School issues

[bronxmom2]

Yes! Take is easy on yourself and your son! Take it easy, easy, easy...

 

If your instinct is to take him out for a little while, and you can do that, I would do it. Last year when things were really bad, I kept my son home for a "mental health" day almost every Wednesday and we just took it easy or we did things that made us both feel so much better about him... things he could still enjoy-- museums, performances, etc.-- when he seemed so impaired in the school setting. His mental capacity was still there, but he was just totally unproductive. Things like documentaries have helped us so much.

 

By the way I did not think my son would listen to me either, and he does.

 

How old is he?

 

My son recently had PEX (through Dr. Latimer) and, though I thought the academic issues were still plaguing us, I realize now that it really is getting better... he was "in a fog" like dc mom describes.

 

So it will get better!

[matis_mom]

Hi Michele- I am sorry you are going through this

 

I am struggling with this issue now, as my dd missed 10 days in the first marking period.

 

But, my heart and my mommy instinct strongly remind me that her health (that includes mental health) comes first, period. I try to look at it like- we can let it go in the bad times, and work a little harder when she is doing well. At some point I had to let go of my little inner- overachiever, and just try to get dd happy and healthy.

 

That being said, doesn't mean I don't stress over this daily. I also have to (but have been putting off) sitting down with someone at the school and letting them know exactly what is going on (last year I dealt with her teacher- who was wonderful, this year her teacher is a little cold).

 

Lots of parents her home school- I think that is a great option, and would consider, except dd loves school so much.

 

Hello..and thanks for replying back to my post. It helps to talk to others going through the same situation.

 

I know what you mean about your heart and mommy instinct. Jacob is in a gifted classroom and the workload is horrendous. He just cant keep up and I think this is stressing him out even more. I just want him happy and healthy again. Children should not have to live with so much stress, anxiety and fear. It truly breaks my heart. My problem right now is convincing my husband that it is the best thing for our son. He is also an overachiever and I feel this puts a lot of pressure on Jacob. I do have him seriously considering it after last nights episode. My son doesnt necessarily love school so much..I think he want to succeed at everything. He has trouble socially. He has also been pulling out hair in the top of his head..leaving bald spots. He told me yesterday that children were laughing at him because of the bald spots. I am not sure if they really were or he was just imaging things again. He has good days and bad days. So we send him back to school and then it just happens all over again. Where are you located?

 

Hi Michelle,

My son is 12 and even though his PANDAS symptoms are not too bad, I can definitely tie the dilated pupils to an increase in OCD/Anxiety.

We have been homeschooling all the way along (not because of his issues) and it works for us. Some days I have to give up on school, and other days are better and we are able to catch up, so we have been able to stay on top of things, thank God.

There are two things that are very important and are hard to deal with if your son is in school.

1) Sleep. It's hard when they can't settle down and night and then they have to get up at a set time in the morning to go to school, no matter what. My son has adrenal fatigue and for the longest time I tried to "make him" into a morning person. Now I've given up that battle and just let him sleep, following doctor's orders.

2) Stress. Stress doesn't not help anything, so at this point with so much going on, if you can cut down on the stress, please do. I might mean moving him to a different class that is not so demanding, working a different schedule with the school, hiring a tutor, or homeschooling. You'll have to find the right answer for yourself, but from your posts it seems right now school is not being a fun learning experience for him.

 

Sometimes you have to concentrate on one thing and let go of others that seemed so important before this health crisis. Even if he looses a whole year of school, what's the big deal? In the whole scheme of things health is something you cannot do without or "catch up" on.

 

Hopefully you will be able to find some creative solution so that he will keep learning through this tough time! Hang in there!

 

Isabel

[pixiesdaddy]

We didn't intend to pull our DD9 out of school, but she began having major meltdowns in class and ultimately hit another student on the playground, at which point they "requested" we pull her out until she had her IVIG treatment.

 

In retrospect, it was absolutely the right move to pull her out.

 

No lies - it was obnoxious to deal with at home... there was no break from dealing with her when she was really exacerbated, but we made it work and I think ultimately it was so much more helpful than foisting her off on school.

 

We were able to really show her that we were on her side, really work with her some at home on school work, and really invest in helping her get better.

 

She is now about two months post-IVIG, back at school for full days, and moving forward step by step.

 

Our relationship is MUCH improved due to the time that we spent together while she was healing.

 

Pixiesdaddy

[smartyjones]

my son is younger - 5 and kindergarten - for him the issue is more that's he's there and interacting well than the pressure from higher grades. he's reading well and 'gets' math so i don't have those concerns - yet?

on some days that i might be unsure about him and definitely last year, the relief i feel when i pick him up is unreal- one day i just cried and cried on the drive home as a release b/c he was with me and i wasn't worried about what was going on. i think you should factor in your stress/thoughts/fears about him there too.

 

from memory so correct me if wrong - for Saving Sammy, i believe he basically missed 6 & 7th grades and the goal for 8th was to show up. he still went on to go to the math boarding school in maine where they thought his mind was exceptional. he's now a freshman at carnegie-mellon, yes?

 

i live in Annapolis, MD - there's a liberal college here called St. Johns and they seriously read books and discuss them as the entire curriculum. there's all types of education!

[mama2alex]

We are home schooling right now and for us, it's been a challenge. My son is constantly refusing to do what I ask, crying, negotiating to reduce the amount of schoolwork. He's also been very uncooperative with the home teacher they send us three hours a week. It's exhausting. Everything he gets done has my sweat all over it. That said, it has also been a big relief because there is so much illness going around his school, I just couldn't leave him up there. We are waiting to do IVIG for PANDAS and then start IVIG monthly for immune deficiency and he will return soon after the first dose.

 

I think that you should just follow your own instincts as to what is best for him. It already sounds like you think he should take a break. I don't think it hurts them not to be in school for a while, and most likely helps due to reduced stress (on you and him), less exposure to illness, etc.

 

Our principal seemed unhappy about our decision and made a point of telling me that even the kids with leukemia at our school are still showing up because THEY want to be there. She doesn't get PANDAS, no matter how many articles, videos or explanations I give her. She just thinks my son has a bad attitude and that we are enabling him. But she had to go along with it once our doctor signed off and the district office approved.

 

You have the right to do this, and it sounds like he could use a break, so I think you should think about giving it a try.

[michele703]

We are home schooling right now and for us, it's been a challenge. My son is constantly refusing to do what I ask, crying, negotiating to reduce the amount of schoolwork. He's also been very uncooperative with the home teacher they send us three hours a week. It's exhausting. Everything he gets done has my sweat all over it. That said, it has also been a big relief because there is so much illness going around his school, I just couldn't leave him up there. We are waiting to do IVIG for PANDAS and then start IVIG monthly for immune deficiency and he will return soon after the first dose.

 

I think that you should just follow your own instincts as to what is best for him. It already sounds like you think he should take a break. I don't think it hurts them not to be in school for a while, and most likely helps due to reduced stress (on you and him), less exposure to illness, etc.

 

Our principal seemed unhappy about our decision and made a point of telling me that even the kids with leukemia at our school are still showing up because THEY want to be there. She doesn't get PANDAS, no matter how many articles, videos or explanations I give her. She just thinks my son has a bad attitude and that we are enabling him. But she had to go along with it once our doctor signed off and the district office approved.

 

You have the right to do this, and it sounds like he could use a break, so I think you should think about giving it a try.

Thanks to everyone who posted for all the good advice. We have taken our son out of school and will try to begin homeschooling we he is feeling better. The last week has been very hard for him and I think he just needs some down time before beginning any schooling. Will let you know how it goes:)

[dcmom]

For those who are homeschooling:

 

Help. My dd has anxiety and school refusal with pandas. When she is well, she loves school more than any kid I have met. She has missed so much this year, first grade. She had a stomach virus, the flu, plasma pheresis and now a pandas episode. So she is on track to miss 50 days for the year, if things keep going this way. The teacher finally did send me a note this morning suggesting thinking about homebound instruction because she is starting to fall behind.

 

I just don't know what to do. I guess I really have to meet with someone at the school. Has anyone done part homebound, and then going to school when they are well. I am sure that is not possible. If the steroids kick in, then I guess we will be okay for now. But if they don't then I guess I will have to look for another option.

 

Do you homeschool or homebound? How are the homebound teachers- quality? I guess that would at least give me a little break in the day to do some stuff around the house... If you homeschool- do you keep a type of schedule? What do you do for socializing (if your child is well), dd would definitely need that.

 

I didn't think it would get to this.

[mama2alex]

DCMom,

 

I guess what we're doing is technically "homebound" because we are still enrolled in the school and it is temporary to protect him from infections. I don't know how cooperative/understanding your school is, but several peope have mentioned that kids with leukemia often need homebound for a time, and I imagine this can be several times a year. No one has said this, but I am starting to wonder if the school district HAS TO allow it if you have a doctor's letter (I mean legally). I think if you have a doctor's letter laying out the situation, you could probably work it out with them to do it "as needed" so that you have some flexibility and she can stay caught up.

 

We started out writing our schedule for the next day every evening, but we were never able to stick to it and it caused more anxiety. So now I just put together the work I'd like him to do in a day, and I let him choose what's next as he goes. We take breaks as needed, and just kind of play it by ear. A tv show is the incentive for finishing - if he doesn't finish his work or doesn't cooperate with the teacher, no tv that day.

 

Our home teacher is okay. My son doesn't like her, but that may just be the state he's in, not any reflection on her. He is finally starting to work with her without too much push back, so it is helpful for me to have a little time to do dishes, etc. She doesn't fully get the PANDAS thing, and is baffled and frustrated by his behavior, but what can you do.

 

For socialization, we have friends over after school for playdates. All our friends know what's going on, so they let me know if anyone in their family is sick and we reschedule. I also tried taking him to our local history museum, but he was too afraid to go into any of the exhibit rooms and it just ended in a meltdown over my (not) buying him a toy at the gift shop. So we're going to wait on the fun outings until he's better.

 

My father-in-law has also been coming up about once a week to help out for a few hours, which gives me a much needed break and allows me to run errands.

 

Hope this helps!

 

For those who are homeschooling:

 

Help. My dd has anxiety and school refusal with pandas. When she is well, she loves school more than any kid I have met. She has missed so much this year, first grade. She had a stomach virus, the flu, plasma pheresis and now a pandas episode. So she is on track to miss 50 days for the year, if things keep going this way. The teacher finally did send me a note this morning suggesting thinking about homebound instruction because she is starting to fall behind.

 

I just don't know what to do. I guess I really have to meet with someone at the school. Has anyone done part homebound, and then going to school when they are well. I am sure that is not possible. If the steroids kick in, then I guess we will be okay for now. But if they don't then I guess I will have to look for another option.

 

Do you homeschool or homebound? How are the homebound teachers- quality? I guess that would at least give me a little break in the day to do some stuff around the house... If you homeschool- do you keep a type of schedule? What do you do for socializing (if your child is well), dd would definitely need that.

 

I didn't think it would get to this.

[matis_mom]

For those who are homeschooling:

 

Help. My dd has anxiety and school refusal with pandas. When she is well, she loves school more than any kid I have met. She has missed so much this year, first grade. She had a stomach virus, the flu, plasma pheresis and now a pandas episode. So she is on track to miss 50 days for the year, if things keep going this way. The teacher finally did send me a note this morning suggesting thinking about homebound instruction because she is starting to fall behind.

 

I just don't know what to do. I guess I really have to meet with someone at the school. Has anyone done part homebound, and then going to school when they are well. I am sure that is not possible. If the steroids kick in, then I guess we will be okay for now. But if they don't then I guess I will have to look for another option.

 

Do you homeschool or homebound? How are the homebound teachers- quality? I guess that would at least give me a little break in the day to do some stuff around the house... If you homeschool- do you keep a type of schedule? What do you do for socializing (if your child is well), dd would definitely need that.

 

I didn't think it would get to this.

dcmom,

We are homeschooling, and keeping a schedule certainly helps. But I think if she's only in 1st. grade, you don't have too much to worry about. You can do tons of read-alouds, interesting science videos, nature walks, and some math every day. Homeschooling allows you to be creative and if let's say a particular day she is not interested on this or that, you can just go for a walk, get some fresh air, and try later. Don't worry too much about academics this year, just focus on getting her well and keeping YOUR sanity. Try to find a homeschool group and you'll find tons of opportunities for socialization (for her) and support (for you).

If you need more specific advice, let me know.

 

Isabel

[bronxmom2]

I am so so sorry to hear you guys are struggling!

 

As you know, I am homeschooling my son. I am just starting, so I am no expert. I am still in the "unschooling" phase where I am trying to get a sense of what I can expect from him. I did subscribe to math and science curriculum through k12.com because I did not know how to approach those subjects and worried about being systematic. My son happens to be an unusually good reader so I let him read for much of the day but focus on history-- I am slowly trying to get him to write. (This is his big issue.) We are mostly just trying to have some fun and lift the gloom that had settled over our house. Also to exercise off those stupid steroid pounds!!!

 

What you need to look for is a local homeschooling association. Here in NYC there's a big homeschooling community, connected through elists, and they're constantly posting events. I like the NYC community because they are secular, friendly but not prying, and have similar values as parents-- also the events they organize tend to be low-cost.

 

Here are a few links I found:

http://www.homeschoolingindc.com/

http://www.homeschoolcentral.com/support/w..._homeschool.htm

 

Neither of these look perfect to me, but if you can find an association, just join it-- so you'll be more informed and connected if you do decide to pull her from school. I belonged NYCHEA for a year before I finally took the plunge.

 

The school my son was enrolled in this year did mention the homebound option to me-- which would involve the DOE sending a teacher to our house-- and I would LOVE to have a teacher come to the house, to take the pressure off me-- and because after all I have no idea what I'm doing-- however the procedure for doing this involved getting a 504, and I am still committed to avoiding a label for my son at all costs. Also here in NYC the bureaucracy involved in getting something like set up is just totally overwhelming to me, potentially involving lawyers, etc. I don't blame them-- they are serving 1 million students surprisingly well-- but I find myself much more comfortable simply withdrawing from their... clutches.

 

However, if you live in a flexible school district... let the school do the work for you!

 

 

 

 

 

 

For those who are homeschooling:

 

Help. My dd has anxiety and school refusal with pandas. When she is well, she loves school more than any kid I have met. She has missed so much this year, first grade. She had a stomach virus, the flu, plasma pheresis and now a pandas episode. So she is on track to miss 50 days for the year, if things keep going this way. The teacher finally did send me a note this morning suggesting thinking about homebound instruction because she is starting to fall behind.

 

I just don't know what to do. I guess I really have to meet with someone at the school. Has anyone done part homebound, and then going to school when they are well. I am sure that is not possible. If the steroids kick in, then I guess we will be okay for now. But if they don't then I guess I will have to look for another option.

 

Do you homeschool or homebound? How are the homebound teachers- quality? I guess that would at least give me a little break in the day to do some stuff around the house... If you homeschool- do you keep a type of schedule? What do you do for socializing (if your child is well), dd would definitely need that.

 

I didn't think it would get to this.

[KeithandElizabeth]

Eileen:

 

I am also homeschooling my son because he was so severe at the beginning of the school year that he was not able to even attempt to go to school.

 

We are using the K12 program and I am amazed at how convenient it is.....

 

My focus is regaining my son's health and I try to not get carried away with following everything in the curriculum perfectly. For example, my son cannot write well because of PANDAS so I do not make him write as much. I do quite a bit of writing for him.

 

The amount of time it takes to get all of the work done is shockingly little. My son is in second grade and if we were to sit down and do all the work at once, it would probably take us 2 hours.

 

Elizabeth

[ajcire]

I came across this and thought it might be of interest depending on where people live.

 

http://www.connectionsacademy.com/landing/...CFR9N5Qod7WdBqQ

[momtocole1]

Dear Michele,

When I read your post it brought tears to my eyes. It reminds me so much of my son. Hold old is your son? Mine is 12. My son had so much trouble in the public school system. His worst fears at that time were bees, high winds, thunder storms and potential earthquakes.

 

When I tried to do homework with him it became impossible. We would go on for hours just trying to get him to do just one little section.

 

The best decision I ever made was to take him out of public school. Some of the other children discussed in this forum are in public schools and they are doing fine there. But for my son, it just got to be too much. I think if I really pushed it, I could have forced the issue, he is very bright and there was no question that he knew the material. He did fine in 1st and 2nd grade. Not to say he didn't have quirks. He got his first strep infection at the end of 1st grade (April 03).

It was when he got into 3rd grade when it got too difficult. The multi-step math problems just became too tough for him. I just did not understand. In 1st and 2nd grade math was a breeze for him. He started to put his head down and gave up.

 

We had an IEP meeting in the 3rd grade and they modified the amount of work that he had to complete. It was still too much for him. Doing less problems also made him feel "dumb" if the other kids noticed.

 

Please take a look at a post that I put on the PANDAS forum on November 1, 2009. It references some very good articles about PANDAS in the school and what is like for a child with PANDAS to sit still in school (while in an exacerbation especially). I found these great articles when I did a search of the archives, somebody else originally posted them and they are great. One of the articles is written by a grown man that had Sydenham's Chorea and he talks about how torturous it was for him to try to sit still. I know that Sydenhams's Chorea is not the same thing as PANDAS, but there have been many discussions about the similarities between the two disorders.

The post # I am referencing is Post# 43616 by MomtoCole.

 

My heart really goes out to you. I hope that this forum is a source of help.

 

Take Care,

 

Judy...

 

 

Hello,

 

I am writing because I need advice and dont know where to turn. My son has not been officially diagnosed at this point. We had an appointment with Dr. Latimer last Thursday and awaiting the lab results. The problem is my son has missed a lot of school over the last few weeks. He is struggling to make up and to keep up. He spends all of his time thinking and worrying about spiders, tics, snakes, vampires, and ghosts that he cant concentrate on his work. It seems when he sits down to do his work it makes the symptoms worse. We had another major episode last night while doing homework. He was on an emotional roller coaster. One minute he was enraged and the next crying. He will start talking about spider bites, vampires and blood and going on an on....an hour will pass and he has only done 3 math problems. I also noticed last night his pupils were extremely dilated. Needless to say...he didnt go to school again today. I am sure he will have another huge stack of make up work due to his absence. I dont know what to do....any advice would be greatly appreciated. He is currenly taking 875mg Augmentin twice a day, .25mg of risperdal twice a day, and .2mg of clonidine at bedtime. Should I just take him out of school for a while until this situation gets under control? suggestions...please?!?!

 

Michele

[bronxmom2]

Hi Elizabeth, I'm curious-- did you just enroll him in the k12 second grade curriculum or did you do their tests to see where he should be placed?

[bronxmom2]

Judy, did you come up with a solution for your son?

 

I can't remember, are you also homeschooling?