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Divorce Support This forum is for discussing the emotional aspects of divorce: stress, anger, betrayal of trust and more.

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  #1  
Old 04-29-2019, 02:38 PM
iona6656 iona6656 is offline
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Default Frustrated- other Parent won't follow through on treatment

So- I put this in the support section because I don't think there's actually a damn thing I can do now.

D2- is actually 2.5 yrs old. She was referred to a treatment course by her regular allergist she's been seeing since she was 7 months old- for her severe dairy allergy. She's anaphylaxed once to dairy- and it was to baked milk product. The reaction was so severe that she needed an additional dose of epinephrine when we were at the hospital.

The treatment is called Oral Immuno Therapy (OIT)- it's commonly known for peanuts- whereby you build up a child's resistance to the allergen over a long period of time- by introducing a minuscule amount of the allergen and then "updosing" over a period of 8-24 months.

It is not covered by health coverage in Ontario because the only real "cure" for food allergies is avoidance. However, it is recognized and covered up to a certain amount by private health insurance as long as: 1) it's prescribed by a physician- and usually has to be an allergist and immunology doctor and 2) it's done at a clinic by doctors.

It is currently done by the Allergy Clinic at Hamilton Health Sciences and a pediatric allergy clinic in Halton Region.

D2 has been identified by the Pediatric Allergists there as being a good candidate for Dairy OIT because her allergies are not hugely wide-ranging- and doesn't include nuts of any kind.

D2 is set to go to Kindergarten next year, and her allergist said if we can do it before she starts public school that would be ideal- as most severe reactions for kids unfortunately usually happen at school. (sharing of lunches, etc). She's in a Montessori school now and they're amazing about managing her allergies (they have the co-op placement student sit near her at lunch to make sure her food is not shared with the other kids).

So- ex and I both attended the intake session with the Allergy Clinic doing the OIT. She had bloodwork done- and the allergist followed up with us and said if we're interested, we need to get on the waiting list for the program. There's a package of information they require the parents to review before you get scheduled for the follow up. They send out an email asking for confirmation.

Guess who's not responding? Yep- soon to be ex. We've had this discussion in co-parent counselling. He said he's on board with the OIT- he thinks it's a good idea. But he said he wanted to do his own follow up on the information out there (there's medical studies, lots of articles, etc). Which, of course that's a valid position. This is a huge decision- not one to take lightly. And if he has concerns, he has every right to follow up and do the research into whether this is the right course of action for D2. BUT- This was months ago- back in December or January.

Since then the Allergy clinic has followed up with us- and he just straight up refuses to confirm with the clinic that he's read the information. I sent him an OFW message asking if he has concerns with the information he's reviewed. Could we discuss this asap with our co-parent therapist? Does he want to ask or follow up with D2s regular allergist, etc etc etc..he said "Let's touch base. Let's talk".

I just don't want to deal with him any more than I need to- but for this, I will. Timinig is important here. OIT takes usually about a 1- 1.5 yrs to complete. I would like D2 to complete it before she starts JK.

Oh yeah- it costs a bucket of money too. $8-15K. My insurance will cover up to 3K, and exes should be about the same. We can easily absorb the additional cost. I would be willing to go it alone if that's what it takes.

But I think we BOTH need to be on board with the course of action since it includes daily dosing- and it's very particular. I would want both of us to know how to do it. And what to watch for, etc.

I don't know what to do. I feel incredibly frustrated. Ex seemed on board with it when suggested by D2's allergist. And after the intake at the clinic. He has not given a reason why he's dragging his heels now. If he has concerns about the treatment or it's efficacy- ok. Say that. You've been given almost 5 months to go do your own research. The only thing I can think of is that it's a control thing. But for fucks sake- this could mean the difference of your kid not dying if they accidentally ingest dairy.
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Old 04-29-2019, 06:12 PM
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arabian arabian is offline
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my reaction to this, in all honesty, is what do kids do whose parents don't have the $$ to put them in this study/control group?

I personally think that focused training for your child in the "avoidance" would be better. My son was diagnosed early with asthma (which can be life-threatening). As parents we had to work with him to deal with him.

You are a tremendous, caring mother and have ensured your child is well-supervised when not in your care. I would target your efforts on helping your child make correct decisions. If you aren't comfortable doing that then you might have to reconsider your lifestyle and look at home schooling perhaps?
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Old 04-30-2019, 10:05 AM
iona6656 iona6656 is offline
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Quote:
Originally Posted by arabian View Post
my reaction to this, in all honesty, is what do kids do whose parents don't have the $$ to put them in this study/control group?
the treatment at Hamilton Health Sciences is free- to my knowledge. I gather the wait list is longer. D2's allergist suggested the Burlington clinic because she knows the Pediatric Allergists there very well- and well, yeah- we have the money to get D2 into a private clinic for faster treatment.

It should be noted- the treatments are not guaranteed to work. You have to try them and go slowly. You pay each time you go for a treatment- which is approx every two weeks- then at home you have to follow a really specific protocol and dose the kid every night. The good thing is not that you have to pay for all the treatment upfront. This is not for the faint of heart. But neither is having a kid that could die from something as simple as a grilled cheese sandwich.

Quote:
I personally think that focused training for your child in the "avoidance" would be better. My son was diagnosed early with asthma (which can be life-threatening). As parents we had to work with him to deal with him.
I think having differing opinions is healthy and worthwhile exploring. But can I ask you why? Avoidance for something like peanuts is actually fairly easy. society- as a whole- has gotten aboard the peanut allergy train. Most schools are peanut and nut free zones. But dairy? Elementary school basically revolves around dairy. Not only school- but every where you go. Avoidance is difficult, to say the least.

I'm not sure why we wouldn't try it to see if it works for D2. No child has died from OIT treatment. But children are dying- from allergic reactions. And unfortunately milk is quickly catching up to peanuts as the leading cause of death from allergic reactions (according to Allergic Living magazine).

Also OIT isn't a cure- it's a method by which we can reduce the chances of an anaphylactic reaction. She might vomit- or get a few hives- but it won't be fatal if she accidentally ingests dairy. And again- I would pay anything for that. Not only to reduce the chances of her dying- but her having a chance to interact and socialize "normally" for a little kid. We have to avoid certain parties and other events with her friends because of her allergy (e.g. no parties at McDonalds or dairy queen- too much dairy on the surfaces for them to be safe). She can never eat the cake at parties, even though she asks. I usually bring a vegan cupcake for her or safe lollipops. Luckily she doesn't have much of a sweet tooth.

Quote:
You are a tremendous, caring mother and have ensured your child is well-supervised when not in your care. I would target your efforts on helping your child make correct decisions. If you aren't comfortable doing that then you might have to reconsider your lifestyle and look at home schooling perhaps?
Thank you. I work really hard with her to teach her about her allergies without scaring her. But she knows if she eats dairy, mustard or eggs she will get sick. She's learned to ask people if they've washed their hands before they pick her up- and she's not to take any food from anyone. The only foods she can eat are given to her by mom, dad, grandma or grandpa or her teachers at school.

I'm not sure homeschooling is an option. I'm the only source of income. I'm extremely lucky that my mom took early retirement- in case preschool didn't work out for her because of her allergies. But her school is amazing. If anything- I might keep her there for JK and SK...or look for small private school. But again- all this could potentially be addressed by doing OIT. I'm not sure why we wouldn't try it.
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Old 04-30-2019, 11:01 AM
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Well it sounds as though you will go forward with the treatment regardless of what your ex feels. I totally understand your determination to get on with treatment asap. Hopefully your ex will follow through and somehow discuss and concur with your position. Having a child go through any medical regime is no fun and would certainly be easier if both parents were on board with it.

Good luck!
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Old 04-30-2019, 11:08 AM
iona6656 iona6656 is offline
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You know, I really won't (go ahead with the treatment, regardless of ex's feelings).

I know ex is going to have overnights at some point- and have entire days nad weekends with D2- and increased parenting time, etc...I wouldn't want to do this unless we're both on board with this- because the dosing is so hyper specific. If he wasn't comfortable with it- I get that.

What is frustrating is that his total refusal to even address anything.

I can't help but feel it's because he wants me to beg. Which, you know- for D2s sake- I would. He wants to "keep talking". Sure- let's keep talking about THIS- let's address it. Let's talk about his concerns on whether this is right for D2. Should we wait till she's older? At this point, I don't even know if these are concerns...??
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Old 04-30-2019, 11:15 AM
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Could it be something that is put in your order? Similar to iona will consult but ultimately the decision on medical treatment is hers and all parties will comply?

I donít understand it. You have an opportunity to make your child better, why say no? I liken it to picking a private school over public to get into a specific university program, getting a cast for a broken bone, vaccinating them etc. I donít understand your ex and his motivations!
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Old 04-30-2019, 11:43 AM
iona6656 iona6656 is offline
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Originally Posted by rockscan View Post
Could it be something that is put in your order? Similar to iona will consult but ultimately the decision on medical treatment is hers and all parties will comply?

I donít understand it. You have an opportunity to make your child better, why say no? I liken it to picking a private school over public to get into a specific university program, getting a cast for a broken bone, vaccinating them etc. I donít understand your ex and his motivations!
It CAN be put in the order. I've spoken about it (briefly) with my lawyer- and asked if it's something I can bring a motion on to get it done sooner- and he said yes. But again- this is the frustration- I don't want to litigate this and cause it to be a source of anger for ex. This is something good for our kid. Also, when/if he gets overnights during this process- I want to ensure he's on board with it- because I wouldn't want him skipping her dose. I've seen the threads on here about what happens when the parents disagree about medication that isn't strictly required- e.g. ADHD medication.

My ex's motivation- I suspect- is control. It's always control. He wants it; and simultaneously sees himself as a victim of me calling the shots. I was the one who booked the appointments at the clinic. I am the one pushing this. So, to ensure that he has some control- it will be done on HIS timeline. It was the same thing with child support. It's always the same thing. Doesn't matter what's good for his kid- it's about how HE feels about it.
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Old 04-30-2019, 11:57 AM
rockscan rockscan is offline
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He wont do himself any favours with that attitude. It may also mean limited time with kid during hours outside the dosing.
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Old 04-30-2019, 03:14 PM
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I wonder if your ex is telling you to "keep talking" and I would hazard a guess that he is paving the road to prove that the two of you can co-parent... discuss things... work things out.
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Old 04-30-2019, 04:18 PM
iona6656 iona6656 is offline
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Quote:
Originally Posted by arabian View Post
I wonder if your ex is telling you to "keep talking" and I would hazard a guess that he is paving the road to prove that the two of you can co-parent... discuss things... work things out.
Yep, that's not lost on me either. He likes to occasionally text me questions about D2's likes and wants "What kind of candy does she eat?"..."I want to buy her a bike- does she have a helmet?"...I usually ask him to keep conversations about D2 to OFW, and provide him with an answer on there.

He's done the same thing here- "Let's touch base. Let's keep talking".
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