Tuesday, April 22, 2014

Antibiotics and the FPIES child

This spring has been rough for our family in regards to respiratory allergies.  Tree pollen is definitely not our friend.  After weeks of allergy symptoms in both Brendan and Ben, they developed ear and eye infections which required antibiotics.  Brendan has only had antibiotics once when he was an infant and we had to stop them due to a reaction.  Thankfully, it was only a lower GI reaction but it left him with a skin peeling, bleeding diaper rash for two weeks.  He was prescribed amoxicillin. 

Last week, our doctor prescribed zithromax for Brendan and amoxicillin for Ben.  Brendan has done well with zithromax but poor Ben had the same reaction to amoxicillin as Brendan.  After twenty-four hours on amoxicillin, Ben had green, mucousy diarrhea and a bad diaper rash that made him scream for two days.  We contacted our doctor and he advised us to stop taking the antibiotic and just see how Ben heals on his own.  I was also taking amoxicillin for a sinus infection but stopped since I am still nursing Ben.  I should have followed my gut and really pushed for an antibiotic shot for Ben from the start.  I try to tell myself Ben is different from Brendan and that I shouldn't assume the outcome will always be the same.  I should probably stop doing that and just follow my gut instead. 

I am making my "to do" list in the event we need antibiotics in the future.  *Please note that you should always consult with your physician about your individual case since any information in my blog posts only pertain to our own medical experiences.  This should not be considered medical advice.

1.)  Increase the dosage of daily probiotics.  Be sure to add Saccharomyces boulardii which has been proven to prevent/decrease antibiotic associated diarrhea in clinical studies.  Here is a link with more info on Saccharomyces boulardii.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/

2.)  If Amoxicillin is recommended by your doc, discuss the potential for a reaction to penicillin. 

3.)  If your child has an oral aversion, consider Zithromax since it does not contain penicillin and only requires a single daily dose for five days but continues to work for ten. 

4.)  Ask for the ingredient list and/or request for the oral antibiotic to be compounded.

5.)  If your instincts tell you to bypass the gut completely, opt for an antibiotic shot (Rocephin).  Typically for infections such as the ears, only one shot is required.

6.)  Don't trial any new foods while administering an antibiotic because it will be impossible to know what your child is reacting to.

Benjamin did well with the antibiotic shot yesterday.  I nursed him while he got the shot and he didn't cry at all.  The diarrhea has stopped and now we are working on healing the diaper rash.  We were trialing chicken broth and chicken puree but stopped when he started the antibiotic.  I am thankful we had Benjamin on probiotics during this time.  I would hate to think of how much worse the reaction could have been.

Monday, February 10, 2014

Save Little Michael

Normally, I blog about living with Brendan's FPIES and other diagnoses.  Today, the focus of my post is on a little boy named Michael Gonzalez.  Brendan has never met Michael, since his family lives in Florida, yet they have a lot in common.  FPIES and mitochondrial disease is the common thread for these two 4 year olds.  Brendan is at the beginning of his journey with mito but we are no strangers to rare and difficult to treat diseases. 

Although I wish I had connected with Michael's mom, Jennifer, under better circumstances, I am thankful to know her.  She is an amazing mother who fights every day for her son.  Little Michael has a rare form of mitochondrial disease called mitochondrial neurogastrointestinal encephalopathy disease or MNGIE.  Until recently, Michael's only safe food was the unflavored form of Neocate Jr formula.  Last year, the makers of Neocate (Nutricia) changed something in the formula even though they won't admit it.  Michael lost his only safe food as a result.  He has less than 100 cans left and when that is all gone, he will only have one brand of hemp hearts (Manitoba Harvest) and one brand of sugar (Florida Crystal Organic Cane Sugar) to keep him alive.  Hemp and sugar is simply not enough to sustain a child.  Meanwhile, Michael's family is raising funds for an experimental bone marrow transplant which has the potential to reset Michael's genetic errors and help him to live longer.  The doctors believe his baby brother is a match.  In order to begin the process of testing, the family needs to raise $50,000.  The total process will cost $300,000.  Insurance will not pay for it.  This is Michael's only chance to be able to eat food some day. 

So why am I getting involved?  We hear about heartbreaking stories every day and go about our business.  I think we are all guilty of doing that.  This is different though.  Michael's story hits close to home.  I have a child with these same diseases.  My husband Justin and I understand how scared and isolated Michael's parents must feel.  For four years, we have had no answers, only more diagnoses to add to Brendan's complicated list.  We don't know what the future holds for our son now that mitochondrial disease is in the picture.  What we do know is that we can fight like hell to help our son and other children affected by these diseases.  If anyone has ever wondered what they can do for our family, in support of Brendan's FPIES and mito, I have an answer.  Please, please help us to help Michael and his family.  How can you show your support?  You can get in contact with me if you would like to donate money, products/goods, fundraising ideas, media contacts or your time.  You can do something as simple as raise awareness of mitochondrial disease and FPIES by sharing Michael's story with everyone you know.  https://www.facebook.com/savelittlemichael

Justin and I will be holding a fundraiser/candlelight vigil in honor of Michael on Friday, February 28 at 6pm at The Den coffeehouse in downtown Bothell.  Please join us!

Thank you for reading my blog and your continued support of our family's journey as well as other families we meet along the way.  And to Michael's mom...Jennifer, thank you for sharing your mito journey with me as we begin our own.  You are truly an angel.

Friday, January 17, 2014

A mom's thoughts on FPIES and genetics

I’m sitting in front of my laptop with so many thoughts and feelings running through my mind….my hands are shaking.  As I mentioned in my last blog post, it is suspected that Brendan has mitochondrial disease.  We saw the biochemical genetics department at Children’s last week and we have reason for concern.  Our doctor has ordered mitochondrial genetic testing for Brendan in hopes of providing us with some answers.  Between insurance approval and the turnaround time for testing, we will have to wait three months for answers.  Although realistically, we will be faced with more questions along with the answers. 

So, now we are backtracking…looking through old medical records, revisiting all of Brendan’s past diagnoses to put the pieces together.  Do I want my child to have mitochondrial disorder?  Of course not.  I think in my heart I’ve always known this is what he has…but I didn’t have a name for it.  Brendan’s energy level, low muscle tone, vision problems, coordination/balance disorder, FPIES, and autism all fall within the symptoms of mitochondrial disease.  Why didn’t I figure this out before?  Why didn’t the biochemical genetics department tell me it is possible to have normal labs even when a patient has mito disease?  Why didn’t they recheck/follow him since he had all the other symptoms?  It frustrates me that I also overlooked this and didn’t get him help sooner.  I am also looking into mast cell activation disorder since there can be an overlap between this and mito.  It is also possible for mitochondrial disease to rear its ugly head as a result of oxidative stress from chronic gastrointestinal illnesses. 

Thankfully, we have found another amazing naturopath to add to our menagerie of alternative doctors.  This doctor will be treating Brendan’s MTHFR with supplementation recommendations similar to the mito cocktail that is so often prescribed by medical doctors.  In the meantime, I am following several mito Facebook groups and finding a common thread…food allergies and intolerance, even other FPIES patients who are now teenagers.  Add this discovery to the gastrointestinal issues that I see in the MTHFR groups and bingo, there’s the link for our situation.  We had 23andme testing done and Brendan and I have similar mutations that affect gastrointestinal, methylation and detox but our homozygous mutations is where I see that his FPIES symptoms are more chronic/severe and mine present differently.  I am also learning that based on these mutations, certain foods should be included/avoided.  For example, if you have a CBS mutation, you should be careful with sulfur foods.  If you have some of these mutations, diets such as GAPS and fermented foods may need to be tweaked according to the individual’s histamine sensitivity.  This is why nutrigenetics should play an integral part in the treatment of FPIES.  Naturopaths have come to this conclusion and now we need everyone else in the medical community to jump on board.  I have two boys with FPIES and we stopped trying to figure out food trials long ago.  There is no rhyme or reason to FPIES reactions because our children cannot be put into one bucket or put under a list of acute or chronic reactors.  I have two FPIES kids who have both acute and chronic reactions.  We made less progress when we were focusing on common safe food lists and just waiting for Brendan to outgrow it. 

Then there are those FPIES kids who either have autism or autism like tendencies during food reactions.  Why do you think that is?  The answers all lie in our genetic makeup and nutrigenomics.  Even though the 23andme testing experience has been scary for us, it has also provided us with answers.  I wouldn’t advise doing the testing unless you have a naturopath who has a good working knowledge of it.  Otherwise, you will drive yourself crazy and spend countless hours researching every SNP.  I apologize if my post is difficult to follow since I am only grazing the surface.  If you are interested in learning more, read up on MTHFR, mitochondrial disease, mast cell activation disorder and autism.  Your child may not be affected by these disorders, but it will help you to learn how important gene function is in regards to gastrointestinal health.  We have to educate ourselves so that we can find the medical support to treat our children as individuals.  I’m personally tired of barking up the wrong tree.  I’m tired of watching my son fall through the cracks while no one else has to be accountable.  It’s time to spread awareness.  I started an MTHFR and FPIES Facebook page months ago and haven't done much with it.  Feel free to join me there if you'd like to share experiences.  I am also including a few links that discuss the importance of methylation and detox functions to support overall health.