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OH..I Get it...I Get It!!!

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Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent.

 

If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard.

Iboll...I can't speak for exactly what fixit means, but I thought she meant that she understands how you feel. This is a place where you can give voice to your difficulties without being judged, so don't be afraid to post.

 

When you said this:

My son is so out of control that my normally incredibly patient husband said last night, "If the next set of antibiotics doesn't work, I think we should drug him so he's a zombie or give him away." I know that sounds horrific, but that's where we're at right now. It would never happen of course, but it just goes to show how normally very sane people can just be "tired".
I flashed back to probably the worst times in our lives as my 7yo 40lb daughter was so outrageously out of control us big folks seriously considered that institutionalization was imminent. Its so heartbreaking- I can't think about it, even now w/o getting teary. And that's when we decided to use psych meds- we were stuck between a rock and a hard place (did not have an inkling about PANDAS yet) and chose the hard place, because maybe we could make it a little softer. And your right it sounds horrific...it IS horrific! I'm so sorry you're in that place right now. I wish I could tell you that we found a psych med that helped- Lord, we tried so many...a few have helped a little, but I feel guilty using the valium, feel guiltier knowing it could help her and not using it.

Sorry I didn't answer you sooner to sympathize- it still hurts to think about it, so I try not to.

 

Hello again,

First off, I'm sorry to FixIt!. You know how it is...you feel so low that you feel like the world is out to get you. Anyway, I do know what you mean. Although we had never considered institutionalization, there are times where I think that I won't be able to handle my son when he gets much heavier. He can become somewhat violent at times...when he's bigger, will I be able to protect myself.

 

We have our son on Trazadone which has helped him sleep, but hasn't helped his behaviors at all. And, he's not sleeping now, so I'm guessing it's not doing anything. ARGHHHHHH!!!!!! What to do?

 

As I was typing this, my son came and screamed in my face, then grabbed it and pushed his face into mine. I thought he was going to bite me. Thankfully he didn't. Phew...dodged another bullet.

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Thanks. Well, we really enjoy living overseas, so it's not too terrible living half a world away. But, at times like these it's pretty stressful. I think I can wait til Saturday. I just wish I didn't have to, especially because I know that the antibiotics can help him. I've tried putting liquid meds in sprite, but he won't drink it because it changes the texture. But I haven't thought about trying it in a milkshake. Good idea.

 

As far as respite...at this point there's no one we can have watch him because his behaviors are so out of control. but once we get them under control, then he's very easy to watch. So we just have to hold out for a few more days...

 

Thanks so much for your concern! We'll be okay.

 

 

 

We are the ones living in China, so no other doctor here really understands what we're doing. The doctor we're working with is helping us because we are also working long distance with Dr. T.

 

Wow! I have so much respect for you. I am frequently feeling all alone and so far from my PANDAS doc (7 hours away). I cannot imagine half a world away.

 

It sounds like you have been down this path many times. You have less than a week left until the doc gets back on Saturday. You know you can hold it together and keep your son safe until that time... and keeping him safe is the main goal until the doc gets back.

 

It sounds like your son will not take any pills for meds. Do you ever use liquid versions (maybe mixed in a milkshake or something like that)? Even just childrens motrin until the doc gets back. Is there a pharmacy that can give you liquid augmentin - the baby version? I am sure you have thought of all this and if you do not want to reply I understand. I am just curious as to what you have tried and how you handle this usually.

 

Is there anyone that you can call in for some respite? Someone from the school you started? Maybe another parent or a teacher? It would be good if you could get a break for a few hours of sleep.

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Hi lboll,

 

Ever tried to go to any hospital for local ( such as RuiJin hospital in Shanghai)? Maybe you can try to talk to doctor there and show them the Parkway doctor's prescription also show them Dr. T 's email to get Ceftriaxone injection for a couple of days? Maybe very possible to find such doctor who is willing to help patient like you in Shanghai...

Soooooooo hard to wait for your doctor's back.

 

 

Thanks. Well, we really enjoy living overseas, so it's not too terrible living half a world away. But, at times like these it's pretty stressful. I think I can wait til Saturday. I just wish I didn't have to, especially because I know that the antibiotics can help him. I've tried putting liquid meds in sprite, but he won't drink it because it changes the texture. But I haven't thought about trying it in a milkshake. Good idea..

 

As far as respite...at this point there's no one we can have watch him because his behaviors are so out of control. but once we get them under control, then he's very easy to watch. So we just have to hold out for a few more days...

 

Thanks so much for your concern! We'll be okay.

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I'm glad i rechecked the thread...i was trying to step back a little

I AM so SORRY if I made you feel bad...truly.....

I understand wanting to completely run away...

this moring my husband was calling me an Ostrich......i litterally try to hide sometimes knowingly and sometimes uncosciously

SO SORRY!!!!!

NO one can walk in anyone's shoes and get the full extent of everyone's experience

Typeing can definietly be misconstrude...i was trying to be supportive...came out wrong...i should have typed more on that reply

 

Again My appologies!!!!!!!! I feel terrible....

Edited by Fixit
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I'm glad i rechecked the thread...i was trying to step back a little

I AM so SORRY if I made you feel bad...truly.....

I understand wanting to completely run away...

this moring my husband was calling me an Ostrich......i litterally try to hide sometimes knowingly and sometimes uncosciously

SO SORRY!!!!!

NO one can walk in anyone's shoes and get the full extent of everyone's experience

Typeing can definietly be misconstrude...i was trying to be supportive...came out wrong...i should have typed more on that reply

 

Again My appologies!!!!!!!! I feel terrible....

 

Hi Fixit,

Please don't feel badly. Like I said above, when you're feeling low, you feel like the world is out to get you. I should have assumed best intentions rather than the worst. So, I'm the one who needs to apologize.

Thank you for your response, and maybe we'll meet in an ostrich hole someday. ( :

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