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I want to give up


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I don't know how much more I can take. We had IVIG #3 last Wed. and Thurs. My DS is in a FULL BLOWN exacerbation. He has been pacing back and forth in his room for about 15 min. trying to get dressed, opening and closing his dresser drawer, crying out at times. This poor kid is doing compulsions every second, all day. I am going to have to put an add in the paper for some help or something. It's too hard to do by myself. I know he is responding to my bad cold, possibly sinus infection. I had the green mucus and put myself on left over abx.

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Joan-

 

I have been trying to cut my forum responding in an effort to normalize life a bit. But, I just glanced and saw your post and had to write.

 

I have no magic advice for you, other than hang on.

 

If your son is responding to your illness- I think that will be short lived (that has been our experience).

 

It is so hard when you are in the thick of it- it is just survival. You can do it. Getting help is a great idea. Even if you can get relief of other work, to give you time to clear your head, and continue to help your son. Maybe (if you don't do these things) you could hire a cleaning company (even just for a month), try to get grocery delivery, maybe some local family/friends could make a casserole for dinner for you and/or help with your other kids? I have a really hard time asking for help- but anything that could lighten your load will help the whole family.

 

This will pass, he will get better. In the meantime- does he do ERP therapy? It might give him a sense of control and help- even to work on the easiest thing with very tiny steps, while you are waiting for his medical condition to improve.

 

Have you tried motrin (didn't make a dent for us during full blown episodes)? Steroids?

 

We found, during full blown episode- that lots of movie watching (thank goodness netflix online), and reading to them, saved all of us.

 

You are not alone- we have all been there- it is unreal- but you do get through it, and life will be better again.

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Hang on. Easier said then done huh? I believe your son is older, Right? My dd is now 18 and last spring is when she seemed to have her( Hopefully last) meltdown in her room. So frightening to handle alone but I must admit at those times I did not want my husband to intervene,it just complicated things and he does not have the patience. The waiting is the hardest part but there is healing. So again, just hang on..

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Joan...we have not done any big guns to date...

And in responding i have no personal experience...but if i need it in the future, i hope others will respond in time of crisis...as it is hard to see things when you are in the thick of it....

i believe you said things were ok for awhile...they will be again!!!!

and most here, who have had ivig, have a worsening before betterment.....

and you are ill....

you have alot going on!!!!

i am personally looking at getting help here...maybe a college student to help with homework.and a just having an extra set of hands, as i have 3 boys, 10 and younger...i feel i am neglecting them and my home on so many levels.....

even though they are doing well in school....i feel they could do better if they had a little one on one time...

and though i don't feel like spending more $$$ this will be short lived and we can stop when and if we have to..

YOu can do it....i would love to give you and your boy a real hug...but i'll give you a cyber one for now (( :wub: ))

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We'll help you hang on/get through as best we can. So sorry its tough. Let go and give up for a day or 2 if you need to, but we both know that giving up is only temporary- then you'll come back fighting again. Get some rest, be gentle with yourself, get your strength back. Sending prayers for strength!

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Joan,

 

I know this doesn't sound nice, but you have to preserve yourself some so that you can continue to fight for him. It sounds like the noises are driving you batty! I remember when dd10 was a baby, the crying was so intense and relentless I thought I was going to lose my mind! I would look forward to my shower so I wouldn't have to hear it for a little while and then I thought I had really flipped my lid because I thought I could hear a crying sound coming out of the running water!!! I had to play music with headphones on to get away from it for a little while and give myself a break, maybe you could try that? I know that doesn't mean it isn't happening, but you need some time when it isn't "in your face" or ears! Still to this day, when dd10 and dd7 are arguing when I'm driving, I turn the music up so I can't hear them and they can't really argue anymore cause they can't hear each other.

 

I know you feel so badly for him; his pain is your pain doubled. But both of you suffering continuously isn't going to make him suffer less. You must preserve your energy and mental focus to fight. Like when you are on a plane and they tell you to put your own oxygen mask on before you help your children; you are of no use to anybody if you pass out.

 

Put your oxygen mask on first, Joan. Get some help, get some time away. I really believe it is the best thing you can do for your son right now.

 

Jill

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I'm so sorry! Just when you really think you've hit rock bottom and there's no where else to turn, you'll muster up strength and maybe some hidden adrenaline to carry on. That specific example you gave reminds me of my son and trying to get ready for the day. That was such a stressful time....so many things surfaced with what is suppose to be such a simple task.

 

I hope you, and your son, feel better soon.

 

I don't know how much more I can take. We had IVIG #3 last Wed. and Thurs. My DS is in a FULL BLOWN exacerbation. He has been pacing back and forth in his room for about 15 min. trying to get dressed, opening and closing his dresser drawer, crying out at times. This poor kid is doing compulsions every second, all day. I am going to have to put an add in the paper for some help or something. It's too hard to do by myself. I know he is responding to my bad cold, possibly sinus infection. I had the green mucus and put myself on left over abx.

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I'm so sorry. We went thru a bad time post-IVIG and it felt like it would never end. Have you contacted your doctor and discussed options? Prednisone? Mortin? I'm sorry if I should know this already, but have you tested for infections (myco p, lyme thru a specialty lab)? (now would not be the time, but something to file away for 2 months from now if this 3rd treatment doesn't get you where you thought you'd be).

 

One idea is to try activated charcoal - if this were a herx reaction to lyme, then taking charcoal at least 2 hrs away from abx might help alleviate some symptoms. You might also look for some alpha-lipoic acid, another detox supplement (best taken in the morning on an empty stomach, but does not have to be taken away from abx).

 

I know you are pulling your hair out, not sure how you're going to make it thru this. Jill is right - even if it requires hiring a sitter while you go for an hour long drive might help. Hold on. It may take time, but it will get better with time. You're in my thoughts.

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Thanks so much for your compassion and support. Your posts brought tears to my eyes, (good tears!). Dr. B. gave us a script for Prednisone. He started it today to try to get the inflammation down in his nostril so it will drain. He is still getting a bloody nose daily, sometimes twice a day. I think the prednisone makes his OCD and possibly bloody nose even worse. I'm not sure if he will be able to take it. I am going to be withdrawing him from school this week and repeat his sophomore year next year. He has been out on a medical leave for about 10 weeks now and I don't see things improving enough in the next few weeks to return. I'm worried how we are going to fill the day. He is so active and athletic, but I don't want to take him into a gym or school to play basketball or work out--too many germs.

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Joan, I don't know if this will help, but for me, the mid-teens were the absolute worst. I don't know how either I or my parents made it through, but it did end, even without the kind of recognition and treatment that we have these days. Looking back, I liken my childhood and adolescence to pregnancy and then childbirth, respectively. I remember right before my first son was born, I had all of these feelings about just wanting to NOT give birth. Not that I didn't want my son, just that I didn't want to go through the birth process (we had reason to believe that he might not survive it). My mind was constantly, constantly spinning trying to find a way out of going through it, but being born is an inevitable part of the progression of a person's development, and no matter what I did or how awful it could end up being, this baby had to come out of me...so I just hung in there, prayed a lot, went to another place in my mind, and eventually it was over, and luckily everything turned out fine in the end.

 

I think of my own mid-teens the same way. My childhood was kind of a lumpy, awkward, and uncomfortable process PANDAS-wise, but not without its great pleasures, like pregnancy. Then my adolescence came and it was the worst kind of unbearable PANDAS "labor" - full of relentless pain and blood and sweat and tears and a constant desire for it to be over - but it was of course an inevitable part of the progression of my development, the "birth" of my adult self, no way around it except through it. But then, when the "labor" was over, I became an adult, and even the discomforts of "pregnancy" eventually went away (and I was left with just periodic mild "cramps"...to stretch the analogy too far!)

 

This is probably not of any help in getting through the day, and may not even be an analogy that you or anyone else can relate to, but whenever I see these stories of struggling teenagers, I still think "that's labor" in PANDAS, the painful process of birthing an ultimately healthier adult. I never feel that these kids are actually getting progressively sicker - I just think that they're going through a rough transition to a better place, and I feel confident that with time, that stage will pass and things will be easier than they have ever been before.

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That was very well said...i understand what you are saying..and i hope that for all our kids..

 

Joan..if you are going to pull your boy out of school...look into homeschooling so he doesn't loose that time...like you said...how are you going to fill the hours anyway....and if you don't keep him academically challenged you will loose what you were taught...ever see...smarter than a 5th grader...so many on there cant keep up with the 5thgraders....

so maybe you can keep him on track....just a thought

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Oh, Joan, I am so sorry. I know how hard you are fighting for him and with him, and my heart goes out to you.

 

I want to give you advice, because we all just want him better, but I worry today that anything I suggest, you will have already done. So mostly, I just send you a heart message, that one way or another you will find hope and joy for him again.

 

I can't remember if you have gone the Lyme route as well, but I am a firm believer that you should try all the known triggers, and see what you can find, especially when so very severe. I think TONS of things can cause these issues in the right kid.

 

If you are looking for help anyway, maybe finding someone that can work on ERP with him at home might be helpful. You could email Rogers or McLean & ask if they have any references. I don't think that ERP will "cure" him, but we found that in the times that 100% of our dd's day was taken up by compulsions, even a little fighting back made her feel less hopeless. Fighting however, can be very hard, so having an expert on hand to support may be critical. We were fortunate to find someone that was willing to train with me to help her through her days, but a real expert would have been better. There is no way I could have done that in our home all alone. It was too constant, no one can take seeing their child like that 24/7. Personally, I would even consider an in-patient intensive program, but would want to know that they were on board with the medical side of things as well. Not sure if that is realistic, but maybe worth some calls. I can't remember his age - is he 16 yet?

 

I will respect your choice either way, as the decision to let them go to "germy places" is always so hard, but I lean in the direction of letting them do anything that brings them joy. If he is this bad now, and if playing basketball will bring him moments of joy, then I vote for the germ experience. I know that will be a controversial statement, but you are sick now, and he is exposed - so germs are everywhere - I assume he is on abx to keep it in check, and would not do anything without that. But these poor children lose so very much, and deserve every second of joy we can give them. Exercise, if reasonable, can also help anxiety levels. If you reallly can't have him at the gym, then maybe find a solo option for him, or a smaller gym. I also be I agree with the home school - or even if there is a local vocational school or tutor that can help to fill the days. Maybe you can even get the school system to pay.

 

We are all rooting for you and for him. I just know you can find the right answers for him, and pray it will be soon.

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The homeschooling is a great idea. For a different reason (not PANDAS), our school district supplied us, at no cost, with a self-paced, on-line curriculum with a bunch of different courses for my second grader. It's a great program. What I like about it, beyond the fact that my son loves it (it includes lots of "fun" learning stuff), is that the program does 95% of the teaching (it would probably be more for an older child) and keeps track of what he's mastered and what he needs more work on, so it takes most of the burden off of me. And there are so many interesting courses on it that if it's not a good day for math, he can do some lessons in languages, science, history, spelling, or whatnot. If your son likes academics (even some) but does not want the pressure of keeping up in a brick-and-mortar classroom, something like that might be a good idea.

 

Re exercise, how about running? That's great exercise for burning off steam with little germ exposure, and will help keep him in great shape for just about any sport he may want to get back into. It's also a sport where it's easy to measure progress so it helps with a sense of accomplishment. This may sound cheesy, but I also get a lot of "mileage" out of running with an athletic pup - it makes the dog so happy, it's hard not to feel good about the whole thing.

 

Re. prednisone, in my experience the first 2-3 days of it can be hellish, but around day 3 I get a breakthrough. I've only done a three courses of it, ever, but you may want to give it a couple of days before you give up on it.

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The homeschooling is a great idea. For a different reason (not PANDAS), our school district supplied us, at no cost, with a self-paced, on-line curriculum with a bunch of different courses for my second grader. It's a great program. What I like about it, beyond the fact that my son loves it (it includes lots of "fun" learning stuff), is that the program does 95% of the teaching (it would probably be more for an older child) and keeps track of what he's mastered and what he needs more work on, so it takes most of the burden off of me. And there are so many interesting courses on it that if it's not a good day for math, he can do some lessons in languages, science, history, spelling, or whatnot. If your son likes academics (even some) but does not want the pressure of keeping up in a brick-and-mortar classroom, something like that might be a good idea.

 

 

now that you said that...our school district offers it too...and good idea about getting someone else in to prompt this...

in todays society..we spend too much time with our kids...if they go out and play...you have to go too..theparents don't get the break they used too.....it is not good to be with them constantly...so maybe get a college kid, who is looking at teaching as a profession to tutor mid-day...

i liked mid-day jobs as a college student...i could party at night....

plus if its a girl tutor...i believe he will have more motivation!!!

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