| T O P I C R E V I E W |
| positivevibes |
Posted - 06/10/2008 : 02:15:06
My 14-year-old daughter is severely allergic to peanuts and legumes such as soy (we discovered this when she was 18 months old). She's graduating from 8th grade this week and then going on a week-long trip with her class to Washington DC and NYC (we live in California).
This is very stressful to me for many reasons. It's the first time I'm putting my daughter on an airplane "by herself" (that is, without me or her Dad). Lord knows that alone is stressful enough. But most importantly, her food allergies. It will be the first time she has had to deal with her food allergies on her own and take most of the responsibility for what she eats (the school refuses to "assume liability" for it -- don't get me started on THAT anger-provoking topic...). She's a mature responsible girl, and I'll make sure she's well-prepared, but still it makes me very nervous.
Being a parent is already a large responsibility. The "severe allergy" thing makes it overwhelming. I want to scream at the top of my lungs, "IT'S NOT FAIR!!!!!!"
I want to interject that she has NEVER actually HAD a severe anaphalyactic reaction to peanuts; she has only vomited and nothing more. However, her allergy (skin) tests continue to show that she is extremely allergic (off the scale). And her Allergist warns that her reaction could change at any time for absolutely no reason. So just because peanuts and soy made her "only vomit" previously doesn't mean they won't put her in the hosptial next time. That is a huge mind-f*ck for a parent.
What has been helping keep me on track is reading that Power of Now book and re-reading Healing Back Pain. Also, realizing how much I HATE having to jump through all these hoops because of my kids' food allergies (both my daughters have the same allergies). Realizing how much I resent it is helpful (recognizing the emotion; the anger). I resent their allergies; I resent always being the one who does all the preparation for camps or trips (resentment toward husband's casual attitude), I'm angry that my kids have to suffer with this problem....that the damned problem is ALWAYS there.... the whole thing makes me very angry and resentful, and it won't go away -- probably ever. This nasty thing has been hoisted upon me against my will and I can't make it go away. The only thing I can do is change how I view it, how I handle it, and how I let it affect my life.
It's a constant challenge for me, because I tend to catastrophize. Therapy has also been helping. but I still have a way to go.
I've been going to the gym every other day for the past 2 weeks (exercise helps keep my stress level down) and while my back doesn't feel "perfect" I don't actually have any specific PAIN, so I consider it a "win."
I feel that I've been "handling" this fear and anxiety pretty well these past few weeks, but still I worry that it might somehow trigger another TMS episode. I suppose I should continue to write in my journal and make sure I get all my emotions out. I keep trying to focus on the positive (how much fun she'll be having, etc) and looking forward to crossing one more worry off my list when she comes home.
Tell me, how would YOU handle a situation like this -- a very real threat that just cuts right into your heart -- threatening to take away the most precious and beloved thing in your life?
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You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| 10 L A T E S T R E P L I E S (Newest First) |
| positivevibes |
Posted - 06/12/2008 : 00:20:43
quote:
quote:
Originally posted by positivevibes
"I used to "hang out" at a peanut allergy message board, but I've stopped going there because it was upsetting me too much. A lot of the kids on that board have MUCH more severe reactions than my kids. They would never even consider letting their kids go on a trip like this. I could never post about it there, because the other parents would be all over me and give me a very hard time."
Yes I made the same decision after crying everytime I went on a parents list for kids with diabetes. While it was helpful it really added to the anxiety to know everything that could go wrong. I don't think about the things that can go wrong so much anymore except when she's away from me. I find hope in some very good research for a cure(but the cynical me wonders if big pharma wants a cure, they make so much money on diabetics)
Has there been any hopefull research into peanut allergies?
How do I put in a quote properly?
There really isn't any sort of cure that could be easily distributed to the general public. Duke University did a study (in a hospital under the supervision of doctors) with peanut-alleric kids where they fed them extremely tiny bits of peanuts and then injected them with Epi to counter the reaction. Over time the amount of peanut they were fed was increased. Over time they tolerated more and more and eventually got de-sensitized to peanuts. But here's the kicker: to stay de-sensitized, you must eat peanuts every day! (Ironic, eh?)
So far there is no injection or real immuno-therapy for reversing or lessening the allergy. Although my cousin, who works at Genentech, told me that he thought his company was working on something...
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You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| southpaw |
Posted - 06/11/2008 : 07:38:51
"I used to "hang out" at a peanut allergy message board, but I've stopped going there because it was upsetting me too much. A lot of the kids on that board have MUCH more severe reactions than my kids. They would never even consider letting their kids go on a trip like this. I could never post about it there, because the other parents would be all over me and give me a very hard time."
Yes I made the same decision after crying everytime I went on a parents list for kids with diabetes. While it was helpful it really added to the anxiety to know everything that could go wrong. I don't think about the things that can go wrong so much anymore except when she's away from me. I find hope in some very good research for a cure(but the cynical me wonders if big pharma wants a cure, they make so much money on diabetics)
Has there been any hopefull research into peanut allergies?
How do I put in a quote properly? |
| positivevibes |
Posted - 06/10/2008 : 23:51:07
quote:
Originally posted by RageSootheRatio
PV, I think you're awesome, actually! In the face of this serious challenge to your own peace of mind, you are nonetheless ready and willing to take it on and allow your daughter to enjoy going on this important school trip with her friends !! You deserve some serious credit, here !!
I know that in my own childhood, if I had had a similar problem, my mother would have "solved" the whole thing by just not allowing me to go! Sounds like your daughter has proven from past experiences that she is responsible and has *earned* the right for this trip, where she WILL also be accompanied by adults who have been educated. She is going to be an adult herself in a very few years, and sounds to me this is an important step along the way, to where she really will be on her own.
Thank you, that is so sweet of you to say! I want my kids to be able to enjoy every opportunity that they can, and I don't want them to be limited by my own fears and issues (when possible).
There is statistically a 20% chance that my kids might outgrow their peanut allergy. Usually people don't outgrow it. But we *think* my husband had this allergy was a child and outgrew it (he finds peanuts, nuts, and peanut butter to be extremely revolting and nauseating). If indeed he did outgrow it, then there is hope for my kids. That little glimmer of hope keeps me going, too.
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You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| RageSootheRatio |
Posted - 06/10/2008 : 21:54:56
PV, I think you're awesome, actually! In the face of this serious challenge to your own peace of mind, you are nonetheless ready and willing to take it on and allow your daughter to enjoy going on this important school trip with her friends !! You deserve some serious credit, here !!
I know that in my own childhood, if I had had a similar problem, my mother would have "solved" the whole thing by just not allowing me to go! Sounds like your daughter has proven from past experiences that she is responsible and has *earned* the right for this trip, where she WILL also be accompanied by adults who have been educated. She is going to be an adult herself in a very few years, and sounds to me this is an important step along the way, to where she really will be on her own. |
| positivevibes |
Posted - 06/10/2008 : 18:05:50
Actually, calling the restaurants and hotels (breakfast buffets) ahead of time is to set my daughter's mind at ease and make it easier for her. She asked me to do it. They have a very busy and fast-paced schedule on this trip and my daugther was afraid that if she didn't have that info ahead of time, she wouldn't have enough time to eat after chasing down restaurant personnel for food allergy info.
She does wear a Medic-Alert bracelet (both my daughters do). Medic Alert is a great company. Her entire medical history is only a phone call away; it's very re-assuring.
Oh yeah, also she will have her cell phone with her and has been instructed to call me or her Dad if she isn't sure about something (the teachers "won't take the liability" of telling her that "yes that's safe to eat" or "no, it isn't." )
I like the idea about having her carry a separate permission slip with insurance info. The head teacher has something like this (form we filled out), but it would be a good idea for my daugther to have it, too.
Armchairlinguist - I'm really not going overboard. Going overboard would have been preventing her from going, or getting irrational on her. I will have less concerns about her when she's an adult. An unfortunate but true statistic is that most food allergy-related deaths happen to teenagers. I suppose it's because they aren't paying close enough attention and don't have enough experience with cooking to know that (for example) eggrolls are sometimes sealed with peanut butter (something we always ask about) or that peanut butter is sometimes the "secret ingredient" in chili or other sauces.
I recently found out that Chick-fil-a cooks their food in peanut oil, and told her to avoid that place if it's in any of the food courts they'll visit.
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You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| Littlebird |
Posted - 06/10/2008 : 13:56:14
I have to say that I think calling the restaurants is actually a good idea. One of my son's close friends has peanut/legume allergy and has had severe reactions. His mom told me of someone they knew who ate at a Chinese restaurant after being assured by the restaurant wait staff that it used no peanut oil and no peanut products in the preparation of the food. However, what no one seemed to know was that the egg rolls that the restaurant purchased pre-made from a food manufacturer were sealed along the edge with peanut oil. The young man ate an egg roll and had an anaphylactic reaction. I don't mean to add to your worries by telling you about this, but it's important to think through the possibilities because a 14-year-old may not be aware of some of the more obscure risks such as this and needs to be told what to watch out for.
Much of the food served in restaurants is prepared elsewhere and just heated up at the restaurant, even in the better restaurants, so it is wise to know what foods might be prepared with peanuts/peanut oil or might be prepared in a plant that also makes products containing peanuts and might have cross-contamination, so those foods can be avoided. Having worked in many restaurants, I can tell you that I wouldn't rely on the wait staff to have this level of awareness about the food they serve--I'd be checking with either the head cook or the manager, whoever orders the food.
But to reassure you, my son's friend has been traveling to visit us, without his parents, since he was about 10, (he's 19 now) and he's had a good awareness of how to protect himself. Last year he traveled with another teen-ager to England, just the two of them, and he did fine with the food issue.
The one really bad reaction that my son's friend has had occurred when another friend, who didn't think the allergy was really that serious, switched a nut free chocolate chip cookie that had been offered to the boy for one that had been made with peanuts. The boy never would have expected his friend to do something like that. But it's made him even more cautious about knowing which foods might be prepared with nuts and avoiding them.
Since you've prepared other people who will be with your daughter to know how to recognize a reaction and how to treat it, I think the only other thing you may want to do is to make sure your daughter carries a signed permission slip allowing medical personnel to provide immediate treatment and possibly provide her insurance information on it. (Tell her to be careful not to lose that insurance info, people are now stealing insurance identities just like they do financial identities.)While most hospitals wouldn't wait to treat, the signed permission is just a little more reassurance that treatment will go smoothly, if treatment should be needed. My son's friend always brought a permission slip along when he visited us.
Another step you might consider for the future, as your daughter begins going off on her own more and more, would be to have her wear a medic-alert bracelet or necklace. My oldest son is a police officer and he says that all emergency responders are trained to first look for a medic-alert ID. He says it's better than carrying written information in your wallet, although it doesn't hurt to do that too.
Ultimately we can't stop our children from living their lives, if they seem to be responsible enough to avoid potential risks, even though it's nerve-wracking for a parent to allow a child with a serious health issue to go off on her own. Being too over-protective would be cruel and damaging to the child. You've done all you can and it's reasonable to trust her. This experience will enhance the maturity she already has. Since this is her first trip without you there to check out any foods, I think you have been right to go to the extremes you have with your preparations, but you won't need to go to this extent in the future because your daughter will have learned to think of the potential risks and will know how to protect herself. In the long run, I think you'll look back on this trip and be glad that your daughter had the opportunity to learn how to take care of her own needs.
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| armchairlinguist |
Posted - 06/10/2008 : 12:59:38
quote:
I'm doing as much as I can -- and once I'm done with my job, I have to let go and just try not to worry.
Like I said, these types of things are big challenges for people like me who have TMS and tend to worry and be perfectionist and goodist.
I think you might consider whether you are doing too much. I cannot say for sure because as you said, this is something that is serious for the safety and health of your child whom you love. I've always been a healthy kid and my second so I don't know the extent of what parents may need to do for kids in the in-between stage between childhood control and full adult responsibility.
But I noticed that you are calling restaurants the kids may eat at. That seems a little obsessive to me, honestly. I can't see that it will make any difference. If a restaurant is helpful and responsive then they are probably already okay and know how to deal with these things. If not, I don't see that your call would make a difference.
There is a moving passage in Andrea Leonard-Segal's chapter of The Divided Mind about how we cannot always do our best. It's impossible and exhausting to try. You may want to read and think about that.
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It's not 100% belief that's required, but 100% commitment. |
| positivevibes |
Posted - 06/10/2008 : 11:44:17
quote:
Originally posted by RageSootheRatio
PV .. not sure if this might help .. but has she *proven* herself to you, to be responsible and trustworthy to take care of herself in smaller ways, before this? Has she shown that she knows what questions to ask when she is ordering food? Has she shown that she knows not to have certain things if there are uncertain answers?
Yes, for the most part. I've spent the past year drilling her on how to be more aggressive with waitstaff in restaurants. But I made up a card which details her allergy, so that a waiter can take it into the kitchen and no mis-communications will occur. And I've asked the teachers to please help her be aggressive if the waiter seems clueless. She's pretty good about protecting herself. She's taking "safe" snacks with her, which she'll have on her at all times. She would rather go hungry or eat a "safe snack" than eat questionable food.
quote:
Has she always remembered to carry her epi-pen with her? Has she shown that she knows when and how to use it? Do the friends and adults who she is traveling with, know how to recognize an allergic reaction and what they should do should she have a reaction or (heaven forbid!) go into anaphylactic shock? Does she (friends/adults) have a cell phone to call 911? Do they know where she keeps her epi-pen (purse / backpack / waistpurse) and know how to use it, if need be?
Yes, I got that through her head last year...that she ALWAYS has to have her Epi-pen with her. She is going with 2 Epi-pens, and I will give 2 extras to the head teacher (just in case she loses the other two). Yesterday was the final "trip meeting" and I met with the other teacher-chaperones and spent time teaching them about food allergies, how to recognize a severe allergic reaction, how to administer an epi-pen, and what to do in case of an allergic emergency. I wrote up a 4-page document that was a "crash course" in my daughter's food allergies. I wanted everyone to totally understand all the details, just in case -- "school liability" or not.
quote:
For your own growing peace of mind .. has she been on one-day outings or overnights where she has successfully handled her severe allergies? Can she do some role-play practicing with you (explain that this is more for YOUR peace of mind?!) so you feel more secure.
That is one thing that I have to fall back on, mentally and emotionally. She has eaten out many times with friends and their families. She has done a lot of sleep-overs and similar things. Nothing has ever happened. That history helps to calm some of my fears -- that statically the odds are in her favor.
quote:
I am really sorry you (and she) has to deal with this. It is an extremely hard situation, especially because when she is on her own, you feel so powerless to protect her. At some point we ARE powerless though, and as a friend of mine often said, we "have to let go and let God."
I hope something in here might be helpful ... that was my intention, but if not, please just ignore.
No, you're asking all the right questions. My husband and I had several LONG discussions about this trip an entire year ago, when it first came onto my radar. We had a meeting with the principal and the head teacher-chaperone to discuss it before deciding it was OK to send her on the trip.
I've spent the past 2 days on the phone calling various restaurants that the kids will be eating at, to get info about the food and let them know that they'll have a kid with peanut allergies next week.
I'm doing as much as I can -- and once I'm done with my job, I have to let go and just try not to worry.
Like I said, these types of things are big challenges for people like me who have TMS and tend to worry and be perfectionist and goodist. I think that if this problem just disappeared one day, I would feel a HUGE burdon lifted from my psyche.
Southpaw - Sorry to hear about your daughter's diabetes. It sounds like a similar parental challenge -- you have to be diligent and make sure they have their medicine with them at all times. Having this "hang over you" all the time really begins to take its toll after a while. It's not easy to make kids be responsible for their own wellbeing, especially when their lives are truly at stake. My other daugther (age 12) is having a very hard time dealing with the "possible death" aspect whenever she eats out, even if we re-assure her that it's OK. I think I may have to take her in for counseling to help her deal with the anxiety.
As parents we just have to do the most we can (for them, AND for ourselves for the sake of our own sanity) and then at some point we just have to "let go."
I used to "hang out" at a peanut allergy message board, but I've stopped going there because it was upsetting me too much. A lot of the kids on that board have MUCH more severe reactions than my kids. They would never even consider letting their kids go on a trip like this. I could never post about it there, because the other parents would be all over me and give me a very hard time.
**********
You are not your mind; you are not your thoughts. The incessant mental noise [of your thoughts] creates a false mind-made self that causes fear and suffering and prevents you from connecting with your true self and living in the Now. - Eckhart Tolle, The Power of Now |
| RageSootheRatio |
Posted - 06/10/2008 : 08:57:48
PV .. not sure if this might help .. but has she *proven* herself to you, to be responsible and trustworthy to take care of herself in smaller ways, before this? Has she shown that she knows what questions to ask when she is ordering food? Has she shown that she knows not to have certain things if there are uncertain answers?
Has she always remembered to carry her epi-pen with her? Has she shown that she knows when and how to use it? Do the friends and adults who she is traveling with, know how to recognize an allergic reaction and what they should do should she have a reaction or (heaven forbid!) go into anaphylactic shock? Does she (friends/adults) have a cell phone to call 911? Do they know where she keeps her epi-pen (purse / backpack / waistpurse) and know how to use it, if need be?
For your own growing peace of mind .. has she been on one-day outings or overnights where she has successfully handled her severe allergies? Can she do some role-play practicing with you (explain that this is more for YOUR peace of mind?!) so you feel more secure.
I am really sorry you (and she) has to deal with this. It is an extremely hard situation, especially because when she is on her own, you feel so powerless to protect her. At some point we ARE powerless though, and as a friend of mine often said, we "have to let go and let God."
I hope something in here might be helpful ... that was my intention, but if not, please just ignore. |
| southpaw |
Posted - 06/10/2008 : 08:19:34
Hi,
Wow sounds very similar to what I'm going through right now. My daughter is also graduating from grade 8 and is going on a 3 day trip next week with a life threatening condition. Without me. She has type 1 diabetes and I've always been there for her to help with high and low blood sugars, test her in the middle of the night to make sure she doesn't go too low, think about how much activity she has had during the day and how it will affect here blood sugars, be there with the emergency kit just in case. I've gone on every school trip with her but this year I thought I'd let her go on her own.(Went on one last year for 3 days with a bunch of 12 and 13 year olds and found it exhausting with my back pain) Now I'm starting to doubt my decision of not going.
Sorry I'm not much help here but these are very real life threatening conditions. I've always thought being a parent to a kid with a severe allergy must be a similar stressor to Type 1 diabetes. While my husband is a great help he has a time consuming job so I've always been the one to do most of the care. We all love our kids so we do whatever it takes but deep down that inner child is probably screaming at all that responsibility)
I sure hope they find cure for these conditions soon!
Now that our kids are getting older and want independence the worry just gets worse as we can't be there for them. URghhh.
Well I can relate but don't have any suggestions to make it easier cause it's not easy. I hope you have a reliable nurse or teacher who can call you ever so often to ease your worry a bit. My daughter is going to have a cell so I'll be calling her often! |
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