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UGH!!!!!!!! Ds has been on a downturn since last Tues when he had a rage/terror attack in car following a LONG visit with the neurologist.. On Friday, his therapist asked me - "Is he coming down with something?". Yesterday he starts feeling sick - vague complaints of headache, stomach ache, feeling lightheaded, dizzy and weak. Fell asleep at 7pm Today - he calls home from school with similar complaints (minus the stomach). No fever, no cough, no stuffy nose, no sore throat. Again - he sleeps 2 1/2 hours. We call the psych and ask if these symptoms might be due to starting Luvox 2 weeks ago. He suggests we take him off it and see if he is better - maybe revisit it later. So then we endure 2 giant meltdowns...He is freaked out because he has a math test tomorrow, and was supposed to meet with his math teacher after school to review, but couldn't because of coming home sick. So he wants to try and study, but gets confused, and I can't help (yes - I can no longer do 8th grade algebra..) and he freaks and starts screaming and thrashing and banging his head and trying to break things. And then he screams - "This only happens to me when I get sick!! Give me something! Do something!" I swear now I feel sick to my own stomach. No matter how many times I have watched this happen to him, it still tortures me to stand by helpless. And I'm just sitting here waiting...waiting for the blood work results Dr T prescribed to come in, waiting for the PET scan on Friday, waiting for his Omnicef prescription to run out on Saturday, waiting to see if Dr T will respond to my email, and waiting for the next crisis. I seriously do not understand why he is sick as often as he is healthy!!!! It's like he needs to become the boy in the plastic bubble! I am so TIRED of this and what it is doing to him and our family and our life. I want a vacation from PANDAS,preferably with a beach and a tall margarita... I just want him well...

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OMG! I am SO sorry! We've been there, done that, so I know how you're feeling, really I do!

 

Maybe you can give BOTH yourselves a break . . . to heck with homework, tests or even school. How will it hurt to take a couple of days of dialing down the stress while you get the test results and hopefully a better treatment answer?

 

Hang in there!

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I am so sorry--times like this are pain and agony for all--child, parents, and siblings.

Talk about stress...

 

I'd agree that school, when a child is sick, needs to take a back-seat. If he is suffering, it is real and for right now, the key thing is getting him well--as you pursue his health, stress only takes away from the healing need for peace and rest.

 

When our d was going through the *&% of last year her immune system was so obviously weakened as she got sick, time and again...3 times in the fall. Each time it got worse (OCD/mild ticcing.) Let the school issues go--all he can do is all he can do for right now. Our d went from A's to a few F's and back to A's...over the course of a year. I sure hope Dr T can help you--don't wait for an email, CALL and get that prescription refill. Is it helping?

 

We have had good results with Augmentin, Saving S.-dose strength for our 65 pound child

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I'm so sorry you're going through this. It's the worst when they are begging for help and we can't help them yet. I remember the sick feeling I had when we were in this waiting mode - we listened to my son beg for us to help him for several months while we were waiting for someone to help us! It's awful. Hang in there - you're on the right path.

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School is such a catch 22 for him. When he stays home, all he does is stress and freak out about what he's missing and how is he ever going to make it all up, and the stress is doubled when he returns. But when he goes and he's not well, he also falls apart. And with the school phobia issues he's had in the past, it makes it even harder. When he was healthier last year, he actually went through a "who cares" stage about school, and we actually sort of rejoiced that he could blow off homework and not care. But the part that set him off tonight is that he does care - too much...

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The antibiotic he's been on for the past 2 months is Omnicef, from our ENT, and apparently it is not working...Dr T was going to try Biaxin and told me to call him about this last week, but I have not heard back from him. I plan to try and call again in the morning.

 

 

 

I am so sorry--times like this are pain and agony for all--child, parents, and siblings.

Talk about stress...

 

I'd agree that school, when a child is sick, needs to take a back-seat. If he is suffering, it is real and for right now, the key thing is getting him well--as you pursue his health, stress only takes away from the healing need for peace and rest.

 

When our d was going through the *&% of last year her immune system was so obviously weakened as she got sick, time and again...3 times in the fall. Each time it got worse (OCD/mild ticcing.) Let the school issues go--all he can do is all he can do for right now. Our d went from A's to a few F's and back to A's...over the course of a year. I sure hope Dr T can help you--don't wait for an email, CALL and get that prescription refill. Is it helping?

 

We have had good results with Augmentin, Saving S.-dose strength for our 65 pound child

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Does your son have a 504 plan at school for accommodations? Something like a plan to pick up work when he is out... guaranteed permission to take tests later or to bring him in after school to take tests he missed during the day, extra tutoring during study hall for work he missed. If he knows that being out sick will not affect his grade, it may help to reduce the anxiety a bit.

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I am so sorry--that is so tough, especially at the upper grades--

We had one sympathetic teacher on-board last year and that seemed to help (though others were not.)

I hope it passes quickly with a solid turn-around that lasts--

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He actually has an IEP that gives him a huge number of accomodations. I actually emailed the math teacher letting him know what happened and asking that he not take the test until ds meets with him for one on one review. Between managing due date extensions, asking for homework reductions, and then actually helping him do his work (there are times I have to scribe for him to reduce anxiety and he can no longer read novels, so I am the "audio tape"), I might as well be going to school myself. Unfortunately, knowing he can make it up later doesn't help much, because he is very easily overwhelmed and ends up with makeup work on top of regular work and just crumbles..

 

Does your son have a 504 plan at school for accommodations? Something like a plan to pick up work when he is out... guaranteed permission to take tests later or to bring him in after school to take tests he missed during the day, extra tutoring during study hall for work he missed. If he knows that being out sick will not affect his grade, it may help to reduce the anxiety a bit.
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You and I actually have much in common. I am battling many of the same issues with my 7th grade son - and he is sick now and just went back to school today - complete with homework meltdowns and all tonight. His IEP is good, but only as good as the teachers that follow it. I know what you mean about make ups not being the answer. I tried to send you a message but your inbox is full. If you can make room - I'll send the draft.

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So sorry that he has to go through this >Its so not fair.I just switched Danny to Biaxin from minocycline.He was having raging it seems to be calming him down.I think our kids are so sensitive to certain meds,I tried luvix I dont remember why we stopped it but Im sure it wasnt a good choice when we tried it because if it was we would still be using it.I havent found anything great.Danny does take buspar 10 mg I think its an ok antianxiety med but sometimes I think it does nothing.Havent seen any horrible side effects.

 

melanie

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You and I actually have much in common. I am battling many of the same issues with my 7th grade son - and he is sick now and just went back to school today - complete with homework meltdowns and all tonight. His IEP is good, but only as good as the teachers that follow it. I know what you mean about make ups not being the answer. I tried to send you a message but your inbox is full. If you can make room - I'll send the draft.

 

 

I cleared my inbox, so hoping you can re-send that PM. He is home again this morning - says he can't go to school. I think I need my IEP to read "no make up work required when absent for medical reasons" but that will never happen...

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WOM,

 

As a SLP, I serve on many student's IEP teams and his workload should and can absolutely be adjusted. Perhaps you should consider obtaining an advocate if the school is not accommodating your son. Let them do the lion's share of the fighting with the school district, you need to save your energy fighting for his health.

 

Your District could also send someone out to your home to work with him, if you think that would do more help than harm. Most of my experience is at the elem. level, but I do work 1.5 days at our middle school. If you look within your Procedural Safeguards Notice, which they are required to give you at each IEP mtg, there are agencies listed within that can help you advocate for your son's education if you feel the school district is not working with you in your son's best interest.

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It's not that the school system is doing nothing for our son, they are, some more than others, others more than nothing and some just nothing. Its just become WornOutMoms second job of steering the boat continuously, there is no one at the school that has stepped up to lead the way utilizing his IEP.

 

Very frustrating.

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