DS and DH are at Mt. Sinai for DS's dairy challenge. I am a total mess. We decided its better for the kids if I do not go to challenges anymore. My anxiety is just too much and they sense it. I can't stop weeping and hyperventilating. I know he is in good hands. I know not going was the right decision. If you have a moment this morning, please say a quick prayer or think of my DS. And if you have an extra moment, please think of me :hiding:
I came so early specifically to offer you a virtual hug, Mary. :grouphug:
:crossed: of course that it goes well for them, too. :heart:
Thanks. He failed. Took one sip and had a hive and a scratchy throat after 5-10 minutes. The gave him some medicine (DH did not say what) and now they hang our waiting for a few hours. I am bummed for him. It would have changed his life.
Well, on the bright side, it was neither a very long day nor a very scary one, it sounds like. So there is that. :grouphug:
True. I am just so sad for him. I was trying not to get my hopes up but I had dreams about pizza parties at school (5th grade dance, year end party usually have pizza) and an easier time in Middle School. I swear the dairy allergy is just so hard. Dairy is everywhere. I am at the point where I do not even want to do the baked egg challenge and I feel sort of guilty bc I haven't been making the milk muffins in the last 2 months bc of DD and what if I had, would that have helped today? I HATE food allergies. I can live with my PA/TNA but I just wish my kids hadn't won this genetic prize.
Stop beating yourself up about it. At least you know he's still allergic, which can be reassuring in some ways: all the avoidance isn't for nothing. It's a good reminder to him as well. Don't be discouraged. (I'm not sure if the milk muffins would have made much of a difference. Even if they increased his tolerance levels, two sips of milk, or even three, wouldn't be a pass either.)
Hugs to you and thinking of your DS today.
:yes: Milk is a significant for children to cope with. It rewrote my playbook when 'all' I was dealing with was largely PA only. Then again milk has rewritten its own playbook in terms of outgrowth ages. It doesn't escape my notice that Sinai is willing to rechallenge often. I think that means the path for your children is following outgrowth the window is what is largely unknown.
Thanks. When he was a baby I was told that most kids outgrew milk by 3/5 - I know it's changed but I feel like it's really a life sentence now.
Oh MaryM, I'm so sorry. :heart: I've been thinking about him this morning.
Yes--having milk would have been such a life changer. I was so, so hoping he'd pass, because yes, as a teen being able to do those things you mentioned would be really great.
There's still time for him to outgrow. Maybe in a few years it will happen.
Regardless, you're dealing with huge disappointment today. (((hugs for you and your kiddo)))
Mary, Boo's DS didn't outgrow until his teens.
My DD was still pretty allergic at your DS' age, too.
:grouphug: It really can all change during adolescence.
Thanks for the hugs and encouragement. I was thinking about Boo's DS.
I'm just feeling very alone. DH gets it but has never lived it. I'm not sure if he realizes that I really did ask for a priest when I had the one BAD reaction and thinking about my babies dealing with this overwhelms me sometimes.
I will add that it's one thing to deal with FAs yourself. And it's a pain. And it can impact career options and social options. And it's a real pain.
BUT--it's so, so different to worry about them for your child. It's just a different dynamic and IMHO a much more difficult one. I'd toss a couple of other FAs onto my plate if it meant taking DS' FA away from him (and his is just peanut so no comparison really to dealing with egg or milk).
Of course you dealt with FAs growing up, and I didn't until I had already had DS. Mine were adult onset. But with all my allergies and with the FAs my mom said I had as a kid, I know it was my genetic bomb that predisposed DS to FAs (he has outgrown treenuts and when he was very young was sensitive to milk but was never dx). You really hate that for your child--to deal with all of it.
So when you posted what you did, my heart hurt a bit more for you.
It all really sucks.
But you've got some good folks here to help. :heart:
He may handle his stress differently and see his role as more stalwart. My husband is better at challenges, has an outward appearance of relaxed or indifferent in a procedural role in managing anaphylaxis/allergens. He's not as strong building management by seeking out data beyond spoon feeding, managing confrontations when necessary and administrative procedures. Net result is balance between the two of us. If I were not here on my side of the equation he'd probably manage differently. As it is he can afford to take his side of the risk management with more facade of aloofness.
I don't think it's really known when each child will outgrow --- it's a wild card IMO. It's not what I would consider a life sentence. DD failed her baked milk and baked egg challenges this last summer ..... but who knows. Her body is still changing. Heck, adults can suddenly develop allergies, so why can't adults "outgrow" allergies?
I let DH go to the kids' challenges when they were younger, too .... for the same reason. Now that they are older, I can keep myself in check during challenges.
Don't give up hope. But at the same time, you know how to keep your child safe, and it's business as usual, for now.
:grouphug:
Ginger, thank you. I just feel defeated today. I know we will keep on and he can still outgrow.
Yes, I know that feeling. :console:
DD has a challenge this week, to walnuts. Trying to open her diet, very slowly. She passed the pecan challenge before; now walnuts.
Good luck to her, GP!
DH and DS are on their way home. We hadn't spoken since 9:30 when the challenge ended. The allergist is very frustrated. She said he is so close, his numbers are so low and she gave us 3 options:
1) Keep eating baked dairy and retest in a year
2) Pizza challenge
3) Go back and as Dr. Nowack put it, kick this in the "a**" - (Going Nuts DS went to her and she is funny) - take a smaller dose of milk - maybe a teaspoon ( he had about 3 ounces and got a hive and a bit itchy on a scale of 1-10 he felt his itchiness was a 3) and see what happens. If he does not react he would be dosed with that amount everyday.
A lot to think about but I am glad she is frustrated and has given us options. I felt like this was it before and now as much as challenges are hard, I feel more optimistic. DH asked about anaphylaxis and she said he had a pretty big dose of milk and only got a hive and itchy - it did not progress. Its a good sign.
I MUST make milk muffins more often. So I will be baking more tomorrow.
Also, Mt. Sinai apparently has a program or a therapist for kids dealing with after effects of Epi/Ana reactions. She said what DH described about DD is very common and suggested we try it. The first session is free and often kids are much better after one session. I will look into that for her.
That actually sounds promising. You've got some options!
so glad you found something for DD. That may be very helpful.
The tail end about therapy - I wanted to suggest in your other thread but wasn't sure how open you would be or her or even if you could find a therapist who deals with this. I wanted to find one for DS1 at one point but it's hard because you do need to word it differently with food allergies than just generalized anxiety which tends to be that anxiety won't kill you. But there is that line where you do have to have to be hypervigilant and the reality is that it can kill you.
Each passed challenge for us was amazing. I won't lie. And prior to each challenge, you think about the ways it will change your life and then when it fails, you forget in some ways well it's not like anything has really changed in our life, it's more about the goal being just out of reach. And dangit, you just want to hug the prize really really hard!
I think it is why I have put off testing and asking about egg challenges. Not sure with all else going on, that mentally I could handle it. My bigger concern being, can DS1 hack another failed challenge. He actually liked the eggs and the french toast (I was surprised at the scrambled eggs because they were bordering on cold and really an acquired taste).
I so hear you on the dairy thing - peanuts and tree nuts are not that big a deal but eggs and wheat are a huge struggle.
Just wanted to offer :heart:
Thank you YKW. Failed challenges are hard. This is the 3rd one in the last 1.5 years. BUT the reactions have all been quite mild so they have been disappointing to DS but he has not been tramatized. When I spoke to him a little while ago after DH filled me in, I mentioned that it's great that we have learned something today. DH and I agree that DS will be involved in the decision making process.
I'm thrilled that Sinai offers help for FA kids. DD needs it and I know she will get the right guidance from them.
I don't know what you have in mind but with those options I'd go 1, then 2, then 3. Sequential. Lock in the gains.
:grouphug: Mary. I'm sorry it didn't go better.
Thanks Mookie, I appreciate you stopping in here. I know you have a lot on your plate right now.
Guess, we've been doing baked dairy for almost 2 years so we may go with pizza challenge. Too tired and emotionally spent to think about it today.
DS wants his favorite meal - chicken parm made with Daiya non dairy cheese. I need to get moving. Must pick DD up at 3:30 and get her to CCD.
Just got home and wanted to check....so sorry it was a fail. It was conclusive though which is a good thing. And it's not a new allergy, you've got this!
Such a disappointment for all of you though.
Thanks PC.
:grouphug: Mary. I know we talked earlier, but wanted to give you more hugs.
:grouphug: I wish things could have gone differently for you and DS.
A HUGE thank you to FAS. I really do not know what I would do with out you all. It was a rough day but DS is ok and we have options. The emotional toll is huge for me sometimes but DS is such a well adjusted kid. He is eager to be part of the decision we will be making in the near future. On that note, I am off to bed. I feel like I have been run over by a truck. I had 2 nice glasses of wine while I made DS his favorite meal and now its time to end this day. Lets hope I am not up at 4am since I'm going to bed soooo early!
Thanks again for all the kind words and encouragement.
So sorry Mary. I am just getting to this now. I know it feels like a kick in the gut, but it sounds like Dr. Novak views you guys as partners, and that's good. Even bettter is DS's eagerness to be responsible for the management of his allergies.
Our kids take this stuff so much better than we do.
:console: :console: :console:
:grouphug: :grouphug: :grouphug:
I came to see how he was doing after getting home. I'm glad he's doing so well. And I'm glad you had some wine available! :)
Thanks Mac. He was certainly disappointed and a bit sad. He asked to fall asleep with me so we snuggled a bit and chatted. He told me he was sad and we talked about how nothing in his life has changed. He still is super social, has good friends and a mom who always makes him great treats. We talked about the fact that if he had a dairy allergy 30 years ago he would not have Daiya cheese or Divvies or the yummy vanilla soy ice cream he loves. I also told him how much more aware restaurants are becoming and that he will have more dining out options as he gets older. We talked a bit about the options Dr. N gave us yesterday. He isn't sure what he wants to do, but I think he may be leaning towards the most aggressive option - retrying a smaller amount of milk because he did not like the pizza. I told him even if he doesn't like the pizza brand they use for the challenge that if he passes he can try other kinds. I also said if he wants to wait a year and just continue with baked milk that that's fine too. We have to sit down and discuss and then email the doctor our questions. We are all still tired today. DS was asleep before 8 (as was I) and he didn't wake up until 7:30. He is usually up before 7.
Sounds like a good chat Mary and that your son is handling his disappointment well.
He sounds like he has such a good head on his shoulders. Glad you had that nice talk.
Quote from: Macabre on January 07, 2015, 02:13:19 PM
He sounds like he has such a good head on his shoulders. Glad you had that nice talk.
Her certainly does. Very mature!