like this story... a boy ran into his house and asked him mom where he came from. the mom, knowing this was coming soon, sits down and goes into much explanation b/c he's of the right age to really know the facts. often during the talk, the kid has funny looks on his face. at the end, she asks if he has any questions. he says, "that's great, mom. but the new family down the street came from philadelphia, where did i come from?"

 

my son, 5, is really not so interested. he is gluten-free, dairy-free and takes medicine and goes to many drs, so obviously he knows his body is acting a bit funny and we're working to get him healthier. other than that, he's really not interested. his main issue seems to be inappropriate reactions or behaviors that he doesn't see as troublesome. so i realize that makes a difference in discussing it also.

 

my older son is 8 so he does have more interest and can handle more info but i do try to be aware of when he's tuning out and has gotten what he needs.

 

i think like most of life's 'big talks' with kids, it's easier to have small often talks rather than 'the one big discussion'.

[Megs_Mom]

What a great thread - I loved reading this! I like all of the posts above and especially agree that with younger kids, smaller bites are best. But overall, know what was going on with her mind helped our daughter so much. However, we did not know she had PANDAS for a long time, so what she really "knows" is OCD. She was very glad to understand it and to meet other kids with it. We have given her some tidbits about PANDAS in the last few months, but have not really gotten into it. Our daughter's primary OCD when it hits, is contamination fears. We are still not sure that we want to stress her too much about germs - I think she could handle it right now, but we are still a little gunshy about giving her information that might not be processed well (at all) in an exacerbation. She doesn't care much at the moment, so we are just taking it day by day. If we needed to do IVIG, then obviously, I'd need to tell her a lot more! But with just abx, she has accepted our information about why she takes it.

[Phasmid]

Oh, the dog poop story wins the prize here! I don't know how it'll go over, but I will start easing into it soon. The last time we had to go for blood draw (for recheck of Mycoplasma, etc.) my son simply said "No, I'm not going. Sorry, but I'm not going anymore, for anymore blood draws, or anything else." It cost me an iPod Touch. Wonder what the trip to Chicago is going to cost

[tantrums]

I did wait until we had the diagnosis from two doctors, but then I just casually brought it up as he was taking his ABX and asked why. You take this because you have PANDAS, PANDAS is why you feel bad sometimes and we hope this will help. Seemed okay enough for him so we have left it at that for now.