i am so pleased to update that tonight is the 3rd night that 'lou has been 90% improved and cleared up. (the above pics are him the 2nd night on antihistamines, having trouble falling asleep, naked because his clothes irritated him too much, swollen red eyes, rashy knees, ankles, wrists and buttocks and him 2 nights ago, about 4 days on the antihistamines, face cleared up beautifully, eyes no longer swollen, sleeping deeply and restfully - and in pajamas!) after about 2 days on the totally corn-free, liquid periactin, the itching stopped almost completely, he's sleeping through the night again and he's happy. he's playing and singing and dancing and back to his old self. i feel like i'm getting my little guy back!
(ha, i just looked over this again and realized they're also before and after pictures of his very 1st ever haircut!)
he does still have a couple pimple-like bumps on his ankles and he did continue to get rashy-like marks under his armpits and on his buttocks - which are not typical reaction patterns for him - but they were not swollen, red or itchy, they just appeared as subdued spots, almost under the skin. i am hoping this is a sign the antihistamine is truly doing its job and stopping the itching and swelling from new allergic reactions.
i'm still waiting for the corn-free steroid (and beginning to wonder if we will still need it!) to be located by the compounding pharmacy. their usual supplier overseas seems to be slow in responding to the unusual request, so they may look into finding a new one if they don't hear back soon. the situation is no longer so urgent now that 'lou is clearing up so well, but this is definitely an option i'd like to know all about for any future serious reactions like this.
we will be seeing the dietician at children's hospital on the 28th of july (today is the 20th) and i was already planning ahead and thinking how frustrating it was going to be to bombard her with our issues only to be told she'd have to research dietary options and concerns for someone as restricted as 'lou - and then make another appointment for us to come back and discuss it. it's not easy for us to get to appointments like these with 5 kids, no babysitter and hubby's crazy work schedule.
as if she read my mind, the dietician called me to ask what his specific allergies were so she could be better prepared for our meeting, as the receptionist had left her a note regarding our appointment that 'lou had many restrictions. we ended up talking for about 45 minutes and i have to say that something i was almost dreading and really going through the motions for my dr.s has turned into something i'm very excited about!
the last dietician we saw was very uninformed about the benefits of breastfeeding a toddler and had no idea how to factor or quantify it into his daily caloric total, so she simply discounted it completely! this was very distressing for me, because there is research-based evidence showing that women who breastfeed for 18 months or longer have fatter milk than women who breastfeed for a shorter duration. there is research-based evidence showing that women who breastfeed more than one child at a time also have fatter milk. if i have been breastfeeding for 10 years without interruption now, how fat must my milk be? if i was breastfeeding 3 children until he was 6 months old and have been breastfeeding 2 since then and he's almost 3 now, how fat must be the milk he gets? if he nurses 8-12 times a day when he's reactive, how much fat and calories must he be getting from my milk? i think the amount and benefits of human milk in his diet is very significant and was very upset to hear it had to be assigned a value of zero because she didn't know how to give it even the most basic value, mathematically or nutritionally.
she also had no idea what foods really contained corn and which didn't, or what all the terms for corn were. it was a very frustrating experience, to say the least. she was very up to date on gluten-free diets and celiac disease, but corn... not so much.
ever since, i've been doing it myself. we've tested 'lou for anemia and vitamin deficiencies, as well as hormonal and metabolic irregularities and it's all been normal, but i've never known exactly how much of specific minerals and vitamins he should be getting, nor which foods to get them from! i've just been winging it and trying to guesstimate which veggies might be best for which main vitamins and minerals. this new dietician mentioned that his rashes and skin issues could be a symptom of a deficiency in something like thiamine - something i'd be totally clueless about! wouldn't it be wonderful if this was all just something as easily fixed as blending some more strawberries or green leafies into his smoothies every day?
whatever we end up finding out, i can't believe how eager i am to have found someone who sounds truly interested and concerned and ready to tackle the problem and brainstorm with me. i didn't even realize how much i feel like i'm on my own in dealing with this until she sat on the phone with me, coming up with ideas and suggestions and really listening to me describe his diet and symptoms over his whole 2 3/4 years so far and asking for this blog address so she can study our menu.
i really get the sense that these dr.s, pharmacists and dieticians intuit that this is an issue they need to learn all they can about. the more we all discuss it, the more it sounds like they agree that corn is not what it used to be and is affecting people in ways it never did before. i think we are all forging very valuable new resources together and i'm so glad to have found such awesome professionals to help me take care of my little guy!
i will update on the dietician appointment and am hoping our journey can help give anyone else dealing with the same thing some ideas.