a reluctant update

i don't want to blog this update. i've tried every way to avoid it lately. have you ever done that, and then gradually everything in your world points you back to what you're trying to ignore?

instead of blogging about how our food allergy guy is doing lately, i delved into my lactation counseling work, which has come to be about helping nursing dyads also dealing w/ multiple food allergies more and more. i followed up with one mom i'd worked with for almost 9 months and heard that they'd trialed his allergens back into her diet and he was now non-reactive to them - mom could lift the restrictions for both her and her toddler! most of the moms and babies i work with get to this point eventually.

happy as i was for them, i couldn't help but reflect that in over 4 yrs of radical restrictions, my son has never lost or "outgrown" an allergy yet, despite complete avoidance and gut-healing protocols. i think it might be time to blog it out, to finally just put it in writing and face it to deal with it. not only does my son have severe multiple food allergies, but they're not acting like "normal" ones at all. he can't try new things, he becomes allergic to them. they don't become milder over time, they become worse, his sensitivity to them increases and his sensitivity levels on tests gets higher the longer we avoid them.

i feel the normal frustration and confusion set in and push the thought of blogging about it away. putting it into text and white will make it real, allow others to bear witness, make me have to accept it. i don't want to accept it, we are muddling through despite the difficulties, i will write about it when we have a positive change or clear cut answer about his unusual presentation, to share.

i ignore my glaring monitor and beckoning keyboard to run some errands w/ my little guy while my other children are in school. we run into another mom i helped through breastfeeding difficulties recently. she stops me to catch up and her 16 month old toddler is taller than my 4 year old and outweighs him by over 10 pounds now. when i get home, i look through my records and realize that almost every single baby or infant i have worked with has surpassed my son in height and weight by the time they are 18 months - 2 years old.

i tell myself he's always been small and ignore the persistent whisper in my brain that reminds me that we now know he hasn't grown even of a fraction of an inch since last may (7 months now) and has typically not gained more than 2-4 oz per month since reaching toddlerhood - in fact, some months he has lost weight - despite my care to provide and track 1200-1400 calories plus unlimited access to breastmilk day and night. i've been nursing for 12 years straight next month and we know that human milk tends to grow fatter the longer a woman lactates, so i guesstimate he is getting at least another 200-600 calories from human milk on days that he nurses longer. i push down the burgeoning weight of the panic that wants to come when i see much younger toddlers surpassing his growth. i will write a blog entry when he's had a growth spurt, i decide.

we make a trip to pick up my daughter from kindergarten and 'lou builds a lego vehicle and tells a classmate of hers. the boy looks at me and exclaims "your baby can talk?!" we stop at costco on the way home and 'lou asks if he can run up and down on the grassy median next to our vehicle while i load up. i say yes and begin loading up only to hear someone calling out to me. an employee working in the parking lot jogs up and points at 'lou and exclaims,
"your baby, your baby!"
i'm puzzled and tell him,
"he's not a baby, he's 4. he's okay there, he knows not to step into the parking lot."
the man apologizes and explains that he thought i hadn't noticed my baby running off. now i recall & understand an incident inside the store. i'd agreed to let 'lou stand in the toy aisle and browse while i walked 20 feet away to look at bedding and towels. a woman had led him back to me by the hand and said,
"she wandered away!" (everyone thinks he's a girl right now - even when he's *not* playing princess dress-up with his sister!)

it sank in that i see him and normalize his size to match his abilities and development, but other people are perceiving his size to be much younger than his years now. i know a lot of children with food allergies - both in real life and in groups and forums online, but i don't know any who have had the slow growth and now apparent total lack of growth that my son has. i know children who have much much higher overall IgE levels who still grow. children who are anaphylactic and airborne, who still grow. children actually allergic to more things than my son and on more restricted diets, who still grow. children who are even allergic to things like heat and cold and their own sweat, but still, they grow.

i think about sitting down and putting this new issue on my blog - of wrapping my brain around it and trying to grasp it and speculate about it - but everything in me just pushes the thought away.
"i'll give it more time", i think.
"it's probably just temporary, once i can look back on it after having gone through it, i can write about it in a more helpful way, with more answers
for other people who might be in the same boat."

well, it's been 7 months now and it hasn't gone away. my son is stuck at 37" and 28 1/2 pounds at 4 years. in summer clothes w/ short sleeves and pants, he still fits in his 3-6 month infant outfits. in long clothes, he's in 18 months - 2t. i am always surprised when it jumps out at me in pictures with all of my kids together. they are all 15 mos- 22 mos apart with the exception of a 3 yr gap between #'s 2 and 3. but #2 is small and #3 is big, so they all end up looking like stair steps...and then there's 'lou, falling way down in the stair step design, also only 22 mos younger than his closest sib but looking 3 or 4 years younger. with 5 kids, you can sort of plot the genetic curve of your family and see when someone is popping up out of it - or falling down out of it. i remember before the food allergies grew like wildfire, their weights were at 20, 30, 40, 50 and 60 pounds exactly. this greatly pleased the OCD side of me. now the other 4 are all still within 10 pounds of each other, but 'lou is 4 and his sister is 5 and he is almost 30 pounds less than her.

i still wasn't ready to blog about all that we're dealing with right now, until i got an email from a reader of my blog. she has a child with similar allergies to mine. she thanked me for blogging about it, she thanked me for speaking from the heart and sharing what has worked and what hasn't... but most of all she thanked me for just putting it out there because she said she'd never found another site that she could relate to. just hearing that she wasn't the only one, her child wasn't the only one, helped her so much. the dr.s don't know how to tell her to feed her child, they can't tell her why he's so allergic or when/if he'll outgrow it. she didn't need me to have all the answers, she didn't need me to fix her problems, she just needed to go somewhere and read that someone else was going through it, too. that someone else was as scared and as frustrated and as lost and determined as her. having a multiple food allergy child is a lot like being lost at sea. this is one diagnosis where the dr.s are possibly learning more from us than we are from them.

she is right, it's so important to share what we are going through - even when we're floundering, because we just might be able to learn from each other and find a better way - and we don't have to use our medical insurance or wait for 9-5 business hours to do so. i know sometimes when i search the other multiple food allergy mom blogs i don't want new recipes, i don't need updates on food allergy organization activities - i want to know what they're dealing with now. i want to know how their journey is going - what twists and turns their path is taking.

so, i'm going to write about where we're at and if i leave it unfinished, well...that's where we're at, too.

'lou is allergic to: corn, dairy, egg, soy, wheat, peanuts, tree nuts, seafood, most beans, lentils and sesame as well as dogs and cats and the usual seasonal allergens like trees, molds and grasses. he's never had shellfish yet, but i know if i gave them to him, he'd become allergic. he has become allergic to most prescription medications i (rarely & only when absolutely necessary) take, even when compounded to remove all allergens.

for the last year or so (until very recently), i have been unable to get him to baseline for any consistent amount of time. i still breastfeed him and he and i avoid all of his allergens 100%. instead of just wheat, we are gluten free (everything w/out wheat uses soy or corn as a sub anyway, so it's not even really an option!) and i always err on the side of caution when i'm not sure if something could be making him react. we are also very lucky that the tests are almost always in perfect harmony with what i observe. (ie, if i suspect he is becoming allergic to beans, the test shows i'm right). we are even more lucky that none of his reactions are anaphylactic, like his big sister's peanut allergy is.

he almost always has a setback in summers. when he was younger, it seemed that multiple summer viruses were the trigger. viruses can set off reactions in children like him as if they've eaten a food they are allergic to. this past summer, i just could not get him cleared up. on my personal scale of 1-10 for allergy reactions and overall misery of life (w/ 10 being the worst), he was at a steady 7, sometimes 8. i just could not figure out what he was reacting so strongly to. his worst/most sensitive allergies are to corn, dairy, egg and dog. we had gotten a new dog (2 great danes now) but i've seen with my own eyes that he does not react to these low allergen dogs, so i knew it wasn't that.

eventually, his reactions got so bad that his swiss cheese skin full of open sores began to slough off in patches on his hands and feet and we had to do a round of oral steroids and antihistamines and practically bind him up at night to stop the incessant scratching. one day it hit me like a ton of bricks that even though we knew better than to take *him* near the public dog park (instant hives!), we were taking the new dog almost daily over the summer to help with her socialization. and then bringing the dogs home *in the vehicle 'lou rides in*, covered in the fur, dander, slobber -and sometimes worse!- of dozens of other dogs, potentially hundreds! we'd bring them home to spread one of his worst allergens all over the house!

as soon as i realized this had to be the cause of his misery, we stopped going to the dog park, deep cleaned the house (thanks be for all wood floors, i say this daily!), washed the dogs and waited to see if he improved. he did, rapidly and dramatically. before the dog park excursions, we'd had his overall IgE level tested and it was elevated, but not alarming. normal is around 118, and his was in the 300's, if i recall correctly. after the dog park excursions, we retested him and it was at 3, 776. this was the end of the mysterious allergy setback of summer, 2011.

we have been settling in for fall and winter and getting ready to enjoy 'lou's healthy time of year. this is when his weight gains and growth become consistent and bigger, this is when his skin gets healthier and this is when we can test with food trials to see if he's tolerating his lesser allergens yet (wheat, soy). but this year i'd taken him to a new dr., a holistic MD - during the height of the summer outbreaks, when we hadn't yet figured them out. we got the results of his extensive testing after 'lou was well on the path to recovery and we were as surprised as the dr. to hear the results. 'lou's blood tests had revealed markers and red flags for a rare, autosomal-recessive genetic disorder called Glutaric Acidemia II (GA2) , an inborn error of metabolism. he recommended that we take 'lou to a biochemical geneticist next.

the more i learned about the disorder, the more i noticed symptoms of 'lou's (and maybe even jonah's atypical seizure disorder and jake's atypical sleep disorder!) that could fit for milder forms of the genetic disorder. 'lou cannot ever go for more than 3-4 hours without food or nursing. at 4 yrs old, he still nurses multiple times a day (6ish on most days, more when he's not feeling well) as well as a couple of times through the night. at this age, most self-led weaning children will begin to avoid public nursing, but 'lou does not. he becomes frantic when he hasn't eaten and needs to nurse, saying things like, "i need mookies now, i'm gonna die, i'm gonna barf..." when he's symptomatic he also has mild/moderate exercise intolerance and muscle weakness and throughout his life there have been several times that someone has noted that he has acetone breath, including right after he was born and had nursed for the first couple of times. if it turns out he does have this or another metabolic disorder, i am certainly going to credit long-term breastfeeding with helping to keep metabolic and sugar crises at bay, because no matter where we are, no matter how far from food, i always have calories and nourishment perfect and ready for him.

by the time we got in to see the geneticist, 'lou was at baseline and as healthy as he gets. he was retested for GA II, but it came back normal. the dr. tells us that you have to test when the child is sick for accurate test results, so now we have to wait until he is sick again. which, it's my job to hope he never is again. in the meantime, his examination revealed several mild or benign genetic/birth defects that 'lou has which the geneticist felt could fit another genetic syndrome that includes lack of growth ("short stature" and "failure to thrive" were his official diagnoses of 'lou's size), so we agreed to test for that one, as well.

the test results for Russell-Silver Syndrome also came back negative and we agreed to see an endocrinologist to cover all the bases, until we can retest for GA II, when 'lou is ill.
he also has genetic abnormalities that match the description of Aarskog-Scott syndrome, so we will be testing for that next.

the endocrinologist said there could be 4 causes for lack of growth in a child:
1. severe emotional stress; like death of a parent, divorce, move to a new house, abusive environment, etc... none of which are present in our case.
2. nutritional deficiencies. not applicable in our case - which even the dr. agreed with after seeing all of 'lou's bloodwork for vitamin & mineral levels.
3. excessive steroid use. 'lou's only been on oral steroids 3 times and we don't use any other form, like sinus sprays - this isn't a factor for him.
4.inflammation. excessive inflammation with many autoimmune disorders can cause the patient to stop growing. i've known of many, many cases that were far worse off than my son's, who still grew - but i'm not sure if anyone can say what level of inflammation stops growth for any individual person - so i leave this one as a possible question mark.

what we do know for sure now is that his "short stature" is not what was genetically intended for him, based on the tests the endocrinologist performed. he said that 'lou's results came back indicating that he has the growth hormone levels of a person of average height. given his small size, the dr. expected to see levels for a person of short stature. which means something is interfering w/ the growth hormones actually getting to where they need to go to make 'lou grow to average height for his age. but it's not his thyroid or any other gland or organ that has anything to do with hormones or growth factors; they all tested normal. so this dr. has given 'lou 6 more months (5 at the time of this writing) to grow an inch. if he does not, his recommendation is for daily human growth hormone injections until 'lou is 16 years old.

i wonder what the consequences of forcing a body to grow taller when you can't get it to gain weight consistently could be. i don't want to make my son emaciated and weak by forcing his body to grow if it doesn't think it should expend the energy doing so, on its own. i'm very driven to find out the cause behind this lack of growth before i just start treating the symptoms blindly.

the endocrinologist agrees that we need to follow up with the geneticists and explore and rule out growth and metabolic disorders in the meantime.

we already saw a GI specialist for him when he was younger as well as a dietician/nutritionist. the GI dr. said he most likely has Eosinophilic Esophagitis. other than the poor growth and multiple food allergies, though, i see no symptoms of it whatsoever. so i declined the confirming biopsy because we already do what we'd need to do if he did have it, which is a radical elimination diet and oral steroids when needed. the dietician said his diet is fantastic and she'd like to share my blog with other patients.

we tried S.L.I.T. therapy this year, and the dr. said 'lou was the 1st patient he'd had with such an incredible sensitivity to corn. (we got to 1 part corn, 10 MILLION parts water and he was still having reactions). the dr. had to recommend we discontinue therapy, and said he'd not had a case he couldn't treat before, so he thinks there is something besides normal food allergy going on with 'lou also. even though it didn't work for us, i completely recommend this therapy (and this dr!) and would try it again in a heartbeat if 'lou were eligible. i did a lot of research into it before we attempted it and this local dr. in particular treated us and our unusual case with the utmost care, concern and careful research. i unhesitatingly refer any interested mothers i work with to dr. tulin-silver for this therapy locally.

so we've been muddling through dr. appointment after dr. appointment and blood test after blood test these past few weeks and all the while the actual allergy reactions really seem to be calming down. i would get 'lou to baseline, then he'd flare up and i'd figure out it wasn't a food, but fleece, which i had no idea is a known skin irritant! then it was any microfiber and wool. he hasn't had a reaction i would put above a 3 all of this fall. we've even had a couple of accidental exposures (white beans in some chili and citric acid in some pineapple) and his reaction was fleeting! instead of the 2-4 weeks of rash, sores, sleeplessness and itchy misery even the smallest ingestion of citric acid used to cause, 'lou was only red and itchy for 2 hours last week! the beans barely caused a blip on his allergy radar.

i've also noticed that 'lou is beginning to react to all kinds of synthetic fabrics just from touching them now. when we go to the drs'. offices or stores or pretty much anywhere outside our own home, he is at baseline when we leave and begins to flare up in the new environment.

he gets red and blotchy, sometimes with wide streaks going down from under his eyes to his jaws. he starts scratching and rubbing. even the rash is not in the typical pattern of a food reaction, so i can tell it's from contact. his nose will start running and yet sounds inflamed and stuffy at the same time. if he sits near a smoker or heavy perfume wearer, his eyes will start burning and he will start asking for a wet rag to put on them.

as soon as we leave, it will all start clearing up - literally while we are still in our vehicle, 10-15 minutes later. it is the most amazing thing i've seen. anyone with a child who has only had very long-lasting, very severe atopic reactions will know what i mean when i say that these temporary and transient reactions seem like magic to me.

perhaps the oddest and most instinctively contradictory part of this for me as a mother to an anaphylactic-reactive child AND an atopic one is that 'lou has also occasionally broken out in hives w/ this new pattern of chemical or environmental reactiveness and i have had to consciously remind myself that while hives are an emergency of the most dire kind in my daughter, they are nothing to worry about in my son and will fade away as soon as we get him out of the area where they started!

his allergist has been telling me all along that the general course these hyperallergic children seem to follow is if they are born with food allergies or develop them in infancy, then they tend to start outgrowing them by 2 or 3, whereupon they begin to develop seasonal/environmental allergies/asthma instead. he thinks these recent changes in 'lou's reaction patterns could indicate that 'lou is finally falling into line w/ the typical pattern, although he's doing it a little later than average and the dr. says most children like 'lou already had chemical sensitivities all along and don't develop them this late, at the same time as the seasonal ones. so we decided to test his allergies with a RAST blood test again and i just got the results the other day.

his overall IgE score has dropped from 3, 776 to 1, 180 (again, w/ around 118 being normal). i think this reflects us cutting out the dog park cross-contamination exposures, his allergist thinks it might signal the seasonal allergies abating w/ the colder weather (3,776 was august, 1,1,80 was december). so this was in line with what we expected and hoped for.

his allergy to dog has more than tripled and is now off the charts. it is literally not measureable anymore unless it comes way down and gets back onto the charts. (it went from 42.7 to over 150). this one didn't surprise me when you think there are hundreds of dogs that go to that dog park and my dogs were bringing home traces of them all, all summer. the allergist worries our own dogs are keeping this number so high, but i've seen with my own eyes how he reacts to dogs (hives, instant "sunburn" rash everywhere, itching) and he doesn't react to ours.

his allergy to cat went from 9.75 to 80 which added insult to injury as i rehomed my beloved cat of 15 years over 2 years ago because of his allergy and he has almost no exposure to cats, ever. he maybe goes into a home with cats in it once every 3-6 months, if that.

grass and trees are now really bad, which also lines up with what we expected.

what we didn't expect is what happened with the foods. dairy quadrupled. dairy has gone up as if he or i are consistently eating some form of dairy. he has never in his entire life eaten any form of dairy. he only got exposed to it through me in utero and then for 7 wks postpartum, through my milk. after that, i cut out every trace of it. the only way i can think he is getting exposed now is simple contact from the rest of the family eating it. his skin is as thin and fragile as rice paper, even when he's not reacting to something. it is always tight and dry, more like an elderly person's than a child's.

he is now also showing up as allergic to all the things we eat. bananas, beef, pork, coconut, avocados, garlic, even rice. he's beginning to have reactions to contact with some of these foods, like coconut. combined w/ the foods he's been allergic to all along, this doesn't leave us much to eat! i call this an "allergic crisis" and this is the 3rd time it has happened to him. we may have to put him on steroids, go down to eating only 2-3 or items that are safe for him for a couple of weeks and hope the steroids calm things down. it is interesting to note that he continues to gain weight through the previous 2 - and this - allergic crisis. he is getting harder and harder to keep at baseline, and he is beginning to wake at night with itching and crying, but he has gained 4 oz in 2 weeks, which is excellent for him. testing also showed that his vitamin d and niacin levels are currently optimal (they were low before and we began supplementation).

atopic children have extremely permeable skin and can transmit allergens directly into their bloodstream this way. 3 of his 4 siblings and his father still eat dairy in our home. the only way i can think of to stop these exposures is to ban dairy from our house completely. it puts a whole new perspective on things like the ice cream party my daughter just had in her kindergarten class. even tho i brought her her own rice milk ice cream, 29 other kindergartners sat around her, dripping and oozing dairy onto their faces, hands, chairs and tables. i've now come to view dairy the way other mothers might view, say, ebola smears.

he starts kindergarten next fall. if i think asking our school to go peanut free was fun, what would it be like to ask his classrooms to give up their pizza and ice cream parties? i guess i will just be keeping him home on party days if his levels remain this high.

all of his other food allergies have gone up, as well -although none so drastically as dairy. (those who know me well and recall that my first recommendation toward gut healing for *any* allergy child is to ditch the dairy (a known gut irritant) can perhaps appreciate the irony and my extreme irkability at this test result!)

wheat was almost close to being the first allergy he "outgrew", but it's back on the allergic radar now. corn is up, despite me seeing less severe reactions with accidental exposures.

his allergist is very surprised as we both expected all the foods to be lower as the seasonal went higher. i can't imagine a child this allergic to *everything*. thoughts of the bubble boy movie come to mind. i am holding out every hope right now that the test just hasn't quite caught up with the reality. and that his growth is also on a delayed reaction from the horrible summer and that soon it will rebound and he will have a nice growth spurt and we can be done with the scarier potential diagnoses.

although honestly, there have been times i've thought the shots and supplements and diets and protocols for those disorders would be easier than what we have to do right now - especially if treating the underlying genetic disorder helped to clear up the food allergies.

so that's where we're at, 4 years later and no clear cut answers or real improvement yet. still, i feel like we are on the edge of some kind of change and i am putting all my energy and intentions toward it being for the better. i'd love to hear from anyone with any similar experiences or insights!

and my best new tip is this:

make an album on FB to keep track of your child's (or your!) allergy symptoms. i went back and put in pics of all of 'lou's reactions and rashes, chronologically, right from birth - with a brief description and list of possible triggers/exposures next to them. this has turned into an invaluable tool for me. i scan through the pics in perfect order and pick up on patterns and triggers much more easily than from my food log alone.

for instance, i recently noticed that in every night-crying-and-scratching pic, he was sleeping in our microfleece sheets, but in good sleeping pics, they were cotton sheets! i also noticed which type of rash seemed to go w/ which type of allergen this way. and it has become especially helpful in meeting with new specialists. i email it to them before our appointment and a picture really is worth a thousand words as it saves us both time and effort in trying to keep track of and describe his symptoms. you can copy and paste the public link to allow anyone to view it, even people not on facebook.

and for anyone in michigan or nearby who thinks they might like to utilize the fact that our dr.s and pharmacy have already had to learn about corn and other "extreme" food allergies because of treating 'lou, here's a list of the dr.s i use and highly recommend:

Welcome to Troy Family Practice, PLLC » Troy Family Practice, PLLC ( dr. stacey beltz is a primary care physician who "gets" and works with concerns of a mother breastfeeding a hyperallergic child)
allergy/bahrainwalla (dr. abdul bahrainwala is the most patient and open-minded allergist we've ever met who has learned to think outside the 'prescriptions for symptoms" box for kids like 'lou & truly respect, value & listen to a parent as an expert on their child)
Bio Energy Medical Center 734-995-3200 (dr. james neuenschwander, holistic MD - not sure if i love this guy b/c i told him once i thought another dr. might be avoiding my calls and he laughed his ass off and said, "want me to call him and tell him that's not gonna work with you?" or because he's not just another pretty dr. face but digs deeper and looks for the main cause and not just the symptoms. if we find out 'lou really does have GA II, it will only be because this dr. took the time to look harder then anyone else so far.)
S.L.I.T. (dr. tulin-silver gets all of my referrals for local moms considering allergy shots as well as ones having unresolving food allergy issues akin to 'lou's.)
http://www.richmanrootdelaney.com/ (dr. delaney is a peds dentist whose entire staff consider and accommodate children with concerns like 'lou's.)
Physicians Compounding Pharmacy - full range of compounded medications, including cosmeceuticals, nutraceuticals, and pharmaceuticals. (best compounding pharmacy ever! karen raetz has learned everything about corn terms right along with me, i trust her implicitly not to make a mistake or overlook anything in making our medications and supplements.)

being a mother.

there are certain times when your status as somebody's mother hits you like a ton of bricks.
like the 1st time you hold, wear or catch the fresh warm offal of another human being.
you think,
"omg!! this is what only parents do, i'm really a parent now!"

or the 1st time you watch one of your children become gravely ill,
choke until they turn blue, or have a seizure or anaphylactic reaction.
and you think,
"my life depends on yours - if this child dies, i will die, too -
omg, i am really a mother."

or deep in the dark watches of the night, when lispy little declarations
of love are whispered fervently in the general direction of your breast.
and you think,
"i am your mother, what on earth did i have to live for before you?"

and sometimes you have to look a little harder for it.
like when you always hang your leather belt on the empty towel rod
in the bathroom, just so.

and one day you walk in and there's a miniature copy
of your brown leather belt hanging right next to yours, side by side,
hung just so.
and you think,
"i am her mother - she wants to be just like me. how lucky am i?"