Re: Brennan(previously titled S.)

[Guest guest]

" He has in the past been anemic, even with iron supplements. His last few labs

have not shown any anemia, though. The last few weeks, he is just really not

eating...He does seem pale to me. His " shiners " look more purple than

normal...His cheeks are not rosy, his eyes do not sparkle...he will run to his

room and throw himself on the bed and often fall asleep. He doesnt usually

nap...I am wondering if this sounds like he may be anemic again...But as a mom,

something seems off...I dont want the food thing to be an issue of control...he

just keeps saying he is full and he has only taken a bite or two of food. "

Hi, Valarie.

I believe that mom's generally know best so if you feel that something is not

right -- it isn't. I don't know what explains the past anemia but there are

many reasons that can contribute. You may want to read about iron deficiency

and how to test for it (which occurs before anemia), if this continues to be a

concern.

Yes, I am a registered dietitian. So, I know just enought to recognize that

their is a nutrition issue but, many times, I don't know how to solve them.

LOL. I used to work at a hospital and developed long-term relationships with

patients...it often took months to identify and solve problems. And, I did have

many successes. It is possible to get answers but does require a skilled

clinician to test, do an intervention, re-check, monitor, etc.. Remind you of

immunology? Sigh. You may want to see if your ID doc or your hospital has an

in-house RD. Private RDs (you can find one through the American Dietetic

Association) have more time to problem solve but they are very expensive. But,

I hate to send you on a wild goose chase if the " problem " ends up being

metabolic, immune driven, gastro, etc. I just don't know.

Anyway, is there any chance that your son's energy level and lack of interest in

food is associated with his IgG level? It is amazing how much IgG affect the

gut and general stuff...even behavior. My daughter could not concentrate (was

literally laying on the floor during her piano class), emotionally brittle, and

up at night with chronic joint pain. When the doc increased her dose it all

improved. She still gets achey but it is not as bad -- still, we are keeping

our fingers crossed.

I am so sorry that I can not help you more. I am trying to write articles for

Ig Living that deal with nutrition issues in our special group...but I am not

sure that they apply to Brennan.

Blessings to you and yours,

mom to CVIDer

[Guest guest]

I know that IVIG can cause slight anemia.

Janet, mom to Brittany CVID

Re: Brennan(previously titled S.)

" He has in the past been anemic, even with iron supplements. His last few labs

have not shown any anemia, though. The last few weeks, he is just really not

eating...He does seem pale to me. His " shiners " look more purple than

normal...His cheeks are not rosy, his eyes do not sparkle...he will run to his

room and throw himself on the bed and often fall asleep. He doesnt usually

nap...I am wondering if this sounds like he may be anemic again...But as a mom,

something seems off...I dont want the food thing to be an issue of control...he

just keeps saying he is full and he has only taken a bite or two of food. "

Hi, Valarie.

I believe that mom's generally know best so if you feel that something is not

right -- it isn't. I don't know what explains the past anemia but there are many

reasons that can contribute. You may want to read about iron deficiency and how

to test for it (which occurs before anemia), if this continues to be a concern.

Yes, I am a registered dietitian. So, I know just enought to recognize that

their is a nutrition issue but, many times, I don't know how to solve them. LOL.

I used to work at a hospital and developed long-term relationships with

patients...it often took months to identify and solve problems. And, I did have

many successes. It is possible to get answers but does require a skilled

clinician to test, do an intervention, re-check, monitor, etc.. Remind you of

immunology? Sigh. You may want to see if your ID doc or your hospital has an

in-house RD. Private RDs (you can find one through the American Dietetic

Association) have more time to problem solve but they are very expensive. But, I

hate to send you on a wild goose chase if the " problem " ends up being metabolic,

immune driven, gastro, etc. I just don't know.

Anyway, is there any chance that your son's energy level and lack of interest in

food is associated with his IgG level? It is amazing how much IgG affect the gut

and general stuff...even behavior. My daughter could not concentrate (was

literally laying on the floor during her piano class), emotionally brittle, and

up at night with chronic joint pain. When the doc increased her dose it all

improved. She still gets achey but it is not as bad -- still, we are keeping our

fingers crossed.

I am so sorry that I can not help you more. I am trying to write articles for Ig

Living that deal with nutrition issues in our special group...but I am not sure

that they apply to Brennan.

Blessings to you and yours,

mom to CVIDer

[Guest guest]

Valarie,

I can see why the doc associated anemia with dairy (btw, kids with dysregulated

immune systems have a much higher rate of protein insensitivity and allergic

disease). Some babies do get colitis from it. If you are concerned about iron

status it is easy to run a blood ferritin level -- to check iron stores (not

anemia, which is a late indicator or iron deficiency). All of the docs should

be familiar with this. I find that nutrition support dietitians, and

experienced clinical RDs, tend to know their stuff when it comes to

vitamin/mineral deficiencies...I don't know about the others.

As you point out, it is important to look at IgG levels as well as the clinicial

picture. Some kids do okay with 600 and others do not. In our group, parents

seem to report that their childen do best at ~ 800 trough. Again, this

varies...some need more or do okay with less. But, if Brennan is not looking so

hot it may be that 600 is not ideal for him anymore. I just don't know but with

growth and all that jazz...the doc should be re-assessing stuff and don't hold

back your concerns. You don't have to have a full blown infection to realize

that IgG levels may be dropping below the comfort zone for your child. Mom can

tell.

I wish this was a simple sodium laurate issue. It sounds rather complicated...

About the constipation issue...this was our earlier indicator that my daughter's

immune system was crashing. At about 6 months of age (still on breastmilk

only...which makes for lots of poops) she stopped stooling for about 9 days!

She stopped eating and sleeping as well. Then, she had a mucus/bloody diaper

and the doc did not care an iota. Anyway, it never really went away and she is

completely dependent on Miralax. She would have had surgery if it was not for

Braintree.

mom to CVIDer

[Guest guest]

Poor Brennan - he sounds like my guy, .

When is fighting a viral infection he will all of a sudden stop eating

and start sleeping about 16 hours a day... it is scary, but I've figured out

that it is what his body needs to fight a good fight. Our last episode of this

was a few weeks ago, when all of a sudden his body sprouted spots that even

Immunology thought was chicken pox but ended up not. (Probably just a herpes

virus - we've gone through this before !)

I totally understand your concern - if it were either of my other two " normal "

kids I would just ignore it until they got a fever or more defined symptoms -

but these PID guys just don't present the same way. never gets fevers

unless they are up to 105, and he never gets a yucky nose (as we call it in our

house) even when his cold has turned into pneumonia.

I bet if they did bloodwork you would see his WBC up - sounds like he is

fighting something. But I would guess that as long as he is eating something

and drinking you probably wouldn't want him on abx for something this minor. I

would probably just watch and wait. We pump up 's diet during these

times with milkshakes made up of adult Ensure and icecream....he too is a

scrawny little thing that hasn't gained any weight in the past 18 months !

But I also STRONGLY feel that mom's know best. You know your child and when

there is something wrong. This doesn't make you neurotic or " looking for

something " as you put it - you just know your kid and the signs to watch for !

Its not like you haven't been down this path before. If something doesn't seem

right to you - take him in. At least in two weeks when its blows up into

something you'll have said that you spotted it right off.

Blah, blah, blah.... I could go on and on. I hope this helps somewhat.

Kim - Mom of , age 4 (Combined B and T Cell Disorder)