Neg blood test Vent/advice

mightmom13

The test came back negative for milk allergy, per nurse "so DD is not allergic to milk, the doctor just wanted me to let you know." Alright, so now what? I debated but knew I was at home, had benadryl, a car, a phone, another adult near by; so I gave her a little skim string cheese - put it in her mouth, chewed its spit it back out and shook her head. She tried a little skim milk, let it dribble out, shook her head. No apparent rash, but sneezing and runny nose (which could be from congestion) and big hiccups (not so common) afterwards.

I know I am now the crazy mom at the ped office, I don't want to tell anyone the office called with neg results as to not be the crazy mom at home yet. Awaiting swallow study and mito initial work-up results the next month. Frustrated and feeling crazy when I guess I should be happy. Part of me is, it's just also frustrating that DD won't really eat ANYTHING, she is maybe getting 500 calorise a day. I could try eating some cooked dairy things I normally eat and maybe she would want to try it?

Thanks for the vent. I just know her office isn't going to give me any other allergy options now. I don't understand the other reactions before or why she gets congested/physically ill after things with dairy in them now.

lrn327

I don't know too much about your situation, but are you saying your pedi order tests for possible mitochondrial disease?  I don't know too much about it, but there is a mom on BMB board with a son with it.  I know she had a very long struggle trying to figure out what was going on.  I can ask her if she can talk to you if you'd like.

lrn327

Just read some of your other posts and realized you're unfortunately well-versed on mito huh? 

I'm really sorry and hugs to you.  Could you get the pedi or an allergist to do a food challenge in office to allay any further fears?  Maybe wait until your other results come back and maybe it will make more sense with what you're dealing with.  All the best to you.

mightmom13

lrn327:

Just read some of your other posts and realized you're unfortunately well-versed on mito huh? 

I'm really sorry and hugs to you.  Could you get the pedi or an allergist to do a food challenge in office to allay any further fears?  Maybe wait until your other results come back and maybe it will make more sense with what you're dealing with.  All the best to you.

Yeah, I have a mito disorder so when I took DD to my genetics doc and told them her symptoms they immediatly ordered tests. The pedi office isn't super and it took from 9 months to get this blood test; she had bad reflux/spit ups with formula.

She will also see a developmental ped for both her delays and to look for possible spectrum or SPD issues. I am very lucky that she is so intellecutally present; and i do trust that the foods she spits out may not be good for her and she somehow knows. It may be an intolerance, fat issue, or texture sensory issue. So a lot to rule out/find out.

I am hoping the developmental ped and my genetics doc can help more with the food issue; plus I am still being cautious until post swallow study. Thanks for your reply.

lrn327

mightmom13:

lrn327:

Just read some of your other posts and realized you're unfortunately well-versed on mito huh? 

I'm really sorry and hugs to you.  Could you get the pedi or an allergist to do a food challenge in office to allay any further fears?  Maybe wait until your other results come back and maybe it will make more sense with what you're dealing with.  All the best to you.

Yeah, I have a mito disorder so when I took DD to my genetics doc and told them her symptoms they immediatly ordered tests. The pedi office isn't super and it took from 9 months to get this blood test; she had bad reflux/spit ups with formula.

She will also see a developmental ped for both her delays and to look for possible spectrum or SPD issues. I am very lucky that she is so intellecutally present; and i do trust that the foods she spits out may not be good for her and she somehow knows. It may be an intolerance, fat issue, or texture sensory issue. So a lot to rule out/find out.

I am hoping the developmental ped and my genetics doc can help more with the food issue; plus I am still being cautious until post swallow study. Thanks for your reply.

It totally agree that LOs seem to *know* when something isn't right for them. I've seen my DS do it too.  Again, good luck with your journey.