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, August 31, 2010
Praying for things to continue to go in this direction....
Quick update tonight. Little Man is doing better today. His explosive diaper this morning was a tell tale sign of his "slight" reaction yesterday. It typically will end once that diaper shows up (as long as we havent' pressed too far). His intakes were down a little today but he managed 50oz. of a "new" formula mix that I have added a hemp protein powder too. This powder will bump up his protein and iron really nicely in his formula so I am glad I finally found a powder that would mix nicely into his formula. He did very well with it today.
Another good news we had today is his weight check revealed he regained his lost ounce from last week, and gained an additional ounce on top of it. So, 2oz. in 1week- yea!! This, with his baseline - we really are optimistic that we can get a better handle on things and move forward.
We ended the day with a "normal" activity- and little man participate in! I put the boys to bed with stories and bedtime prayers, and goodnight kisses- he is often too fussy by then to partake- not tonight and he insisted on being included!!
Monday, August 30, 2010
I looked into many things that could help gut healing and inflammation in the body. I tried some Fish oil (Omega 3) supplements....unfortunately they were made from fish and he reacted to those with what looked like an IgE type reaction- spots around his mouth. I bought probiotics (http://www.giprohealth.com/giprostart.aspx) I bought the probiotic and the probiotic starter. I gave him a few days of the probiotic but he was getting tummy aches with this- we thought likely from the inulin (we were already suspecting a fructose intolerance). So, that was stopped as well. I didn't have any safe "milk" to make the yogurt with, with the probiotic starter but I gave it a try (to see if I could do it) with some coconut milk (in the hopes that one day he could tolerate coconut milk as many dairy intolerant kids can). I did not succeed and it never "set" and it tasted a bit like...well, vomit. So, in the trash it went. And in the fridge the probiotic starter stayed. Now with hemp milk safely in his diet, I remembered that I could probably use this to make him some yogurt from.
I successfully made Hemp milk yogurt last night! I gave it a chance to cool this morning and gave it to him with lunch today. It is fun to be finding "new" things from his safe ingredients to put in a bowl at the table so he can be sitting at the table with his brothers when they eat. It makes meal time much less stressful (although I still don't sit down).
I put some hemp milk yogurt in a bowl for him (he has his own bowls and spoons so when he sees me getting these out- he gets excited!). He took a lick and wasn't interested. I put his millet puffs (that we have been giving him for "fun" in a low-dose kind of trial way) on top of them in the bowl- he proceeded to pick off the millet puffs and eat them, while only taking tiny licks off his fingertips of the yogurt. Soon enough he was "all done".
Within 2 hrs, the hyperactivity started- he couldn't settle down for a nap, he wasn't eating very well and just kept fussing off and on. He has been teething this week (1yr. molars) so we have that wrapped up in things throughout the week- but that is usually a bit of fussiness while he grabs his cheeks and it is consolable and short-lived. I gave him some of his compounded ibuprofen. This seemed to help because within 20min he finally went to sleep. His nap was short and he woke up screaming- clinging to a stuffed lamb toy from his crib (not a good sign). He remained fussy and refused to eat. We took a short van ride (ok, ok- the other boys talked me into a McDonald's dinner because they were "starving" and knew my hands were going to be too full to prepare much). The van rides almost always calm him down, and he was better. He has been having mouth itching and his skin is mottled (again, more of his signs of his body reacting). He is starting to play well, so hoping it is working it's way through without much more increase in symptoms.
This picture is, of course- before the yogurt....happy Little Man that we've begun to see more and more of every day.....a "normal" 14mo. old little boy- playing, exploring, running, chasing brothers, playing jokes on brothers, giggles, hugs, kisses....we are establishing a baseline and it is a beautiful thing (what today's post was supposed to be about, maybe tomorrow)....
Friday, August 27, 2010
I look back on things that I thought were difficult in my life before this and realize they were all just "primer" for this: food intolerance's have plagued my life since as far back as I can remember, food allergies in my other children have already paved the way for my understanding of it in our Little Man, miscarriages make me grateful in ways only a mom of a child lost can understand of the 4 beautiful boys the Lord has blessed me with...and that even though Little Man has a chronic illness- he is healthy. And we are grateful.
I look back and know that these (among other) things in my life have just given me the strong foundation needed to press on- to press on for 1yr to find a treatment that works for our son (a treatment being something as simple as a diet).
I love to snuggle with my boys, and they love to snuggle- their favorite time is bedtime stories. I read this story to them last week, it spoke to me too (see, again- everything happens for a reason).
A builder built a house one day
But did it in a foolish way
He'd found a stretch of level sand
And bought that pretty piece of land.
There was a stream that flowed nearby,
Which sparkled 'neath a sunny sky.
So on that very lovely spot
He built without a second thought.
But then one day, the sky went black,
He saw and heard the lightening crack.
Next came some mighty wind and rain.
It almost was a hurricane.
And adding to the general woes,
With all that rain, the stream arose.
It got as deep as it could be
And washed the sand right out to sea.
With no foundation anymore
The house was shaken to its core.
Soon it collapsed and went KERPLUNK!
And turned into a pile of junk!
But Jesus talked about a man
Who had a very different plan.
When this man built, he figured out
There would be storms without a doubt.
So, he made sure each building block
Was anchored to the solid rock.
Then soon there came the wind and rain,
Which caused the other fellow's pain.
The stream rose up, but come what may,
It could not wash the rock away.
That other house had gone KERPLUNK!
But his was built upon a rock.
In this short story Jesus is
The solid Rock and we are His
Those who believe in Him alone
Are built upon this Cornerstone.
The storms of life? There will be some.
But on this Rock you'll overcome.
Through all the troubles that you'll face
He'll show you His Amazing Grace.
Taken from "The Wise and Foolish Builders": a Parable of Jesus. Matthew 7:24-27 and Luke 6:47-49 for children.
Written by Larry Burgdorf
Thursday, August 26, 2010
This week brings celebrations in a few forms. Our 2nd son's birthday was the primary focus of the week; and so for that- we tried to give him as much "FPIES free" time as we could manage (while still managing little man's care). He had a pool party with friends, dinner out with the family, and a whole day of fun with friends again today. It has been a fun-filled party celebrations week!
Wednesday, August 25, 2010
And strength I met. R is a super mom, little N has been sick most of her life like Little Man. We share many commonalities in our children and our experiences. Little N has had a tough-tough road and, as a testimony to her parents sacrifices, she looks just like any other 10mo. old little girl. She is adorable. I look forward to having her and Little Man meet the next time they come to town.
Progress is made in small steps. The doctors here have now seen at least 2 FPIES cases within a months time, will they start to utilize this great opportunity to learn more so they can continue to help? Continue to be the world renowned hospital that provides hope to so many other families for so many other rare illnesses?
Only time will tell.
During our Dietitian visit at CHOP, we commented how it was strange that this fine medical institute does not see this. To which our Dietitian replied..."oh, they see it- I have no doubts they see it, they just don't recognize what they are seeing". She went on to say that CHOP didn't either a few years back but with continued EE cases, they kept getting this subset of kids with the same common problems. Once they began to recognize it, they moved in strides to begin to help. CHOP is a leading FPIES medical facility. I do so wish that we lived in a place that understood, recognized and knew next steps for Little Man's rare illness but try to keep the positive perspective that by caring for Little Man (and Little N), they will only learn and be better equipped to help the next FPIES case that comes through the door, and then continue to build their knowledge from experiences gained. In my world, there is always a positive side to things....despite not getting the full support we need for our child, we hope and pray that others soon will.
Tuesday, August 24, 2010
I am driven because of my son's needs. I am his mommy. This is my job. My other job? I am a Registered Dietetic Technician. My life is all about food and nutrition. I now hate food. Ironic situation I am in.
My perspective from a DTR has made this both easier and more difficult.
It makes it difficult because I have seen things from the clinical perspective. I have seen kids much more sick than my little man. This is why it took me so long to ask for help. But I have a sick child too and he deserves every chance at health that any other child does. It is also more difficult because I don't always hear just what the doctors saying to a mom, I also "hear" what they are thinking as clinicians. Right now, I know they are thinking I am being reckless with my baby boy's health and that maybe I'm even a little bit crazy at the expense of keeping him pain free. And that by building him a formula, I am depriving him of nutrients yet to be identified. Little man has a clinical diagnosis- based on symptoms. The labs and tests that guage his illness are in the symptoms that the parents tell. This makes it difficult because the medical community is taught- is centered and anchored on the concretes. No one can just "take my word" and they can't "measure or biopsy pain", or measure "inflammation from pain".
Having a clinical nutrition background has also made it easier. The world of allergies is not foreign to me. The world of nutrition is my "second language". My interest, and the reason for getting into dietetics, has always been the GI and digestion component. My two worlds collide with this little known diagnosis of FPIES. I have a deep rooted faith and I know God has given this little child to me for a reason. It is because I am driven for his care that I have come this far in helping him. I am driven as a mom to help my son, I am driven as a dietetic technician to help as many other FPIES kids as I can. It's what I do, it's who I am. I am driven.
Monday, August 23, 2010
No, I wouldn't say our Peds GI was ready for us. They are not ready for FPIES diagnosis here. It makes me sad- sad for my little man and sad for all the other kids who could be helped by such a fine medical institute.
The GI doctor even said it herself, little man may have too complicated a case for them here....we may have to go back to CHOP. If his labs and weights, and blood in stools don't stop on this formula I have built him- they are not sure what to do. So, no- no answers....not much direction than I am already doing -- on my own. No more support than I had yesterday or the day before, or the day before from the medical community.
The support I want isn't hand-holding support. My group of FPIES mommy's help with that, my family and friends have always been there through the very beginning stages of this. The support I don't understand why is too much to ask for is support for caring for a sick child. That if he were to get sick- from a food fail or even a crumb or heaven forbid he got the flu....that I would have assurances that I have doctors that will help us help him.
Is that really too much to ask?
Does it really need to be this hard?
Hemp milk formula made with Safflower oil and Arrowroot starch takes all of this away. There is no agitation, no screaming for hours, no crying in pain, no waking up at night, no difficult bowel movements -- just playing and exploring like a "normal" 14mo. old little boy.
And as of last evening, I have successfully increased the arrowroot starch in his formula, so now he will get his daily carbohydrate needs!! I have had to really play around with how much hemp milk I cook with the arrowroot starch and how long I cook it, etc to get the consistency right (not too thick, not separated out) and I am hoping I got it closer to what he needs! He is drinking it well since last night! So, so far it isn't too thick! The one kink I still need to work out is the volume, his kidneys are showing a little stress from having to put out so much volume--he averages 65oz./day! But if we could build his tiny menu, that would help alot with that. And now that I am feeling a little more supported (by his almost 2# weight gain ON my formula, his labs holding and by letting the doctors know that this is what I am doing) - I am feeling braver about experimenting with his formula to get it right. Will be good to see where his weights and labs go in a week on this recipe now!
Sunday, August 22, 2010
He was clearly a happier boy most of the day yesterday, his blood sugar was more stable and he was able to play without hunger feelings. He had some small initial signs that I was hoping would not connect/add up.
The hemp formula I am building him is low in carbohydrates, only supplying half his daily needs, as I am nervous about putting too much in (because of his carbohydrate intolerance) for a few reasons:
1. it makes it thick and then will he refuse to drink it? and
2. will he get diarrhea like he did from tapioca starch and make him sick landing in the hospital again; and then
3. I'm doing this on my own. The doctors here have not recommended it and they can't recommend moving away from an elemental formula. So, I have been 'testing' it to see if it will work for him- I calculate out every recipe, every ounce, to be sure he is getting adequate nutrition.
I am not taking chances with his health, I am looking for ways to improve it. Our Allergist knows we need to move away from the Neocate and has advised such. We have struggled with this because of Little Man's compounind carbohydrate intolerance. And, if something were to happen that he could not tolerate his hemp milk formula -- should he lose weight or get so sick again like he did on first attempts to build it (with tapioca starch that caused osmotic diarrhea and a hospital admission), the doctors surely will not help us move further on with next steps but will only want us to keep going backwards with the Neocate that we are so trying to move away from.
Why move away from an elemental formula that we know helps children thrive?
Here is one reason:
And an hour later....
Pick up your crying child you say?....
This went on for 3hrs this morning until I finally gave him some of his compounded ibuprofen (which we are to try and stay away from because of his "ulcer" in his stomach) but it is the only thing that helps with this kind of pain -- to at least give him a small break from the pain. Another sign of his agitation (besides that it does little comfort for him for me to pick him up except have a screaming child closer to my ear) is that he clings to things- he has to have things in both hands and will NOT let go...something to try and give himself comfort. This morning it was this piece of paper, and the cup...
If we ignore this, it gets worse- it moves to around the clock pain, difficult stools, mucous and blood in stools, screaming and sleepless nights, until he begins to refuse to eat (connects that this is what is causing the pain), and then if he starts throwing up or diarrhea on top of all of this....he gets so sick. This is the cycle we keep having with him and have been trying to move away from. We have been able to move away from it, with the hemp milk formula. When we see this agitation become a mere memory, we know we are moving in the right direction. When we see this agitation come back in full force with reintroduction of just 300ml of Neocate, we know taking it out altogether is the ONLY direction.
Each step I learn more....
I learned that he clearly needs more carbohydrate in his formula, and I learned that he clearly can not tolerate even trace amounts of the corn (glucose syrup or corn syrup solids).
The Hemp milk formula needs to be tweaked, with better carbohydrate ratio in his current formula, more vitamins to make it optimal and moving towards a tiny menu. This is the direction we are hoping the Peds GI doctor here can help us with tomorrow.
Saturday, August 21, 2010
We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.
Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.
Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!
He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.
These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).
Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.
Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.
Thursday, August 19, 2010
Tuesday, August 17, 2010
After this first diaper, he settled down nicely with a bottle for a nap and even took a really long one! He woke up and played outside again (he LOVES to be outside!). But then he had another diaper of diarrhea. So, I am a little concerned as diarrhea is what lead up to him getting sick and ending up in the hospital a month ago. But I am hopeful we are staying on top of it. He has been drinking his formula like a champ and although he screamed for that hour this morning- he otherwise was pretty good all day and settled down easily for bed tonight.
Stay tuned as we will press on tomorrow! We will give him less, or change to Millet puffs and see if that goes better.
Sunday, August 15, 2010
Little Man's daddy made all the Mud Pies (aka, big brothers) milkshakes this evening. Since we introduced hemp seed cereal, and since he is feeling so much better these days with no tummy aches- little man is once again "asking" to eat. He gets quite agitated at meal times once again- and not even bringing him downstairs away from all the food will calm him down much anymore.
He wants what we have -- or at least something like it. Little man's daddy gets so creative with him and all the mud pies. Tonight, he could see Little man just needed something like his brothers. He got him a cup and a straw like everyone else -- only his didn't have milkshake in it, he had hempmilk. He was SO excited to be drinking through a straw, to have a drink like everyone else, he just giggled and said lots of "yumm,yumm,yummm's"! It wasn't anything new- just his hemp milk formula, cold, in a cup. It doesn't take much.
I have located a few different variety's of millet -- I have good feelings about this and am excited about the versatility of it. We may be doing (trialing) it this week. Stay tuned.
PS - yes, this is a grainy picture, and yes the date stamp is wrong....it's my old camera, which just happened to be in reach to capture a quick moment in time before it slipped away.....
Saturday, August 14, 2010
This mild, very digestible grain is a favorite for folks on a wheat-free diet. It also has a good balance of essential amino acids and is delicious with sautéed vegetables and beans or when used to make risotto. http://www.wholefoodsmarket.com/recipes/guides/grains.php
We are ready for food trials. I am looking at a grain (or a pseudo-grain actually) to be Little Man's first food. This would give us much versatility- a cereal, a "rice" type meal, a flour,....something for every meal. A good "base" for a tiny menu.
The most appealing part of Millet is the "very digestible grain" part! That could take a lot of confusing symptoms out of play as we introduce a food to him after 6mo. on nothing but liquids. Other grains in play: Aramanth, Quinoa, Teff,...But I am drawn to Millet Groats -- so much so I want to go purchase some right now! But I can't find anything online that looks "safe" for purchase. I have to make a trip to a few stores in town on Monday but I am not sure I will have success.
Will this be the week we begin food trials? Only if I can find the food!
Friday, August 13, 2010
Wednesday, August 11, 2010
A little background to catch up to speed.....Little man has been on an elemental formula for 6mo. with little improvement (and some worsening) of his FPIES. Our allergist advised his symptoms sounded like he could have a corn trigger intolerance. We trialed corn and sure enough, it only took a teaspoon to find our answer. What does a corn intolerance have to do with not improving on an elemental formula you ask? Well, if the base of that formula is corn syrup, and that corn syrup as proteins extracted but it isn't enough for a very sensitive intolerance....you have a problem.
Little man started on elemental formula's in the last week of Feb, I was instructed to stop nursing him because we could not identify what he was reacting to in my breastmilk since I was already on an elimination diet and it wasn't taking away his symptoms. So, we put him on Elecare. He did not like it, and we ended up in the hospital because he refused to eat for a week. We were able to get him to take it at the hospital but he had daily vomiting on that and we were starting to literally force feed him. We felt trapped, unsure of what to do; we were supposed to just give it "adjustment" time- thinking he would accept it more and more and the throwing up would be less and less. Well, the opposite happened, he threw up more and more and accepted it less and less. We had already "failed" Nutramagin AA so there was one elemental formula left to try....Neocate. We switched to Neocate and the daily vomiting slowed down, and he began to thrive a bit. We continued to have random vomiting and lots of tummy aches, and we were not able to introduce any foods. This was not healing his tummy.
I have kept daily logs. I went back and added up his daily caloric intakes from May 1 - July 20....his daily average is a mere 541calories- much below his needs were at the time of 800-900calories. He was hanging on. I have always said his body is very efficient. Even when he was throwing up daily, still on breastmilk- he was barely maintaining weight but he wasn't losing. His body knew what to do- it knew where the essential calories needed to go. He has never been behind on his developmental milestones. He doesn't "look" like a sick child. For this we are very grateful. We know our constant care of him and countless sleepless nights do show in this. We have devoted our lives, our whole family life to caring for Little Man.
So, back to today- little man failed corn. He ended up in the hospital last month because he had gotten so sick- his little body that has been so resilient through all of this was having a hard time keeping up this time. We attempted to move away from Neocate with it's trace corn proteins so he could finally heal and re coop, to give his little body a fighting chance. To do this, I began to build him a formula with Hemp milk, safflower oil, and tapioca starch; but his reaction to tapioca starch just simply drained his already drained system.
At the hospital, Little Man was put back on part Neocate. Without recognizing FPIES, the doctors could not see how Neocate could be making him sick. We knew, but we agreed that he needed nutrition. A rock and a hard place. We hoped to find a threshold of tolerance. We didn't. The symptoms kept building, pain attacks started the night we came home from the hospital, up all night a few nights; and then the bloody/mucous stools returned.
I knew what I had to do....move away from the Neocate once again- more gradually this time, while building his formula with fortifiers we were sure he could tolerate. Mix Hemp milk, safflower oil, and cooked arrowroot starch, and blend. He has a formula adequate in calories. Optimal nutrition will come with introduction of foods but we can't get to that with continued gut assault.
I slowly reduced the Neocate in his hemp formula until last Thursday he had none. Unfortunately, this coincided with the crumb ingestion (see post from last Thursday). We waited it out, not changing much to his formula except tweaking the same ingredients to find the right texture/calories per oz./and carbohydrates per oz. he can tolerate. By Sunday he was whining too much for me to continue this way....was it tummy ache from the crumb still, was it tummy ache from hunger. I couldn't take the chance of it being from hunger so I added Neocate back into his hemp formula mix. It immediately filled his tummy. Sunday night was ok. By Monday afternoon, he was beginning to be a mess- colicky behavior all afternoon and evening, couldn't fall asleep and was awake for over 2hrs in the middle of the night. Tuesday diapers were frequent and liquid, and by the evening - mucous and blood; he screamed all evening long and had restless sleep. His tolerance for the trace corn proteins in Neocate becomes less and less.....I have to take it back out.
So, here we are again- back to no Necoate in his Hemp milk formula. Once again, this IS adequate in calories- AND he drinks the calories he needs to. He needs 1000calories/day adn he drinks at least that- somedays more! Except today, today he is limiting that intake a little - which has been his typical following pain/diarrhea/throwing up/reaction to a food/formula. It might take a few days for him to trust his food again. We can't keep messing with his ONE true source of nutrition....
To add to his FPIES intolerances he also has a carbohydrate intolerance (dissacharide deficiency)- his body can not digest too much carbohydrate at one time. So, I can't put too much in his formula. He may be able to tolerate EATING some carbohydrate between drinking his formula, to meet his daily needs but we can't FEED him anything!
So, here we are again- and still....rock and a hard place. What do we do next? Hopefully, we can hang on, heal his gut and get a food trial underway are my thoughts today.
Sunday, August 8, 2010
Mom driven diagnosis is where I began to realize that yes, the mom's that are "in the trenches" ARE what is driving the recognition and continued research on this FPIES beast. And that I really did know what was best for my child...and that what I was learning from the other moms was more specific than the doctors that didn't know about FPIES. Diagnosis and treatment has come such a long way in just 5yrs, and I feel SOOOO fortunate for the moms that have been before me that have shared their story's, thus helping our situation....my hope would be the same for the mom's that follow us. Because even though I shudder that other little one's have to go through this- it is happening and so to have a place to go, a place of support and guidance is SO INVALUABLE!
The big hospitals that know FPIES well (Mt.Sinai and Children's Hospital of Philadelphia) have teams of knowledgable doctors. But not all of us live in or near NY or PA. There are plenty of other Allergists throughout the country that have become familiar with FPIES as well. Allergists are at the fore-front of diagnosis and treatment but a GI doctor, a Dietitian and a Pediatrician are all part of the team. These "big" hospitals that treat FPIES utilize this team approach. It has been my goal to duplicate that for my son, here at our hospital.
I value the assistance from the doctors, specialists and dietitians to help me keep my little man healthy. The doctors that have experience in FPIES have a wealth of information and assistance; and the ones that don't can catch up very quickly- they already have their knowledge in kids, allergys, GI disorders.
The two things that a doctor has to do to help a child with FPIES: 1. acknowledge the diagnosis and 2. listen to the parents.
Our Allergist at CHOP is incredibly knowledgable - because he has helped hundrends of kids with FPIES and thousands of other allergic disorders. I will never regret making the trip half way across the country to go to CHOP to meet with the expert allergists for the FPIES diagnosis. After much review of all the literature we could get a hold of, our pediatrician agreed that little man has FPIES, but we wanted to know from a specialist that has diagnosed and treated it before -- for nothing else but little man's health. We needed to know what the best treatment plan is. We were given a good treatment plan, and our Allergist remains a strong support for us as we continue to navigate through these murkey waters.
The other step that has been invaluable was my request for a consult to a dietitian (here and at CHOP -- it was not suggested, I requested it). FPIES is all about food, dietitian's are a great support and advocate for the little one's
I truly believe that the parents are a huge and vitally important member of the team, also the lead member in treating these little kiddo's. Our Allergist has given us good advice on how he best is able to treat such a clinical diagnosis in a medical community that operates on objectives...."listen to the parents"..."if the parents say there is something wrong..."..."there are no labs or tests to test for FPIES, if I feel a lab is needed, I know I need to talk to the parents again". We respect this because we know our son. We have had to follow his development, his tolerances and intolerances, his "normal", his sick days for every second of his life.
We. Know. Our. Son.
Navigating the specialists, and playing Dr.Mom in search of a diagnosis makes one want to put all the medical field behind us and just do it alone. It is a very frustrating diagnosis in this way. For me, I could go it alone -- back when things were rough with the medical community trying to convince them of what was happening with our son, my husband urged with me for us to go it alone -- because he completly trusts my ability to do so. There is a drive to do so -- he is our son afterall, I should be able to care for him- I DO know what is best for him...only, with FPIES, it is like being a first time mom with a newborn baby and you look to check on that thing they are doing is normal only to find out that one around you knows anything about newborn babies. So, even if I could possibly understand all of FPIES (which I never will), and even if the doctors aren't familiar with treating FPIES, there are co-factoring/co-compounding issues that arise and I feel it is helpful for the doctors to have a good baseline of where my son's normal is and what steps we have taken. But we are absolutly leaders on his medical team.
Bottom line- mommy knows best. Trust your instincts.
Are you reading this because you suspect your little one might have FPIES? Like I said, the support groups of mom of FPIES kids has been great. FPIES is a little known diagnosis. The moms are raising awareness but there are still way too many doctors that are not familiar with it. So, if you're looking for a place to start with journal articles to read and bring to your pediatrician. I have started a list. I am linking it here- please note it is a work in progress.
My name is Suna and I'm from Australia, my little fella doesnt have FPIES but he does have the severe mucous stools and diarrhea and is on a limitted diet and neocate. I just wanted to let you know that we have an active yahoo neocatekids support group here in oz and we used to have a lady post a few years ago from the U.S.A whose little girl was severely allergic to corn and the starches and she ordered the british or Australian neocate which apparently doesnt have the corn syrup solids in it and her little one finally began thriving, it was a big hassle getting it in but may be something you can investigate if the hemp stuff goes pear shaped. You are an amazing Mum and I wish you and your little one all the best.
Love Suna in Oz XXX
Again, more support- from people we don't even know but know how hard it is to have a child with multiple food allergies and want to help. There is a connection with these mom's...when you've been through/are going through such a difficult thing with your child. No mom wants to hear of another child having to endure this, but it is so helpful when we can share our experiences.
Could you imagine? Neocate made without corn syrup solids that my little man can thrive on?
So, I found this: http://www.nutricia.com.au/clinical/neocate/neocateadvance.aspx
and sure enough, no corn syrup solids- it is GLUCOSE. This could potentially come from corn (as dextrose does)- or maybe not, being that it is not the USA. I will find that out but even so- it may not (and shouldn't) be an issue when it is strained down to that level. AND the other bonus- glucose is a carbohydrate source his body can absorb 100%- this is broken down ready for cells to absorb/utilize...he doesn't need enzymes to break it down. This product could potentially meet so many of his needs....
Now to get a can.....
Simply put, I am not sure how we would be getting through all of this without the support from family and friends. Too many FPIES mommy's talk about how their family is unsupportive - mostly because they simply can not comprehend such a food allergy as FPIES. I am grateful everyday when I can turn and find support from so many directions: sisters who move in to help out, sisters who drop everything to be here when needed, family who calls or is available for a phone call to hear (yet again) another segment of little man's symptoms and struggles, friends who check in DAILY - just waiting for the day when I had good news to share, friends and family who remember us in their prayers and prayer groups, colleagues that pick up extra work because of my need to stay home with my ill child, colleagues who give great support and advice for a child with multiple food allergy's, our firefighter "family" continued support, neighbors who are available for babysitting and all the family and friends who have been a listening ear to my anxiety filled days when my little boy was so sick and no one knew why or how to make him better.
Thank you to all our family and friends that are helping us through this difficult time in our little man's life.
Another great avenue for support (besides this blog and my facebook page) has been the online support groups I am a part of (ok, I am a big part of - sort of in an addicted way!). The other FPIES mommy's have SO much knowledge, experience, insights, and just empathy for going through shared experiences. I have "met" so many great moms (and FPIES kiddo's) this way. I have found a few that live near us even! But there are one's that live across the country- and also across the ocean! We share a common ground and speak a common language- so much so that often feels like they are following me around, our kids go through so many of the same things!
That will bring us right into my next post....Mom driven diagnosis....
Saturday, August 7, 2010
Little Man found a flake from a pastry his 3yr.old brother had eaten for breakfast. What a treat! I wasn't home but Little Man's daddy did the best he could to finger sweep it out. If someone were to see us do this, they would think we were afraid of our child choking, or eating poison. Well, with FPIES- it's the same thing. He was hopeful he got most of it, but doubtful he got all of it. Little Man's fussy behavior the rest of the day, diarrhea diaper the next morning, and continued stomach aches for the past 2days tells the tale.
A setback? Not now! Not as I build him a new formula and get SO close to being able to introduce some safe foods into his diet and work towards building him his tiny menu. But then it occurs to me, he didn't throw up....so we celebrate the small things...through all the whining and clinging- we celebrate that he didn't vomit violently. Does this mean he is less sensitive than he was 2mo. ago? As we move away from the trace corn proteins that have continued to assault his gut, does his system FINALLY start to calm down? Maybe....
I have said in the past, sometimes I wish he would just throw up when he would get a food that he is clearly reacting to....it is drawn out for days when there isn't vomiting.
We were so hopeful he was getting better, and we were dreaming of first foods and tiny menu's and normalcy again....a crumb sets us back.
Thursday, August 5, 2010
This is how his lab results read:
Lactase 12.2 with normal range being 24.5 +/- 8 and abnormal being anything below 15.0
Sucrase 12.2 with normal range being 54.4 +/-25.4 and abnormal being anything below 25
Maltase 50.8 with normal range being 160.8 +/-62.8 and abnormal being anything below 100.
Palatinase 2.0 with normal range being 11.1 +/- 6.5 and abnormal being anything below 5
Well, I'm sure they were waiting for his appt with the GI on the 23rd to discuss these results but here they were on the lab report...and I don't need a GI doctor to tell me what this means.
I KNEW there was an issue with sugars! I had to talk them into doing this test (the GI didn't have to much experience with doing it). It was sent to NY, so we didn't have the result right away.
I am not sure yet if this is something he will have life long, or if it is as I've learned about - a secondary deficiency because of the inflammation.
SO, this would be why he did so poorly on tapioca starch, and all fruits and everything with sugar basically....I have more research to do on it and I hope his GI will have more to add but it was a bitter sweet finding. I knew it.....but I was hoping I was wrong - you know?
Will the mom with more knowledge/awareness on FPIES and her son please stand? Oh, wait- please sit down....she's tired! It's been a long week (ok, it's been a long year). As we learn more about test results and process through more from the hospital stay....I am starting to feel the (long overdue really) impatience with the medical system here. I know his "team" cares very much -- maybe even too much. But, I just wish they could help more....maybe they just think I can handle it (because I am)? I need to find a way to get them on the same page- so this doesn't continue to be so exhausting and so I don't have to constantly think about how I am going to next update everyone...and get them to hear me so they can help me help my little man.
I struggle asking for help. Little Man's daddy and I are not accustomed to asking for help- we are used to doing it on our own. I am not sure if this is just how we were both raised, or because of him being in the military and not having family around, or pride or maybe just plain stupidity but we feel our children are OUR children- and therefore OUR responsibility. God is entrusting them to us. We "dealt" with Little man's "issues" (as we used to call them) for many months on our own- he was sensitive to foods in my breastmilk and this caused a lot of weird symptoms for him. He got more and more sensitive as we introduced formula's and foods and we tried to figure things out. I finally asked for help- not first from his pediatrician but from my colleagues- Dietitian's; shortly after I brought his pediatrician up to speed. I now regret not bringing her in the loop sooner but I was just trying to figure it out on my own (again, my kids = my responsibility) and at this time there was throwing up but nothing severe or violent. When I finally did bring it to the pediatrician, it didn't take many visits for her to realize that something was not right with Little Man. She was worried about eosinophilic esophagitis (which we have since learned the two can look a lot alike in the early months). She knew enough to know something wasn't right, but not enough to know what to do to help. But she continued to try. In and out of specialists we went, doctors in the hospital, an endoscopy with biopsy's, lab tests, and of course many sleepless nights- trapped in a glass box that was suffocating me. That feeling of hopelessness....when your baby is in pain and you just know something is so wrong and you keep reaching out for help, putting yourself out there- vulnerable...having people say you are just too anxious and that is why he is so sick or that you're not coping (how does one cope when you have a sick child and no one knows how to help and you keep getting shut doors?). My walls are still up...and Little man's daddy has a fortress built up....a man's responsibility is to protect.
We were building up a team of doctors that we can trust and rebuilding my ability to ask for help...until, this last hospital stay brought too much of that back and now I am feeling a distrust again. If I ask for more help with managing his care, will I be told I am not coping again? Isn't asking for help part of coping? Isn't building up support systems coping? Blogging is coping for me- it is therapeutic to journal our journey and "get it out", reading others blogs is also therapeutic. Finding "normal" in our lives again is coping. I always accept any suggestions for ways to help cope better. I know that is what is best for my boys. A happy (ie non-stressed) mommy = happy family.
Ok, this post went down a curvy path. But these continued lab results and findings only are bringing more and more of this to surface. I have been saying all of these things about Little Man for months...but I'm not being heard. Will they hear me now?
Tuesday, August 3, 2010
Please,please,please dear Lord - I PRAY this is not one of those times. Little Man has been doing SO wonderfully the past few days....I lack the adquate words to describe the giddiness that I am having a more and more difficult time keeping a lid on! My little man is SO happy....could this be? Could we have finally found something to help him finally thrive? I can barely contain the anticipation of the next days- watching him be so happy, hoping for things to stay this way (and continue to get better so we can begin food trials).
Little man had a endoscopy in March, he just had the repeat one 2weeks ago. The first endoscopy, the inflammation wasn't quite visable but the biopsy's told the story...."non-specific inflammation", they kept saying. Now, on the re-scope- the inflammation was "patchy" and visable on scope (so yes, worse) and confirmed as worse on biopsy.
Corn fail has sensitized his system and it is almost so identical to when we started experimenting with supplemental formula bottles and I was still nursing- he was then reacting to trace proteins in my diet and we couldn't figure out why he wasn't gaining weight...and he just kept growing in his sensitivities....
Certainly makes a lot of sense to me, now to just move away from those trace proteins again.....they weren't ok in my breastmilk, why would they be ok in a formula? Clearly, it's not (for my guy who is sensitve to corn)....just have to clarify as kiddo's who are ok with corn thrive so well on the formula's and that is SO great but this just makes so much sense as to why our little man has been so super sensitive and so far away from a baseline for so many months. And why his scope had more inflammation after so many months on an exclusive elemental diet than before.
We re-initiated Neocate in his hemp milk formula, we began immediatly to see his inflammatory markers cascade of symptoms; we saw this plateau off - just right before we began to see blood in his stool. I keep logs of his caloric intakes (everyday since April), the past 10days since dismissal from the hospital, Little Man has been consuming an average of over 1000cal/day (he used to average around 600cal/day). He had a weight check today, he is down again. My theory of what is happening is that his system was assualted by the trace corn proteins in Neocate (once again, higher sensitivy after corn fail), it continued to assualt until it bled his intestines, now he is malabsorbing nutrients again. Time to make some changes....stay tuned....
Sunday, August 1, 2010
Little man really enjoyed the ice chips when we were at the hospital. So, we bought him a sno cone maker so we could duplicate those at home (we have tried just chopping ice ourselves but it is just in big hunks). He thinks the chips are a special treat. That is when he isn't having hemp milk popsicles and hemp seed cereal!
Mud pies (aka, big brothers) are enjoying the sno cone machine as well, of course they get to add sugary syrup to their sno cones. We had friends over for a much needed "normal" playdate day (thanks B boys!!) and Little Man's big brother (2nd mud pie) had to explain that Little man could have sno cones "because he isn't allergic to water"! :) His big brothers really do look out for him.
I found some Hemp seeds, I've made him a cereal out of this. As his ingredient list grows, I will have to think about what else I can make out of it...but for now, he is LOVING his new food. Yesterday morning, he had his cereal while his brothers had Saturday morning chocolate chip pancakes and he got to sit at the table with them! Oh, boy what a treat that was! He sat there for an extra 20min past when they were done, just eating his cereal- licking every morsel of it until it was gone....