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LindaMW

Math and school problems

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I have been reading all the other posts and have come across a few that talk about problems with math. Does anyone else have trouble with their child not wanting to go to school too?

 

My son has missed the last two months because he gets so anxious that it turns into a panic attack. Just yesterday we talked about it again and he was full blown hyperventilating. Also when I help him with his math he cannot concentrate and says he just doesn't "get it." Now I know a few months ago, before all this he got it and was making A's in math.

 

Tomorrow we start with a tutor because ou school said we have to in order for him to pass. My other frustration is school keeps pressuring me to get him to come back. Now there are other kids in our school out due to concussions, are they pressuring them to get their kids back? I feel like they just do not understand. Oh it's anxiety you just need to make him go. Unbelievable!

 

We see the pedi that has him on antibiotics next week, but I have not seen any change since he's been on them. I know someone sent me info about the NIH study but I was going to see what other ideas the pedi had first. Plus he has never been tested for Lyme or vitamin def. Also he got the Flumist back in August and I want to see if that could have been an issue too.

 

I just feel like we have been getting no where and with the school presure on top of his symptoms, I feel like I am going insane.

 

Thanks,

Linda

 

P.S. Does anyone know off hand if there is anyone in the Pittsburgh area. The doctor we are seeing we found his name on the Pandas Network site, but he doesn't know how his name got there.

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How old is your son?

Would he qualify for the study?

If your son will not go to school, you have big problems!

I speak from experience.

If I had a kid who qualified for the NIH IVIG study, I would do it!

If the doc you are se ing now is not sure about PANDAS, try to get to a PANDAS doc.

Your son sounds like he is really suffering.

Math difficulties are not rare at all for PANDAS kids.

 

What abx is he on and dose? Maybe it is not enough?

Please look into the study.

Edited by PowPow

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yes, call about the study ASAP...if your son's case has been going on too long, they won't take him, so time is of the essence. He is suffering and needs aggressive medical care...antibiotics, possibly IVIG/PEX.

 

http://clinicaltrials.gov/ct2/show/NCT01281969

 

If your son has missed 2 mo. of school...that is MAJOR! If he doesn't get into the study, I'd recommend a top PANDAS doc...Dr. Trifiletti (NJ), Dr. Latimer (DC), Dr. Bouboulis (CT)...don't worry about staying local. These docs are all in the North East.

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I contacted Dr. James Leckman, got the name from someone else on this forum, and he emailed me a form to rate the severity of symptoms and who to send it too. I am going to review it with my husband and go from there. I think the study is done in Maryland and we are in Pennsylvania, so if we qualify, it would not be too far.

 

It is just so hard to get others to understand all this. The psycharist said to pursue these other avenuse, but you can tell she doesn't agree. But at the same time she wants us to jump into putting him on Prozac. Wouldn't it make sense to rule out any other medical/bacterial/immume problem first? If we just jump into psychotic drugs then we may never know what the underlying cause was. I'm not saying we may not have to go that route, but rule out everything else first.

 

Same with school, just make him come in. Then when he does he screams and cries and disrupts everyone. We have already done this. But I guess school has to say that. It's not that I don't want him back to school, believe me I have tried, but he is not rational when we go through all of it. Plus I am afraid if he misses too much he will not be able to move on to next grade.

 

Thanks again for everyones help.

Linda

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I have been reading all the other posts and have come across a few that talk about problems with math. Does anyone else have trouble with their child not wanting to go to school too?

 

My son has missed the last two months because he gets so anxious that it turns into a panic attack. Just yesterday we talked about it again and he was full blown hyperventilating. Also when I help him with his math he cannot concentrate and says he just doesn't "get it." Now I know a few months ago, before all this he got it and was making A's in math.

 

Tomorrow we start with a tutor because ou school said we have to in order for him to pass. My other frustration is school keeps pressuring me to get him to come back. Now there are other kids in our school out due to concussions, are they pressuring them to get their kids back? I feel like they just do not understand. Oh it's anxiety you just need to make him go. Unbelievable!

 

We see the pedi that has him on antibiotics next week, but I have not seen any change since he's been on them. I know someone sent me info about the NIH study but I was going to see what other ideas the pedi had first. Plus he has never been tested for Lyme or vitamin def. Also he got the Flumist back in August and I want to see if that could have been an issue too.

 

I just feel like we have been getting no where and with the school presure on top of his symptoms, I feel like I am going insane.

 

Thanks,

Linda

 

P.S. Does anyone know off hand if there is anyone in the Pittsburgh area. The doctor we are seeing we found his name on the Pandas Network site, but he doesn't know how his name got there.

 

 

If your child is feeling too anxious to go to school, and you can get a medical note to prove that, then the school must offer home instruction, where a teacher goes into the home for a few hours per week, to work with your son. It is expensive for the school board, but it must be offered to children who are too overwhelmed and anxious to go to school. Consult with the school board. Know your rights. Put it down on paper to keep a paper trail. Be a strong advocate for your son. The school might require a letter from your family physician, or a psychiatrist. Keep track of all correspondence to the school. You can write to the principal, the superintendent, the school social worker and request that they assist your son obtain home instruction, because he is feeling too anxious and fearful to go to school, and the education act says that children must receive an education until a certain age. It is not the same as home schooling, which is where the parent teaches their child. Home instruction is where the teacher from the school board comes into your home at agreed upon times and days.

 

Familiarize yourself with the policies where you live, and the education act where you live.

 

In the meantime, keep connecting to the people on this forum. They are very supportive and knowledgeable in many areas.

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I contacted Dr. James Leckman, got the name from someone else on this forum, and he emailed me a form to rate the severity of symptoms and who to send it too. I am going to review it with my husband and go from there. I think the study is done in Maryland and we are in Pennsylvania, so if we qualify, it would not be too far.

 

It is just so hard to get others to understand all this. The psycharist said to pursue these other avenuse, but you can tell she doesn't agree. But at the same time she wants us to jump into putting him on Prozac. Wouldn't it make sense to rule out any other medical/bacterial/immume problem first? If we just jump into psychotic drugs then we may never know what the underlying cause was. I'm not saying we may not have to go that route, but rule out everything else first.

 

Same with school, just make him come in. Then when he does he screams and cries and disrupts everyone. We have already done this. But I guess school has to say that. It's not that I don't want him back to school, believe me I have tried, but he is not rational when we go through all of it. Plus I am afraid if he misses too much he will not be able to move on to next grade.

 

Thanks again for everyones help.

Linda

 

Yeah! I hope you get into the study. How old is your son?

 

You know, he has a medical condition. His health is the most important thing right now. If he had a diagnosis of childhood cancer, you would not be getting pressure from the school. I know, they don't "get it"...it's all "in his head" ...ugh!

 

Yes, you definitely need to rule out underlying medical causes..not just shot gun with prozac, which is a band aid. Also, I think if you start him on prozac now (or any psych. drug) that might disqualify him from the study.

 

We understand where you are coming from. My dd missed a lot of 2nd grade thanks to PANDAS...she got anorexia. She's in 6th grade now. She's not 100%, pandas is still there, but she's good pretty good. She goes to school every day, and gets good grades. People don't know she has any problems. Your kid can get better, but remember his health is the most important thing now, not forcing him to go to school (which won't work anyway). Hang in there!

Edited by EAMom

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My son was in honors math, we had to fight tooth and nail to get him taken out of the class a few months ago. He simply could not handle it and it came on very sudden. The school was extremely difficult about it. We spent several weeks having nightly meltdowns for hours and only getting through 2-3 math problems. To this day the teachers still make snide comments to my son about his lack of effort and his homeroom teacher told him the a few weeks ago that he "could do it, he just doesn't apply himself". He was switched out of the class in January...they still are upset by it. Don't ask me why. But, to answer your question, my son has always done exceptionally well in school, scores several grade levels above since kindergarten in standardized tests and suddenly just wasn't able to hang in particularly in math.

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I contacted Dr. James Leckman, got the name from someone else on this forum, and he emailed me a form to rate the severity of symptoms and who to send it too. I am going to review it with my husband and go from there. I think the study is done in Maryland and we are in Pennsylvania, so if we qualify, it would not be too far.

 

It is just so hard to get others to understand all this. The psycharist said to pursue these other avenuse, but you can tell she doesn't agree. But at the same time she wants us to jump into putting him on Prozac. Wouldn't it make sense to rule out any other medical/bacterial/immume problem first? If we just jump into psychotic drugs then we may never know what the underlying cause was. I'm not saying we may not have to go that route, but rule out everything else first.

 

Same with school, just make him come in. Then when he does he screams and cries and disrupts everyone. We have already done this. But I guess school has to say that. It's not that I don't want him back to school, believe me I have tried, but he is not rational when we go through all of it. Plus I am afraid if he misses too much he will not be able to move on to next grade.

 

Thanks again for everyones help.

Linda

 

 

I think the study is in Connecticut at Yale, but I could be mistaken.

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Linda --

 

My DS (now 15, 12 when diagnosed with PANDAS) had very similar problems with both math and school during his illness. There's something about the "scrambling" of the processing due to PANDAS that seems to make math particularly difficult, even for kids who have excelled at it before being struck ill. My DS has always been in gifted and/or advanced math classes, and you can read similar things about Sammy Maloney ("Saving Sammy" by Beth Alison Maloney). Plus, a lot of the kids here on the forum had similar patterns of exceptional at math prior, very troubled and slow at math during, and returning to exceptional math skills after successful treatment.

 

As for the "school phobia" you're seeing, we've been through that, also. The anxiety gets so high that the mere thought of going to school can trigger a "fight or flight" reflex, and after that, there's no winning. Our school and therapist wanted us, too, to keep bringing our DS to school so as to not exacerbate the "school phobia," but let's face it, they didn't know what to do with him once we got him there! He couldn't sit in a class for more than just a few minutes before he'd become convinced he'd missed a word or two of a teacher's instructions, become convinced that now he was behind and didn't know what to do or how to do it, and he would bolt from the classroom. Only he had nowhere to go, so we wound up with almost daily phone calls to come retrieve him because they didn't have adequate staff to allow him to sit in a counselor's office and do his work privately for the remainder of the day or whatever.

 

Getting your son medical treatment is Priority No. 1, but I can appreciate where you're coming from on the academics, not wanting him to fall too far behind. We were in the same boat. Our DS was already anxious, and feeling as though he was behind his classmates and/or incompetent in subjects in which he formerly excelled did not help matters. Does your DS have a 504 Plan or an IEP? You will probably need to request one in order to receive ongoing home instruction, but you are entitled to it if your child cannot attend school. Just doing what you can to keep his "feet wet" in terms of academics will help him in the end as he goes through treatment and begins to feel better and less anxious overall.

 

Hang in there!

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Hey Linda-

 

ugh-I have been there. I haven't read the whole thread, I am sure you have gotten great advice!

 

Here is my 2 cents FWIW.

 

There are a few important things right now, the least of which is his math ability.

 

Firstly, you need to get to a pandas doc to get him treated properly, medically. Until you do that, it is a hard road for both of you. This means some bloodwork, some antibiocs (maybe a change), and probably prednisone and/or ivig.

 

Secondly, you probably need to get a rush 504 plan in place. You need to ask for the necessary accomodations. This may mean- no math homework and an abbreviated day. However it is very important that you work seriously to get him into school. It is not so important what his grades are. For us, we had lots of documentation for my kids: neurologist and a detailed letter from a psych- and the school gave us NO trouble. My kids did not have so much cognitive issues, but school refusal due to ocd/ anxiety.

 

Good luck- it will get easier!

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Yes, our daughters both can "not do math" when in an episode...otherwise they are both A students. They have fuzzy thinking, inability to write or copy problems correctly, margin drift, etc. when in an episode.

 

My younger d (11 at the time) spent all of last school year not being graded, due to OCD which then became ODD -- complete with school refusal. The private school was wonderful with our situation. The Principal had seen our older d go through severe Ps and then recover...so she was VERY supportive. The school literally did not grade her (as it would have been all Fs)...yet all along they assured us they would pass her. They knew she was an A student and that the OCD hopping, touching, head ticcing, all went along with the PANS effects of totally abolishing academic ability. I do not think the public school would do the same for you. The 504 Plan suggested by DCMom is the right way to go if you can get it. Our d had such severe school refusal that nothing could get her to school, aside from finally a family friend with whom she had to stay--for the month prior to IVIG. (

We really are a relatively normal family--despite what this sounds like!! :)

 

I have to share with you that she did not get better until wwwaaayyyy too late in the year, only after we finally resorted to IVIG.

 

For our d PANS treatment was (literally) a life saver. (After we had to replace 3 lamps, a tv, multiple other breakables around the house...holes in the walls, etc.)

 

Yes we tried counseling, etc...NOTHING worked short of IVIG. I never thought we would get to that point.

 

I agree that you should call NIH directly tomorrow--the drive is short, compared to the potential to lose months and months of his childhood. You can call Dr. Grant directly as he is reviewing applicants to the study. I would try that as it is free, a very thorough review, and within driving distance from your home.

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My daughter was in public middle school at the time of her school refusal episode. Our school was wonderfully supportive. Within 5 days they put her on homebound instruction. Her classroom teachers came to our house once per week to give her instruction. Her guidance counselor coordinated it all, and the pre determined to grade her as pass or fail. She did not have cognitive difficulties, so keeping up was not an issue. I am sure if she had the math problems, they would have accomodated. I would think they would have worked at her pace, and possibly we could have employed a summer tutor to catch her up. I would really think the school would have made an effort for her to be passed along with her class.

 

That was our first year in our district!

 

This year she was moved up to the honors program and has maintained straight A's and nearly perfect attendance (fingers crossed).

 

 

 

My younger had her major episode in Kindergarten. She DEFINITELY had cognitive issues: short term memory, math, and dislike of reading. When she went into remission, she actually did not have to catch up. She had somehow absorbed it all! I think the issue was in the getting it from her brain to the paper- or out- not that she didn't get it- if that makes any sense. So, once she was in remission, she was successfully able to show what she actually knew all along. Of course K is A LOT different than middle school- but I hope this gives you some hope!

 

In the short and long term the most important things are: your son's health, his self confidence and self esteem, his willingness to face his fears/ stay calm/ and put in effort, his grades are WAY last. Nothing like PANDAS to create a little perspective!

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