A recap and update:
Last Wed. I found that the school nurse changed the doctor's orders so Reece didn't go to school on Thurs or Friday. On Monday we took him with the intent of staying with him. The school director met us at said she'd like to speak with us. The first thing she said was "I called your doctor and now I they can't talk to me??" she was pretty upset. I had called the doctor's office telling them I didn't want any medical info. given out beyond the doctor's orders for the school. So, I told the school director that I didn't just say she couldn't have access but that nobody could. She calmed down.
Then, she handed us a typwritten letter stating she apologizes for the misunderstanding with the nurses orders and that she called Reece's nurse and confirmed orders and had them typed out. The letter also stated the "accomodations" they've made to keep Reece safe. So, I took that letter up to Reece's nurse to look over before signing it and she said it was great.
Anyway, I had a 2 hour appt. with Reece's Allergist and nurse yesterday. (Well, saw the nurse for most of that time and the dr. for about 15 minutes ). We went over all the paperwork and got things very worked out and cleared up.
She rewrote the orders several times because each time she wrote them we found something that was confusing. It's because of the forms they use, lol! (They're going to revise them now thanks to us ) The school director asked me if I'd take a few questions to the nurse/doctor so the nurse and doctor answered those too.
One thing that bothered me is the nurse assumed I was "on guard" and that I was overbearing to the school which is not the case at all. I told her for every one of those "accomodations" I've had to fight but it only got that way after being told "NO" for everything. That sort of bothered me but I didn't let it get me stressed, kwim?
Oh, this nurse isn't the one who has been dealing with the school but she and the other nurse and the doctor had a meeting about Reece's case prior to our appt.
We got the orders clear and I think the school is going to feel a lot better with everything. What was tripping everyone up was the word "symptoms" and "anaphylactic symptoms". Plus their form was very confusing! Even the nurse got confused at one point and said "Wow, even I'm confused!!".
So, the orders are:
If facial hives or facial swelling develop OR ingestion/contact (with any nuts or "may contain traces" of nuts is suspected or known:
Administer Benadryl 3.5 tsp
Observe patient closely (I'm supposed to tell them this means having an adult sit with Reece and watching him the entire time)
Administer Epi Pen if further *symptoms occur
Call 9-1-1- and transport to ER
*symptoms:
Itching and swelling of the lips, tongue or mouth
Hives, itchy rash, and or swelling about face or extremities
Itching and or sense of tightness in the throat, hoarseness, hacking cough
Nausea, abdominal cramps, vomiting and or diarrhea
Shortness of breath, repetive coughing and or wheezing
"Thready pulse", passing out, feeling impending doom
I think if the school gets confused about anything it will be this part: "If facial hives or facial swelling develop"..... I need to let them know that means if he breaks out in hives but they have no idea if he's eaten or been around nuts. (Meaning not suspected or known)
The questions from the school were good questions. (I understand they had a meeting and these questions were asked in the meeting) One was if they give Reece the Epi and he didn;t really need it what would happen. The answer is that there may be no effect, he may feel antsy, increased heart rate. Another question they asked is if the give him the Epi and 911 arrives and they say he's fine should they still call us to pick him up. Umm. . . **** yes Doctor's order was nicer.. he said "Yes, Epi can wear off and symptoms may return". Normally 9-1-1 would transport to an ER anyway. Another good one was that if Reece is out in the yard or at PE and gets shortness of breath could they try the inhaler first (due to his asthma). The doctor answered yes as long and he hasn't ingested any nuts.
They asked a few more questions but those were the good ones, I thought.
I can tell the school director has been given some direction in how she's handling things because things are so formal now. Letters, signatures and etc. Also, we have our 504 meeting on Monday afternoon.
Yesterday morning before the doctor's appt. I had a meeting with my friend's friend who knows school systems and 504's inside and out. (The one with all the degrees that I mentioned earlier in another post). She spent an hour with me going over the paperwork and etc. She gave me some good points for the 504 meeting (one thing she suggested is state that I want to be present for all the meetings and training classes concerning Reece's allergies and etc. I had thought of that too and had written it down in my journal I'm keeping. I was glad she mentioned it. Made me feel like I was on the right track. ) She said there's no way they're going to deny the 504. (I'm worried they might as I've read a lot of schools try that) She said it's in the school's best interest to have one on file for liability reasons (both sides) so hopefully she's right.
I have all my paperwork lined up and ready to go and so I'm ready for the meeting.
I want to talk with the school director about the doctor's orders (that I got yesterday) so that she fully understands them. (Since everything has been so difficult with this school it wouldn't surprise me if there is still some confusion about something). Plus there are some things I'm supposed to tell them. I want to set up a meeting with the staff so we can all go over it together. Oh, the woman (school 504 guru) I spoke with yesterday told me to always find out who "We all had training" or "We all had a meeting" is. She said I should always be told who's in the meetings.
Anyway, we'll see what happens with that but for now I'm feeling much better about everything. I can tell the Special Ed director is involved in our case now and Monday's meeting will be a making or breaking point, I'm sure.
and after thinking about things:
When I got to the Allergist's office yesterday we had a new nurse. One we've never met before and she took it upon herself to reassure me she was familiar with Reece's case and that she had a meeting with Linda (our regular nurse and the one who has been dealing with the school) and the doctor before our appt.
So, we got into the exam room and she sat down and pulled out her file so I stood next to her and had mine out. She said she had some signed papers for the school and that we needed to discuss everything. I told her I had a list of quetions from the school too when she had a chance and she told me we'd get to that and I said that's fine. She then said she needed to go over recent health issues first and I said that's good. She then told me "why don't you calm down and have a seat". WTH? I was calm as I had just gotten out of that meeting with the 504 guru. I was very calm, actually. So, I told her I was fine and she said "ok". Then we went through Reece's current issues and then started on the paperwork for the school. That's when she told me that she was impressed with the accomodations the school has made and I told her they were great and working out well that it's the treatment we're all confused about. She then said that I need to be not so directive in dealing with the school. That I need to basically "back off" but she didn't say it that way. I told her that the list of accomodations came about because I had to fight for every single item on that list. I can't remember what she said exactly but overall she was trying to tell me that you catch more flies with honey. I let it slide as I mentioned in the other post.
Anyway, the doctor came in and he was not his normal self. He's normally very friendly, smiling and just super talkative. I was lucky to get two words out of him. He asked me questions that he's asked me before and I even had to remind him of details of things he has told me. It was pretty odd. He then bent down to exam my ds and to break the ice I asked him if he had been on vacation recently. (he was super tan) He barely looked at me and said "no". I said "oh". Then he said "Why?" I said "You're tan" and she said "Oh, I went to San Diego with my wife" and I said "that will do it then".
Anyway, he was very, very reserved and seemed critical of me and I felt it.
So, just now as I was mopping the floor I put it all together. The school nurse spoke w/the doctor. I'm sure she wanted to clear her name on "changing the orders". (One of the first things the nurse at the office said was "we need to discuss the orders and talk about the confusion" to which I said "that would be great!").
Anyway, another thing the nurse (at the office) asked me is if I've been on the FAN website. I said I have. She "I thought so after seeing your letter to to the doctor and everything". She then said it's great that I'm getting so much information and then she said something else about how I'm taking it all to the school. That gave me an odd feeling too.
I did type of a questionairre to have the doctor fill out and his nurse did it and then he signed it so that's good.
But, I can't help but be uneasy about what's going on that I don't know about. I really am wondering what will happen in Monday's meeting.
I wonder if the doctor gave out any med info to the school nurse? Even if he did (not sure if that's legal or not per HIPPA laws and I think not. I have NEVER signed a release of any sort)Even if he did nothing would change as far as Reece's allergies and meds and treatment protocol but there's something I can't put my finger on.
Maybe I'm just expecting things to take a turn for the worse again since that's how it has been going from day one. Or maybe the school is going to deny the 504.
The 504 guru told me they can't deny it (because ds qualifies without a doubt) but I bet they try. I asked her what to do if they say he's inelligible and she said to tell them to prove it because he does and she said just go armed w/my info. She said if they continue to deny them then to stand up and say "I see we're going to have to take this to a higher level".
I did feel the entire time that it was odd Linda (our usual nurse) wasn't handling things. Towards the end of the appt. she poked her head in and said "Hi, how are you?" and I said I was good and thanked her for everything.
Oh, also at the end of the appt. the nurse (not Linda) went on to tell me how she deals with difficult situations and how being nice gets more done. (She have me an example of how she's done it in the past" WTH?
I wonder what the school or school nurse has said? Yes, I have fought and hard to make the school comply to keep Reece safe. I haven't asked for any out of this world accomodations. However, the school is acting like everything that has been done is their idea (and have tried to say that to me too!) and in the most recent letter there are things about how they've been working with me from day one. Yeah right
So, who knows what's going to happen on Monday.
I'm so sick of all of this! While we've made great strides there's still a lot unresolved.
I'm starting to realize it has been dumb of me to have everything be a one on one coversation with the school director. Only once was there ever another party in the room. I KNOW she's not looking out for our/ds' best interest. That has been apparent from day one.
With that said I need to go over the doctor's most recent (and much clearer) doctors orders with the school. I don't feel that I should do that soley w/the school director. It seems anytime things go from me to her they get lost once they leave the room or confused or something. I think I should make sure the school nurse is involved in this conversation, don't you? Of course I could just hand the paperwork to the school director but there are some things I want to make sure are clear with her so that she relays it correctly to the staff/teachers and etc. I wonder if I should wait till Monday's appt. and just keep ds out of school until then?
Oh as far as the side convos about being overly sweet or sweet in general to get what you (general you) want I can see that to a point but I can also see being assertive when it's necessary. If I hadn't asserted in way my ds would be in a classroom sitting next to "Janey" eating her PB& J everyday because "That's a staple of the Kindergarten diet and they in no way can take that from her". Also, he wouldn't be able to have his epis and they'd be using the communal hand washing buckets.
_________________

I have absolutley no idea about the school nurse as I've never met nor spoken with her if you can believe that. Since the school is a small charter school the nurse is only at the school for "issues". She doesn't come on any certain days to stay for awhile if that makes sense. I do know that the school director told me the other day they had the former school nurse (who's little girl is in my dd's 2nd grade class) teach "everyone" (no idea who everyone is) how to use the inhaler and spacer.
I think the only thing the teacher will do in the meeting is voice her concerns about how freaked she is because this is serious stuff and the after school care person is a super quiet person so I don't expect much from her. (She's a mom of my dd's friend in 2nd grade as well, lol!)
The superintendant- we've met her and while she's all giggles and smiles she's VERY ignorant in relation to allergies. She is the one who told me "Peanut butter is a staple of the Kindergarten diet so we can't ask them not to eat it at school. For some kids that's the only thing they will eat". She also said she has allergies and fully understands. (She has environmental allergies for which she takes Singulair, that's what she said)
The school director- again ignorant on food allergies but has learned a lot in speaking w/the doctor's office though she has had her back up from day one and while she smiles at me face to face it's sure that she talks out of both sides of her mouth. Not sure about the 504/Special ED coordinater. I have never met him.
Oh, there's another person who's going to be there. She's some uppy up but can't remember her title. Her dd is in my dd's 2nd grade class as well. (Told you, small school). She is very nice, level headed but she's on the school's side I'm quite sure. (If they perceive there to be "sides")
As far as saying anything about "504" the school director set up that meeting. I haven't said anything about it aside from the first day when I threw it out there when she was saying "NO" to everything. In all honesty it has been her who has been pushing this.
Now, about the doctor's orders- I didn't send ds to school today because they are confused on what to do in case of contact or ingestion of nuts. I have orders that are much clearer along with some verbal things to tell them (per the doctor's office). So you're saying don't even go to them with the new orders till the meeting Monday afternoon?
Also, in their letter confirming their interrpretation of the doctors orders (prior to these new ones..hope that makes sense) they wrote for me to tell them of any additional accomodations that need to be made. I found that interesting. (No, I haven't said a word but I'm trying to get some thoughts down about some things that do need to be included. Is there anyone who will help me with that? The school nurse?)
As far as the chart being altered I thought about that but can't figure out why it would be. I will say the doctor was not his normal / usual self. Normally he's very vocal about the severity of ds' allergies. I can't remember exact words but basically he said he doesn't want ds down on the playground that these people need to take this seriously and etc. Basically what I'm saying his his demeanor changed drastically for some reason. It's almost as if he's worried about liability himself but ??

He had the skin prick testing and the blood tests. (I'm not up on the lingo) I don't have the #'s.
He has had to allergic reactions.
He kicked a bowl of pistachios and broke out in huge hives all over and was very "grumpy". He didn't sleep well at all that night (kicked the bowl in the evening) and tossed and turned and cried off and on all night and just wasn't "right". I never even put two and two together till the next day. He woke up and his eyes were swollen and he still had hives all over.
The second reaction was when he licked a peanut. I was eating peanuts and he wanted to taste one so he licked it. At this same time dh was putting him up on the table for a haircut. So just minutes later ds started freaking, screaming, crying and scratching himself. We thought it was the haircut. His nose started running like there was a water faucet up there and he literally was just freaking out. We took him into the shower (still thinking it was the hair) and in the rush of it all didn't notice his face and lips till after he was in the shower. His lips were swollen, super red and he had hives everywhere. He was scratching himself all over and drew blood in some spots. During this time dh asked me "Did he eat a nut??" I then remembered he licked my peanut!! AHHHHHH! So, we got him out and put baby powder on him to stop the itching and he was just screaming and crying and nose was running and he was jumping around.
How dumb are we? We didn't do anything besides calm him down, put baby powder on him and etc. He had hives all evening into bedtime.
Now, just so you know we had no idea about nut allergies. I know that sounds stupid but we just didn't. We didn't know to give Benadryl and we didn't have any epis but you can bet your sweet bippy he went for testing after that.