Going back to school after Christmas break

[mk8898]

Our son (9 turned 10 in Aug) had his first PANDAS episode at the end of May; luckily we were able to immediately get a diagnosis. We tried sending him back to school in August, but he wasn't ready so we have been homeschooling since. He is currently taking 600mg of Augmentin twice a day, vitamin D and of course a probiotics. He is doing great.

I work part time so the days that I work he is homeschooled with another family; however, due to the economy my helper is going back to work, which leaves us with no place to send him on the days that I work. I am soo scared about sending him back to school especially since he is doing so well and has his life back.

I have no worries about his school, they have been awesome. We filed out a 504 plan which allowed him to go in late or miss days if needed.

The issue is ME and being able to let go!!! He spent the night at his best friends house last weekend. It was a huge step.

 

The main reason I'm writing is b/c I would like to send a letter home to the parents in his class regarding strep. I want it to be short and simple like . . . . IF YOU THINK YOUR KID HAS STREP THROAT, DO NOT SEND HIM/HER TO SCHOOL . . . DUH.

Has anyone sent this type of letter out to parents and/or the school?

 

Thanks Guys, Michelle

[ajcire]

I would talk to the school about that before you do it. Even having a child with PANDAS I think it would strike a nerve if I received that kind of a note from a parent. I know you weren't including the duh part but it would strike me as duh no matter what because clearly that should be obvious to not send your child to school if you suspect they have strep. I would not mind a note from the nurse with a general explanation that a child (no names need to be mentioned) in my kids class can have serious effects from strep so could we please take any sore throats or strep symptoms seriously before sending our child to school or something like that.

 

Not to scare you or anything but unfortunately my pandas ds does not show any strep signs when he has it. I only know from his behavior and because often my daughter gets it around the same time and does show the symptoms so I know when to have him tested... BUT there have been several times where I had no idea he had it and he had been in school with it. I only found when I decided to culture him because someone else had it that had been around him.

 

 

 

Our son (9 turned 10 in Aug) had his first PANDAS episode at the end of May; luckily we were able to immediately get a diagnosis. We tried sending him back to school in August, but he wasn't ready so we have been homeschooling since. He is currently taking 600mg of Augmentin twice a day, vitamin D and of course a probiotics. He is doing great.

I work part time so the days that I work he is homeschooled with another family; however, due to the economy my helper is going back to work, which leaves us with no place to send him on the days that I work. I am soo scared about sending him back to school especially since he is doing so well and has his life back.

I have no worries about his school, they have been awesome. We filed out a 504 plan which allowed him to go in late or miss days if needed.

The issue is ME and being able to let go!!! He spent the night at his best friends house last weekend. It was a huge step.

 

The main reason I'm writing is b/c I would like to send a letter home to the parents in his class regarding strep. I want it to be short and simple like . . . . IF YOU THINK YOUR KID HAS STREP THROAT, DO NOT SEND HIM/HER TO SCHOOL . . . DUH.

Has anyone sent this type of letter out to parents and/or the school?

 

Thanks Guys, Michelle

[sf_mom]

I sent a note to all the parents of our son's class with the teacher's approval. I did explain in more detail without using the WORD PANDAS that would only bring confusion, fear, judgement if people looked it up on-line. So far everyone has been extremely helpful, worried and compassionate to his illness (and probably thankful their child isn't sick).

 

Here is a copy of what I wrote.

 

Some of may know that Corsa has been very ill and recently diagnosed with auto-immune disease associated with streptococcus bacteria. For those of you that don’t know, I thought it important to explain and request your assistance as we balance our desires for Corsa to attend school and keep him well.

 

In brief, we are now finding out that Corsa was exposed to Rheumatic Fever in the fall of 2007, he and his brother both got sick at the time, his brother being hospitalized for six days. Corsa seemed to get better on his own and went untreated. Six months after exposure we saw a delayed response but didn't figure it out what was wrong until this last summer when he got even sicker. Unfortunately, RF is not on many Dr.'s radar because of its rarity. RF carries a stain of streptococcus bacteria that is resilient and has since wiped out his immune system and he now has lingering cross-reactive antibodies that attack his brain, joints and heart when sick. We are seeking continued treatment for him over the next two years by boosting his immune system through donor antibodies and preventing further streptococcus infection by a daily antibiotic. BUT, if he should contract Strep Throat, Scarlet Fever, Syndenham Chorea (rare) or Rheumatic Fever (very rare but most severe) again.... the lingering cross-reactive antibodies will respond, increase and go on attack again.

 

It is important for us to know when any strep related illnesses are present in the class. If you don’t mind notifying Mrs. Wynn or myself of any strep related illnesses your child has throughout the year we can then manage appropriately from our end by doubling up on his daily antibiotic or pulling him temporarily from the school environment. I will add, Corsa is NOT contagious but if you should have further questions please feel free to contact me.

[sww817]

SF Mom- That letter is great. I may have to borrow parts of that in the future. One question, did the parents understand that you needed to know even if they thought the child had not been in the school environment when they were sick? Were the parents cooperative?

[ajcire]

That is a great letter that I would most definitely not be offended to receive.

 

 

 

 

I sent a note to all the parents of our son's class with the teacher's approval. I did explain in more detail without using the WORD PANDAS that would only bring confusion, fear, judgement if people looked it up on-line. So far everyone has been extremely helpful, worried and compassionate to his illness (and probably thankful their child isn't sick).

 

Here is a copy of what I wrote.

 

Some of may know that Corsa has been very ill and recently diagnosed with auto-immune disease associated with streptococcus bacteria. For those of you that don’t know, I thought it important to explain and request your assistance as we balance our desires for Corsa to attend school and keep him well.

 

In brief, we are now finding out that Corsa was exposed to Rheumatic Fever in the fall of 2007, he and his brother both got sick at the time, his brother being hospitalized for six days. Corsa seemed to get better on his own and went untreated. Six months after exposure we saw a delayed response but didn't figure it out what was wrong until this last summer when he got even sicker. Unfortunately, RF is not on many Dr.'s radar because of its rarity. RF carries a stain of streptococcus bacteria that is resilient and has since wiped out his immune system and he now has lingering cross-reactive antibodies that attack his brain, joints and heart when sick. We are seeking continued treatment for him over the next two years by boosting his immune system through donor antibodies and preventing further streptococcus infection by a daily antibiotic. BUT, if he should contract Strep Throat, Scarlet Fever, Syndenham Chorea (rare) or Rheumatic Fever (very rare but most severe) again.... the lingering cross-reactive antibodies will respond, increase and go on attack again.

 

It is important for us to know when any strep related illnesses are present in the class. If you don’t mind notifying Mrs. Wynn or myself of any strep related illnesses your child has throughout the year we can then manage appropriately from our end by doubling up on his daily antibiotic or pulling him temporarily from the school environment. I will add, Corsa is NOT contagious but if you should have further questions please feel free to contact me.

[sf_mom]

They've been very cooperative, curious and worried... I've even been notified when one mother entered the room assisting the class and tested positive for strep several days later. Unfortunately, THERE IS A LOT OF STREP and it makes my head spin with worry. BUT, at least I get notified. AND, I'm always happy to explain in more detail to those that are curious...... feel like I'm getting the word out little by little.

 

-Wendy

[thereishope]

It depends on the school district. With ours, I cannot send a note home to parents, but I do get a call if a child in either of my kids class calls in sick with strep. I don't think they are even suppose to do that, but they do.

 

Before you send anything to school, ask the office for permission and know that, unfortunately, many parents will simply discard it and forget about the request in the first place.

 

Take the peanut allergy. Every year, I get that note sent home and the teacher verballly telling parents that some kid has a severe nut allergy. Please don't send bakery items into school for sharing. Parents continue to do it. They forget. The teacher is amazed whenever I send treats w/ a note reassuring them it is completely peanut/nut free.

 

My kids do not have a nut allergy.

 

But then as I type this, I say to myself...If they can send home a note about a nut allergy why CAN'T they send home a note about strep? Great, something else for me to fight.

[thereishope]

If you do send home a note, I suggest adding that PANDAS is not contagious. It is an autoimmune disorder.

[sww817]

The only other thing I would say is don't forget that strep might only be part of the picture. It is definitely the biggest problem (well I think) but then there are other triggers. My child has an episode with any virus, infection, etc. And if the school won't send home a letter, maybe you could approach the PTA. I wonder if they have to follow the same rules???

[mk8898]

I would talk to the school about that before you do it. Even having a child with PANDAS I think it would strike a nerve if I received that kind of a note from a parent. I know you weren't including the duh part but it would strike me as duh no matter what because clearly that should be obvious to not send your child to school if you suspect they have strep. I would not mind a note from the nurse with a general explanation that a child (no names need to be mentioned) in my kids class can have serious effects from strep so could we please take any sore throats or strep symptoms seriously before sending our child to school or something like that.

 

Not to scare you or anything but unfortunately my pandas ds does not show any strep signs when he has it. I only know from his behavior and because often my daughter gets it around the same time and does show the symptoms so I know when to have him tested... BUT there have been several times where I had no idea he had it and he had been in school with it. I only found when I decided to culture him because someone else had it that had been around him.

 

 

 

Our son (9 turned 10 in Aug) had his first PANDAS episode at the end of May; luckily we were able to immediately get a diagnosis. We tried sending him back to school in August, but he wasn't ready so we have been homeschooling since. He is currently taking 600mg of Augmentin twice a day, vitamin D and of course a probiotics. He is doing great.

I work part time so the days that I work he is homeschooled with another family; however, due to the economy my helper is going back to work, which leaves us with no place to send him on the days that I work. I am soo scared about sending him back to school especially since he is doing so well and has his life back.

I have no worries about his school, they have been awesome. We filed out a 504 plan which allowed him to go in late or miss days if needed.

The issue is ME and being able to let go!!! He spent the night at his best friends house last weekend. It was a huge step.

 

The main reason I'm writing is b/c I would like to send a letter home to the parents in his class regarding strep. I want it to be short and simple like . . . . IF YOU THINK YOUR KID HAS STREP THROAT, DO NOT SEND HIM/HER TO SCHOOL . . . DUH.

Has anyone sent this type of letter out to parents and/or the school?

 

Thanks Guys, Michelle

 

 

Well, you would be surprised at how many parents in the last 6 months that I have spoke with that have sent their children to school or school activities that have told me in conversation that "I know strep is going around, I think my child might have strep".

[mk8898]

I sent a note to all the parents of our son's class with the teacher's approval. I did explain in more detail without using the WORD PANDAS that would only bring confusion, fear, judgement if people looked it up on-line. So far everyone has been extremely helpful, worried and compassionate to his illness (and probably thankful their child isn't sick).

 

Here is a copy of what I wrote.

 

Some of may know that Corsa has been very ill and recently diagnosed with auto-immune disease associated with streptococcus bacteria. For those of you that don’t know, I thought it important to explain and request your assistance as we balance our desires for Corsa to attend school and keep him well.

 

In brief, we are now finding out that Corsa was exposed to Rheumatic Fever in the fall of 2007, he and his brother both got sick at the time, his brother being hospitalized for six days. Corsa seemed to get better on his own and went untreated. Six months after exposure we saw a delayed response but didn't figure it out what was wrong until this last summer when he got even sicker. Unfortunately, RF is not on many Dr.'s radar because of its rarity. RF carries a stain of streptococcus bacteria that is resilient and has since wiped out his immune system and he now has lingering cross-reactive antibodies that attack his brain, joints and heart when sick. We are seeking continued treatment for him over the next two years by boosting his immune system through donor antibodies and preventing further streptococcus infection by a daily antibiotic. BUT, if he should contract Strep Throat, Scarlet Fever, Syndenham Chorea (rare) or Rheumatic Fever (very rare but most severe) again.... the lingering cross-reactive antibodies will respond, increase and go on attack again.

 

It is important for us to know when any strep related illnesses are present in the class. If you don’t mind notifying Mrs. Wynn or myself of any strep related illnesses your child has throughout the year we can then manage appropriately from our end by doubling up on his daily antibiotic or pulling him temporarily from the school environment. I will add, Corsa is NOT contagious but if you should have further questions please feel free to contact me.

 

 

Great letter, thanks soo much for posting it.

 

I have a great relationship with the school. They have been very supportive along with the children and families in his class. Everyone is happy that he is able to return!

 

Thanks again for the letter.

 

Michelle

[mk8898]

The only other thing I would say is don't forget that strep might only be part of the picture. It is definitely the biggest problem (well I think) but then there are other triggers. My child has an episode with any virus, infection, etc. And if the school won't send home a letter, maybe you could approach the PTA. I wonder if they have to follow the same rules???

 

 

Well, I'm a PTA Board Member,so I would vote a YES for sending home a letter! LOL