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T/ED Refugees check in here..... - Page 9

post #161 of 203
My dr is such a dingdong, I wonder if he would do this. Do you bring them information or is this something most dr's know about?

It makes me a little nervous to think about knowing problem foods. It would be helpful, but it is also scary to think about what else could be out...
post #162 of 203
Thread Starter 
Quote:
It makes me a little nervous to think about knowing problem foods. It would be helpful, but it is also scary to think about what else could be out...
I know the feeling. But you (and us all) need to keep moving forward to get through this & heal ourselves & our LOs. At least that's what I keep telling myself.
post #163 of 203
Matey,

I am with a DAN! doctor now and he is way more progressive than our three past pediatricians that we left for various reasons. He sees gut issues every day, so he enlightened me on all the tests out there.
post #164 of 203
Quote:
Originally Posted by matey View Post
My dr is such a dingdong, I wonder if he would do this. Do you bring them information or is this something most dr's know about?

It makes me a little nervous to think about knowing problem foods. It would be helpful, but it is also scary to think about what else could be out...
Our ped didn't know ANYTHING about this stuff... I basically did all the research myself, brought it to him, told him which lab we wanted to use, he said ok. He seems willing to do just about anything I suggest allergy-wise; I think he's trying to make up for being so un-helpful about it in the beginning.
post #165 of 203
Quote:
Originally Posted by changingseasons View Post
Our ped didn't know ANYTHING about this stuff... I basically did all the research myself, brought it to him, told him which lab we wanted to use, he said ok. He seems willing to do just about anything I suggest allergy-wise; I think he's trying to make up for being so un-helpful about it in the beginning.
Yeah, last I talked to my dr he said it wasnt food allegies causing the skin problems. I elimated dairy anyways and guess what, he has been clear for a while (well, mostly clear, like I hafve to explain, you mamas know what I am talking about)
post #166 of 203
Quick update while John is sleeping way late...I'm baffled!

We finally got his blood drawn Thursday for the Immuno Labs test. They couldn't do it at the office, they couldn't find any veins except for 1 in his foot, and even that didn't work. I told them they could dig unless it got too stressful, and John did wonderfully. He got mad, but it wasn't a nightmare, and if it wasn't going anywhere, they got out.

I went to Children's Medical Center after they called around to hospitals, and they did it lickety split, but had to use both arms. Again, John did wonderfully. I wonder if the itching has been so bad that the needle was nothing?

Unfortunately, he fall again, this time buckled in his car seat (thank goodness), from some chairs. This on the day of the unsuccessful vein hunt. It was not a Good Day.

Anyway, we have successfully transitioned off the petroleum products to shea butter on his face and California Baby lotion on his body. He needs shea butter or something creamier on his body but also the ease that I don't get with shea butter right now.

John's not happy in his exersaucer...
post #167 of 203
Thread Starter 
Sorry about the blood draw. How long will the results take? Did they have a problem with drawing blood for someone else's test? Did they send the blood in?
post #168 of 203
Hi everyone...

I've been lurking and I think I posted once or twice....

We are 4 weeks into a very restrictive diet. I'm bored with food and frustrated alot...but DS's skin is looker better. I "think" we are at baseline and now if I eat something....his skin flares which is disappointing, but at lease it's a no-go for that food.

I can't just eat TED like the allergist wants me to....but I'm off of ALL of DS allergens that he tested IGE positive to.

How long should I stay away from all these allergens? (see sig...) and which should I introduce first? I'm ok with waiting another month or two though.

I'm finally finding some snacks, etc to eat. Took a while to hunt those down...
post #169 of 203
Chlobo - results take 2-3 weks. Children's gave me the blood, which I took back to the ped's office. They were about the only place to take the blood, b/c at other places the doc didn't have privileges there. Her office sent in the order, and all (hehe) I had to do was show up, give them insurance info, sign stuff, and go to the lab and do the draw. Then, when I dropped off the blood, I forgot to leave the paperwork : so I had to drive back there (about 25 minutes away) the next morning so they could mail it off.

I walked forever because I didn't know where I was going at first and parked in the wrong lot. Luckily, the buildings were connected by skybridges, although I did have to walk through a covered parking lot. Thank goodness for the hotsling and stroller; I wore John in the sling and put the paperwork in the infant seat (still use that for now, but need to get convertibles PDQ).

I believe we're getting the 115-food test plus a yeast test. I think yeast might be a strong possibility as well. I've recently gotten, um, a bit itchy, but not enough for a yeast infection. John is horribly itchy when he's sleepy, and he is getting an awful rash from his poop. His tongue is still a bit white, but not as much as before. I don't think his genital itch is as bad as it used to be, but he still grabs himself a lot during diaper changes.

Funny thing I noticed. He's had 2 instances of vomiting lately. Both occured around 3 hours after taking his Florastor (beneficial yeast probiotic), which we both took every day for about 3 weeks then switched to acidopholus/bifidus (per the nutritionist). First dose since switching probiotics was due to ssupected upset tummy, and 2nd dose was recommended by nutritionist (was trying to start him taking it along with the bifidus). I think it was that which made him throw up.
post #170 of 203
Thread Starter 
My DS grabs himself during diaper changes but then he laughs hysterically.

PM - how much was the 115 food panel?
post #171 of 203
The allergist refuses to test further (the RAST was done by Primary...). I'd like to know what else he's sensitive to.... just curious about the food panel as well....
post #172 of 203
Nothing to say really, just bumping this up.
post #173 of 203
Today brought...
rash on forehead that he keeps itching
projectile spit up
slimy poop
Oh yeah, and we're up at 2 am due to his fitful sleep

I am sure it is all connected, but I dont know how. I keep forgetting for both of us to take the probiotic. I need to remember that.
post #174 of 203
It sounds like you had a very difficult day and night.
post #175 of 203
Oh Matey... I'm so sorry. We're having issues over here too. Exczema keeps getting brighter and brighter red, DD is itching like mad, her diaper area rashy thing has popped back up....

I think it's the coconut milk I've had on my rotation diet. OR the citric acid in the coconut milk (keeping my fingers crossed for that option, because I really need the calories from the coconut milk in my diet!!)
post #176 of 203
I just want to say to Matey and Changing Seasons and whoever else is having an extra rough time with their LOs right now- when DS was much younger, things were worse. Even though we had a real setback recently, the eczema is NOTHING like it was back then and actually, nothing else is as bad as it was THEN. DS's main problem- and thank God we finally know what it IS- is a large amount of yeast in his gut (and some bad bacteria overgrowth) and that can lead to so many problems- especially leaky gut and the unbelievable amount of food sensitivities. From all I've been reading, yeast is most likely the culprit in SO many gut/digestive issues for most people. Not that you all don't know this, but I just wanted try to put some light at the end of your tunnels (if possible). It's so hard to see that in the midst of the worst, but looking back, I now know, we have passed the worst. And healing just takes time and during that time, it often looks like nothing is working. Don't lose heart- hugs to you mamas!
post #177 of 203
Thanks!!! We will take all the encouragement we can get over here.
post #178 of 203
You know, even though things are have been kinda down right now, it doesnt compare at all to how horrible it was just 2 months ago. IAnd I just dont think I would have gotten a handle on it so quickly if it wasnt for all the ladies on here. I think right now is a minor set back, but think is I KNOW I had dairy last weekend while at my parents. I t was really hard to figure out where it all was in someone else's cooking. So,I am being extra careful to get him back to feeling better.

Oh, and I love sorbet! Itis dairy free and rocks my world! Just wanted to add that!
post #179 of 203
Quote:
Originally Posted by matey View Post
Oh, and I love sorbet! Itis dairy free and rocks my world! Just wanted to add that!
Do you make your own or purchase it? If you purchase, could you provide the name of a good brand? All the ones I've checked have dairy.
post #180 of 203
Quote:
Originally Posted by JacquelineR View Post
Do you make your own or purchase it? If you purchase, could you provide the name of a good brand? All the ones I've checked have dairy.
I know, isn't that insane????? We have tons of safe brands here at Whole Foods and other health food stores (sorry, can't think of brands off the top of my head) but I am shocked at how many sorbets and sherbets have milk in them. What happened to water, fruit and sugar?
Oh it's coming to me - well, have you had Coconut Bliss? It's vegan but not available on the east coast apparently. It's not sorbet but basically ice cream made with coconut cream instead of cow cream. The chocolate flavor tastes like premium choc. ice cream - it is heavenly, and I'm not even a chocolate person. Another brand I like is Ciao Bella I think - they have great coconut and blood orange sorbet, among others.

ETA: just noticed you're in OR. you should be able to find coconut bliss.
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