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BeeRae22

increasingly concerned about non-pans son

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It's been quite awhile since I've even been on this forum, which is a good thing :) after an incredibly horrible 2 year struggle with this disorder my dd(9) is finally back to baseline now with only a few bumps in the road here and there.

 

This time, I'm here re: my ds(7). I hope that I am wasting my time by posting this. I hope that I am wrong about what I see happening with him. To be brutally honest, I have always been very skeptical about those who say that they have multiple children with pans/pandas. Maybe it's unthinkable for me to consider my son having it too. Maybe it's denial, I don't know. But I just never wanted to accept that this happens to more than 1 child in a family. Even after all we've been through, this whole think just seems completely crazy sometimes.....

 

Anyway, my son had been exhibiting some..... errrrr.... different behaviors. He isn't sick, he doesn't have a cold, or strep or anything. (When my daughter's onset happened, she had been sick with a cold.) Some background on my son- he's exhibited minor anxiety and a few "quirky" personality traits, but overall hasn't had any problems. Last year though, he started this thing at school during lunchtime. He would often sit by himself. When I asked him if he always sat by himself, he would reply "if I can". Now, he didn't seem upset by anything really, he just mentioned that some of the kids chewed with their mouths open and he didn't like it. He just seemed to prefer eating alone, which, well- isn't exactly "normal" but he was fine otherwise and it just seemed like a quirky kid thing.

 

Fast forward to this school year, and at the beginning of the year he went to his teacher and told her very matter-of-factly that he couldn't eat his lunch, because people chew with their mouths open and it was going to make him sick. Now, this started mid-year last year, and again he was fine otherwise. So I didn't think much of it when his teacher mentioned it.

 

But now, suddenly this whole thing seems to be escalating. The other day he was all worked up because he was going on a field trip the next day and he was concerned about how he was going to eat his lunch. He talked about it all night, asking a million questions and was very worried. So I emailed his teacher, and let her know. She told me at the end of the day that she'd asked him if he'd like to sit with just her at lunch, which he did. But he didn't eat-- at all. He complained of a stomach ache as soon as lunch time came (I'm assuming anxiety) and drank a juice and that's it. When they got back to class, they could have snack and he didn't eat that either...

 

The next day, he was deleting videos off his ipod to make room for a new game. You are not even going to believe this, I can't even believe it myself. While he was going through the videos, he came across a video of this kid that had been playing around with the ipod, literally almost a year ago, and had made of video of himself CHEWING WITH HIS MOUTH OPEN. How in the world is this even possible????? This was around bedtime. My son goes to sleep laying next to me. He was literally crying and whimpering, saying that he couldn't stop thinking about the video, and was afraid he was going to throw up, and that it made him feel sick.... He's brought it up here and there many times in the past few days since he saw it. There have also been many other little things regarding food and smells that he's been bothered by. My dd was eating a pizza lunchable (which granted, is pretty gross! :) in the car, and he was hiding and whimpering and complaining about the smell, and how he couldn't stand it-- and he meant it. He's also been "coughing" when he has these thoughts about the open mouth chewing and foods he doesn't like, and he will say that thinking about them makes him cough.

 

I want to continue to be in denial that all of these little things may be adding up to something, but I'm terrified. One of my dd's most extreme symptoms was severely restricted eating. She feared choking and swallowing. She was nearly hospitalized for a tube until I basically forced her to drink a protein drink several times a day to keep her out of the hospital. She lost about 10% of her body weight and was a peanut to start with. She would go weeks at a time without putting a single bite of food in her mouth. It was a nightmare. This was in addition to the raging, OCD, ODD, school refusal, depression, skin picking, sensory issues, cognitive issues, short term memory loss, emotional lability, etc. etc. I think I still have PTSD really- and I hope I'm reading too much into my son's "quirks" but I am really nervous about the direction that I see this going in. He was worried about going to his cousin's birthday party yesterday because "people might be chewing with their mouths open".... this isn't good.

 

What am I supposed to do? My husband refuses to acknowledge that something is wrong. He wants to chalk it up to him "just being a kid". I told him what was going on, and he responded "I'm not worried about him, you're making a big deal about nothing". Of course, he did NO research or handling of our daughter's treatment, and only half-accepts the things I've tried to explain to him over the past 2 years.

 

I feel like I am completely out of my mind..... I really don't know what I am going to do or how I am going to handle this if it is something. I pray that it isn't, that I am wrong and my husband is right. I pray that it passes, and just resolves itself. But he is having these worries more and more every day and I don't know how to help him. He's not sick, so there's no way that I can justify having him tested, or bringing to his attention that something might "be wrong", because I think at this point that could just make things worse too.

 

At what point do you decide that something needs to be done? How far is too far? Do I wait until he stops eating? Can this actually be happening? At the same time that I know that I will do everything I can to hold it together to take care of my son, I'm not so sure that I can handle it at all. Somebody please offer a suggestion. I need someone to tell me what to do.

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Oh Beerae!

 

I'm so sorry, but I think you need to follow your gut here. Maybe I'm still dealing with my own PANDAS PTSD, but I don't think your DS's behaviors reflect a "normal" kid (assuming there is any such thing). The whole not-eating-with-other-people thing initially made me think of misophonia, but then graduating to being concerned about throwing up, etc. starts sounding like full-on OCD thoughts and behaviors (DCMom's kids went through that particular brand of OCD).

 

As for not having any recent record of illness, strep, etc., my DS was one of those asymptomatic strep responders (like Sammy Maloney), so he never showed physical signs of strep. But have you been notified of any cases of strep in your DS's class or school? He could be classically asymptomatic but responding, nevertheless, to an infection or exposure.

 

Hang in there! But get some help, I think, as soon as you can. Whatever is behind your DS's increasing anxiety and behaviors, he needs some help sooner, rather than later. Better to rule out underlying/hidden medical causes, no matter what the case.

 

Nancy

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My heart and stomach are flopping around just reading your post. I, too, have one PANS kid and one completely perfect wonderful happy healthy kiddo and the mere thought of a nose dive (or even a partial nose dive) makes me feel physically ill.

 

I absolutely think you need to follow your gut here - and like Nancy just said above - it doesn't seem like normal behavior at all - not even passing for "quirky". Trust me, I know quirky...in fact, I love quirky. I am just coming out of my deep lurking status to tell you to follow your gut and don't ignore it. Do you have a good relationship with any of the doctors that have treated your daughter? Can you have a heart to heart (even exactly what you posted above) with a doctor that will listen? If yes, I would absolutely have a conversation quickly. What would you ask for? I don't know exactly, but starting the conversation is a good place to start.....

 

I can absolutely tell from the way you have thoroughly written this post (and yes, I have read many of you previous posts...yeah, been mostly lurking around here since 2013...and just had IVIG #2 for my son) that you are smart woman, very capable and probably knowing that you need to do something....and if it takes this village to validate your concerns then, well, here we are - at least a couple of us so far... ; )

 

Above all, I will be sending you good juju and hope that you get some improvement...

 

My best,

 

Kristi

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right now I feel like if I come out and say that my son needs to be tested or seen, that everyone I know including my husband and some of my relatives and friends are going to say that I am overreacting and over thinking this and creating a problem. How can this even be happening? What are the odds?

 

Something else that terrifies me.... my son is exactly the same age as my daughter was at onset. Her symptoms started Oct 2013 before she turned 8 in November. My son will be 8 this December.

 

I really feel like a psychotic lunatic. I am not kidding. I am trying really hard to be in denial here, I really am. I truly am questioning if I am the only one that needs treatment right now, because this just can't be happening. It just can't.

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I don't think you're creating a problem by getting medical consultation for your son. Even if other people think so, is that going to stop u from taking action out of concern for your son? No. Take action.

 

It's surely easy for me to say this, but try not to overthink the timing relative to your DD. You don't know for sure what's even going on yet, and even if it's related, please try to compartmentalize so as not to overwhelm yourself...again, easy for me to say.

 

Saying prayers for you and sending virtual hugs!! Please keep us posted.

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right now I feel like if I come out and say that my son needs to be tested or seen, that everyone I know including my husband and some of my relatives and friends are going to say that I am overreacting and over thinking this and creating a problem. How can this even be happening? What are the odds?

 

Something else that terrifies me.... my son is exactly the same age as my daughter was at onset. Her symptoms started Oct 2013 before she turned 8 in November. My son will be 8 this December.

 

I really feel like a psychotic lunatic. I am not kidding. I am trying really hard to be in denial here, I really am. I truly am questioning if I am the only one that needs treatment right now, because this just can't be happening. It just can't.

 

Beerae --

 

I completely understand your denial here, but you are not psychotic . . . not even close! You're not even over-reacting! You've seen this before, so you recognize it. And the whole "rarity" and "what are the chances of two kids in one family" having an immune condition like PANDAS/PANS thing?! Your kids may be another increasingly common representation of just how "un-rare" these conditions are becoming among siblings and in the population in general.

 

I don't want to freak you out, and I certainly don't wish PANDAS on your DS, though I think someone in your shoes at this moment might ponder the "what if's." What if it IS another case of PANDAS? Then you can get him medical treatment and control this, if not potentially put an abrupt end to it, before the anxiety and odd behaviors become a fixation for him. What if it isn't another case of PANDAS? Better to know that now, early on, so that you can find some therapeutic responses that help him contend with the anxiety, etc. Whatever the underlying cause, the quality of your DS's life is at stake to some extent as no mom wants to see her kid in tears every night or at meal time.

 

I'm so sorry your DH, friends and family are not always supportive or understanding, but if you wait to the point at which your DS's behaviors become "abnormal" in all of their eyes as well as your own, he will have potentially suffered longer without care that could help, and his condition may become more intractable and harder to "undo." You've done wonderful things with your DD and you're wise to the ways of this PANDAS/PANs things now, so please trust yourself and lean on us for support if it's lacking elsewhere.

 

You are the hero of this story, not the "crazy" anti-hero! You can do this!

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I ditto everyone's thought that you should not ignore this. Even if it is not Pandas, there is something amiss.

 

Remember, research has revealed that their is a high prevalence of OCD in Pandas children and their families in general. So, while this may not bloom into all out Pandas, you still have to consider some OCD here, and have it evaluated.

 

If it is Pandas, the quicker it is treated I would have to assume, the faster the healing.

 

My husband fought me every inch of the way with my twin boys. One Pandas/One Other dx. It was not easy having the extra stress, but insisted and followed my gut no matter how much eye rolling I observed. I will tell you, now that both kids are doing better than great, He will be the first one to say how thankful he is that I did what I had to do.....so, push on. If it turns out to be nothing...well, isn't that the best scenerio? That is the way I approached it. Let everyone laugh behind my back, but as far as my son's went, going with my gut allowed me to sleep better.

 

Sending warm thoughts.....

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Beerae- I am sorry you are going through this. Be strong, Mama!

 

I am one of the parents with two pandas kids (my only two children). My younger daughter was diagnosed first, she was 5 (is now 12). She had strep, with a pretty catastrophic onset of ocd symptoms. Basically, one day she was a sweet and happy kindergartener, and within two weeks she couldn't dress, go to school, separate from me, and spent hours in the bathroom. The ocd crippled every area of her life- so diagnosis was easy, and a relief. Her older sister, then 8 (now 15) also had strep at the same time. She also had pandas onset at the same time, but we didn't realize it. She was not as severe, she was able to hide symptoms, and she also was able to get through life, mostly. Six months later, after the flu, she had a much more catastrophic onset, and then we knew.

 

The symptoms your son is exhibiting are ocd, I have no doubt about that. I have heard of other kids- probably on here- with the obsessing over other peoples chewing thing. "Normal" kids chew with their mouths open, and don't care how their neighbor eats (I spent a little time as a lunch aide!). I mean, the lunchrooms are hot, they are loud, they smell like tacos, etc- 97% of the kids don't notice.

 

It is really, really hard dealing with this disorder. It is not easier with the second. Like you, our first was an "emergency"- so there was no time to think- we needed help. The second one, the diagnosis was agonizingly slower- harder to accept.

 

The doctor we saw at that time, Dr L, now screens siblings, when she starts with a pandas family. I would say it is probably very, very common that pandas families have multiple kids affected. I know a lot of families (on here) that have multiple kids. I also know a lot of other families that have one pandas child, and another one they say is not pandas, but does have mild anxiety and ocd- so I appreciate that the disorder may be some type of spectrum of severity.

 

I honestly think your son will be relieved if you discuss with him this may be ocd. The kids KNOW that something is wrong. They are having upsetting thoughts that they did not before. If he is so mild, possibly a month of antibiotics will clear things up for him.

 

Good luck- and know, most of us pandas moms (and some dads) seem to have to be the lone person in their family that understands. My husband took a while to come on board about the second. He also doesn't really "get" it and likes to treat ocd as behavioral. I have found some support outside the home: kids' therapist, my parents, pandas support group, etc- which really helps!

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Beerae listen to everyone else. I stayed in denial on my second son for a long time. We got him abx and saw improvements. I may have more to report at a later date.

Please everyone, watch Truth About Cancer. Buy a copy and have screenings or something.

 

Best wishes

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I am so sorry!

Pandas absolutely does run in families. We see Dr. L and she says while the absolute scientific proof is not there, there is a genetic component. This makes sense because it is very closely related to Sydenham's Chorea, which has been scientifically proven to run in families, and the fact that SC is genetic is accepted by mainstream medicine.

 

Of course, OCD runs in families too. His behavior is certainly concerning and I would follow up with treatment for the OCD for sure. I would not dismiss the possibility of an infectious trigger. Since you have been down this road, you know that with the right antibiotic behaviors can wane. I would do a one month antibiotic (at least).

 

I have 2 PANDAS kids. My sister has 3. SC runs in our family as well as autoimmune reactions to strep. My sister's oldest was in terrible shape and required plasma exchange and over a year of IVIG to return to baseline. Her middle child, while not nearly as bad, was also concerning and had 4 IVIGs. Her youngest began exhibiting ocd behaviors and she got on a plane to Dr. L asap. She was 6 at the time. Dr. L put her on antibiotics for a while and then did a one month steroid taper. She has been perfectly fine since (she is 9 ½).

 

It sounds to me like if it is infectious and you hit it hard it may disappear never to return!

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What does not make sense is that neither my generation nor my parents show OCD or SC. Yet we have two pandas kids, and both sisters likely have one (although do not recognize it as such).

 

I think it's good that you recognize the earlier symptoms even if it's dream crushing and scary to do so. Refusal means going through the endless cycle of psych meds that never really work. I, at first, did not recognize P, I thought we were bad parents, or that we had too much stress from work etc in our kids life. In a way, recognizing P was recognizing my own sense of fatigue from parenting and frustration about our inability to see our kids doing typical activities. Instead of two difficult kids - which we could not solve (and which others judged us for) - we had a disease to treat. Kids do not naturally want to be picky eaters, defiant, rageful etc.. They want and need real help.

Edited by dasu

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Thanks everyone.... The support here is helping to keep me sane, or at least helps for a moment to feel like I'm not 100% nuts.

 

Ds's teacher emailed me with yesterday's "check in". The lunch para told her that ds ate nothing at lunch at all-- and she told him that he really should eat something, so he took a bite of his fudgecicle (ice cream day at school) and when she walked away (not knowing that she was still watching him) he spit the bite out into his napkin.

 

On the bright side, he did eat his snack of crackers and cookies, in the classroom.

 

So, today when he came home I had a "casual" talk with him about lunch when he told me he hadn't eaten (I asked him what he ate for lunch). He tells me that the kids chewing grosses him out, and that all the "leftovers" gross him out, and that he really tries to not think about it- and that sometimes he can, and usually he can't. He also told me that he's lonely sitting by himself :( which is heartbreaking to hear. I asked him if he wanted to choose a friend and go somewhere else to eat and he said he doesn't want to do that.

 

I am going to put a call into the school social worker that knows him well and schedule a meeting with her. She worked with him when he had a terrible time transitioning to kindergarten, and she is also Lyme literate- I've had many conversations with her about dd. I'm hoping she can help my sweet little guy to be comfortable somehow so he can eat his lunch. He told me today that he was hungry and wanted to eat but couldn't.

 

Beyond calling the social worker, I don't know what to do. This was all i could think about all day. I might try scheduling some blood work, I don't know. I'm just beside myself and feel sick just thinking about all of this. Thankfully, at least he did eat some dinner and snacks at home.

 

Thanks again everyone. Even just doing this "brain dump" helps, because I know some of you are listening and understand.

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My heart poured out for you as I read. The emotions and feelings are so real, so close to my surface. I have twins with PANDAS. We are starting our first round of treatment now for mycoplasma. From our experience I would recommend anyone wondering if it is PANDAS/PANS to get a host of bloodwork done right away. You don't need to tell your friends/relatives outside your immediate family that you are doing this. When you have some facts and if it looks like you have some bloodwork indicating an infection of some kind, then find a doctor to get the help you need. It took me a long time to do that. We started with the Cunningham Panel but you would not need to start there. You could just get LOTS of bloodwork done looking for all infectious agents. Ours happened to be Mycoplasma Pneumonia.

Until you test and know for sure, you will always wonder.......so why not test.

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Hello.

 

I haven't read the whole thread (sorry) so not sure if someone has already mentioned this but I've seen one of the conference videos where I think it was Swede said that the sibling incident rate for this is super high, somewhere around the 40% mark. So, unfortunately, the odds are not great for having more than 1 child with PANDAS/PANS.

 

Most of my family members thought I was crazy to think we had a second child with it. As for friends, well..... but my gut was right and all the quirks turned into obvious PANDAS as he's gotten older.

 

Trust your gut... good luck.

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