Need help with DD's school work

[britneymag]

My dd is on augmentin 600mg x2 daily. She slowed down on her tics for a couple of weeks but then she was exposed to strep and we had a pretty traumatic week with our puppy that upset her. Well, now hers tics are back full force and her OCD is getting bad again.

 

It is showing in her school work. She is failing all of her writing papers and her handwriting is horrible. She can't figure out simple math problems. I know classic PANDAS symptoms. DH is making her redo all of her papers. This again is upsetting her and making the Tics worse. DH knows that she has PANDAS but also thinks that she should do her work right or have to redo it all because she is very smart. He doesn't seem to realize that she is overloaded right now. Her teachers don't know what PANDAS is and think that she is just rushing through and that she can do much better. She is choosing to accept the failing grade rather than redo the paper.

 

I asked her why she was rushing and she said that if she did that then she wouldn't have to worry about it anymore. She is always worried. Making her do it again is only making her worry and become more agitated. It is such a vicious cycle. I am at a loss as to what to do about her school work. I don't want her to fail but I also don't want her to get so worked up when she really can't help it. She is coming home at 3 and doing homework till 8 with only a break for dinner. This and she is only 9 years old. What should I say to her teachers to explain to them what she is going through. Should I pull her out? Put her on homebound? When I had rheumatic fever I was put on homebound and my brain wasn't even the culprit. I can't imagine what she is going through. Has anyone dealt with school work issues? All I have seen on here is how kids don't want to or can't go to school. This isn't her problem. She just can't do the work after she is there.

 

Melanie

[peglem]

Personally, i'd give DH a valium and do homebound!

[tantrums]

We've only just started first grade and having similar problems. I have noticed that if DS makes an error and I point it out, it all goes downhill FAST! I sent links on PANDAS to his teacher last week and she seems very understanding. I think I'm lucky there. I have figured out that I have to pick my battles and learn where the limits are. If he gets to the point where he has shut down - he isn't going to learn anyway, so I stop pushing. We will try to go back to it later or even just a short distraction and back to it. But one paper that should take any child 10 minutes can easily take us an hour - a very DIFFICULT hour at that. When he has H1N1 and missed nearly a week of school, I had to just give up and let him NOT finish the work at all. I'll know for the future (we didn't know about PANDAS at the time) to always get his homework when he misses school so it doesn't build up).

 

So what I do is - figure out what is most important first. Try to set the tone so it's as minimally stressful as possible. Make sure they are not hungry or tired and do it early enough so they don't GET tired. If they have to stop - they have to stop! It's not worth a total meltdown because once that starts, it's not going to happen anyway.

[faith]

melanie,

I think I'm having the same problems, we are on second month of abx, and my sons tics are still there, and I am noticing ocd of repetitive erasing is kicking up, and altho we've let him write in pen to sort of stop the urge to erase, he goes over the letters alot and is now noticing that he can't help doing it and complaining and moaning about it. as I type this, he is still involved in his homework since coming home from school. at one point he couldn't deal with the ocd and was getting stressed out, so I wrote the answers for him, and I'll have to write the teacher to explain this. We also had a meltdown because he is saying he's having trouble with his division, and when he's frustrated, I'm frustrated, and he goes on and on until its one big meltdown. then he gave me the whole glass is half empty shpiel, I don't know what's going on, and I don't know how to handle this either. I don't talk PANDAS with the school. so far we have a 504 plan and he has some accomodations to deal with the tics and ocd, we've had this for the past three years. he's in fifth grade, so I'm not messing with trying to explain PANDAS, so far I stick with what his problem is, tics/ocd/anxiety, that's his diagnosis, I'm only exploring this treatment for PANDAS, but I truly don't know where it will end. he just said to me, "mom, don't say this in front of daddy, but my tics are bothering me", (he only learned the word tics recently). and he is questioning why he has to go over his letters, as far as he's concerned, everything is wrong with him. Then he'll come to me later and say he's sorry and hug me. He just a few minutes ago asked me to explain the thing (IVIG) that would make his tics go away...... ....truly I don't know if it will, and I don't know how I feel about these treatments. On some level, he seems very functionable, if that's a word, so I don't know if I should leave well enough alone, and on the other, he does have these issues, so what to do?

 

Do you have the 504? if not, I think you should persue it before things get harder in school.

 

Tantrums, do you have the 504 as well? it certainly helps matters, but we still have to deal with them at home. I wish I could give some better advice, but that's all I have.

 

Faith...

[tantrums]

I don't have the 504 yet. The teacher and I have just now been discussing getting him assessed and I just looked up the contact info for the school nurse. He went to her office once and got sent home. Since then, he asks quite often to go to the nurses office. The teacher manages to keep him from going, but I am sensing a growing problem there. At this point, he is okay with school. He actually likes going there and I'm trying my hardest to keep it that way.

[britneymag]

Faith, I do not have the 504 yet. I will be looking into it though. I haven't broached the subject of IvIg yet. I am still waiting to see if we can find the right antibiotic. When we finally get in to see the Neuro in February I hope to get more answers. The Dr. we are seeing right now is only going off of what I tell him and I don't know much yet:)

 

Peglem, DH really is trying to understand. I am just the one doing the research and he is the one trying to help with school work. He spent hours both yesterday and today talking to all of her teachers trying to find out the best course of action. I am getting him to understand now that she is not a "normal" child and will not learn that way no matter how smart she is. Not until we get her Pandas under control anyway. I know I need to set up a meeting at school to let everyone know about PANDAS I just want to be armed with the right ammunition to help them understand what it is.

 

Melanie

[peglem]

Faith, I do not have the 504 yet. I will be looking into it though. I haven't broached the subject of IvIg yet. I am still waiting to see if we can find the right antibiotic. When we finally get in to see the Neuro in February I hope to get more answers. The Dr. we are seeing right now is only going off of what I tell him and I don't know much yet:)

 

Peglem, DH really is trying to understand. I am just the one doing the research and he is the one trying to help with school work. He spent hours both yesterday and today talking to all of her teachers trying to find out the best course of action. I am getting him to understand now that she is not a "normal" child and will not learn that way no matter how smart she is. Not until we get her Pandas under control anyway. I know I need to set up a meeting at school to let everyone know about PANDAS I just want to be armed with the right ammunition to help them understand what it is.

 

Melanie

I'm sorry I said that Melanie! My hub is finally coming around, but there were so many times in the past that I would explain, and explain- he would seem like he understood, even agree, only to turn around and do something that made things worse! I'm the one here doing all the research, too. I'm glad your hub is trying to understand- its hard to see your very intelligent child struggle like that and you KNOW she has done better work! My apologies!

[britneymag]

No apology needed. I laughed hard when I read that. I should be the one apologizing to him even though he doesn't know that I worded it that way about him. It was just me taking out my frustrations because we had just "spoken very loudly" about it;)

 

Melanie

[peglem]

No apology needed. I laughed hard when I read that. I should be the one apologizing to him even though he doesn't know that I worded it that way about him. It was just me taking out my frustrations because we had just "spoken very loudly" about it;)

 

Melanie

Glad it made you laugh, i had meant (sorta) for it to be funny!

[tantrums]

Oh one thing we also find helpful is that my DH and I trade off when WE start to get frustrated. Or rather, BEFORE we start to get frustrated. Of course, if we manage to keep our calm it does help DS a bit more. It has helped me SO much just to know what is going on with him for one thing and it would SURE help if MY DH would understand as well that DS isn't just being difficult. I certainly noticed though, the second my own stress level started to rise, so did DS' and then it was all over.

[MomWithOCDSon]

Oh one thing we also find helpful is that my DH and I trade off when WE start to get frustrated. Or rather, BEFORE we start to get frustrated. Of course, if we manage to keep our calm it does help DS a bit more. It has helped me SO much just to know what is going on with him for one thing and it would SURE help if MY DH would understand as well that DS isn't just being difficult. I certainly noticed though, the second my own stress level started to rise, so did DS' and then it was all over.

 

Yes, we find that trading off works well in our family, also. I tend to have the faster temper, my husband tends to want to avoid, just like DS, so we're almost forced to all work together in order to get through it when the exacerbation is at it's height.

 

My DS had a 504 in place from 3rd grade through 6th, and it really did help. It's not nearly as cumbersome in terms of documentation and testing as an IEP, but it granted him the accommodations he needed so that, when he was going through a hard time, he could make use of extra time for assignments or homework, untimed testing, additional breaks during the school day, etc.

 

When we got to Junior High, though, the picture changed somewhat. Not only did 7th grade begin with a huge exacerbation period, but the teachers don't always communicate as effectively with the parents, and because DS's diagnosis is not well understood, some teachers and staff were of the hidden opinion (only just barely) that his parents were just making excuses for him, and that he was either a) lazy, unfocused or c) both. So we stepped up to an IEP this year. Once again, it's been really helpful. Now his math teacher eliminates about 1/2 the problems on a given assignment or test because she understands it can take him twice as long to do half as many problems, not because he doesn't understand or is unwilling, but because his processing requires so much more of him. And we're able to eliminate some of the "non-essential" components of assignments or get alternative ones so that his small motor skills (as in drawing, coloring, even writing) don't get over-taxed; he's allowed to type/keyboard pretty much all assignments other than math, and that has helped tremendously.

 

Plus, with the IEP, DS was assigned a "case worker," which in our case is a wonderful, patient, open, humor-filled special education teacher. He's been a godsend for DS, helping him through the rough spots at school with grace and humor, and he's a great intermediary for us with the academic teachers when we want to advocate for an adjustment of an assignment or a longer completion timeframe. He's given us all some great analogies for what PANDAS and kids with other processing challenges go through: that their intellectual energy is like a glass of water, and it can only last so long -- it's not a bottomless lake. So it can get all used up by the end of a school day or even before, so to ask that same kid to go home and start all over again, with homework or whatever, without an opportunity to fully replenish that glass, is a losing proposition.

 

So we still go through some days where homework or even leftover classwork is a huge bummer, and takes forever. But by tag-teaming, we get through it. And if anything winds up being just too much for that day, we know he won't be penalized for asking for another day to complete (so long as he emails his teacher(s)).

[T_Mom]

What great insights you have gotten here!

My d went through a similar time last year academically, essentially 3 quarters of the year. We took a doctor's note and a cognitive behavior therapist in with us to meet with the Principal, and teacher, numerous times.

 

Essentially, given that her writing was affected by the OCD issues they finally decided to not grade her writing at all--(because it was health related problem.) I explained it as being a written language processing issue due to brain inflammation, and tried to share the Pandas construct with them (show them the Saving Sammy Today Show clip.) If the school would not grade the writing performance it would take alot of pressure off of your dd.

 

We also worked out with the teacher that she would "do" an hour of homework, and that was it. Some nights alot got done within that hour and some hardly any at all, depending on how she was doing.

 

Sleep and rest were ESSENTIAL to her brain healing last year--We could definitely tell if she did not get enough sleep--and homework (when ill) is not a priority. We found it essential to encourage, support, and assure her that what she was experiencing was temporary, and that we would see her through it--and it was going to go away.

My d was in 5th grade at the time and had been assessed as t and g.

[matis_mom]

My dd is on augmentin 600mg x2 daily. She slowed down on her tics for a couple of weeks but then she was exposed to strep and we had a pretty traumatic week with our puppy that upset her. Well, now hers tics are back full force and her OCD is getting bad again.

 

It is showing in her school work. She is failing all of her writing papers and her handwriting is horrible. She can't figure out simple math problems. I know classic PANDAS symptoms. DH is making her redo all of her papers. This again is upsetting her and making the Tics worse. DH knows that she has PANDAS but also thinks that she should do her work right or have to redo it all because she is very smart. He doesn't seem to realize that she is overloaded right now. Her teachers don't know what PANDAS is and think that she is just rushing through and that she can do much better. She is choosing to accept the failing grade rather than redo the paper.

 

I asked her why she was rushing and she said that if she did that then she wouldn't have to worry about it anymore. She is always worried. Making her do it again is only making her worry and become more agitated. It is such a vicious cycle. I am at a loss as to what to do about her school work. I don't want her to fail but I also don't want her to get so worked up when she really can't help it. She is coming home at 3 and doing homework till 8 with only a break for dinner. This and she is only 9 years old. What should I say to her teachers to explain to them what she is going through. Should I pull her out? Put her on homebound? When I had rheumatic fever I was put on homebound and my brain wasn't even the culprit. I can't imagine what she is going through. Has anyone dealt with school work issues? All I have seen on here is how kids don't want to or can't go to school. This isn't her problem. She just can't do the work after she is there.

 

Melanie

Melanie,

My ds has a very hard time concentrating while he is going through exacerbation, their brain is just not responding, there's not a lot they can do, and stressing them out only makes things worse. At the young age of 9, I don't think it's a big deal if she misses a week of school or doesn't turn in all her homework, for crying out loud, the child is sick!

But if she is somewhat able and you can help her, how about she tells you what to right and you do the actual writing? Or she could dictate into a tape and the teacher can listen to it. I think if you show she is putting forth her best effort they will understand. Math becomes really hard, and sometimes you just have to give up on that, or break it up into smaller segments. Again, doing the actual writing for them is very helpful. We homeschool so I have the option of just calling the day off when things are bad and we catch up later. Just now that this will get better and try to keep things in perspective.

 

Isabel

[T_Mom]

I just went back and reread your original post and can't help but wonder if you have tried the Dr K steroid burst protocol to "test" for possible Pandas--If there is reason to suspect it is Ps then you may want to explore that-- though I believe some parents have seen Ts get worse with steroids (in case that is a concern.) www.webpediatrics.com

 

He is very kind and does phone consults as well--He was very helpful to us.

Augmentin may work for some, but for us Amoxicillan has been the one to work, and steroids. I realize you are in the "trying to figure it out" stage still--hang in there--and don't let the school ruin your d's year. This illness is debilitating enough without the constant hit to self-esteem.

 

Best to you--

TMom