Symtoms disapear different environment

[tapiash]

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he hols or control symtoms. I am so confused and frustrated.

[forjpj]

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he hols or control symtoms. I am so confused and frustrated.

 

 

Oh yeah!! This is definitely our situation!! Frustrating isn't it?! You almost feel like the catalyst sometimes. The most frustrating part, for me, of this aspect of the disease is explaining it to friends and family. That was everybody's first question, and inevitably I would end up justifying the situation. It is bad enough you have to explain the disease everywhere you go, but then everybody wants to play psychiatrist for you. Even some of my biggest supporters had trouble understanding this part of it. They would try to "work their magic" when I was not around, and solve the problems for us. I have wasted soooo much time answering and defending the "why doesn't he do it when your not around" question to others, my husband, and myself. It just takes one little remark to plant that seed of doubt, and it puts you on the defensive. It really isn't fair!! Things would have been so much better during this latest exacerbation, if I could have put all that energy into other things besides wondering/defending why he only does stuff around me. Just try to keep in mind that it is absolutely a part of the disease, and it seems to be that the mom gets the worst. Some can control it to an extent, not that they realize it. I was so relieved to know the doctor thought this was perfectly normal for a pandas kid. Hope this helps!! And remember, we are all here for you!!

[kimballot]

Two things come to mind with these posts -

 

First -I worked with quite a few kids with tourette as a professional before having my own children. The parents often told me stories of the kids holding in their tics in the classroom at school and then going to the bathroom to quietly tic when they could not stand it any longer, or having their parents pick, them up from school instead of taking the bus and then they would tic the whole way home. Tics and OC behaviors are personal and private and kids often do not share them with people with whom they are not extremely comfortable. (though I too have often secretly wondered if I was somehow making my child sick!)

 

Second, - on a separate note - Tapiash - does your son have allergies? I know it may seem that if he does the allergies might be worse on a weekend of camping... but you may have something in your home that is triggering it. My son had his WORST every tic attack one year when visiting a friend. He was 6 years old and over the weekend developed very odd neck twisting movements, and a need to walk 3 steps and then lean forward (this went on all day at a carnival - to the point where I carried him), along with vocal tics. We ended the vacation early so I could get him home. Within 3 hours of driving home in the air conditioned care - the tics stopped. Six months later my friend discovered black mold seeping through the ceiling in a bedroom. She and her daughter had been sick with ear and sinus infections for months. She then proceeded to have several months of mold abatement throughout the house. Sometimes our kids truly are the canaries in the coal mine!

[KaraM]

This happens with my daughter even on a smaller scale. So much of her contamination issues have to do with our house, her clothes, etc. She sees something happen to something (i.e. her brother touches something after touching something else that was already contaminated). When she goes somewhere else, there is not as much history. So she doesn't have issues. (Unless she spends a lot of time there - like her cousins house - then things start to creep up).

 

She also holds it together better around others (maybe out of embarrasment or not wanting to cause problems). For example, for weeks, she could not drive on two of the streets that lead to our house. Our friend was driving her somewhere. I warned my friend (who, by the way, actually is quite supportive), but she thought with all of the other kids in the car my daughter wouldn't notice. My daughter acted fine the whole time she was with them, but as soon as she got through the door after getting home, she stripped and ran into the shower. My daughter said she couldn't stop thinking about it the whole time she was out. (Of course my friend didn't see that part, so she was saying, "see, she was fine, we just did it....").

 

And don't forget, there are so many kids who hold it together at school and only have issues at home. My daughter has issues at school. While she may become preoccupied with her fears, she doesn't explode or have rages. She saves that for home.

 

There have also been posts either here or on OCDandParenting about children improving when they go on vacation. Personally, I'm hoping for that as we head to FLA in a couple of weeks. It would be nice for all of us - especially her - to have a little reprieve.

 

You are right, it does get frustrating and confusing. You are not alone.

 

Kara

 

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he hols or control symtoms. I am so confused and frustrated.

[Worried_Dad]

Beth Maloney describes this same phenomenon in "Saving Sammy." After Sammy's recovery began (once they started the augmentin XR), they took a family vacation (to Florida, I think). Sammy did great the whole time away - no tics, no rituals. Then as soon as they got home, his tics and compulsions took over again.

 

As I recall from the book, Beth decided to "mix things up" and moved a bunch of the furniture around to change the home environment. For Sammy, this worked: his tics and compulsions diminished.

[MomWithOCDSon]

We see this, too, in our DS13. Mostly now, it is about maintaining at a high level at school, but then coming home in the afternoon and falling apart.

 

I've always assumed it is two-fold: 1) the home environment is one that our kids have historically had at least SOME, if not substantial, control over to their own benefit, so they expect to be able to maintain that, even in the face of OCD and tics that interrupt, whereas, in the outside world, they accept they have considerably less control there, so they go into "survival mode" and keep it more bottled up in order to get through the day/weekend/whatever. But at the same time, chances are the other people in their lives . . . even grandparents . . . are somewhat less adept at recognizing the signs of stress and anxiety, even OCD behaviors or minor tics . . . than those of us who live with them 24-7, so it is likely that, outside your company, there is a perception of a lower level of behaviors than may actually exist. And, 2) Home is the safe place, and family are the people who will never stop loving and caring for you, no matter what. So that's where our kids can really "let their hair down" and be themselves, for good or bad.

 

I also think that we, sometimes unwittingly, aid and abet our kids some, especially when it comes to OCD. When your kid is SO bound up in OCD behaviors, you find yourself "picking your battles" just to get through the day, and then you can inadvertently support one behavior or ritual because it is LESS intrusive than another. So our kids can come to expect that leniency, "acceptance" or even support from us, whereas they don't expect it from others and are therefore less apt to display those behaviors outside our company.

[7upMom]

Same with us--- the school never saw anything until this last year, he ended up deteriorating to where they saw some glimpses and now he isn't in school at all. When outside "friends/family" visit they would look at us like we were exaggerating or full of it when we would describe him, because he would hold it all in while they were here. Our son is so nonfunctioning now that we have him in a separate house away from me ( it is worse around me -mom) and his siblings, but he does much better ( rage wise ) one on one. I could honestly say right now that at 9 he has gotten to the point with each exacerbation that now he could easily be mentally institutionalized longterm- with schizophr or whatever they would diagnosis him with. I am curious to see how he will be when we go to ivig next week and are around other people- he hasn't been around anyone for over a month now.

The "controlling" of the symptoms is why the doctors kept telling us it was a mental health issue this confuses them also except for PANDAS docs - they get it.

[momto2pandas]

I would strongly suspect allergies. We had just the opposite experience from you a couple of week-ends ago. We went camping and fishing as a family, on a Cub Scout outing. Just a few days before, we had found out that Ds6 has allergies to all kinds of deciduous trees that were blooming that week. I had been thinking that it was lucky for us that we live at in the mountains where we have mostly conifers (which none of us are allergic to) and limited exposure to all of those allergenic trees...but when we got to the campground, it was covered in the trees that he's allergic to. We all did wind up having a good time, but the allergy situation was obvious and a real drag. I'm sure it didn't help that we ended up making allowances on the food allergies, too, so that he wouldn't be the only kid who didn't get to eat a s'more, etc. Things improved dramatically when we got home again. I can imagine that if your son has allergies to indoor allergens, camping and fishing for 3 days might yield dramatic improvement.

 

Related to this, we were perplexed for a while about why ds6 always went to school it a pretty good mood, and came off of the bus looking as sour as could be. We found out that he was allergic to peanuts, corn, and soy (in addition to milk, which we had known about) - and guess what we'd been putting in his lunch every day? Peanut butter sandwich, corn puffs, and soymilk. Removing those helped enormously - wow, what a difference. But I have to admit that before we made the lunch connection, I did take it personally that he seemed to get into a bad mood right as it started to be time to come home.

 

Over my entire life with PANDAX and allergies, I have noticed less symptoms when I'm in a new environment. I think that's a lot of what has driven my travel bug! Each time I go abroad (which I'm addicted to) or move from one coast to another (which I have done several times), I feel this incredible sense of well-being, and it can last a couple of years. My doctors say it takes about that long to develop new environmental allergies. One even suggested to me that we just plan on moving every 3 years!

[matis_mom]

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he hols or control symtoms. I am so confused and frustrated.

The first thing that comes to mind is HAS EVERYONE IN YOUR HOUSEHOLD BEEN CHECKED FOR STREP??? Any dogs?

Maybe being away from a carrier is what is making a difference.

[tired mom]

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he hols or control symtoms. I am so confused and frustrated.

My daughters symtoms are only evident in our home and with family members whom she is close to. She was always able to hold it together in school but I would pay a dear price when she came home. One therapist told me that if she spent more then 2 weeks in a different home her symptoms would manifest there. This is true as she spent 9 months at my sisters home because she could no longer function at her own home during an exacerbation. Sad time....

Anyway her symptoms did become worse there after a few weeks but never got as bad as at home.

[tapiash]

Two things come to mind with these posts -

 

First -I worked with quite a few kids with tourette as a professional before having my own children. The parents often told me stories of the kids holding in their tics in the classroom at school and then going to the bathroom to quietly tic when they could not stand it any longer, or having their parents pick, them up from school instead of taking the bus and then they would tic the whole way home. Tics and OC behaviors are personal and private and kids often do not share them with people with whom they are not extremely comfortable. (though I too have often secretly wondered if I was somehow making my child sick!)

 

Second, - on a separate note - Tapiash - does your son have allergies? I know it may seem that if he does the allergies might be worse on a weekend of camping... but you may have something in your home that is triggering it. My son had his WORST every tic attack one year when visiting a friend. He was 6 years old and over the weekend developed very odd neck twisting movements, and a need to walk 3 steps and then lean forward (this went on all day at a carnival - to the point where I carried him), along with vocal tics. We ended the vacation early so I could get him home. Within 3 hours of driving home in the air conditioned care - the tics stopped. Six months later my friend discovered black mold seeping through the ceiling in a bedroom. She and her daughter had been sick with ear and sinus infections for months. She then proceeded to have several months of mold abatement throughout the house. Sometimes our kids truly are the canaries in the coal mine!

We have tested my son for allergies, mold, blood poisoning. You name it, he has had it done. Poor little guy. These children go through so much. We have also been tested for mold. The lady who did the tests said typically people who have been exposed to mold she will find.

[tapiash]

This happens with my daughter even on a smaller scale. So much of her contamination issues have to do with our house, her clothes, etc. She sees something happen to something (i.e. her brother touches something after touching something else that was already contaminated). When she goes somewhere else, there is not as much history. So she doesn't have issues. (Unless she spends a lot of time there - like her cousins house - then things start to creep up).

 

She also holds it together better around others (maybe out of embarrasment or not wanting to cause problems). For example, for weeks, she could not drive on two of the streets that lead to our house. Our friend was driving her somewhere. I warned my friend (who, by the way, actually is quite supportive), but she thought with all of the other kids in the car my daughter wouldn't notice. My daughter acted fine the whole time she was with them, but as soon as she got through the door after getting home, she stripped and ran into the shower. My daughter said she couldn't stop thinking about it the whole time she was out. (Of course my friend didn't see that part, so she was saying, "see, she was fine, we just did it....").

 

And don't forget, there are so many kids who hold it together at school and only have issues at home. My daughter has issues at school. While she may become preoccupied with her fears, she doesn't explode or have rages. She saves that for home.

 

There have also been posts either here or on OCDandParenting about children improving when they go on vacation. Personally, I'm hoping for that as we head to FLA in a couple of weeks. It would be nice for all of us - especially her - to have a little reprieve.

 

You are right, it does get frustrating and confusing. You are not alone.

 

Kara

 

I have an 8 year a old son who recently had blood work done for PitAnd/Pandas. We are waiting for the results. For the past 7 months I have had many sleepless nights trying to find answers. Just when I think I have finally found them, I start doubting and thinking I am just absolute crazy and I am driving and responsible for my sons behaviors. My son spent the weekend with his grandparents who live 3 hours away. They went camping, fishing the entire weekend. She said his ticks were gone, he didn't have any outbursts and his ocd tendencies were non existent. He went 3 days without a bath. At home he usually takes two a day. Outbursts are pretty unpredictable. Has this ever happened to anyone else. Can he holds or control symtoms. I am so confused and frustrated.

 

I cant believe so many of you have expereinced this. I had a friend who was ready to committ me to a hospital. People think because I am a counselor I make up symptoms or " look " for them . You all know more than anyone I or non of you would do such a thig. I f anyone had any idea how exhausting this was for a mother and a family they would bite their tongue before speeaking. My daughter told me she wanted the old Ethan back. So sad:( They have always had their fights but lately it is more extreme. My next mission is a diagnosis. All is blood work is coming back negative. He may have had a previous EBV infection but not sure if that will exacberate symptoms or be enough for PITAND diagnois. Thanks to everyone for their comments and support. I am emotionally drained as I know many of you are too.

[T_Mom]

Yes, once my d was on the road to healing it was possible that her behavior could be better around others, for a time--though at the worst of it, there was no mistaking symptoms regardless of who was around!

 

I would wonder how your son would have self reported?

It would be interesting to know if he would have rated his OCD and tics at a "lesser" number over the time with the grandparents? He may be holding it in, in which case he may still sense the strength of it--

 

Sunshine? (good ol' vitamin D) Have you had his blood levels checked for adequate vitamin D?

Edited April 6, 2010 by T.Mom

[kimballot]

I cant believe so many of you have expereinced this. I had a friend who was ready to committ me to a hospital. People think because I am a counselor I make up symptoms or " look " for them . You all know more than anyone I or non of you would do such a thig. I f anyone had any idea how exhausting this was for a mother and a family they would bite their tongue before speeaking. My daughter told me she wanted the old Ethan back. So sad:( They have always had their fights but lately it is more extreme. My next mission is a diagnosis. All is blood work is coming back negative. He may have had a previous EBV infection but not sure if that will exacberate symptoms or be enough for PITAND diagnois. Thanks to everyone for their comments and support. I am emotionally drained as I know many of you are too.

 

Sometimes being a counselor means that you are more sensitive to the symptoms and notice them first. Others may not realize that a particular movement is a tic or a particular behavior is a compulsion... so they think everything is fine. Being the parent of a child with PANDAS puts everyone in the "expert" category pretty quickly and we soon start to recognize our own children's patterns - again - well before others might see them.

[tapiash]

Yes, once my d was on the road to healing it was possible that her behavior could be better around others, for a time--though at the worst of it, there was no mistaking symptoms regardless of who was around!

 

I would wonder how your son would have self reported?

It would be interesting to know if he would have rated his OCD and tics at a "lesser" number over the time with the grandparents? He may be holding it in, in which case he may still sense the strength of it--

 

Sunshine? (good ol' vitamin D) Have you had his blood levels checked for adequate vitamin D?

You know what? I am going to have him do some self reporting. He knows there is something different . When he tics he says he says he feels a tingling sensation. After reading on this forum, I realize my sons behaviors are not nearly as extreme as others. I really feel for these families on this forum.