Answers on Thursday {hopefully}

We followed up with immunology today... Before I dive into the specifics, I want to explain a few things. I have had some friends and family tell me that they are so lost in the medical lingo but they try to keep up with the boys. I am going to try and break it down for you :)

• Immunodeficiency - as with many other things, can be of varying degrees, can be short-term (transient) or long-term (chronic, life-long)... without getting too specific, basically on some level, their immune system appears to not be working like it should be. 
• Their immune systems did not respond to one of the normal childhood vaccines, PCV-7 specifically. This vaccination offers protection against ear infections, sinusitis, pneumonia, meningitis and blood infections. It is given in 4 doses - at 2 months, 4 months, 6 months and 12-15 months. Once you've completed the 4 dose series, you can receive PCV-13 (protection against an additional 6 strains of pneumococcal bacteria). According to immunology, after 3 doses, a child should have adequate protection. Pierce and Brice both received 4 doses of PCV-7 and Brice received 1 dose of PCV-13.
  They each had bloodwork to look at their titers (antibodies in the blood reflective of past exposure to an antigen - or something that the body did not recognize as being a part of itself). The test looked at 14 different pneumococcal strains (the most common strains). Pierce showed protection against 2/14 and Brice was 1/14. Even without the respective 4 and 5 vaccines they each received, their levels should have been higher given their past history with infections.
• IVIG - this is a type of therapy that can be used for many different health conditions, one of which is immunodeficiency. IVIG = Intravenous Immunoglobulin is basically IV infusion of antibodies. I explained the process a little more HERE

Okay, I hope that clarified things a little more :) Now onto updates ---

• Brice --- presently on a prophylactic dose of 250mg Amoxicillan once a day (for headaches, tender sinuses upon palpation , purple under eyes). His Memory B Cell function came back low (labs are in the car but I will post when I can). On a scale of 8-19, he was a 4 and his IgM memory was a 9 (scale of 10-19). If his titers come back low, he will start IVIG.
• Pierce --- presently on a prophylactic dose of 480mg Amoxicillan once a day (poor Pierce starts with fever no more than 2 days after he completes a course of antibiotics - previous courses include 10 days of Omnicef, 3 weeks of Augmentin). His Memory B Cell function came back low. On a scale of 8-19, he was a 2 and his IgM memory was a 4 (scale of 10-19). If his titers come back low, he will start IVIG.

About Memory B Cell functioning, as I previously mentioned,  it's experimental. It is something that Children's Immunology is doing research on. They have a general threshold set (8-19) but it is not age-specific (that is what they're still researching). Since memory b cell functioning is reliant upon previous exposure to a microbe, the theory is that it is going to be lower for younger individuals. But it's a catch 22 because both the boys have a rather extensive history of infection. Those results are not for diagnostic purposes but they will be used, with all of their other labs, infection history and clinical findings, as support for insurance authorization for IVIG.

Brice also had bloodwork to check for some of the more common food allergens. He showed a slight issue with wheat but not as a "true" allergy. Given his GI issues, the gameplan is to treat this empirically. We will remove wheat/gluten for a 3 week trial - if we see improvement with his stool and belly pains, we know it's real. If we don't, then we re-introduce wheat/gluten. His level could be the beginning of an issue or it could be nothing.

And because my memory stinks lately and I use my blog for referencing at doctor appointments...
Brice - 92.5cm ( 23rd% ) and 13.6kg ( 34th% )
Pierce - 80.6cm ( 19th% ) and 10.6kg ( 12th% )

Check back on Thursday for our update - have a Happy Tuesday!

I am in for it...

... why do you ask? Oh my boys are such a mess (figuratively and literally)... here are a few examples of words I've recently heard and actions I've recently witnessed:

(1) Brice wanted to go play in his room... of course, little brother wanted to do the same... Brice wanted nothing to do with that ---
Brice: You can't play in my room. Get out.
Pierce: starts crying
Mommy: Brice that isn't very nice.
Brice: attempting to close his door NO mom! Don't talk to me!
Mommy: Are you almost 3 or 16 and wait, don't you have a penis? I thought only girls were mouthy like this Brice if you can't speak nicely to mommy or share, you're going to sir in time-out until you're ready to do both
Brice: NO mom! I don't want to share! I don't want Pierce in my room! Stop talking to me.
Pierce: continues crying
Mommy: Brice, it's time to go sit in time-out...
Brice: Noooooo mom, I'm going to share and be nice. I don't want to sit in time-out.
Mommy: I am glad you want to share and be nice but you still have to go to time-out
Brice: crying and reluctantly walking to time-out
Pierce: tears stop, walks into Brice's room and happily plays

(2) I put Pierce down for his nap shortly before George came home for lunch. We could hear Pierce talking (loudly) and playing. I asked George to put Brice down for his nap while I checked on Pierce. Upon opening his door, I found him standing on the edge of his bed, diaper-less, watching himself pee onto the floor. Seriously. [side-note: he's really moving towards wanting to potty-train; he has a horrific yeast-related diaper rash that had him in so much pain Thursday afternoon, he could barely walk. I put him in the tub for some relief but before I put him in, he peed in the toilet! He said pee-pee, put the toilet seat on the toilet, climbed on the step-stool, I sat him down and he PEED! I was SO excited!]

(3) Yesterday (Friday), I went into get him up from his nap and oh poop... there was poop EVERYwhere. He took his diaper off (duh) and pooped - either on the floor and transferred it to the bed or vice versa. I was so grossed out. He had it all over his legs, the sheet, his bed, blanket and pillow. I took his shirt off and put him in the tub... cleaned his room... and snuggled on the couch with him afterward. [side-note: I may or may not have taken a picture of said disaster... and I may or may not have sent it to my husband saying "why me?"]

I think I have provided enough evidence as to why I am in for it...

stickers, tummies & blog changes

The boys (unexpectedly) had their blood work done today. They both were having their pneumococcal titers checked from their June 28th vaccination with Pneumovax23 and their memory b cell function tested. Brice was also having a food allergy panel done. They both did great... well Brice had a massive meltdown over having to wear a band-aid after the fact... and it only got worse when he was given the option of choosing stickers. OH.MY.GOODNESS. I was sweating by the time we walked out... he was so upset that he didn't realize he was saying no to the Toy Story stickers he ultimately wanted.... but then, he wanted the WHOLE roll. I explained to him that he could have a few and the rest had to stay for other kids having blood work too... while he is normally a great share, today, he had no desire to do so. He l.o.s.t. it... the woman that drew his blood said he could have the entire roll... to which I 110% refused. He was not being rewarded with an entire roll of stickers for not wanting to share and for having a meltdown over not wanting to share. Finally, he took one of each type on the roll and we left.

Speaking of food allergies... the boys have a new tummy doctor (aka GI specialist). As much as loved our GI doctor in Baton Rouge (and will forever be thankful to him for stabilizing Pierce as a teeny babe), I just couldn't make the 1+ hour trip any longer. So back to the new tummy doctor... while I can't say that I was overly impressed, I can say that I think I am going like having him on our team.

Dr. K had lots of things to say about Brice and I honestly cannot remember each one because holy gees did my kiddos bring out the crazy for the first half of our appointment. These are the things that I do remember: (1) We're reducing Brice's Nexium intake from 20mg twice daily to 20mg once daily; (2) He's curious if some of Brice's belly issues could be related to food allergies or sensitivities; (3) He reviewed Brice's EGD biopdy report from March --- Brice did not have any evidence of esophagitis but that could have been masked by him being on Prevacid --- Brice had duodenitis; (4) If Brice's belly pain gets worse (especially to the point we were at a few months ago) he wants to do another EGD and a 24 hour pH probe study; (5) the duodenitis could be the culprit for his belly pain... actually visceral hypersensitivity could be. Dr. K said that once the inflammation from the duodenitis subsided, the nerve endings may not have properly healed and could be hyper-sensitive now... so anything moving through the duodenum (part of your intestines), in essence, could cause pain. If this were the case and if his pain were to get worse and if it were to start interfering with his day-to-day activity, they would treat the visceral hypersensitivity. Dr. K did give me a fair warning that the treatment for it is "old-school" anti-depression medications. He wants to see Brice again in two months.

As far as Pierce goes, he is in a pretty stable place GI-wise. I explained to Dr. K that pulmonology wanted us to get another swallow study and I really didn't think Pierce needed to undergo another swallow study (aka pharyngogram or MBSS - modified Barium Swallow Study or VFSS - Video Fluoroscopic Swallow Study) My two reasons are: (1) I am just not convinced that his recent choking episodes were related to anything mechanical - I am of the opinion it's more of an ENT issue (while he was sick) and (2) my poor kiddo has been exposed to SO much radiation in his short 19 months of life that if we can avoid it we need to. While he respected my desire to avoid the MBSS he thinks it's necessary. Due to Pierce's mito diagnosis, he wants a baseline study, if in the event we were to see issues arise in the future. The hospital will be calling me at some point this week to schedule the MBSS and we follow-up with Dr. K in two months.

And... I've made a few more changes to my blog! I moved my blog roll from the sidebar:

to a page at the top (We like to read):

and I also added a few buttons as well :)

I am off to stuff and address 80 birthday invitations for my ALMOST 3 year old redhead... have a great night!