OMIGOSH! RIGHT IN FRONT OF MY FACE

[GraceUnderPressure]

There is screaming inside my brain right now!!! Y'all have been helping me figure out this whole PANDAS/PITAND thing for my 18yo ds with TS/OCD. Well, he had an exacerbation of his tics around the time we started swim lessons back in June. I attributed it to the pool chemicals. BUT his little 7yo brother came down with some kind of upper respiratory bug that turned into a bout of bronchitis. We have all been feeling off & on sick since then.

 

Tonight as I was putting that little brother to bed, he started up with telling me that he didn't think we should bring our youngest with us on vacation. When I started questioning him, he said he was afraid that his brother would fall off a mountain (we are driving to the mountains - assuming we actually succeed in this effort). I reassured him of how silly that was & pointed out that on our vacation a couple of years ago to see the Grand Canyon we never even came close to the edge & reassured him that we would be there to keep his brother & him safe. He still fussed a little, I reassured him a few more times, but then he finally fell asleep.

 

This is my child who is always sunshine & laughter - anxiety is as foreign to him as, well, anything could be. Yet this is the 3rd or 4th time SINCE HE GOT SICK that this kind of thing has happened - always at bedtime when his body, and therefore immune system, are worn out. I believe that also coincides with his recent increase in crying over every little thing that goes wrong. It never lasts long - like I said he is a very happy kid over all - it used to amaze me how fast he could go from tears back to laughter. It's just like it happens so much more often now.

 

It's been so mild, and I've been so absorbed with worry over his older brother, that it didn't even click till now. I was watching some of Dr. Schulman's PANDAS videos the other night & she talked about when parents tell her they're seeing something in their kid & go 'that's not my kid' and how she thinks PANDAS when she hears the parents talk about their child doing something that is not like them. So what do I do now? (Besides calm down & quit panicking)

[smartyjones]

Tonight as I was putting that little brother to bed, he started up with telling me that he didn't think we should bring our youngest with us on vacation. When I started questioning him, he said he was afraid that his brother would fall off a mountain (we are driving to the mountains - assuming we actually succeed in this effort). I reassured him of how silly that was & pointed out that on our vacation a couple of years ago to see the Grand Canyon we never even came close to the edge & reassured him that we would be there to keep his brother & him safe. He still fussed a little, I reassured him a few more times, but then he finally fell asleep.

 

grace - i'm sorry to hear and understand your fears. my older, non-pandas son has recently been afraid to go/be upstairs by himself. it's hard to decipher if you're just being paranoid - b/c i see so much in other kids that i believe is pandas-like behaviors -- and when you're being aware. i do think there is much evidence that this is very possibly a condition that has some sort of tie to run in families.

 

i would suggest taking him to one of the drs that you trust that has been treating your other child.

 

as far as the reassuring -- we've found the technique of repeating from the explosive child more helpful in dealing with tantrums and irrational fears than anything else. it can help you gain insight into what is the problem and why. also, it detaches you a bit so you are then involved with him but not invovled in the problem. you can use different inflections but just repeat what he has said. ex: he says he's afraid his brother will fall off the mountain; you say, "fall off the mountain?"; he says, "yes"; you say "really, fall off the mountain?". when appropriate, you can throw in a "why". sometimes, i repeat just a word or two of what he's said.

 

it keeps things from escalating. sometimes, the more you reassure, the more they come up with objections.

 

you'd have to see where it takes you, but try hard to not offer anything else but just his words back to him. for my son, it often makes him reevaluate and then he comes to the conclusion that what he is starting to get worked up about really doesn't make sense. other times, he's agreed back with me and then just drops it. other times, we've been able to find a solution.

 

you'd logically think this would be very annoying but my son doesn't even seem to notice that i'm just repeating his words. he seems to think i'm being helpful. i believe it's b/c he isn't really thinking appropriately during this time, so can't really put it together that it is annoying. my mom's friend starting doing this with her husband, who can be difficult, and was very pleased with it.

 

good luck.

[GraceUnderPressure]

Thanks for the tips on how to deal with it! The approach makes sense!

 

Unfortunately, we haven't got a PANDAS doctor yet. I made an appt. earlier this week with Dr. Rao in Dallas for my oldest son, but it's not till Sept. 24th. Should I try to get my 7yr old in at that appt, too? A month seems a horrible amount of time if he's fighting strep now.

 

This morning he has been coughing & says his throat is irritated. (We have all been fighting irritated throats as well as off & on nausea for months - I've been blaming allergies, but now I'm starting to think this stuff may have been staying with us since June)

 

Should I try to get an antibiotic from another doctor in the meantime? Or should I just try to treat it naturally with some olive leaf extract & oregano oil? Will treating it either with abx or natural supplements mess up any of the PANDAS tests we will be doing?

 

~Grace

[saidie10]

Hi Grace! Have you taken anyone in for strep cultures?

[GraceUnderPressure]

No, we don't have a regular family doctor.

[Stephanie2]

Olive Leaf Extract or Oil of Oregano would probably mess up a throat culture. Don't know about how they would affect titers. I would think long term use could bring down titers. I don't know how they would effect Cam Kinase test.

 

If nothing else, the herbs may tell you what you are dealing with. if you see an improvement then maybe you are onto something. you could do the same test with ibuprofen. Maybe give him some an hour before bed and see if he comes up with the same irrational fears.

[matis_mom]

Grace,

I am so sorry you are going through this. I had a similar experience with my 10yo daughter (PANDAS ds is 12). She started having all these fears and anxieties after the last round of strep. And I got really worried. I asked dr. L and she said it's normal to a certain extent and it may just go away, but to keep an eye. Well, it's been a few months and she is better, definitely has good days/bad days, and always worse at night. I did the standard bloowork and nothing showed up. So I'm not going to stress about it until I see something more definite. Even if she does have it, I don't think I could get her treated simply on account of fears/mild anxiety. I have not seen any OCD or tics.

 

So just keep an eye out and try not to stress out.

 

Also, I would encourage you to try to find a good family doctor. We are lucky to live close to Dr. Latimer (well, 1 hour away), but we can't run to her everytime someone has a sore throat. Our pediatrician does not know much about PANDAS but she has been helpful in running bloodwork, checking for strep, etc. Especially if they are having sore throats, you need to get them (and yourself) checked, even if you have to go to CVS to do it.

 

Keep us posted and try not to stress out too much! Enjoy your vacation

[thereishope]

You don't have to be established at an office for a visit. As for the adults, if you have to just pick a dr from your insurance (if you have insurance)and when you call say you need an appt for a strep test and you think you have strep. You can explain it in more detail when you see the dr in person. Or look into grocery stores,Walgreens, etc thathave "Little Clinic" or "Minute Clinic". You can get strep tests there.

 

As for other kids, are they established with a pediatrician? If not, again, you don't have to have any files transfered to become a new patient at an office and get a strep test.

 

No, we don't have a regular family doctor.

Edited August 28, 2010 by Vickie