Are You The Sole Parent Dealing with PA or Does Father Help?

I too, am the main care provider for my PA, asthmatic daughter. My husband is totally supportive and we have had this conversation several times. Why me? Why not him? Why not both of us? First of all, I am the one who is at home with my daughter and have a better handle on her health. Secondly, I am the mother, and I think we are built differently, we have that natural protective gene built in to us or something, lol, not that my husband wouldn't protect her, but in a different way, he thinks of situations as they arise he's not proactive and thinking about how to make situations safe before we arrive. Thirdly, I am the better half to argue points, write procedures, and fight for our rights, my husband's not as good at doing these types of things. He likes peace and harmony. I can remember when my daughter was 4, I still hadn't had a babysitter other than my mom and sisters and I had never been away from my daughter. I was invited to go away for the weekend, with a group of woman, I told my husband I couldn't because I would worry too much about my daughter's asthma. He insisted and tried so hard to prove that he could do it. I went and he did great! ...but I think that finally spurred him into educating himself more about being a primary care giver in my daughter's health, and he has since proven himself! I still do all the stressful advocating stuff, ie. school, family, community education etc...., and he proudly announces oh, you're better at that stuff, but he is a great cheerleader, he'd hate to see that I used that analogy! So please if he ever comes on her don't call him a cheerleader, I just can't think of a better word at the moment. I use to worry so much about what would happen if I died who would care for my daughter, but I am now finally comfortable, my husband does a great job and my mom and my younger sister are fantastic with her allergies and asthma. I even have talked to my younger sister about caring for my daughter should I meet an early demise. ....and she said, "she'd have it no other way." It sounds silly but it is a relief to have these silly details taken care of. Now I can stop worrying about that issue. There really is so much stress and anxiety that parents of food allergic children have, others, even family members, have absolutely no idea!!! Here's to a long healthy life for us all!! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

dear Cindy,
This is something that has improved as time has gone on.
In many households food shopping and cooking is still mainly a mothers job. so reading food labels and asking at restaurants is something that i do, after so long it has become almost second nature to read a label or quiz a waitress . But then my husband works long hours and so being at home its my job to tell the school exactly what to do, and teach my husband how much piriton to give william and give him a trainer epi-pen etc, oh and dont forget the rest of the family, ha ha,. My husband still feels guilty about the peanut dust on his clothes which william reacted to, and since then has been more conerned. On the down side he complains that i worry all the time about william, if not his allergys , but his food intake!! He doesnt seem to realise that at work HE can switch off and not even think about his family , but for me the time at work or out the house meant that i have to make sure i am avaliable at all times. so of course there is never a time when i just dont think about it. The simple fact of carrying a mobile phone and his meds stop that.
bye sarah

Hmmm, I better be careful how I answer this one since dh reads the boards from time to time, too. hehe ;-)

I'd have to say that in most ways, yes, I am the sole parent managing this allergy. I'm the one who makes the dr appts, plans the meals, does the shopping (though Mike helps sometimes and when he does, he reads labels as well), cooks the meals, does the researching, prints out the restaurant cards, packs and carries the MedBag, administers the medications, makes sure we have a map of the area with the hospital marked if we're on a trip, etc.

Mike has started to get a little more involved (though he's been dragging his feet the last 2wks...get on the ball, honey, school is starting NOW! *smile*). He is the one who asks questions at restaurants most of the time. He has been trying to contact senators and representatives about getting some legislation passed that would benefit the food allergic kids (as well as others). And he's been visiting all the school districts in our county to hand out Epipen Trainers, Teacher's Guide to Anaphylaxis, a list of websites and contact info for more information on food allergies and anaphylaxis, and to go over briefly some of the things they need to do to help keep the food allergic child safe. He also helps educate other people if the need or opportunity arises.

The majority of the day-to-day stuff, though, is up to me. I guess in a one-income family, with me being the one staying home, it's only natural, but I must admit that there are times when I feel COMPLETELY alone... segregated from the rest of the world... because of the kids' allergies.

Its my thing, solo. The toughest thing in my life is letting my ex-husband (who doesn't get it) take my sons for a visitation. Talk about stress. They take a suitcase of food and an ice chest and I watch the weight of the world heap down on both of their shoulders as they walk away. Five years ago when my son was 5, the judge said "I guess he is going to have to learn to read ingredient labels.." AAHHH.. So, tend to your marriages because divorce and peanut allergy is about as tough as it can get.

I honestly dont know if anything I say right now will make any sense but I need to vent please. My husband casually mentioned today that he ate a peanut butter cracker at work, I lost it to say the least. I realize that weve only been living with this for 2 weeks but I cant even pass it in the store without realizing that ccould take my sons life. I freaked just thinking about him kissing James and him getting a reaction from that. I eat sleep and spend every minute staring at my son waiting and watching . My husband gets all his information from only what I tell him , about the many many calls I make , the lettrs I writeand I feel very alone in all this . Please someone write and tell me this will get better thank you for listening........Kathy Ann

My ex reads labels but he does not take this allergy as serious as I do. He is very lax about Drew's food allergies since he moved out 18 months ago. IT drives me crazy.

On this past Friday night when he came to pick up the boys, I said to him to check his epi-pen jr for the expiration date. Well he tells me that it is home in a cabinet. [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] I said why in Gods name is is there? You are to carry it everywhere he goes.

He had the nerve to tell me that I don't carry one at all times with our son. I said I beg your pardon I have one in my purse at all times and one at home.

How in Gods name would he know. It is always with me. Since Drew was 2 I have carried one either in the diaper bag when he was little or now in my purse. He was with me when the allergist said this must go everywhere Drew goes. He was always the one who was so overprotective. Now all the ex worries about his his girlfriend.

My heart is in my throat every time that I have to send my boys to his home. He is the type of father that allows the TV to be the babysitter. GRRR [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img]

Grr, I could go on all day about the stunts that he pulls but It would be a book...

but YES I am the one who takes care of the children.......

Best wishes for all of us who take care of the children.
Renee

I am short on time so I will make this short and sweet. My ex-husband relies on me to do everything although he is quite diligent in reading labels and carrying epi-pen. When I was reading the post from Cindy I wanted to mention that whenever I have to meet with anyone at the school regarding this issue I make my ex husband come. It would seem as though anything I say is taken more seriously if he is sitting beside me. This is rather sad but true. I'm not sure if it is because there is a man present or because there are two people but it seems to work better. He need not even say anything but just be present. I think with all the problems you have been encountering you should try to encourage him to be there when you have your meetings, I have found it really makes a big difference.

Head Cook, Kathyanne, and Renee, I could SO much relate, as best I could, to what all of you were saying. My DH and I are currently together. However, this is not always the case. And often times when we are together my DH has a particular issue (shall we say) that causes him to be lax when it comes to everything, including PA. I know that we're not staying together because I'm afraid that I would have to let Jesse visit with him if we weren't, but I have thought about it because it certainly has been something that has been a possibility more than once in the last seven years.

Three years ago, we weren't living together and he took Jesse with him to Toronto to his Mother's home. They went to my DH's sister's birthday party where all of the adults were smoking and there was poor wee Jesse with his asthma. Dad couldn't remember when they got home how to give him his inhalers properly.
Because I didn't have a custody order in place and DH decided to be nasty, I was worried sick for the three days that Jesse was gone. In fact, I was beyond worried sick, I was out of control. With my DH's "issue", I really know that I would fight for the kids not to be able to see him if we did split up.

My heart goes out to you three women who do have to deal with ex's. Although I'm not dealing with one now, I just know that with my DH, in particular, with his "issue", although he is a great Father and totally gets it re PA and seems to be becoming more involved each day (including calling the school principal), I would be sick from the minute my children left the door until they got home. I wouldn't be like a "normal" divorced Mom who had free time and could enjoy herself. I'd be sitting by the phone.

My heart goes out to you and I also give you kudos and big hugs [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Tracey, sorry, I did want to say to you that I totally agree with what you said about having a man with you. This is quite off topic but an example. As I've posted here, I have severe migraines. My doctor has always told me "take two extra strength tylenol". Six months ago, I went into his office and begged for a pain management plan to be put in place. I broke down in tears. Still nothing.

I had an appointment with him two weeks ago and I asked my DH if he could come with me.
Well, as soon as the doctor was able to hear from the male party how life was SO horrible when the female was suffering 10 migraines a month, you would not believe what meds I walked out of that office with! Of course, I think my doctor is a misogynist pig, but he proved that point, didn't he?

I definitely think that if our DH's are able to attend meetings at the school with us re PA it also goes over better (as long as you and DH are on the same page) because you're a force of two instead of one. For some reason, I've felt like I needed or wanted to fight the school battles by myself so I never think to ask my DH to attend meetings with me. But, I do find him now starting to speak with the principal and being more and more active when it comes to dealing with the school and what are sometimes enormous requirements on our part, as parents, to have them "get it". Tracey, I think you're right on about this one.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Cindy, this was timely with me when you wrote it to begin with, but I think one of my kids woke or the computer kicked out.

This time it is much timelier. Unfortunately, my MIL passed away this week. This was a VERY sad event. She is only 55, and everyone is very distraught (as is everyone at all funerals, but intensity increases as the age of the victim decreases). Anyway, food is everywhere. His family does try. They really don't get it. Cookies were out casually last night, and my husband thinks nothing of eating them. Granted his mind is on other things right now, but this would happen on any other occasion. Every time we are up here we have these issues. It's just more intensified now.

My husband is very good about reading labels, and becoming very conscious about having EPI at all times, however, when it comes to the "may contain" stuff -- having it around him, the house, the hotel we stay in, other peoples' homes, etc., he doesn't seem to get it. He doesn't want to read this site, because it is too overwhelming for him. This man can finish a 300 page book in one night, and took three weeks to read the Peanut Allergy Answer Book that I made him read. It's 70 pages! He said he couldn't handle it, and had to digest it slowly. I think it's the only book I've ever read in one night.

Anyway, my husband works A LOT (understatement of the year), and doesn't take the time for these things, so, although he's interested, yes, I am the only one up at night, on this site or reading other materials, etc. It's a bit overwhelming at times. I was at my wits end when you posted this the first time, and was so glad to read it, because I don't have to deal with the schools yet (my daughter is only 2). It was good to hear I am not alone in this.

My husband actually got upset with me last week because I spoiled his dinner plans for taking the whole family, PA daughters and all, to a steak house that has buckets of peanuts on every table and peanuts and shells all over the floor. Seriously. He just doesn't get it. I try to remain calm because there was a time when I didn't completely "get it" either. Fortunately my lack of information did not result in any reactions or hospital trips but...they could have. I can't imagine what I'd do if I had to share custody of my kids, especially those with PA. I know my husband would never intentionally do anything to jeopradize their health but he is in avoidance of a lot of issues. Example...besides the peanut restaurant thing...he thinks I'm over reacting to rid the house of Little Debbie products that don't definitely have peanuts on or in them, he doesn't want our daughters separated from their friends during lunch and snack at school and preschool, and he doesn't think it's fair to keep his son and our other daughter (both not allergic to peanuts) from enjoying their favorite peanut containing snacks at the movies or on car trips, etc. He has seen a couple of really serious reactions when we first found out they were PA after sampling straight peanut butter for the first time so he should understand what can happen. I think the fact that we were so careless before with nothing bad happening has given him the false sense of security that a bad reaction won't ever happen again. So...it's hard for me now that I'm trying to be extra vigilant and he's still living like everything's going to be fine as long as they don't dip straight out of a peanut butter jar. Does anyone know of any site where a person could actually view what a reaction does to a person and what it can look like? Sometimes I wish I had photos of my 5 yr old with her first reaction at age 1. If he could remember what it looked like and how terrible it was for her and all of us maybe he would be shocked back to reality. If a person could see something like that on the internet or in a book maybe it would help dads, relatives and friends consider the scope of the problem. Even IF some of us err on the safe side (which we don't : )) that's got to be much better than the alternative. Sorry so long. Joey

joeybeth, wow, you're dealing with a lot. It sounds as though your DH is totally in denial. I could suggest that perhaps if he read a book or something it might help but it also sounds as though he wouldn't do that. I know that it has been mentioned here before
that we need to have a video to show to people that don't "get it" but I'm not clear if there is actually one out there. This would be a good question raised separate from this thread.

My DH and I were just speaking about that recently for someone, I forget who, who we felt didn't "get it" and how such a video might help. I really believe it would. But who of us when their child is actually suffering an anaphylactic reaction would be able to video it as well?

I do know that my DH suffered denial until our son's last reaction when Jesse almost died. It took us almost losing our child for his Father to "get it", but, my soul, after that, he did and continually works now to educate himself (although through me) and others. I am now living with a man that gets it as well as I do and has even begun to start working with the school (whereas before that has been solely my responsibility). But again, we almost had to lose Jesse for him to lose his denial.

I wouldn't wish such a thing on your PA children and I'm trying to figure out how your DH could "get it". It must be extremely hard on your relationship because I know it was on ours. It's like they look at you as if you have two heads or are insane when you mention something that we now consider "normal" as PA parents.

joeybeth, I'm wondering, aside from posting separately to see if there is a video with an anaphylactic reaction or even a pic, if you should post your concerns re your DH totally separate as well to try to get some further advice and support as I realize I'm not very helpful with this one at all. I think you have a really big issue here that needs to be addressed and there are probably people here who have dealt with the same thing and now have DH's that do "get it".

So, please take care in the mean-time. Please know that from what I read, you're not overreacting, it's quite clear that your DH is suffering denial big time.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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hi all - I thought I would give you a direct-PA point of view on this...
growing up I think my mom had the biggest influence on my allergy and checking labels and getting me to read "everything" before it hit my mouth. When my parents got divorced, and then dad remarried, I realized how un-careful he was with the food in that house! My step-mom and step-siblings could have given a care less...and I always would read everything before I ate it, especially digging the boxes of Rice-a Roni/pilaf out of thetrash before dinner to see if they were the "nut" kinds (plus, pilaf has those pasta things that look like sliced almonds [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] And I had to have my own jar of jelly and own jar of fluff (for hot cocoa) b/c the they (step's) could not understand that if they dipped the knife in the PB then into the jelly/fluff for a sandwich that they were contaminating it!

Yes - my dad loved me, but he wasn't so careful...it was mostly on my mom's shoulders...

- AJ

My husband has never been as good at remembering to read labels. He will get home from grocery shopping and have purchased something that he should not have. He totally understands the label reading is important and that you have to read everything even if we bought it a week ago because labels change. Sometimes he will buy cookies and forget to read and sure enough it will say"may contain" or something with a warning. He feels very low when he does this but after 15 years I feel he should not forget to read things.
Last night at dinner I made a new item we had never had. Chritopher knowing that dad purchased the item asked what it was. I had read the ingredients before I made it,but Chris was nervous and asked to see the package. My husband was very upset to think that Chris still doesn't trust him with buying. My husband started reading the lable and chris asked him to give it to him and he would feel better reading it himself. My husband understood,but felt like a real heal.
I think it is because he is used to me doing the grocery shopping and he has only been doing it for a while. Sometimes it is just easier for him to go when I have the kids at church school.
I know he gets it and loves the kids as much as I do,but I told him we don't have time to forget to read. He bought those orange crackers with cheese in the middle and didn't realize we can not have them. He again apologized but like i said just read the lable at the store.
Take care claire

It's 50/50 around here. My dh is very careful and proactive with Cayley's PA. We've always split the shopping and he's been reading labels for years anyway, since he has high cholesterol and needs to check for fat content. He gets more excited than I do when he finds a new product that's safe for Cayley. I feel totally comfortable that he can deal with it on his own (but I was the one who initially "educated" him on the subject).

Carolyn

High five to Claire - your son gets it!

In some respects, as I do the shopping, I read the labels. I also deal with the school etc... to be sure stuff is safe.

The biggest problem dh had is not carrying a purse for the epi. The carrier with the belt loop has fixed that.

Simply re-raising to go with ian's mom's thread. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Well, four years later, I do know I have since asked DH what he would do re PA if I dropped dead tomorrow. He said he would come here and also wanted the e-mail address of a PA.com member he could contact (I never gave him that - figure I'm not dropping dead tomorrow but who knows? [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] ).

Since we are not living together (again [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] ), it is my sole responsibility again, but again, from what we have experienced in the past, I know DH does "get it".

Being separated this time seems to have absolved him from any parental responsibility when it comes to the school in particular (i.e., no going to parents' night [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] ), so I'm dealing with the school still alone (I guess he had one *good* year where he dealt with the school as well).

But he does "get it" and is very knowledgeable and I guess at this point I can't really expect anything else because he doesn't live with us.

Edited to add that I always check with him to make sure he has a current EpiPen in his knapsack, which he does. As far as PA, I think he'd be fine keeping our guy safe if I wasn't around.

He did kinda tick me off this past summer when he ate pb or other peanut products in his home, but, my soul, he was so careful (he explained it all in detail) when he did make a pb sandwich and to what lengths he cleaned up afterward, even though we weren't going over that day (or maybe even that week).

He can label read with the best of them and if he absolutely HAD to, I know Jess would be fine with him re PA.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[This message has been edited by csc (edited October 15, 2005).]

I think it is only natural that us moms are solely responsible for our children's PA. We are the ones that make all the appts, deal with school, homework etc. My hubby does help but I am the "Domestic Engineer" of the family so to speak. I also think that he is just more relaxed about the allergy than I am. Again I think that is a gender thing. Moms are just meant to worry more I guess.....

Pam

I would say that DH and I are equally as diligent and conservative. However, I am the "manager" of PA because that is my job as a SAHM, so it is mostly me who deals with the day-to-day aspect of managing the allergy.

I'd have to say that our situation is very similar to that of ryan's mom.

Dh and I are equally conservative. He has gone to meetings at school. He has called her preschool as well. However, most of the time I handle school issues since I am a stay at home mom.

I read most of the articles. I found pa.com and continue to read and post here. I then tell dh the info and he is good about remembering it. He also went to a FAAN conference with me recently. He speaks up for dd when necessary.

We are pretty equal in dealing with this. I just deal with a little more of the day to day management because I am home with dd and dh is at work.

I'm a single parent... well my daughter does have a father and he is active in her life but certainly not in her PA. He forgets to take the Epi pen with them to dinner and on vacations! So now my daughter who is 14 carries her own.

Its funny how our expectations are often based on our situations... when I was married I expected more help from my husband and I didn't get it and often felt frustrated by that. It certainly was an "issue" for us.

Now that I'm a single parent, I expect to do it all and what I love is that I know it will be done right and in a timely fashion. No expectations placed on someone else and I'm happy with that. So for me this topic is really a non issue... I know its all on me, whether we are talking about peanut allergy or fixing the roof, and I take care of it.

Susan

CSC, a little off topic but i know what you mean. As far as allergy my DH bought may contains over the weekend by accident but he knew I would be rereading ingredients so he didn't read past the middle. To many things to read while shopping.
Then the other night I said to him. On Wednesdays is library day for our little boy. If you ever have to pack him up don't forget that. Not like that will happen.
then the other night little one had a bad night mare. I kept soothing him back to sleep. My DH said "your a great mom". But I was thinking to myself you can do this to.
He really is an excellent dad but boy I can not imagine what my home would turn into if I suddenly got the flu or had to go out for more that an hour.
He does help but doesn't realize everything we have to take care of.
best of luck Claire

Hello All!!!
Let me chime in being the DH in this case. I'm a Big PITA when it comes to our son and his PA. My wife is at home with him (she works from home now) 24/7 (until I get home from work--well that doesn't make much sense but you get the point), except 2 days a week for pre-k. Since we found out about the PA a little over a year ago, we both locked arms together in this battle, and realized that to fully protect our son in every way possible, it would take vigilance and determination from the both of us. I can't imagine dealing with this allergy alone or half way...we are each others best support system. There are days when we need that extra assurance from each other when our DS coughs for no reason or there is a mystery bump on his face..."what's that" or "should we give him Benydrl" We truly are each others keeper.

Chris

My wife and I are togetehr in this. I handle the internet portion though!