School issues

[michele703]

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

[dcmom]

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.

[brooke]

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

We had to take our son out of school last spring for the same reasons. Eventually, his behavior in school became similar to the "meltdown city" that I dealt with at home. They are simply not available to learn when they are in this state. Homeschooling is an option, if you can handle that. (I cannot!) He may not be available to learn until he receives a treatment. How long on the Augmentin? We did an IVIG in July with Dr. Latimer, and my son by September was available to learn in a specialized environment (only 7 kids in his class now). I took my son off of clonodine because it made him soooo sleepy. But that too was after IVIG. We never tried the other med, but it sure was recommended! Where are you geographically?

[KeithandElizabeth]

Hi Brooke:

 

How old is your son again? I am curious as to the dosage of IVIG you did with Dr. Latimer? How much improvement have you seen overall? And what is your main symptom? I am asking all these questions because I am wondering at what point you can say the healing stage has ended? Does anyone know this with IVIG? I believe Dr. K says it takes a year to fully heal, is this what Dr. L says?

 

Elizabeth

[michele703]

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

We had to take our son out of school last spring for the same reasons. Eventually, his behavior in school became similar to the "meltdown city" that I dealt with at home. They are simply not available to learn when they are in this state. Homeschooling is an option, if you can handle that. (I cannot!) He may not be available to learn until he receives a treatment. How long on the Augmentin? We did an IVIG in July with Dr. Latimer, and my son by September was available to learn in a specialized environment (only 7 kids in his class now). I took my son off of clonodine because it made him soooo sleepy. But that too was after IVIG. We never tried the other med, but it sure was recommended! Where are you geographically?

 

Hi Brooke:

Thanks for replying to my post. It is so comforting to hear from someone that knows exactly what you are talking about. Other people(including some doctors) look at us like we are insane. Jacob has been on the Augmentin for about a month..however, Dr. Latimer doubled the dose last Thursday. He was just taking 875mg once a day. The respirdal was prescribed by a psychiatrist. It is a psychotic drug. Supposed to help with this issue he has with the spiders,etc...

I dont know if I would be able to handle home schooling, because I dont think he would listen to me at all. I wonder if I could possible hire someone? or maybe the county would provide this for him??? We are located in Richmond, VA. Where are you?

[EAMom]

Yupp...I think this is a time that school really needs to sit on the back burner. I agree with talking to the teacher and school. Focus on him getting better for now. If your son had some other major illness (serious car accident or cancer) they wouldn't be expecting him to go along like it was "business as usual". Severe PANDAS symptoms shouldn't be any different.

 

The dilated pupils could be from the PANDAS. I don't know if it also could be from the clonidne (or risperda?) I know SSRI's can cause dilated pupils.

 

How old is your son?

 

Have you tried advil?

[michele703]

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?

[michele703]

Yupp...I think this is a time that school really needs to sit on the back burner. I agree with talking to the teacher and school. Focus on him getting better for now. If your son had some other major illness (serious car accident or cancer) they wouldn't be expecting him to go along like it was "business as usual". Severe PANDAS symptoms shouldn't be any different.

 

The dilated pupils could be from the PANDAS. I don't know if it also could be from the clonidne (or risperda?) I know SSRI's can cause dilated pupils.

 

How old is your son?

 

Have you tried advil?

I think I just need reassurance that I am not overreacting by taking him out of school. I told my husband the same thing. If he had cancer the school would not be so pushy and unsympathetic. It is definitely not anywhere close to "business as usual" in my household these days.

 

The pupils just seem to dilate when he gets extremely stressed or anxious. This is also when he starts hallucinating about spiders, bugs, etc...

He finally went to sleep last night (in the bed with us of course because he is afraid to be alone at ALL) he slept for 13 hours. He just woke up a little while ago and I checked his pupils..no longer dilated????

[bronxmom2]

Hi Michelle,

We have a similar situation, and I am now homeschooling. This is a HUGE relief for both me and my son, though my husband is really struggling.

 

For K and 1st grades (last year) my son was in a fiercely competitive gifted school here in NYC, and it was a mess. Though they were able to see some of his behaviors in the context of giftedness, and were able to keep him engaged for most of the day, the stress was too much, and he simply ignored much of the work. (He spent first grade reading under his desk.) Also I felt the other parents did not want my child in the classroom.

 

This year I moved him to a school near our house, thinking it was time to take the pressure off him and let him heal. It was much worse. He was bored out of his mind and it was impossible for him to keep his excitability in check. The teacher did not know what to make of him. Also I found that it was difficult for me, personally, to set aside my own ambition for him and see him in a situation where he was learning NOTHING.

 

School NEVER felt right for us. Not from the first day of preschool. This was also exactly when PANDAS started, and I think the mega-exposure in the school setting is too much for my son's immune system.

 

Anyway, I've only been homeschooling for about a month, but I already feel so much better and I am satisfied because I know my son is learning. He is 7, and he's doing 4th grade math and science. He reads several hours a day, and it turns out he has a real talent for history (which they just plain DON"T teach in schools)-- I am trying the "classical education at home" method, in other words he is studying ancient greece and rome, but in a very "unschooly" way.

 

My child who has not written in two years just wrote the first page of what he's calling a novel about a boy who joins the American revolutionary army.

 

I am seeing homeschooling (which may or may not be temporary) as a huge gift to myself and my son-- I refuse to give up on him-- I mean, I decided this year to take the pressure off (and put him in the "easy" school) but quickly realized that would not work either, because he needs the pressure, but he needs the right pressure....

 

good luck!!!

[michele703]

Hi Michelle,

We have a similar situation, and I am now homeschooling. This is a HUGE relief for both me and my son, though my husband is really struggling.

 

For K and 1st grades (last year) my son was in a fiercely competitive gifted school here in NYC, and it was a mess. Though they were able to see some of his behaviors in the context of giftedness, and were able to keep him engaged for most of the day, the stress was too much, and he simply ignored much of the work. (He spent first grade reading under his desk.) Also I felt the other parents did not want my child in the classroom.

 

This year I moved him to a school near our house, thinking it was time to take the pressure off him and let him heal. It was much worse. He was bored out of his mind and it was impossible for him to keep his excitability in check. The teacher did not know what to make of him. Also I found that it was difficult for me, personally, to set aside my own ambition for him and see him in a situation where he was learning NOTHING.

 

School NEVER felt right for us. Not from the first day of preschool. This was also exactly when PANDAS started, and I think the mega-exposure in the school setting is too much for my son's immune system.

 

Anyway, I've only been homeschooling for about a month, but I already feel so much better and I am satisfied because I know my son is learning. He is 7, and he's doing 4th grade math and science. He reads several hours a day, and it turns out he has a real talent for history (which they just plain DON"T teach in schools)-- I am trying the "classical education at home" method, in other words he is studying ancient greece and rome, but in a very "unschooly" way.

 

 

 

My child who has not written in two years just wrote the first page of what he's calling a novel about a boy who joins the American revolutionary army.

 

I am seeing homeschooling (which may or may not be temporary) as a huge gift to myself and my son-- I refuse to give up on him-- I mean, I decided this year to take the pressure off (and put him in the "easy" school) but quickly realized that would not work either, because he needs the pressure, but he needs the right pressure....

 

good luck!!!

 

I am so glad that homeschooling is going so well for you. I am just afraid that my son would not do the work for me. I dont know..maybe he will surprise me. I will let you know how things go for us. I just called and left a message for the guidance counselor. We just need something to "lighten up" around here before we all explode! Thanks again.

[EAMom]

The pupils just seem to dilate when he gets extremely stressed or anxious. This is also when he starts hallucinating about spiders, bugs, etc...

He finally went to sleep last night (in the bed with us of course because he is afraid to be alone at ALL) he slept for 13 hours. He just woke up a little while ago and I checked his pupils..no longer dilated????

 

It sounds like fear/fight or flight reaction/sympathetic nervous system...could be causing the pupil dilation. http://en.wikipedia.org/wiki/Fight-or-flight_response

 

I dont' know if fight/flight is why other pandas kids get dliated pupils.

[peglem]

I dont' know if fight/flight is why other pandas kids get dliated pupils.

 

My daughter's are certainly dilated during the F/F episodes, but stay pretty much dilated all the time- but she's nearly always on the "edge" of F/F anyway.

[dcmom]

Hi Michelle-

 

I am in NWDC, chevy chase neighborhood. My daughter is in a large public elementary- so far they haven't inquired at all about absences. I just send in a note...

 

My daughter does well, socially, at school when she goes- and she lives for that social time with her friends. (she is only in first grade) She used to be really shy, but has made big strides with that- so I really hate to take her out, although I would love to.

 

I didn't realize how impacted she was academically until a couple of days after pex she sat down by herself and did about 5 pages of math work, and read to my mom for an hour. She has been, in the past, much more resistant to homework, and in a bit of a "fog"?

 

Could you consider taking him out now, with a plan to be back at the end of break in January? You could keep up with the work (more or less) at home, and concentrate on healing, resting and joy. Just a thought...

 

Eileen

[bubbasmom]

They have made kids 'home bound' for way less serious issues than this! In homebound each district will have its own requirements, we're still fighting it a bit but I do know the rules. Our district here in St. Louis says the homebound teacher must spend at least 10 hours a week with the child. My son goes part days so he only does part of that. They HAVE to supply you a teacher to bring the work to your house. You need to go to your principal first, district next and they will want a letter from your doctor.

I have a friend that was on homebound just because her child thought school was a waste of time. There's all kinds of reasons. And OCD, doesn't matter how it came about, is a reason to home bound. Then you still have a regular teacher and you're not having to do it. Because frankly, you have enough to do. And if the teacher comes and your child is not up to it, so be it. We did eight weeks and getting ready to extend it six more.

Keep in mind if you take him OUT he WILL flunk that school unless you transfer him to homeschooling or whatever. Homebound HOLDS his place at school.

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

[ajcire]

I used to teach and prior to getting my full time teaching position I used to home teach, paid through the district, a little boy who was homebound do to illness. I was given whatever I needed from his assigned teacher. We have a family friend who has since retired but was superintendent of special services in one of the districts up here and he said that he doesn't know much about Pandas but that he had a child on home instruction due to being just unable to attend school who had been diagnosed with Pandas..