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Attachment Parenting
webMistress0609
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Saw the Acupuncturist. I'm Just... Done
webMistress0609
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We saw the acupuncturist this morning. She does some Bio-Set allergy clearing thing. It sounds like BS to me but Western medicine has been no help to us at all & I'll try anything at this point. Let's just say I'm skeptical but hopeful.
DH on the other hand, is highly pissed. He's very much a cut & dry science has to back it up kind of guy. Okay fine, but at this point we've been to doctors & tried treatments & diet changes & Ari continues to worsen. We are still just as bad as we were when he was labeled a "colicky" baby at 4 weeks of age. The new round of diet eliminations seemed to help his sleep & some eczema, but then last night he slept for crap again & his eczema is back full force this morning. It's only been 4 days on the new diet so I'm not ready to call defeat yet, but I'm sure there's another allergen lurking. We only ran 11 tests because that's about all the doctor could fit on his back. Whatever, we know of 15 definite allergens right now, which is ridiculous. 15. fvcking. allergens.
We have an appt with Ari's pedi to see if he has an idea for getting into GI quicker. I don't like our options with GI - we're looking at pH probes & endoscopies, repeated over & over, tests which are not a walk in the park for Ari. They'll almost definitely rec weaning & switching to Neocate in quick order, & pulling nearly all - and possibly all - foods. Plus more drugs - steroids, more reflux meds, antihistimines. I'm sick of it. I'm sick of more drugs that don't work. I'm tired of not being able to eat anything & then finding out even non-allergenic foods make my son sick. I'm tired of having to listen to my son cry on & off all day & not be able to help. I'm tired of fighting with my DH over stupid crap b/c we're so tired & stressed out. I'm tired of eating up all my paid time off at work for doctors appts. I'm tired of having no one understand so I have to post long whiny rants on a message board. I'm just ... tired.
So DH pretty much tells me he's not behind the acupuncture at all when we get home. He wants to see the GI. Okay, fine, we maybe we'll get in before our Sept appt, maybe not. We're on the list. He already knows that. He doesn't want to do the acupuncture. Okay fine, what else do you suggest? Pull more foods. Okay fine, we're running out of foods, so I'll have to wean & move him to Neocate & hope he drinks it. DH doesn't like that. Well neither do I so that's why we saw the voodoo lady. Basically he doesn't like any of the traditional treatments. Neither do I. So we're arguing over nothing really but he doesn't want to spend $$ we could use on voodoo. Neither do I but I just want my son to stop crying & be able to eat & nurse. I want him to be like other kids that can eat food. I want to stop having multiple emotional breakdowns per week b/c our lives our hell. That's all.
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Re: Saw the Acupuncturist. I'm Just... Done
hugs! sorry you are having such a bad day. eczema sucks. there are no other words for it. i'd offer more suggestions- but i know you've already tried pretty much everything.
ETA- i can't remember from previous posts- but any way a friend/family member can come hang out with Ari for a few hours so that you and DH can just have a night/few hours to nap/go out for dinner/have time to yourselves and get a break?
Hi, I just want to reach out from the land of lurk and let you know that I really feel for you. My DD has a milk protein allergy but nothing like what you are going through...
If you do decide to try Neocate please do not beat yourself up about it. It will not take away from your efforts or your special bond with your little guy.
I'm mostly a lurker, but your every post amazes me with your dedication and persistance. I think you are amazing for dealing with all of this as well as you are. I'd be a mess, you are totally entitled to as many breakdowns as you need. Not that they help, I just wish you could figure it all out.
That may be an idea. It seems like Ari gets sensitized to more & more stuff all the time. Like hummus - used to be the one sure fire thing we could feed him now it give him diarrhea like all he!!. Love this suggestion!
I wish I had some advice or something for you :-( Or wish I was closer so I could come over and give you a break!
But know you can vent here anytime you need too - not sure if that helps but it is something.
Are there any support groups or message boards online anywhere for parents dealing with similar issues? I'm sure you've thought of that already...
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For all I know nothing. Ugh. Right now we know he's allergic and/or sensitive to wheat, soy, dairy, corn, egg, citrus, plums, potato, rice, carrot, tree nuts, peanut, legumes, chicken. There's one I'm forgetting I think, ugh. The last 6 were just tested via patch, so we have to challenge a few b/c they were borderline, but from the food logs it's likely those were true positives.
I've been on turkey, quinoa, apples, bananas, & sweet potato for 4 days. I've had some coconut milk ice cream & that was going to be the 1st food to pull if he didn't improve. Like the last little bit of joy I have food wise, fantastic.
I'm sorry you are having such problems getting answers. I had to do elimination dieting with DD for about 4-6 months old and it was the most stressful thing in the world. People that haven't had to do it just don't understand how it changes your life - you can no longer *not* think about food. There is no such thing as a casual trip to a restaurant, fast food place or the grocery store.
If I were in your shoes I would switch to the formula (I assume it is formula) and see if that works. I know how hard it is to make that decision, but I think it would give you a mental and physical break. You can then regroup and take your time to figure out the food allergies. You are dealing with an extreme situation and sometimes that means that you have to alter the initial path you started on.
And I'd keep the appointment with the acupuncturist - voodoo or not! What's it going to hurt?
((hugs, mama))! your whole family is going through the ringer with this stuff. you'd have to be robots not to break down and feel the pressure sometimes.
my DH used to work with the DAN treatment protocols some. i don't know all his views on it, but i think he believes in 'leaky gut' as a underlying cause of a lot of allergies/sensitivies/etc, and definitely NOT just for kids on the autism spectrum. i'll ask him about the diet stuff, and see if there is anything i can report back.
It's not just a switch to formula. It's a switch to a formula that is uber expensive & that my insurance has told me it won't cover, I'd have to go into the appeals process. Plus we would probably have to pull all food from him. So no more sit down & eat together. Ari loves his food & loves to nurse. It would be really hard to say "no son, you can't eat like the rest of the family."
We may have no other choice, but not until I try everything else.
Please do! What is your DH's profession again? I know you mentioned it before but I don't recall.
What we're doing now isn't working, & the eliminations are getting more & more extreme. It's worth a try to do this.
he's a chiropractor, but a sort of specialist.
I am so sorry you are going through this. And like all the pp's you are amazing parents for hanging in there!
On a side note I think acupuncture is great. I haven't had it done in years, but had great results in the past. Sure it costs money, but it is worth a shot. So is DS getting the acupuncture or are you? I know it seems really odd to people, but it has been done for years and years..and worked for people!
I'm so sorry.....
Is there another GI doc you can see before September? That's such a long time to wait and you've been waiting so long.
Just because people see what they are, have they considered Crohn's Disease as a possible source of all this? I had terrible digestive issues that were misdiagnosed as allergies for a long time before they finally figured out it was Crohn's. My sensitivities would move around a ton; sometimes it was milk then it was gluten, then nuts, then soy - etc. It was impossible to eat because I never knew what was going to set me off. The symptoms are massive diarrhea, blood and mucus in stool when it gets bad, terrible reflux - basically inflammation in the entire digestive system.
Not a fun diagnosis to have, but at least the drugs (mostly) work. Probiotics also help once a flare is under control, but they don't do anything while one is going on. It's more common among northern European and Jewish people, and there seems to be a higher concentration among redheads (weird huh, but I know we both have red hair and red-headed babies). If you haven't had that diagnosis eliminated, it may make sense to look into it.
Good luck, thoughts and prayers!!!
Crohns hasn't been ruled out. Unfortunately we were ignored, told we were crazy (b/c food allergies are crazy, right?), told he just had colic, on & on for months. When we finally got into GI the 1st time we had taken him in for allergy testing then confirmed with eliminations. We'd been on the new diet 2 weeks & were seeing improvements, so both we & the GI thought so far so good. Then we ended up on the same path again, but his symptoms were more sleep related at 1st, so we thought residual stuff from his previous medical issues was causing it. It was still allergies/reflux/whatever it is all along, but we've been shuffled around a lot again. We obviously need a full work up by a GI at this point.
Oh, and we're redheaded Jews over here.
Unfortunately a lot of diseases are more common among both groups.
I totally feel you on being skeptical about non-Western medicine, but am in the same boat- Western medicine hasn't got all the answers. I'm of a scientific mindset just like your DH, and like proof and facts and data, but sometimes, you just have to take a leap of faith. Throwing $ at the allergist and GI when all they can do is tell you to further restrict Ari's diet and possibly put him on $$$ formula, versus trying out an alternative treatment that might actually provide a long term solution is, IMO, worth every cent.
You are seriously an amazing mother to go through all of this and not stop at anything to find a way to get your child healthy and happy. This just might have to be a battle royale that you pick with DH. Hopefully the acupuncture will show some results that can sway him.
Yeah I don't venture over to MDC often either cuz that's pretty extreme AP. I'm pretty far into AP but I've still been away from Ari, kwim?
I'll check those out though. I feel like I'm just floating with no answers or plan, & every website I've seen with a forum is more geared towards FF moms or they just aren't as bad as Ari. Like I would give anything to only be dairy free, kwim? I find myself getting a little bitter when ppl complain about cutting dairy or something like that, but I was there too just a few short months ago.
I'm so sorry you're having to deal with SO many allergies and so few answers. I really hope things get better for you.
I don't know if you already know about this site, but I've found the Kids with Food Allergies support forums to be very helpful with my two food allergic boys (sometimes just for the simple solace of feeling like I'm not alone in this!). They have a forum specifically for breasfeeding food allergic children, as well as a separate forum for children on no foods or very few foods. You can find a link to the support forums here: https://www.kidswithfoodallergies.org/community.html. I hope it's helpful for you.
Good luck!
i'm so sorry.
I think the voodoo is worth a shot. as is the rotating diet. and who knows - done in conjunction they might be the magic bullet!
I also agree that you need a break. even if it's just so you can nap. if I were closer, I would do it in a heartbeat.
lots of hugs.
So sorry you are going through this! A girl on another board had something similar w/her son (down to nursing, multiple allergies and eventually FTT) - it turned out he has/had an eosophinolic (sp?) disorder - basically allergic to almost every food
I know not all EE disorders are that extreme, but another avenue to explore? (though you may be already) - I think the website is www.apfed.org.
Good luck to you - you have put forth an amazing effort!
wow that is rough
Sorry your DH is not on the same page as you... last thing you need to deal with. I get his pro-science sentiment, but unconventional doesn't equal baseless. So you try acupuncture. I'm sure it's cheaper than going through the ordeal of switching to Neocate. I'd put it in the can't hurt category and worth a shot.
I think it's definitely worthwhile to investigate unconventional options, especially for a complex situation and you are doing an awesome job at weighing different options. There are great resources online for researching health issues. You never know when you'll stumble upon a message board, someone else's story, a journal article, etc. with valuable info.
There are some interesting thoughts here - "leaky gut," Crohn's, rotating foods, etc. Sorry you might lose out on your coconut! If you can still do bananas, I read they make a pretty good sorbet
https://www.thekitchn.com/thekitchn/stay-cool/how-to-make-creamy-ice-cream-with-just-one-ingredient-093414
(((Hugs))) to you and your family. I have been following your story and it breaks my heart, but you are such a strong mama! I agree w/ pp- check out the MDC forums, go for acupuncture (it's cheaper than switching to formula, anyhow!), check out the "leaky gut" theory, and take a breather with your DH and have a night to yourselves.
We are always here for you and you really do inspire us all. You are one tough cookie and one AWESOME MAMA!!!
Ok, this is the part that just made me cry. A lot. I have read all of your posts and have thought about how hard this is for you and for poor Ari who has no idea what is going on, but the thought of this being the only solution is really dismal and I sincerely hope you find an alternative SOON.
FWIW, I actually am a big believer in accupuncture and even voodoo (ok, not exactly voodoo, but a lot of non-Western traditions). I felt a billion times better toward the end of my pregnancy after undergoing accupuncture for a lot of ailments (including chronic ones) that I couldn't treat with the usual medications. I recognize that it can be hard to let go of the scientific evidence approach, but a leap of faith is sometimes in order.