This is it,Iam scared to death for Little v

Posted on: Tue, 12/17/2002 - 9:25am
synthia's picture
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Hello to all

As I type I'am crying,please bear with me.
Got the call last week child find has placed little v in a school for speech class and developmental issues.All I can think about is her life ,The fact I have to let her go into the world with out me.Not only does she have a speech promblem and has a hard time understanding and communacating,I have to trust these people.

I called the school nurse and spoke to her today.They asked me to tell them about little v PA they asked ? like how to tell if she has a anaphylactic attack.Then is when I realized her life could be at stake. They said the other pa kids dont have it has sever as little v.They also told me kids bring there lunch to class with PBJ,I wanted to cry. I have a meeting with the school nurse on fri. and the principle and the asst prin.

Love this site
Synthia

[This message has been edited by synthia (edited April 28, 2003).]

Posted on: Tue, 12/17/2002 - 10:08am
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Synthia - You are doing just great handling this.
Maybe we can help you get a list together of all the things you want accomplished with the faculty and staff so that they are 100% prepared to handle any situation.
I'll start your list with:
Peanut butter for lunches
1) Can this be changed to avoid peanut butter in the classroom? If not,
2a) Where can the peanut butter sandwiches be eaten so as not to affect the surfaces of objects touched by peanut buttery fingers (i.e. the pencil sharpener, the blocks, the pencil crayons, etc) and
2b) Who's responsible for cleaning the hands and desk surfaces of the little peanut butter sandwich lovers? and is it being done?
3) Do you have an Epi-pen trainer so you can train every single custodian, every teacher, librarian, staff, volunteer, principal, secretary, etc? I can send you an Epi-pen trainer so you can train others so at least they know which end to pull. (Just let me know if I can send you a trainer - I'd be glad to.)
4) Where's the Epi pen kept?
Keep the epi-pen close at all times - insist the teacher wear it - not have it locked away in some office closet that is too far from the playground or classroom and fumbling for keys to open cabinets in an emergency can't be much fun.
I don't want to unindate you with Q&A's tonight because you have enough on your mind.
If we can chip away at a list of things you need to get straightened away tomorrow, then you can post here how it is going, and we can add to the list.
You're doing all the right things - keep a journal so when questions pop into your mind, they are handy when you meet up with the teachers, principals, etc., and document what they say they intend to do, etc. etc.
Right now, it may feel like it's going too fast and spinning out of control, but that's why we're here.
Once you control this situation, you'll start feeling much better and really on top of things.
Glad you trust us to help, offer advice, provide insight. You matter to us and we'll help you help keep little V safe.
Cheers Karen

Posted on: Tue, 12/17/2002 - 10:19am
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Syd's mom
Thank you so very much.
I need all of your support.I will start with that and gather my paper work of info to teach everyone.I will get will you tommorrow.
Thanks again I needed to hear from some one.
Love This Site
Synthia

Posted on: Wed, 12/18/2002 - 12:20pm
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Hi to all
Went to little v's school to drop off some paper work for the nurse that cannot be at the fri meeting.What you need to know about pa.
Iwas told that the 3 other pa are in the school not her class.and that pbj brought in from the students,and that is a issue because one of the students has to have a protin snack and thats what he eats.I mentioned to the nurse that the pbj stayes on your breath for 6 hrs,at least 3hrs I know of for sure which means this student can't go around little v after having the pbj. There will be the principal,the vice principal,a dieticianary,and someone else the nurse did not know who.
Love this site
Synthia
[This message has been edited by synthia (edited April 28, 2003).]

Posted on: Thu, 12/19/2002 - 6:49am
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The child who must have peanut butter needs protein? How about a Boiled egg? Hunk of steak (lol) but seriously, what about a little cheese snack and Yogurt? A requirement for peanut butter as the only source of protein shouldn't override a life safety issue of a peanut allergy.
If there are no alternative to this one child having peanut butter, eating it should be in a safe area, area thoroughly cleaned, and cloth put directly in laundry after table wiping, and the child should be hosed down (just joking) but at the very least, he/she should be required to be supervised after his peanut butter while he washes his hands and face with soap,and brushes his teeth with toothbrush and paste.
(His/her mom might find that cheese, yogurt, is much easier than all of this routine around the bringing in of peanut butter)
Hope the days are getting brighter for you.
Cheers,
[This message has been edited by Syd's Mom (edited December 19, 2002).]

Posted on: Thu, 12/19/2002 - 12:23pm
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Re: other sources of protein: I don't know if this helps, but, I saw an article somewhere that the following things have as much protein as PB: a cup of milk, a bagel, a serving of raisin bran.
Also I think goldfish, cracklin oat bran cereal, quaker oat squares cereal, soy nut butter, wheat nuts, animal crackers, pudding all have 4 grams of protein per serving or more.

Posted on: Thu, 12/19/2002 - 12:50pm
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Thanks everyone
I was just getting ready for bed,I thought I might try to get a little extra sleep.HA HA.I've mad the protein list,and gathered my thoughtsand books I made.
I will keep a open mind and listen to what they have to say.In the long run I know I can keep her SAFE,I am strong so is little v.I will try to let everyone know whats happening tomorrow night.
I would also like to say
Thank you Chris I am not sure were I would be with out this site.
Thanks to all
Love This Site{:}
Synthia

Posted on: Thu, 12/19/2002 - 1:53pm
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Hi, Synthia -
Just wanted to wish you the best with little v. Sounds like you are really a terrific mom. I was wondering if you thought of asking if you could meet with the little PBJ lover's mom? You both seem to be worried about your child's health and you never know, if both your kids learn to be understanding of each other's needs they might be able to help each other. Your little v could help remind the PBJ lover that he/she needs to eat protein and maybe help find new "fun" foods that take care of protein problem. I don't know about you, but even kids get bored of eating the same foods every day especially if another child has something else. Who knows maybe the PBJ lover would be happy to meet someone else they could speak to who wouldn't make them feel different for having to "make sure they eat the right food". If it is handled right, they both could feel like they have the power to make a difference in someone's life. It's a great opportunity to teach responsiblity and compassion for others. You and the other mom may find you share a lot of the same feelings. Maybe she is getting flack from other adults about being so "restrictive" about her child's eating habits. You could have a new supportive friend. After all, I'm sure PBJ's mom isn't being this specific just to make little v's life hard. She's probably worried her child's needs will not be taken seriously either. Life has a strange way of introducing people. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Best wishes,
Johanne

Posted on: Sat, 12/21/2002 - 12:06pm
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Hello everyone,
I don't have much time to explain has my dh is going to install my new printer,santa gave me,Thank you Santa.
The meeting went well what was suppose to be myself and the nurse wound up to be 10 people.Boy was I supprised.Need less to say I thank it went well.
She does fall under the 504 I am not sure the way the laid it out .She has a IEP .IHP,IDEA.And some thing else Idont recall right now will get back on that. How ever they have Modifications/accommodations will be incorporated in her IEP A nurse care plan she also has A ECPwill be developed, I also found out,I kinda figured it to be,The child that has to have a protein snack is the parent that I have been speaking with the past year.Her daughter is my daughter friend and her son is the on that I allready Know about. She does not have a promblem with no pbj at school.Got to go DH is ready to hook up the printer later
Love This Site
Synthia( [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 12/21/2002 - 12:26pm
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I'm so glad it seems like the school and the mom who's kids had peanut butter sounds like she's o.k. with other protein alternatives. It's starting to sound like your new year is headed in the right direction - I am so happy for you.
Have fun with the printer - hope it's one of those plug and play kind where it doesn't create problems of it's own in hooking it up!
Warm regards,
[This message has been edited by Syd's Mom (edited December 21, 2002).]

Posted on: Mon, 12/23/2002 - 10:35pm
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Good morning to all
Printer is ready Thank you santa.
The first meeting went well.The next one is set for 1-9-02 To add to the IEP.That was a ? I had Beacuse it is added to the IEP would that change anything? Is that ok?
The teacher is to carry the E-P in a pouch around her waist at all times.
She will carry a cell phone as well.
The children are to wipe there hands upon entering the class room.
A letter will go home for the parent not to sent peanuts or pbj or any related p produts.
I will supply the bendyl 2 one for the class room and one for the nurses station.
The school will nolonder make pb cookies.
The will train all Prek staff for use of the e-pi pen.
I will help ecudate the school and staff.
May is food and allergy asthma awarness week.We will get something going for the school awareness,Staff and students.
Got to go for now
Happy Holidays
Love This Site
Synthia
[This message has been edited by synthia (edited April 28, 2003).]
[This message has been edited by synthia (edited April 28, 2003).]

Posted on: Sun, 12/29/2002 - 2:25pm
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Synthia, sounds like a great meeting and good plans. I would expect to need to monitor it all, and be sure there is proper follow through, but I am so happy for how it is going for you. It really sounds like they are taking things to heart, and making the proper plans. Good for you! It is so stressful, and you have done a great job getting the school readt for your little V. Becca

Posted on: Tue, 12/31/2002 - 1:11am
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Synthia, let me also add my congratulations to how well you have handled this situation. Your Little V is certainly blessed to have such an attentive and strong mother.
Stay strong
Best
Peggy

Posted on: Fri, 01/10/2003 - 9:50am
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Iam back
This is the letter that was sent home to the parents. The school wrote the letter.
Dear Parents of Childern in Mrs ------ Class:
One of the childern in your childs class has a sever food allergy. The child is allergic to all nuts and nut produts. This allergy is somewhat common and each year we find ourselves with a small number of children(who are perfectly healthy,otherwise) with this serious concern. These children cannot eat nuts,nut butter,nut oil,products cooked in nut oil or products that might have nuts in them,(many chocolate candies,even plain M&M have ground peanuts in their chocolate formula).
Reactions may be swift and quite sever,even deadly. Reactions can occur from even touching peanut butter,for instance. It may be as simple as one child,who just ate a peanut butter sandwich,touching the arm of an allergic child with a hand that might have some peanut butter or oil on it. These sever reactions can begin as itchy rashes,hives,a stomachache, or a scratchy throat and very quickly progress to breathing trouble,throat closing,and anaphylaxis. If the response to these symptoms is not quick enough,a child can die.
In a elementary classroom situation,especially a primary grade situation,parents must recruit teachers and school personnel to share in their vigilance. We have medication on hand that will help control sever reactions and our nurse,the teachers,and key staff members are trained in its proper use. The food service manger is alwasy available to parents of allergic childern for advice and concerns since the cafeteria continues to serve thes products to other childern.
We are writing you this letter to go one step futher and hopefully recuit your help, as well with this matter.Fully understanding the popularity of nut products,peanut butter sandwiches or cookies, for instance,we are asking the other parents in these children's classes to voluntarily avoid the use of nuts and nut products in their children's lunches and in their classroom party menus. Again,this is voluntary gesture on your part. Your willingness to cooperate with this request will help make the school environment a safer place Thank you
Sincerely,
-------------
Principal
Sence the letter went hom the teacher has said that more peanut products have been comming in.And that one parent has stated that pbj is the only thing her chid will eat for lunch.
By the way this parent is a police officer.
The teacher has stated that a lot of children drool. They are hirring a pro prof to shadow her around.
I was also told that the IEP over rules the 504.and that it is better. Hummmmm?
The products that are being brought in are PEANUTs, pbj,PB crackers,Trail mix w nuts.
Iam a little short winded will stop for now.
Ad more later.
Boy do I have a lot of work to do,Do I need to get a lawyer for her now?
Love this site
Synthia

Posted on: Fri, 01/10/2003 - 11:38pm
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This is the letter my DH and I would like to sent out.
Dear parents of childern in Ms.------ class
There is a child entering this class who has a SEVER (LIFE THREATING) PEANUT ALLERGY.
Even the slightest trace or ordor of peanuts,peanut oli,or peanut products can cause this child to have a sever allergic reaction,anaphylactic shock and possibly even DEATH.
To avoid the possibility of an allergic reaction,we ask that you PLEASE not send any peanuts or peanut products(including but not limited to: peanut butter,granola,cookies,crackers or snacks containing nuts of any kind)with your child to school as snacks or lunches.
Almost all nuts are packaged in factories that process peanuts so in turn almost all store-bought nuts contain peanut particles and dust which can cause a sever reaction.
We apologize for any inconvenience this may cause,but the consequences could be devastating to the oyher children with allergies.
Thank you
Any sugg?

Posted on: Sat, 01/11/2003 - 9:35am
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Well, I was about ready to say that the letter the school sent out seemed excellent; but then I read that more parents have been sending in peanut products since the letter went home. That is very sad and very scary. I am not sure about an IEP over riding a 504. I know there are others on the boards who have kids who qualify for both. Maybe you can do a search. I believe that Sue (from Sunny Arizona) [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] may have such a child. I do know that you should be able to have a peanut free classroom for your daughter. I think it is especially important for young kids, and particularly in a special needs class where some kids drool. It sounds like whomever wrote the first letter is very understanding of the situation. Now you just need the school to realize that your daughter requires the extra step of a peanut free class. It's so sad when other parents don't get it. Of course if it were their kids... Best of luck to you. Miriam

Posted on: Sat, 01/11/2003 - 1:58pm
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Yes I think a peanut free class room is in order to.
I was so upset at the meeting.I had little v with me which made matters worse.All I could do was chase after her.
I feel very scared for her.
I have made up my mind she will not be go to school on the 16 of this month,there is not enough time for me to put to geather a safe classroom.To get all the paper work done in time.
Going to bed for now.
I realy got to talk to Chris
Love this site
Synthia

Posted on: Sat, 01/11/2003 - 10:42pm
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Iam just bumpping this up so has to get more help.Please ,Some ?
Little v has a IEP,She has a communication problem,and significant comprehension difficulties.
She has speech-language and psychoeducational problem.
The short term objectives are
Understand simple pronouns
Demonstrate understanding of the meaning of at least 20 verbs in context by following directions during structured activities.
Understand spatial concepts susch as in,on,under,next to,in frount,in back
Under standing quantity concepts such as one,all,some,the rest.
She is often echolalic and has difficulty answering ?
Developmentally delayed
Least Restrictive Environment (LRE)
Student frustration and stress
Stydent self-esteem and worth
Distractidility
Need for inincreased supervision for safety
Difficulty completing tasks
need for communication dev
Am I supose to write the 504
Iam not a ecated a nough person to do the right thing for little v.
I feel the need to find some one to make sure se get the right safety for her class.
It was suggest that I no longer attend a nother meeting with out a advocat on her behalf.
Love this site
Synthia

Posted on: Sat, 01/11/2003 - 11:21pm
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I hope this link helps.
[url="http://www.ncld.org/resources/index.cfm"]http://www.ncld.org/resources/index.cfm[/url]
MommaBear

Posted on: Sat, 01/11/2003 - 11:28pm
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[url="http://www.ncld.org/info/legal_overview.cfm"]http://www.ncld.org/info/legal_overview.cfm[/url]
Just another link. Hope you will find it useful.
MommaBear

Posted on: Sat, 01/11/2003 - 11:29pm
river's picture
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synthia, my heart goes out to you. Having a child with special needs is hard enough, but having PA on top of that is even worse.
You said that you need help writing the 504. I'm suggesting that you contact the support people in your neighbourhood. Here in Canada each community usually has a Family and Children Services organization that can help with many things such as this. Although this site can provide plenty of support, you may need a helpful friend who is close-by and can interact with the school on your behalf.
Check your phone book to see what type of support is offered in community, and also, keep coming back here for more support as well.

Posted on: Mon, 01/13/2003 - 3:15am
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Hi Synthia,
I apologize in advance for this very long post. But since you asked for my help, I take your questions and situation quite seriously. My overall sense after reading your posts and others is that you have little in writing regarding awareness, prevention, training and emergency response to food allergy. You need to create a comprehensive IHP (as part of your IEP) or a comprehensive 504 Plan to address anaphylactic food allergy issues. Until I had exactly what I wanted in place, I would not send my child to school.
Here are some of my thoughts…
Just so you know, Child Find is a national requirement of IDEA and 504 (not specific to just FL) that says that all public school districts must actively seek out and provide services for children who qualify. This means that if you want services for your child under IDEA, and your child qualifies, then you can get them. You are obligated by no law to take services. Since the government provides IDEA dollars, there are lots of preschool programs for IDEA qualifying disabilities. But, since 504 does not, there seem to be no “504 preschool programs.” You do not have to enroll your child in any preschool program that you do not want her in.
Question – How many hours a day is this preschool for little V, and at what time during the school hours will this serviced by offered to V? Is this an all day program?
The entire staff should be trained by the nurse or by the school’s medical consultant. You should make this part of your 504 Plan or Part of the Food Allergy Component (IHP) of your IDEA IEP. It is completely the school’s responsibility to train its staff. The law says that there need only be one person on the premises of public school at all times who is trained to administer the EpiPen. It is becoming more common for all school staff to be trained in EpiPen administration.
Question: Why was the nurse not at that meeting? The nurse is an integral part of creating 504 / IDEA accommodations for food allergy. I would have rescheduled the meeting to a time when she could attend. At all 504 Meetings and IEP meetings, “knowledgeable” personnel must be present. And if they are not, you have the right to call off the meeting and reschedule it.
Regarding any type of peanut products brought into the class: Your child’s classroom MUST be a peanut and tree nut free environment. Period. The crux of the issue is this, you really don’t care about what other parents are doing for their children with peanut allergy, all you care about is what you are going to do for your child with food allergy. What other parents have done in the past and what the district has done for other parents in the past is irrelevant. Your child’s food allergy and reaction response is specific to her physiology. Point out to the staff that peanut products in the classroom puts your child’s life in danger, and the allergen must not be present in the classroom. Peanut and tree nut free classrooms are very common in the U.S.
Regarding the number of people at your last IEP meeting: In the future, be sure to call the business day before the meeting, and ask the principal who will be at the meeting, or ask the Director of Pupil Personnel.
Question: Was that your fist meeting (on a Friday) where they formally acknowledged that your child was covered under IDEA for speech?
After your first IDEA meeting where the district grants you protection under IDEA, the district is suppose to send you all paperwork 10 DAYS BEFORE any meeting, by law, so that you have time to review it. Keep this in mind when you are addressing the speech issues.
You stated in a post that “she does fall under 504.”
Question: Did the school tell you this?
It is not uncommon to have a 504 Plan for food allergy issues, and an IEP for other qualifying disabilities like speech. If the district cannot create a descriptive and comprehensive accommodation plan for food allergy under IDEA, then you need to push for 504 Protection for food allergy issues.
You mentioned IEP, IHP and EHP. As part of a child Individualized Education Plan, there should be an Individualized Health Care Plan of which the Emergency Healthcare Plan is a part. If you are going the IDEA route, the IHP must specifically list out all the accommodations and modifications that must be made to the school environment that will make it as save as possible for V. The IHP should be as detailed, descriptive and prescriptive as any 504 Plan that is a stand alone document.
Still, I am not clear that they have offered you an Other Health Impaired designation for food allergy under IDEA. If they are unwilling to put OHI due to food allergy on the IEP as one of the qualifying disabilities, then I would seek out a stand alone 504 Plan for food allergy. You need to get OHI eligibility in writing. If they do not give you the OHI designation for food allergy, then food allergy issues cannot be part of the IDEA IEP! Remember, if it’s not in writing, then it does not exist.
Question regarding the letter that the principal sent home: Who did the principal send this letter home to? To the whole school? How many kids (about) in this school? How many classrooms are in this school, from what grade to what grade?
The principal must send home another letter to V’s future classmates’ parents stating that the classroom environment is a peanut and tree nut free environment. Period. In the letter you posted, I saw that initially the principal lumps nuts and peanuts together. Parents need to know no peanuts and no tree nuts. (In addition to cross-contamination – 1/3 of all kids with peanut allergy also have tree nut) The principal does not ask people not to bring in peanuts into your child’s classroom, she/he tells them not to. And if peanuts / tree nuts still come into the classroom, and the school does not stop them, then the school’s deference could be considered grounds for discrimination.
In any peanut and tree nut free environment, you must be sure to provide an ample and appropriate supply of snacks for any child who accidentally brings in a snack with peanuts. Teachers must be trained on how to read labels. Your child can have a water bottled. All kids can wash their hands with soap and water after snack. All people should wipe with wipes upon entry. Kids can eat snack on paper plates. All these issues must be addressed in your IHP for food allergy or 504 Plan for food allergy.
I saw that you are going to supply Benadryl for the classroom and nurses station. What about the EpiPens? I would like to see the state law in FL for public school that says that the EpiPen has to be locked up in the nurse’s station. My kindergartener has a red travel fanny pack (with 2 EpiPens, Benadryl Liquid and Benadryl Cream) that is on a high hook next to the classroom door. Wherever she goes, the travel pack goes and is carried by a trained adult. A duplicate pack is located in the nurses office. The travel pack is accompanied by a walkie-talkie on the other end of which is the nurse. The nurse always has the walkie talkie with her. These are just some example of the ways we handle the meds issue in the school context.
Question regarding the note that your husband wrote: Are you planning on having the principal send it off with his/her signature? Anything going home to parents must be from the principal to make it legally binding.
Regarding bringing V. to meetings. Not a good idea, and avoid it. It’s hard for you to concentrate at the very least. Call in all your favors to have a trusted friend or relative to watch V on those meeting days.
Regarding an advocate… Who suggested you get an advocate? Advocates are great who know the IEP process. But be sure that the advocate knows food allergy issues inside and out or he/she could be a negative force in a meeting.
Well… those are my thoughts. I usually don’t write such long posts, but there are many issues here. My little one is calling for me.
Take care,
Rhonda
[This message has been edited by Rhonda RS (edited January 13, 2003).]

Posted on: Mon, 01/13/2003 - 5:17am
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This thread has been very enlightening!
I'm just starting to get the paperwork for creating a 504 & IEP for Lindsey, as she'll be starting kindergarten in the fall. Wow! I'm worried that I should have started this a year ago!
Does anyone know how I might be able to in touch with Sue (from sunny Arizona)?
Thanks for everything!
Lori
------------------

Posted on: Mon, 01/13/2003 - 5:52am
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Hi Lori,
Sue's e-mail is public: [email]hay2lee@aol.com[/email].
ps. 504 & IEP = excellent!
Take care,
Rhonda

Posted on: Mon, 01/13/2003 - 6:44am
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Thanks Rhonda!!!
I sent an E-mail to Sue.
It would be great to finally meet someone in
Arizona with the same zeal about PA as I have!

Posted on: Mon, 01/13/2003 - 11:16am
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(This Kim AKA D.H. - Little-V's Daddy) First, Thanx Rhonda for your input and help, We *Really* appreciate it, your support (and others on this forum) have given us lots of hope.
First, I'd like to apologize in advance for what is sure to be a lengthy post, and if I don't abbreviate what should be, I'm a high-end programmer but I almost never use any chat or message boards (even though I write some in the 80s) so please bear with me...
I'd like to answer a few of those questions to save Synthia some time:
1st: We are *NOT* sending her into a situation where her life will be in danger. I know (as I wish the school ppl could understand) that we won't get a second chance if they don't get this right the first time, She's so profoundly allergic that she'd die if they make even one small mistake, and we won't get any do-overs, "I'm sorry" won't help, and I (and Synthia too) *Cannot* live with those odds. If we can't be confident in their abilities to force (and enforce) the nut-free classroom, and their abilities to recognize the start of a reaction, and for more than just one person to be ready, willing and able to administer the epi-pen, I'm *NOT" putting her in there (not being gruff to you ppl, just voicing my position, I'm skeered for her too).
I feel that they are trying to bypass the 504 plan and sweep some of the other things under the rug to skirt some of the responsibility and avoid some of the liability. My personal opinion is that she needs the 504 plan regardless of / in addition to any IHP and IEP. Please tell me if I'm wrong, but I feel the more they "sign off on" the more they'll be forced to try to "live up to" ...?
2nd, the school is supposed to be from 8am till 2pm, the school ppl offered 8 to 10:30 (probably to avoid lunch issues), but her speech and educational needs dictate more school time, and her education / speech therapy is why we're sending her in the first place.
3rd: The Nurse was there at the meeting, so was the nurse fill-in (for when she's un-available), but Synthia said that their entire attitude had shifted from what all they *would* do in the 1st meeting, to all the things they *can't* do in this meeting. It sounded to me like some administrator shot some of it down, or that they decided it would be too hard to implement all they previously intended to do, most important of all, that they couldn't (or woudln't) enforce the nut-free classroom (el-lame-o to say the least).
which brings me to your next paragraph: Yes I fully agree with you, I don't give a flyin' peanut shell about what the previous parents settled for, or what they did for the previous allergic kids, they *MUST* address V's individual needs and not lump her in with the others, she's not like them in any way, she has *no* threshhold to speak of, there is *no* comfort zone, it MUST be nut-free completely !
I would like to compare it (to the parents who insist on sending peanuts)to V. bringing in a bunch of rattle snakes to class, they don't bite her, and she's not scared of 'em, but would the other parents fear for their kids lives? would they feel they have the right to demand "no rattle snakes in my kids class" and "doesn't my kid have the right to a rattle-snake-free classroom?", it sounds absurd but it's just like holding a gun to her little head and just waiting for it to go off. If there was only some way for the other parents to understand the fear from our perspective.
Next, Child Find said that she does qualify for IDEA and 504.
As for the letter, Synthia posted the letter they sent home, only to the kids in her class-to-be. I thought that it was too *voluntary*, in fact it used the word 'voluntary' three times, and 'suggested' on top of it. it was almost like saying "some kids are allergic so you might wanna think about not sending nuts in". I wrote the second letter as a suggestion of how it should be worded so as to get the point across that her little life depends on it. I would hope that the school would either sign and sent it as is, or incorporate it into a *real* letter.
They said that Synthia could help them shop for nut-free snacks (and she said she would gladly shop with them). I don't mind even supplying some extras ourselves just to be sure the other kids aren't shortchanged snack-wise, but the nuts have gotta go !
Yes we are trying to supply Benadryl, along with the epi-pens, originally the epi-pens were to be carried in a fanny pack by the teacher, but now she says she can't afford the fanny-pack (we said we'd supply it), and now they can't accept the Benadryl unless it has a doctor's perscription on it...
we have a close freind (one of only 2 ppl i'd trust her with, and the only one who's local) to watch V. for the next meeting, and I'm a gonna take off work to be there too.
Anyway, Sorry again for the book I wrote, I hope I didn't clog the server and choke the pipeline, I *REALLY* appreciate all the support you ppl are givin' to my wife and sweetheart daughter, Love ya all...
Kim, Synthia's D.H. and V's Daddy

Posted on: Mon, 01/13/2003 - 9:27pm
synthia's picture
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Just Bumping up for more support.
Love this site
synthia

Posted on: Mon, 01/13/2003 - 10:33pm
California Mom's picture
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Wow, Kim - that was a powerful post and you have absolutely no need to apologize for the length. Believe me, you got a lot of important information out into what was actually not that long of a post. Your daughter is so very lucky to have both of you as such caring and informed parents - who are going to stick up for her needs and her rights no matter what. We have always needed a doctor's note for the benadryl - but not a prescription. It shouldn't be too hard to get something in writing from the doctor - I'd imagine. Can your doctor give you some help with getting a peanut free class? Do you have articles you can bring in? It's such a shame that your daughter's educational needs are on hold while you have to deal with all this other stuff.
My best wishes to you: I will be waiting to see how this turns out. I know you will get it done; I'm just sorry you have to go through such turmoil. Miriam

Posted on: Tue, 01/14/2003 - 12:15am
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Hello everyone
Just got a call from little v,s school.
They are asking for a open diologe with the allergist
Any comments?
Love this site
Synthia

Posted on: Tue, 01/14/2003 - 12:52am
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Hi Lori,
You bet [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Hi Mariam,
I read your post all the time. You are a wealth of knowledge.
Best wishes,
Rhonda
Hi Kim & Synthia,
It’s a long one again. Bare with me all.
Kim, my husband, Mike is a software guy too (he developed and runs our site [url="http://www.allergysupport.org"]http://www.allergysupport.org[/url] – we use our site mainly to provide an organized depository of articles and to rally support for national and CT state legislative issues), and he seldom participates on message boards either, though he does post on our site from time to time. I’m glad to see that you have joined in online. Thanks for answering all my questions. That really helps me get a handle on what’s going on.
Kim, read these two articles, I think they will help you and S.
IDEA v. 504: [url="http://www.allergysupport.org/index.php?contents=rhondadocs/Primer.htm"]http://www.allergysupport.org/index.php?contents=rhondadocs/Primer.htm[/url]
504 Outline: [url="http://www.allergysupport.org/index.php?contents=rhondadocs/Outline.htm"]http://www.allergysupport.org/index.php?contents=rhondadocs/Outline.htm[/url]
On a safety level, I’m glad to see that you are holding off on sending V. to school. I agree. It’s too risky at this point. On a tactical level, I believe it is a good decision as well since by not sending V. or signing anything, you have not formally agreed to the IEP they have created which roles V. food allergy needs into an IHP.
I agree with you Kim about the school trying to bypass a 504 designation. When I first responded to Synthia, I got the impression that they wanted to give you an OHI designation under IDEA. And that would have been okay. But now after your post it is clear that they want to offer you an IHP with no OHI disability designation to back it up.
I wholeheartedly think a 504 Plan for food allergy and a separate IEP under IDEA for speech is the way to go. See the post I made on the other thread about this point:
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000378.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000378.html[/url]
I have always supported an IHP/ECP as part of a 504 Plan rather than a stand alone IHP.
Now, the question you have to ask yourself is, “why”? Why do they not want to go the 504 route. This will help you to strategize. Believe it or not, most schools do not know where to even begin writing a comprehensive 504 Plan for a child with severe food allergy. This may be a reason. They are intimidated by it. They write them for ADHD when the modifications and accommodations have to do with educational performance and learning issues. However many don’t know the other side of 504 which simply addresses the learning environment issues. They may have always given kids with food allergy a stand alone IHP, and no parents protested. I’m just trying to give you some angles to think about. So I think that the school has not done right in the past by the other kids with peanut allergy, and they are afraid to admit this. You will have to lead the way, and show them how it is done.
Question: What group of people or organization do you define as is “Child Find”? Do you have written documentation of Child Find stating that V. is eligible for protection under 504. I’m trying to get a sense of who these people are and their connection to the Director of Pupil Personnel for your school district and the principal of your school.
Got it…8:00 to 10:30 for V. I think it’s better to start of with this smaller amount of time anyway. Got it…the nurse was there.
Question: Is this fill-in an RN as well? Is she formally trained in anaphylaxis recognition and EpiPen administration?
The law does say just one person has to be trained. The issue is that the teachers’ unions, the American Federation of Teachers (AFT) and the National Education Association (NEA) have been able to bargain out EpiPen training requirement for public schools. This will be a hard issue to get around. But, regardless of whether or not the rest of the staff is willing to administer the EpiPen, the entire staff must be trained in recognizing the symptoms of anaphylaxis and the emergency response protocol. You can certainly push and win that one.
Ya know Kim, I was skeptical about how that meeting was going to go. I did not get a good feeling when S. said that 10 people were at the meeting. It sounded like an ambush to me. And the fact that the principal sent home the “voluntary compliance” letter is alarming. Again, I think this was a tactical move on his/her part – (administrators are also politicians you know). You can fix this. In the new letter that goes home, the principal can simply state that : “Due to the fact that this child is contact, inhalation and ingestion allergic to peanut and tree nuts, and after consulting knowledgeable parties about this issue, we are requiring that this classroom a peanut and tree nut free environment, effective immediately.” This will allow the principal to save some face.
I think that Cynthia should insist that she do all the shopping for the preschool. I use to do all the shopping for our preschool (total of 51 kids for all three classes of 3 and 4 year olds). I use to give up my Sunday for a year, but it was well worth it.
Okay…You need a plan. I don’t know what you have done in writing up to this point with the 504 Coordinator, but sometimes it’s necessary to back track so that you are on solid legal footing. This is what I would do. You need to go by the book.
******From this point forward, you need to separate all IDEA IEP Speech meeting from 504 Food Allergy Meetings. Okey Dokey. That means, you will have to refuse to discuss food allergy issues at your IEPs for speech, and that you will insist on having a separate meeting for food allergy. Even if the meetings are broken up by a 15 minute break, that’s fine. Additionally, the speech therapist does not need to attend a 504 Food Allergy Issues Meeting. And the nurse does not need to attend and IEP Speech / Development Meeting. The classroom teacher and principal should be at each.
**Speech**
1. You know that you already have an IDEA designation for speech / development. So nothing to do there.
**Getting Your 504 Designation Formalized for Food Allergy**
1. You get a copy of V.’s CAP RAST Results
2. You get a carefully crafted letter from your doctor that includes all the major verbiage of 504. Tell your doctor that you are simply asking him/her to state the facts. The doctor simply is putting in writing what he and you already know. The language of your doctor’s letter is crucial. See this outline that I used that worked for us, Ryan’s mom and lots of others.
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000431.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000431.html[/url]
3. Write a “Request for Protection under Section 504 Letter” addressed to the Section 504 Coordination (also called the Director of Pupil Personnel).
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000497.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000497.html[/url]
4. Get a written statement from “Child Find” stating that V. is protected under Section 504.
5. Send the CAP RAST Test Results, Doctors Proof of Allergy Letter, Child Find Statement and your Request for Protection Under Section 504 Letter to the 504 Coordinator.
Kim up to this point, you have sent nothing to the 504 Coordinator in writing regarding protection under Section 504. And it is the 504 Coordinator who is legally the person that the law requires addresses issuing a 504 Designation.
Remember, if it’s not in writing it does not exist.
Furthermore, the school nurse and the school principal do not have the legal authority (unless one of them is the 504 Coordinator – which I doubt) to deny you 504 Protection for V. So, start at the top. Once you have presented them with you’re your “packet of letters” it will allow the principal to save face when she/he has to write a new letter to V. future class.
It’s difficult to work backward, but many parents approach school districts with the belief that what they want and need will be met with open arms. What you are going through has happened to many parents on these boards. Trust me, once you start putting your request in writing, and start separating the 504 and IDEA issues, they will realize that they cannot push you around.
Next, the 504 Coordinator or the principal of the school should contact you to say yes, or no to 504. Then, you tell them that it is customary in our community to put together a 504 Plan Proposal. When you get to that step, we’ll help you out there too. So, you are looking at a month probably before these issues are resolved, but I really believe this will all be worth your time and efforts in the long run.
Best wishes,
Rhonda
[This message has been edited by Rhonda RS (edited January 14, 2003).]

Posted on: Wed, 01/15/2003 - 1:30am
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Hello every one
The school called yesterday and ask if I would sign a release for a open diologe for the school nurse and doc.
Any IMO?
Love this site
synthia

Posted on: Wed, 01/15/2003 - 6:55am
California Mom's picture
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I have never heard of a school asking for this before. Quite frankly I find it outrageous! A letter from the doctor should suffice, and you should have access to it before the school does. I think they want the doctor to say that you and your dh are over reacting. Do not sign it!!!!! I frankly cannot believe the problems these people are giving you. Especially in an environment with pre-schoolers with special needs. These people are making my blood boil. [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] Miriam
p.s. Rhonda, I cannot tell you how flattered I am by your compliment! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Thanks

Posted on: Wed, 01/15/2003 - 7:11am
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Hay
I and my DH are not going to sign it.
I've called the nurse and she says she want the doc to give the sign a symptoms of anaphylaxis,Boy is that scarry.
She also told me she is waiting for this for before she can train the PreK staff and par proffsional.Iam going to take the form to the school fri.
I have asked her to put it in writing just what she wants and I will give it to the doc.
I plan on copying some anaphylaxis symptoms for everyone.
Thanks for everyones imput
Love this site
Synthia

Posted on: Wed, 01/15/2003 - 7:39am
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Synthia, and everyone: [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
These are very important links that could help you out. Please, please, please, read them. They could prove invaluable. As an RN myself, I hold "Position Statements" by associations in my field in very high regard. I also pay attention to "Position Statements" from other medical professions as they can affect my patients as well as me. Just click them to get to the full document.
[url="http://www.nasn.org/positions/Epinephrine.htm"]http://www.nasn.org/positions/Epinephrine.htm[/url]
POSITION STATEMENT
Epinephrine Use in Life-Threatening Emergencies
*********************************************
[url="http://www.nasn.org/positions/allergy.htm"]http://www.nasn.org/positions/allergy.htm[/url]
POSITION STATEMENT
The Role of School Nurses in Allergy/Anaphylaxis Management
*********************************************
Another very helpful link. I read it from top to bottom.
[url="http://www.aaaai.org/members/academynews/1998/10/positionstatement.stm"]http://www.aaaai.org/members/academynews/1998/10/positionstatement.stm[/url]

Posted on: Wed, 01/15/2003 - 9:39pm
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Sythina,
I am with Mariam 100%.
Please be careful about what you present to the school in writing. The doctor's letter could make or break your case for getting a 504 Designation. There is one court case out there where the doctor’s testimony actually hindered parents getting what they wanted for their child with food allergy. The doctor is considered "an expert," and if the doctor does not have the correct language in the letter, then the school can deny you 504 protection (IDEA under OHI as well if you are going that route) based on his statement.
Please see my above post and the links I have provided.
Best Wishes,
Rhonda

Posted on: Wed, 01/15/2003 - 10:45pm
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Rhonda,
You asked:
"Question: Is this fill-in an RN as well? Is she formally trained in anaphylaxis recognition and EpiPen administration?"
Whether this nurse is a "fill-in" or not, (I assume you mean someone supplied by an agency or temp service) she (as a licesened RN) should be able to function in the same capacity as the requirements of the person she fills in for. Actually, if she is not able to, she should refuse the assignment. Her liability is the same either way. Agency nurses are usually expected to have a bit of experience in their particular specialty since they are assigned to many different locations (usually). As for being formally trained in anaphylaxis and epi pen administration. As a nursing student, I was required to learn the pathophysiology of anaphylaxis and demonstrate the ability to administer Itramusclular, subcutaneous, and intradermal injections. Epinephrine is used quite often in "code-blue" and I am formally trained in ACLS, (advanced cardiac life support), now scheduling myself to take PALS (pediatric advanced life support), and of course am formally trained in CPR (cardio pulmonary recsusitation). I have many certs in equipment management such as intra-aortic balloon pump management, but that was required by my employer. However, there is much basic knowledge and expereince a registered RN is required to have before graduating and passing boards. I hope the links were not overlooked.
[This message has been edited by MommaBear (edited January 16, 2003).]

Posted on: Thu, 01/16/2003 - 11:31am
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Hello
Please tell me when does the crying stop,when does the fear stop,
Iwant to let her go to school.
Iam not alone in this.
Love this site
Synthia
[This message has been edited by synthia (edited June 01, 2003).]

Posted on: Thu, 01/16/2003 - 1:42pm
Dawn's picture
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I have trouble with it too, Synthia. I go to my son's school everyday at lunchtime to make sure he is staying away from peanut products. I keep telling myself that anything can happen to anyone, not just my pa child (I have 2 other children at that school), but while I try to suppress the fear and worry, horrible thoughts still come to mind. All the "what if" situations. It doesn't consume me, but I do worry. So no, you are not alone. These are our precious children.
Maybe once there is a plan at Little V's school, you'll feel better about it? Is there some way you can get to know the teachers better? Can you volunteer in the classroom? I found that things went better with the teacher I knew. They didn't want to inconvenience themselves at another school, where they didn't know me.
It can all be very overwhelming, but we are here for you! Hang in there!{{{{{hugs}}}}}
------------------
Be safe,
~Dawn~

Posted on: Thu, 01/16/2003 - 11:16pm
Rhonda RS's picture
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Hi MommaBear,
Hope all is well. I hear you, but the intent of my question was more from a legal standpoint. I was not concerned (as I posed the question) about who was going to administer the meds. I was asking because IDEA and 504 federal regulations require that “knowledgeable” individuals be present at 504 and IDEA meetings. So, if there had been a “fill-in” at the meeting and this person does not hold the appropriate credentials, she may not be eligible to be defined legally as a “knowledgeable” person. In that case, I would not move forward with any meeting until I was sure I had the appropriate and legally qualified individuals at a 504 or IDEA meeting.
Take care,
Rhonda

Posted on: Fri, 01/17/2003 - 12:19am
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Synthia - hugs to you. For me, I have a lot of fear before every "new" situation. My daughter is 8, now, so we've been dealing with it for a while. Once she's in the new situation and I can see that everything is going well then I am not as fearful. But, truth to be told - and I have mentioned it on other threads - I actually am taking anti-anxiety medication which is helping me a lot. I am not sure how I would be doing without it. (Of course - it's not the pa that [b]caused[/b] me to have trouble with anxiety. The pa just exaccerbated it.) With your daughter so young and vulnerable, and having had such severe reactions in the past: it's no wonder you are a bundle of nerves. It's tragic that little V can't get the help she needs because of this school's unwillingness to provide the safe environment she needs.
What does her doctor say about all this? Does he agree with your position on the peanut-free classroom? I know there are both wonderful and lousy doctors out there when it comes to dealing with pa. I'm just wondering how yours is, and if that's a place you can get some much needed back up.
Take care. Lots of hugs, Miriam

Posted on: Fri, 01/17/2003 - 9:25pm
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Rhonda,
I hear you too [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
At our 504 meeting(s), the nurse always was curiously physically absent. Of course, they did bring a lawyer. As a matter of fact, she was physically absent from the IDEA meeting as well. (IDEA meeting was during same time frame) My husband and I voiced concern over this many times (absence from the 504 meeting) during the 504 meeting, which was tape recorded. As a nurse myself, I found this appaling. However, I ENJOYED INQUIRING TO HER WHEREABOUTS FREQUENTLY, OFTEN, AND A LOT. No other person with the same credentials was substituted. We proceeded with the meeting since, my husband being a paramedic, and I being an critical care nurse, were confident we could advocate for our child in that particular arena. An advocate, we did. I am not a school nurse, nor have I ever been employed as one. But we understood the need at hand. (I was required, as part of my nursing clinicals, to spend some time with a school nurse [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] ) When it became increasingly apparent we would probably have to become parties to a legal battle, we withdrew. Even if we achieved the action we desired, we could not, as parents, bear the thought of entrusting our child's life to those who would only comply with requests through legal action.
A favorite link I refer back to often:
[url="http://www.aacn.org/AACN/memship.nsf/965028604675cdb88825680b006c88fa/7eda4030b16280f28825680a0071c4a8?OpenDocument#%5B%3Chr%3E%5DAn%20Ethi"]http://www.aacn.org/AACN/memship.ns f/96...%3E%5DAn%20Ethi[/url]
Do you think these values could be "universalized"???
[This message has been edited by MommaBear (edited January 18, 2003).]

Posted on: Sun, 01/19/2003 - 1:08am
Rhonda RS's picture
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Hi MommaBear,
I visited the link you provided above for the American Association of Critical-Care Nurses (AACN). I know that many school nurses belong to the National Association of School Nurses. Is it common for school nurses to belong to the AACN as well? Membership in both of these professional associations is voluntary, correct? Do you feel one is better than the other? Perhaps one of the resources a parent might want to present to “an uninformed school” is philosophy, beliefs and value statement of AACN. –We have a wonderful school nurse who is an RN who adores Katie. I am so appreciative of her professionalism, dedication, support and gentleness. Katie knows that if she needs *anything* the school nurse is always her safety person.
Take care,
Rhonda

Posted on: Sun, 01/19/2003 - 5:17am
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Rhonda,
Thank you for your reply [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
To quote you:
"Perhaps one of the resources a parent might want to present to an uninformed school is philosophy, beliefs and value statement of AACN."
I am a tired, busy, mother, wife, daughter, friend, neighbor, and yes, nurse. Hopefully, someday, I will be a tired, busy grandmother. I love the reasons I am tired, though. I believe the philosophy, beliefs, and values of the statement are lovely ones. When I get really really tired, I read it again. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] It reminds me how lucky I am that God chooses to let me live another day.I wear a lot of hats, and I make an effort to apply the statement to my other roles in life.

Posted on: Sun, 01/19/2003 - 2:48pm
synthia's picture
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Hello every on
For once I let go of the PA thing.
I went out and thought of my self.
I won tickets to the Improve from wrmf radio station.
It was almost like it was ment to be I need this.
I need to laugh about somthing and to let go of some thing that was so contrtoling In my life.
I feel better even though I can't type.
I feel great.
I feel I can go on.
Parents of PA childerin its ok, Justremember you can do this ,But Take time for your self.
It can be scarry,but take a break.
Find some one that can care for your kids and take a break from it.
Laugh enjoy life.
I can't Thank WRMF Radio station for giving me this chance to take a break from it all.
Thanks WRMF
Love this site
Synthia

Posted on: Mon, 01/20/2003 - 1:11am
Dawn's picture
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Good for you, Synthia! We all need to remember to take care of ourselves, too. After 8 years of not going out with dh, except, perhaps twice, we have found a babysitter and have started "dating" again. So much fun!
Just wanted to point out - whoever you left little v with - consider that person in your comfort zone!
When I think of things or situations where feel safe, I feel like I have control and I feel so much better! Maybe you will, too.

Posted on: Mon, 01/20/2003 - 10:53am
synthia's picture
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I left little v with her dad at home.
I went with a friend of mine.
Our next trip to Improv is in a bout 2 weeks with DH and my self.
Some one will watch little v and her DB + DS at our house.
About not going out,My dh and my self have not had a night out since 1996.Iam looking forward to this date.
Thanks for all your support,We can do this!
Love this site
Synthia
[This message has been edited by synthia (edited April 28, 2003).]

Posted on: Thu, 01/23/2003 - 1:24am
synthia's picture
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Hello everyone,
Well I think we are making progress.
I have a letter from DD doctor stating that sh has a sever peanut allergy,and carries a Ep-pen,she is not allowed to be in the room with other children eating peanut products.
Iam going to allow one call fron the district doc to DD doc to make things clear.
Iam going to drop the paper work off on the 28 of this month.
Any IMO?
Love this site
Synthia
[This message has been edited by synthia (edited April 19, 2003).]

Posted on: Fri, 01/24/2003 - 11:06pm
synthia's picture
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Hello everyone
Just bummping this up.
Would like any sugg. or IMO
Little v is still not in school yet.
Waiting for Pre-K traing and dist.school doc to talk to little v's doc.
Love this site
synthia

Posted on: Thu, 01/30/2003 - 6:54am
synthia's picture
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Hello everyone
Just a up date
Dropped off all paper work to her school today.
Still working on the 504.
The nurse keeps asking me the same thing over and over again.
The bendryl and epi-pen.
I've told her if contact: wash her with warm soap and water and then do bendryl.if the area that has been contacted spreads or other symponts occure give Epi-pen and call 911
Sorry every one got to go for now been very sick.Started on mon. I try to get DH to type more.
Love this site
synthia
[This message has been edited by synthia (edited April 19, 2003).]

Posted on: Sun, 02/02/2003 - 11:56pm
synthia's picture
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Hello all
Just a up date
DH is writing a letter to request a PN/TN
free class room.
I've droped off the paper work to the school last week.
The nurse is still askeing about the anaphylaxis when to adim, the EP-Pen.
Boy does she have me worried.
Love this site
synthia

Posted on: Mon, 02/03/2003 - 12:20am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

"The nurse is still askeing about the anaphylaxis when to adim, the EP-Pen."
Ask her to put her concerns in writing.
Ask her if it is ok to forward it to your child's physician (the one who manages the PA allergy).
I would be interested in her response.
MommaBear

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