another question about my non pandas dd

[ajcire]

I don't know what to think anymore. My dh had been away for the last 2 weeks of meltdowns in my non pandas dd... (well, maybe non pandas) and he was home yesterday and she had a good day. I could see a few times where she was going to lose it but she pulled it together. My dh left today and within 5 minutes of him being gone she was in crisis over something stupid with her brother. She was on the floor up at the top of the stairs once again screaming that her legs and feet hurt and she can't come down the stairs. She finally came down on her but with her feet in the hair and laid down at the bottom of the stairs screaming until I carried her to the couch. That was the end of it.. no more screaming, no more crying, no more legs hurting. This is the 3rd meltdown that has ended with her screaming about her feet/legs. She's walking fine now. I do not believe at all that her legs hurt her during any of this.

 

I know to anyone else it sounds like it's an issue she is only having with me and clearly I just need to discipline her but I really don't believe it's that and I don't believe it has anything to do with my dh having to travel a lot for work at the moment.. He's always had this kind of schedule.. it's not new.

 

I think this seems so similar to my pandas ds's meltdowns when he is having trouble except that he would do it even while my dh was here although still more for me.. Neither ever had issues at school.

 

I guess my question is does it seem that strange that she is not doing this when dh is here? Does it mean that clearly she has so much control it isn't a pandas issue?

[peglem]

When I was pregnant with my youngest child (yes, the autistic/PANDAS one) about midway through the pregnancy, I started having this thing happen. Each morning when I got out of bed, I had excruciating pain in the arches of my feet. It was REALLY painful! After about 10 or 15 minutes of gingerly "walking" on them, it would go away. The other thing that would happen (and still very infrequently happens) is I would get "hot foot" at times throughout the day. This is like burning heat on the bottom of my feet- like a fever inside. I reported to the doctor at my preg. appointments- they said "hmmm, well there's no swelling there." And assured me this is normal for pregnancy. But this was my 4th pregnancy and it had never happened before. I think it continued for awhile after my daughter was born as well. I don't think it was normal and I never figured out what caused it.

[dcmom]

This is a tough one. One thought- my pandas dd always does better on the weekends. She more rested, and has more time to do stuff- this is also when dh is home. Could this be part of the reason she is better? My dd also holds it together much better at school- where she will sit there silent and miserable, and then let it out to me when she comes home. I guess to her, I am the only one who understands...

 

I tend to prefer to believe my kids when they say something, I know some have mentioned to me that maybe non pandas dd is making up her stomach aches- but I know this isn't true. Try to be compassionate and kind, but maybe for a few days ignore as much as you can the complaints of pain. Try to switch it up and distract her if she starts complaing- say Oh let's go do this (something fun). Observe her, I think you will figure it out- you just need more time to see if/what pattern there might be...

[ajcire]

Wow Peg, that must have been very frustrating. I hate to not believe her if it really is hurting her but I am just finding it so hard to believe that it is really hurting.. it is only when she is in full meltdown mode that she is saying it. The meltdown doesn't start with her saying anything hurts.. it starts with her getting upset about something silly. She still says her throat hurts often and the dr. has checked and keeps saying it's fine, cultures come back fine too. My mom thinks it has just become a habit and to tell her that the dr. says she is fine but I won't do that because what if it really hurts... I just don't know what to do with a non red, non strep throat. She gets strep often but this time it doesn't seem to be it. 2 weeks ago she was always saying she doesn't feel well.. often her tummy sometimes her throat, sometimes just that she doesn't feel good. . I got the rest of bloodwork results that the ped ran on her back yesterday and everything is coming back normal.. no mono, no lyme, celiac panel normal, and who knows what else was checked for.

 

 

If she was telling me all the time when she was calm and rational that her leg hurt I would be more inclined to believe that something was really hurting her. When she is saying it is hurting she is already in a completely irrational mode that I can't talk to her about it hurting.. she just screams and screams.

 

dcmom, I feel the same away about my dd's constant tummyaches. I do believe her on that. I just don't know what to do for her.

 

When I was pregnant with my youngest child (yes, the autistic/PANDAS one) about midway through the pregnancy, I started having this thing happen. Each morning when I got out of bed, I had excruciating pain in the arches of my feet. It was REALLY painful! After about 10 or 15 minutes of gingerly "walking" on them, it would go away. The other thing that would happen (and still very infrequently happens) is I would get "hot foot" at times throughout the day. This is like burning heat on the bottom of my feet- like a fever inside. I reported to the doctor at my preg. appointments- they said "hmmm, well there's no swelling there." And assured me this is normal for pregnancy. But this was my 4th pregnancy and it had never happened before. I think it continued for awhile after my daughter was born as well. I don't think it was normal and I never figured out what caused it.

[momaine]

my dd who has pandas ocd/tics does better with people around. It is exhausting to hold it all in though and after company leaves things are much worse for a time. It's weird that they have some control over it but not when it is just mom, but it is like that. I wish I knew why.

 

Angela

[Suzan]

My kids always did better at school or other peoples houses but they would fall apart at home. This was always hard to understand. My dd8 had lots of pain. She had what I called growing pains, joint pain, unexplained pain. The scene you describe is VERY similar to what I've seen here over and over. Sometimes the pain is quick to leave and there have been other times where she could not walk for a week. I never believed her until probably a year ago. I thought she was being overly dramatic. Now I know it's her PANDAS. She has leg pain, ankle and foot pain, stomach ache, headache, hand and finger pain, back pain, over all feeling bad and not well. It has almost all gone away with antiboitic treatment. Now, when her pain comes back, I can see it in her eyes too. Her pupils will get real big while she is in pain and then the pain passes and her eyes go back to normal.

 

I can see how her behavior changing when DH is not around would be very confusing. I am single so I don't have anything to compare that to except that she was always better when other people were around than when she was with just me.

 

Dr. T just told me about how strep can cause pain and it is the explination of her episodes of when she could not walk, even though we don't believe she has rheumatic fever.

 

Susan

[ajcire]

Dr. T just told me about how strep can cause pain and it is the explination of her episodes of when she could not walk, even though we don't believe she has rheumatic fever.

 

Susan

 

 

Thanks Susan, I am going to ask Dr. T about my dd when I take my son to see him in a couple of weeks. I have a bad feeling that by time I am done I will be paying for a visit for 2 kids instead of 1.

[Suzan]

Dr. T just told me about how strep can cause pain and it is the explination of her episodes of when she could not walk, even though we don't believe she has rheumatic fever.

 

Susan

 

 

Thanks Susan, I am going to ask Dr. T about my dd when I take my son to see him in a couple of weeks. I have a bad feeling that by time I am done I will be paying for a visit for 2 kids instead of 1.

 

I know you are worried but I am glad you are asking the questions now. I know he can give you some insight into your dd. It was hard for me to realize how often I had ignored and blown off my dd's pain but you just never think that a kid would have pain like that. I hope it turns out to be a phase or growin pains, etc. But I do see why your ears are perking up about this.

 

Susan

[ajcire]

Thanks Susan. I can tell I am being repetitive in my questions though. I guess I am hoping some big giant sign comes out of the air to tell me if this is pandas or not for her.

 

 

 

I know you are worried but I am glad you are asking the questions now. I know he can give you some insight into your dd. It was hard for me to realize how often I had ignored and blown off my dd's pain but you just never think that a kid would have pain like that. I hope it turns out to be a phase or growin pains, etc. But I do see why your ears are perking up about this.

 

Susan

[smartyjones]

i don't know how this would relate to your husband being home or not . . . but i seem to have found that during an exacerbation, my son is better behaved/controlled when he is engaged in activity. during his worst, he didn't display the really obnoxious behaviors at school. i noticed that at home also he was much better when fully engaged in an activity.

 

that's what i believed to be the difference, not that he knew it wasn't acceptable at school but could get away with it at home but rather that he was engaged in an activity vs not being fully engaged. it does seem to follow for me that maybe it is somehow related to the brain activity and synapses and what they can/cannot control at particular times.

 

could it be that simply your husband's presence provides more structure, direction, personal involvement? or is he also providing those things actively? so it could be an element of the general environment rather than what is acceptable with whom or where.

 

as frustrating as the behavior can be, i really do think for the most part, kids want to get along and live harmoniously. before we knew what was up with my son, he was acting horribly in coffee shops when we met friends or family. a couple of times, i talked with him and said we couldn't go if he was using bad manners and asked if he would use nice manners. i remember him saying, "i don't know." now i really believe he really didn't know and wasn't so much chosing to use bad manners.

[MomWithOCDSon]

My kids always did better at school or other peoples houses but they would fall apart at home. This was always hard to understand. My dd8 had lots of pain. She had what I called growing pains, joint pain, unexplained pain. The scene you describe is VERY similar to what I've seen here over and over. Sometimes the pain is quick to leave and there have been other times where she could not walk for a week. I never believed her until probably a year ago. I thought she was being overly dramatic. Now I know it's her PANDAS. She has leg pain, ankle and foot pain, stomach ache, headache, hand and finger pain, back pain, over all feeling bad and not well. It has almost all gone away with antiboitic treatment. Now, when her pain comes back, I can see it in her eyes too. Her pupils will get real big while she is in pain and then the pain passes and her eyes go back to normal.

 

I can see how her behavior changing when DH is not around would be very confusing. I am single so I don't have anything to compare that to except that she was always better when other people were around than when she was with just me.

 

Dr. T just told me about how strep can cause pain and it is the explination of her episodes of when she could not walk, even though we don't believe she has rheumatic fever.

 

Susan

 

Really interesting! My son has frequently complained about various physical pains . . . arms, legs, ankles, feet, even stomach muscles . . . but as he's not especially athletic and we couldn't see any bruises or associate the pains with any particular activity, we, too, told him they must be "growing pains." But it makes some sense that it might be the strep, or maybe the inflammation that impacts the brain is also impacting other places/joints?! Can't believe it took me this long to put it together.

[ajcire]

Smarty, I'm not really sure what it is but definitely when I have dh home there is more individual attention to be spread amongst my kids and often we are doing more. I'm probably less stressed and react differently when I am not alone with them too. I am going to try to give her less idle time. She does better with the one on one attention but I just can't always do that as much as I would love to.

 

 

i don't know how this would relate to your husband being home or not . . . but i seem to have found that during an exacerbation, my son is better behaved/controlled when he is engaged in activity. during his worst, he didn't display the really obnoxious behaviors at school. i noticed that at home also he was much better when fully engaged in an activity.

[Worried_Dad]

I know this is your "non-PANDAS child" - and I pray she stays that way - but thought I'd share this.

 

When our son first became sick, he was diagnosed with ARF / SC instead of PANDAS. His initial symptoms were more of the polyarthritis, muscle weakness, tremors, difficult walking variety (although we saw "emotional lability" too).

 

Here's the weird part. Our son had these episodes where he would suddenly collapse to the ground, claiming he could not walk or lift his head or arms or control his body. It was so bizarre: he'd be running around one minute, apparently fine, then just crumple. We definitely noticed that it got worse when he was in the grips of any strong emotion: stress, anger, but also excitement. It was hard to believe that he wasn't at least exaggerating it, the way it came out of nowhere.

 

Then a bunch of folks on the SC forum I used to frequent told me they or their children with SC experienced the exact same thing! They called it the "rag-doll effect." A few adults who were current or former SC sufferers even described it: they said it just felt like somebody "cut the link" between their brains and their limbs for a period of time.

 

Basal ganglia injuries have really, really strange effects, I guess. I don't at all want to jinx your daughter into the PANDAS group... but this was definitely something we saw with our PANDAS son.

[peglem]

I know this is your "non-PANDAS child" - and I pray she stays that way - but thought I'd share this.

 

When our son first became sick, he was diagnosed with ARF / SC instead of PANDAS. His initial symptoms were more of the polyarthritis, muscle weakness, tremors, difficult walking variety (although we saw "emotional lability" too).

 

Here's the weird part. Our son had these episodes where he would suddenly collapse to the ground, claiming he could not walk or lift his head or arms or control his body. It was so bizarre: he'd be running around one minute, apparently fine, then just crumple. We definitely noticed that it got worse when he was in the grips of any strong emotion: stress, anger, but also excitement. It was hard to believe that he wasn't at least exaggerating it, the way it came out of nowhere.

 

Then a bunch of folks on the SC forum I used to frequent told me they or their children with SC experienced the exact same thing! They called it the "rag-doll effect." A few adults who were current or former SC sufferers even described it: they said it just felt like somebody "cut the link" between their brains and their limbs for a period of time.

 

Basal ganglia injuries have really, really strange effects, I guess. I don't at all want to jinx your daughter into the PANDAS group... but this was definitely something we saw with our PANDAS son.

 

I bolded the part I'm responding to. My daughter had this as well. Since she couldn't speak to explain, school assumed it was behavioral! (ODD)They gave her consequences for it. We thought later (after it went away) that perhaps they were atonic seizures. This was before we knew about PANDAS.

[Tattoomom]

my dd who has pandas ocd/tics does better with people around. It is exhausting to hold it all in though and after company leaves things are much worse for a time. It's weird that they have some control over it but not when it is just mom, but it is like that. I wish I knew why.

 

Angela

 

 

Same here.