Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Tuesday, February 28, 2012
Monday, February 27, 2012
From Rare Disease Day website:
"A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.
Characteristics of rare diseases
The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Common problems faced
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequlities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
How can things change?
Although rare disease patients and their families face many challenges, enormous progress is being made every day.
The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures.
However, the road ahead is long with much progress to be made.
The FPIES Foundation is participating in Rare Disease Day all week!
Saturday, February 25, 2012
Maybe it was because of our struggles to find practitioners experienced in FPIES to help us with our son's FPIES or maybe it was the healthcare professional in me, but I couldn't help but see this from both sides- from both needs- medical professionals need support and shared experiences just as much as the families to help other families. I began to see how useful it would be to have the information- this golden information in this amazing support group that I was learning so much from- to be collected, compiled and centralized not only for the mother in the middle of the night searching for answers, help and support but also for the medical professional to find a resource to turn to to help these same families. The support groups are a safe and comforting place for families and it is truly an amazing thing to be a part of- the families in these support groups are like no other community I have belonged to, the passing along of information, experiences, insights into what they have learned and observed and connected for their child, in the small hopes that it could help another new mom whose journey is just beginning, or a mom who has hit a bump and is struggling, or someone looking for a new recipe or tips to coping with this chronic illness.
A clinical diagnosis can benefit from a collaboration of experiences, a foundation for FPIES. And now, when you look up FPIES, the resources are many and growing. Now, you can find an easy to read and understand (and share!) article About FPIES.
|Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.|
|FPIES Common Symptoms:|
Friday, February 24, 2012
We worked out a feeding schedule for his NGT that we feel is something he can tolerate well- without overfeeding him. It gives him ~43-45oz. of Alimentum/day while still allowing him to take his bottles- which we are not pushing but he ASKS for, and drinks every last drop of- his appetite is increased! Part of that is because of not having the IV nutrition anymore. His caloric intakes are about the same (1200-1400 calories/day) as they were on TPN and hemp milk. So we are hoping to see a weight gain this week. If there is no weight gain, and his diapers continue to be mysterious, we may have to look deeper into what is going on. Maybe this is all just adjustment stuff as his gut gets used to the new "food". He still won't drink the Alimentum though so we would be looking at a Gtube if we deem it safe after a few weeks via the NG tube.
His mood has been poor; plays nicely but hits a wall and then just falls apart- so something is bothering him. We just need to continue to take it one day at a time and see what tomorrow brings....
I reflect on what she is writing because so much of it are my very own thoughts. There is a connection between FPIES moms because we can so easily relate to one another with this journey we have been thrown into before our babies are even past the infant stages. Just when you think you're settling into a routine past the infant days, you are thrown into the life of a chronic illness.
A mother is created to nurture, a baby is born completely dependent on that need. A baby soon grows into a toddler, preschooler, and before you know it, they are off to school. Children grow up so fast, life happens in the blink of an eye.
Motherhood is calling, and when it calls an FPIES mom it takes nothing less than a woman made of steel- one that can exist on what seems like no sleep to stay up all night comforting a crying baby, one that can push past their own fears to feed a baby food that may end up making them sick in hopes to expand their diet and nutrition, one that has to chart food logs and keep poop journals, one that has to search for a doctor knowledgeable in this allergy -even if it requires them to over advocate for their child, because not every doctor is trained in it and a clinical diagnosis benefits from experience, one that has to put on a strong face when their heart is crying as they watch as their child undergoes procedures and allergy testing to help doctors carve out the individualized care plan their child will need to thrive through this illness, one that has to stand strong and kindly tell a begging toddler "not for you" when they ask for a food that is unsafe or contains unknown ingredients, one that sets aside their own needs and sits with a sick child for hours or even days just to be next to them because the loved ones touch is the only comfort they have after a chronic reaction and the gastrointestinal stress it does to their body.
Motherhood is calling, an FPIES mom.....
Thursday, February 23, 2012
Monday, February 20, 2012
Sunday, February 19, 2012
Wednesday, February 15, 2012
Tuesday, February 14, 2012
We discuss the nasogastric (NG) tube. Our GI discussed this with us before we came to the hospital- how we may have to do the trial with the NG if he refuses to drink enough; we would then know if it was "safe" and see if he would drink it (while he maintained his NG); if he would not drink it; we would have to do a Gtube (surgically inserted into his stomach) to assure he gets the nutrition he needs. This does seem drastic when he DOES eat by mouth, he takes his bottles VERY well and can drink up to 60-70oz./day without a problem, it is adequate in calories but lacking in some nutrients. All he needs is supplemental nutrients- that he can DRINK. But we have searched and not found these in 2yrs.....
We make that decision and we head to the procedure room with the nurses to insert his NG tube. After it was placed, we had to get it checked on xray to be sure of the proper placement, during that time- we offer him a bottle (of plain hemp milk) and he, thankfully, accepts it and instantly starts to (finally) feel better and drift into sleep (for a nap)….HUGE sigh of relief. He's been through SO much already and we've barely just begun.
Sunday, February 12, 2012
The decision is made to challenge Alimentum Ready To Feed (Ali RTF), it is a challenge because he has reacted to both casein (dairy) and tapioca before...although we've never been sure if his tapioca was FPIES or dissacharide deficiency related, we've simply avoided- it made him very, very sick and necessitated a hospital admission to recover. We plan for the hospital challenge, to observe for both acute or chronic reactions, since Little Man has more chronic reactions than acute and this isn't a food we can shelve for varied symptoms, we need to be sure we looked at everything and that his symptoms are logged carefully if needed to look at them retrospectively.
We prepare for the hospital stay, a planned 3 days to assess all symptoms and tolerance. We plan on 3 days but we prepare for more- knowing little man always seems to throw us some curve balls. The days before, we start to get nervous, nervous about making him sick, nervous about his failing PICC line and what we'll do if this doesn't work. The PICC that was scheduled to be converted to a port just a week prior, a decision based on his inability to tolerate the food trials we had done at home for the past 2months; but a line infection scare left us rethinking things at the last minute, deciding that the benefit of tolerating the Alimentum RTF is worth the risk of a reaction being that it has been 2yrs. since he has had a dairy derivative (in a similar formula).
Excited? Yes, that if he passes Ali RTF- we could have a supplement to his hemp milk formula and we could just BE- just take food trials longer and only when he's ready instead of pushing him. We could make plans easier, we could see little man at a baseline for more than a week before we move on to the next step. We can just breath.
Nervous? Yes! Little Man hasn't had a food pass since the summer of 2010! His body hasn't accepted a new food for 18mo.! (another post). Will it now? If he isn't ready for dairy or tapioca, do we risk re-sensitizing him and having to wait longer to trial it again? And of course, there is the fear of making him sick and having nothing to build a formula from. And....will he even drink it?