What is your DC allergic to? - Page 2

[preemiemamarach]

Originally Posted by JacquelineR

I hate to be nosy, but may I ask what (if any) diagnosis he has, Rachel?

Not nosy at all! He is still undiagnosed, but everyone (except our current geneticist) thinks we are looking at some sort of extremely rare metabolic disorder, or mitochondrial disease. In a nutshell, he has:

1- an immune deficiency (including poor t cell function), but not something severe enough to automatically get him on IVIG;
2- severe food intolerances (dunno if the proteins are IgE or not; he had negative SPT for milk and soy)
3- gross motor and speech delays and regressions
4- mild right-sided weakness (including a tongue that can't move food boluses, which means he can't eat anything beyond meltables)
4- failure to thrive (although he's gaining weight on the amino acid stuff)
5- multiple histological abnormalities in his intestines and liver, although nobody has agreed on what those mean
6- activity intolerance (he has to lay down and rest while playing every few minutes)

our geneticist got to the end of his suspected disorders and gave up. he said that since DS is not cognitively delayed, he does not have a disorder of fatty acid metabolism (though he has most of the other symptoms of those diseases). We are currently looking for an out of state geneticist to do a chart review we can bill to our insurance.

He's super happy, though, and looks like a healthy 10-12 month old- only he's 18.5 months.

[lil_miss_understood]

Originally Posted by preemiemamarach

Not nosy at all! He is still undiagnosed, but everyone (except our current geneticist) thinks we are looking at some sort of extremely rare metabolic disorder, or mitochondrial disease. In a nutshell, he has:

1- an immune deficiency (including poor t cell function), but not something severe enough to automatically get him on IVIG;
2- severe food intolerances (dunno if the proteins are IgE or not; he had negative SPT for milk and soy)
3- gross motor and speech delays and regressions
4- mild right-sided weakness (including a tongue that can't move food boluses, which means he can't eat anything beyond meltables)
4- failure to thrive (although he's gaining weight on the amino acid stuff)
5- multiple histological abnormalities in his intestines and liver, although nobody has agreed on what those mean
6- activity intolerance (he has to lay down and rest while playing every few minutes)

our geneticist got to the end of his suspected disorders and gave up. he said that since DS is not cognitively delayed, he does not have a disorder of fatty acid metabolism (though he has most of the other symptoms of those diseases). We are currently looking for an out of state geneticist to do a chart review we can bill to our insurance.

He's super happy, though, and looks like a healthy 10-12 month old- only he's 18.5 months.

I can't even imagine. I can try but I'm sure it's nowhere near the reality. Big to you.
Your ds is 2 weeks younger than my own ds2.

[capsgirl08]

Thanks, all, for your time and resources. Preemie, my heart goes out to your little guy. Hopefully, you can get to the bottom of all of it.

[capsgirl08]

fruitful --- All I'm actually aware of is banana, avocado, and kiwi -- but maybe there are more?

[lil_miss_understood]

Originally Posted by capsgirl08

fruitful --- All I'm actually aware of is banana, avocado, and kiwi -- but maybe there are more?

You're doing better than me. I didn't even know that kiwi was one of them.

[momma_c]

my son is 15 months old, he is allergic to dairy, soy, eggs, peanut, wheat, rice, beef, banana, avocado, pear, potato, gluten, oat, rye, citrus. i am not sure if i got them all. i am sure i havent. and we know from the combination of his reactions and his most recent testing, he was tested for the top 8 at 6 months old but had the big testing done, blood and patch test, in november.
his reactions are varied but all include flaring eczema, and otherwise there is no sleep, screaming, mucousy stool, runny nose, dark circles under his eyes, hyperactivity. and i guess i should add, he is anaphylactic to milk and eggs. you name it, it happens to him.