Understanding Fear

[Suzan]

Pandasquestions post about fear really got me going about what happened to me today but I thought it was not helpful to post as a direct response to the question about IVIG fear but I just feel I have to post it here. I feel like it is a life changing event and maybe it will help someone but really I'm posting it because I just can't help myself.

 

I had an experience today that really has helped me understand my children's fear. I had to get a tooth pulled. They hooked me up to the nitrous and gave me the gum numbing stuff. Everything was fine. I was OK. I don't get that scared of stuff, just stressed maybe and a little nervous but no big deal. I can stuff enough emotions to handle lots of stuff. The doc comes in and gives me two huge shots in my jaw and it was the most unexpected and painful thing EVER. Then there was some kind of nerve explosion in my face that was even worse. I started crying and could not stop. I was so scared now that if the shot was that bad, what was going to happen during the surgery? I know it was not reasonable, the shot was going to numb the pain. The worst was over. But my brain could not convince me of that. I could not calm down and could not stop crying. I wanted out of there. I really got, for the first time ever, what the kids must go through when they don't understand what is going on or what to expect or all the fears in their minds that are just so scary and overwhelming. It was a physical response that I could not control.

 

And then the actual tooth pulling was not good, made even worse by the fact that I had worked myself up into a panic. But he could not get the tooth out. There was so much pressure and pain on my jaw over and over. I thought maybe he would not be able to get it out. Then what? Was I going to have to go to the hospital? Maybe my jaw would be permanently damaged. Maybe since he had to drill so much I was getting some horrible bacteria loose in my blood and I'd get Adult onset PANDAS. The nurse asked if he needed to put some antibiotic directly on the tooth, he said no, I tried to say YES, PUT IT IN THERE! Now I am terrified of any type of dental work I think. I'm ready to have my teeth just rot out of my head if I can avoid ever going back to the dentist (not really but you know...).

 

The nurse held my hand and rubbed my arm. That was really good. I just wanted my Mom. I wanted my kids. I wanted to run away. I wanted someone to say "it's going to be OK. It's going to be over soon, I love you, I'm sorry"

 

What have I learned from all this though? Maybe I'll be more understanding when my kids are scared or acting unreasonable about something that may be out of fear. Maybe I'll realize that the words I say really do help even if they aren't acting like it.

 

Thanks for reading. I feel like I'll never be the same. But then again, I'm on a lot of hydrocodone.

 

Susan

Edited April 3, 2010 by Suzan

[KaraM]

Pandasquestions post about fear really got me going about what happened to me today but I thought it was not helpful to post as a direct response to the question about IVIG fear but I just feel I have to post it here. I feel like it is a life changing event and maybe it will help someone but really I'm posting it because I just can't help myself.

 

I had an experience today that really has helped me understand my children's fear. I had to get a tooth pulled. They hooked me up to the nitrous and gave me the gum numbing stuff. Everything was fine. I was OK. I don't get that scared of stuff, just stressed maybe and a little nervous but no big deal. I can stuff enough emotions to handle lots of stuff. The doc comes in and gives me two huge shots in my jaw and it was the most unexpected and painful thing EVER. Then there was some kind of nerve explosion in my face that was even worse. I started crying and could not stop. I was so scared now that if the shot was that bad, what was going to happen during the surgery? I know it was not reasonable, the shot was going to numb the pain. The worst was over. But my brain could not convince me of that. I could not calm down and could not stop crying. I wanted out of there. I really got, for the first time ever, what the kids must go through when they don't understand what is going on or what to expect or all the fears in their minds that are just so scary and overwhelming. It was a physical response that I could not control.

 

And then the actual tooth pulling was not good, made even worse by the fact that I had worked myself up into a panic. But he could not get the tooth out. There was so much pressure and pain on my jaw over and over. I thought maybe he would not be able to get it out. Then what? Was I going to have to go to the hospital? Maybe my jaw would be permanently damaged. Maybe since he had to drill so much I was getting some horrible bacteria loose in my blood and I'd get Adult onset PANDAS. The nurse asked if he needed to put some antibiotic directly on the tooth, he said no, I tried to say YES, PUT IT IN THERE! Now I am terrified of any type of dental work I think. I'm ready to have my teeth just rot out of my head if I can avoid ever going back to the dentist (not really but you know...).

 

The nurse held my hand and rubbed my arm. That was really good. I just wanted my Mom. I wanted my kids. I wanted to run away. I wanted someone to say "it's going to be OK. It's going to be over soon, I love you, I'm sorry"

 

What have I learned from all this though? Maybe I'll be more understanding when my kids are scared or acting unreasonable about something that may be out of fear. Maybe I'll realize that the words I say really do help even if they aren't acting like it.

 

Thanks for reading. I feel like I'll never be the same. But then again, I'm on a lot of hydrocodone.

 

Susan

 

I had a similar experience, except mine was with a nightmare. I dreamed I was on a high, very steep roof and felt like I was about to fall off. I just wanted someone there to catch me. I woke up just as I was about to fall and thought, this is what my daughter is feeling all the time. I need to be there to reassure her that she either won't fall of or that I will catch her if she does.

[parents4eyes]

x

Edited July 16, 2010 by parents4eyes

[Worried_Dad]

We're blessed on this Easter weekend - after 6 months of "Saving Sammy" augmentin XR dose, our son is doing better than he has in 3 years, since the PANDAS nightmare began for him. Now that he's so much more himself, the contrast to his "exacerbation" self is stark and shocking. Only now do I fully recognize the constant fear, anxiety, confusion, and despair that haunted his face for so many months. Only now can I come close to understanding why he kept telling us he "wanted to die."

 

I can't imagine living with my brain's fear center in a constant state of overdrive. These kids are so tormented, it's unimaginable. And when I remember those doctors who just wanted to drug him into a coma with psych meds - or worse, who implied that he just didn't try hard enough to control his emotions / behavior - it makes me sick with anger.

 

Someday (soon, I hope), the medical profession will appreciate how horrible this disorder is for the poor, innocent children who are afflicted with it. And - not to be vindictive - but the prominent naysayers deserve a "root canal from H3LL" to give them a little much-needed perspective!!!

Edited April 4, 2010 by Worried Dad

[simplygina]

What have I learned from all this though? Maybe I'll be more understanding when my kids are scared or acting unreasonable about something that may be out of fear. Maybe I'll realize that the words I say really do help even if they aren't acting like it.

 

I had an eye opening experience like that last summer. We went to see a reptile exhibition at the local library. The little room they were doing the presentation in had about 20 aquariums full of snakes and lizards. The snakes were all really active and moving. I wouldn't say that snakes is a big fear of mine, but watching them all move around with so many moms and kids packed into a smallish room was started to make me feel weird.

 

First they showed the boa constrictors and were walking around letting kids touch them. Fine. I've done that before. But then the presenter keeps telling the kids to sit still because snakes are instinctual and sudden movements may activate them. He is also telling us that he almost was squeezed to death by one of them several years ago but he was lucky and managed to get the snake off of him. I'm looking around the room at all these kids, from babies up to teens thinking, "wow, what if one of the snakes did go crazy?".

 

So then he goes into his rattlesnake part because we live where there are rattlesnakes. And I think to myself, "he would never walk around with a rattlesnake with all these kids" and then he reaches into the aquarium, bare handed, pulls out the rattler and tells us that it isn't devenomed. I'm looking around the room to see if anyone else thinks that might be a bit dangerous but all the moms are smiling and the library personnel seem fine. He's telling us what to do if we ever get bit, which is basically get to the nearest hospital ASAP and expect to be really sick for a long time, as he's walking around a room full of families with a live rattlesnake. My stomach started to feel horrible and I felt like I was in the Twilight Zone or something.

 

I told me kids I had to use the restroom and asked if they wanted to come. Neither did, they were enjoying the show. So I walked out and tried to take deep breaths and calm down so I could go back in, but I never could make myself return. I just sat outside the room and read magazines.

 

The interesting thing was, I knew I was over reacting, but I didn't feel like I could control it. That is when I understood how OCD and anxiety must make my son feel. Part of his brain knows he doesn't have to do the compulsion or that the obsession is ridiculous, but he can't help himself because his fight or flight response is so strong and he is so physically uncomfortable. Logic is total of no value at that point.

 

When it was over I 'fessed up to my boys that I had gotten freaked out and told my PANDAS son that I understood his feelings a little more and acknowledged how hard ERP must be for him and that he was doing a great job. It was such a strong reaction for me, i don't think I'll ever forget it.

[dcmom]

Simplygina- I would have probably had a similar reaction

 

Worried Dad- Thank you for sharing. I am SO happy that your son is doing well. I know it has been a long road for you guys, and it is so inspirational to hear how things are turning around. Can you share a little about how his ocd is doing? My girls are doing better, overall- but we are still battling with the ocd. It no longer grips them to the point where they don't function, but it is there. Some issues of ocd have receded to what I call "worries", other issues are a stronger. I am wondering what healing looks like- if you can elaborate...

 

My daughter just described to me yestarday, after a meltdown/acting out behavoir, how she felt. It is similar to the theory I have heard of a glass of water. She said that yestarday morning she was worrying about something a lot, then when her sister came over and wanted to play with something she had, it was too much. Frankly, 99% of the time when we have behavoir issues- there is ocd/worry underneath that is the cause. Life was so easy prior to pandas, because, really, my kids are so well behaved. They are just too young to maintain calm with the stress they feel.

 

Happy Easter, Happy Spring

[Worried_Dad]

Worried Dad- Thank you for sharing. I am SO happy that your son is doing well. I know it has been a long road for you guys, and it is so inspirational to hear how things are turning around. Can you share a little about how his ocd is doing? My girls are doing better, overall- but we are still battling with the ocd. It no longer grips them to the point where they don't function, but it is there. Some issues of ocd have receded to what I call "worries", other issues are a stronger. I am wondering what healing looks like- if you can elaborate...

 

Don't want to hijack the thread - and this is probably repetitive from previous posts - but here goes in a nutshell.

 

Before we started the high-dose XR, our son was completely crippled by OCD. Went through 3 cans of Lysol a day, spraying everything in sight including himself; would spray his arms until they dripped. Would not touch anything without disposable latex gloves. Basically lived in 2 rooms in our house (my home office and his bedroom). Would only eat meals in my office, and only while we read to him - if we stopped reading, he stopped chewing. Could not watch anyone prepare or even carry his food and would pinch his eyes shut. If he saw you touching the bowl / plate, or if you placed it wrong on the placemat, he would not eat. Had elaborate, hours-long bedtime ritual that included us reading to him for an hour or more, and still could not go to sleep half the time. Had to have sheets changed daily; if anything touched the bed, had to change them again. Would only sit on 2 chairs in our house (my office chair and his bedroom chair); stood everywhere else. Life was a series of rigid rituals, ruled by fear.

 

Now he never touches Lysol or latex gloves. He plays outside with the neighbor kids in the dirt. He laughs and jokes and doesn't show anxiety. He sits on the couch and cuddles with the new puppy. He makes his own food. He will go out to a restaurant for a family meal, or to a movie in the theater. He goes to bed by himself!!! He rolls in the grass and laughs about getting dirty.

 

For us, it really feels like a miracle. He is a completely different person, someone we have not seen in 3 years. I always fear a relapse... but this seems more real than any improvement we've seen before. We are so grateful, and we pray that every family on this forum experiences this joy and relief!!!