House of Histamine, Charlie Edition
Feb. 28th, 2011 03:01 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
marydellAfter months of unhappiness and out-of-control temper events, I believe we have an allergy-skin-stomach-temper management regimen that kinda-sorta works for Charlie. I'm writing up the whole situation here partly to share for those who are interested, and partly to record it for Mary-in-six-months when I need to try yet another new regimen and can't remember what does & doesn't work.
What works for Charlie:
1. Totally avoid eggs, apples, grapes, and chocolate, because of allergy or a non-allergic eczema-causing reaction. Eggs are an allergen for sure; the others may or may not be, but they are eczema triggers.
2. Totally avoid juice of all kinds, because it may cause stomach upset. It definitely causes an anger problem, which we interpret as a stomach problem at this time. Seeing specialist in April. Eating oranges is ok, but drinking orange juice is definitely not.
3. Fiber gummies, twice a day, and occasional Fleet kiddie laxative, because his low-fiber diet is doing him no favors. He can eat high-fiber grains, but isn't used to them because they were forbidden until about 8 months ago, so mostly won't. Other high-fiber foods are also not easy to get into his diet, so that's a work in progress.
4. He can tolerate lanolin now, blessed be all sheep, so Eucerin, Aquaphor, and Bag Balm are available for soothing his itchies and owies. Other concoctions that are in regular rotation include Mupirocin (antibiotic ointment), Mometasone fuoarate and alcometosone somethingorother, both steroids--the Mometasone for his body and the Alcometasone for his face. Also Johnson's baby cream, the scary pink kind, and Eucerin baby wash. We still need to add a better lotion that can go on quickly, since the heavy creams that help so much don't lend themselves to head-to-toe use, particularly not on a wet toddler who wants to go watch choo-choos on TV.
5. Kool-aid and Pedialyte, despite being horrible and full of sugar and bad things, do not appear to give him a rash or a stomach ache, when consumed in reasonable quantities, so he gets one of those with dinner.
6. He can tolerate any amount of milk and milk products, so those continue to be a staple of his diet.
7. Claritin might be making him unhappy for about a half-hour after taking it, so we're giving it with milk in the hopes that that's just a stomach thing. We're only giving him half a dose, also, in the mornings, to minimize side effects and sleeplessness. So far (5 days and counting) his good behavior and good speech comprehension etc are continuing, so that makes this the winning antihistamine at the moment, although "I itchy!" is becoming an increasingly common statement as the days march onward. We're hoping diligent eczema management can address that, and that we can stick with Claritin. If he develops a chronic asthma cough we'll have to revisit.
8. Half a kiddie tums at bedtime on any day his mood is iffy, until we see the specialist and determine if he should go back on Zantac (he took that as an infant).
9. He can tolerate most antibiotics pretty well, although they start to upset his stomach after several days. Florastor kids helps with that, but not 100%. Still, compared to how some folks react to antibiotics, this is good, particularly since he's susceptible to skin infections on top of the usual toddler respiratory guh.
10. He has not had an ear infection since he got tubes in his ear over a year ago, blessed be all tubey things. We'll see how he does once they've both come out--one has worked its way out, as they do; one is still in place.
11. 100% cotton clothes. Old Navy's clothes are actually extremely soft, some of the best we've found, and much more affordable than alternatives.
12. Laundry deterg with no brighteners, dyes, or perfumes. We use 7th generation; All and Tide Free both seem to have brighteners so aren't really Free.
What doesn't work for him, or doesn't work the way we want, anyway:
1. Benadryl. He was on this forever and ever, and we will still use it if we absolutely have to, but it appears to have been baaaaad for him on many levels. It didn't make him hyper like it does some kids, but it gave him a very short temper and appears to have suppressed his verbal abilities quite a lot. Taking him off it improved his behavior a lot, possibly through the mechanism of making words come more easily to him and therefore reducing his general frustration. Since he's been off it he's been talking up a storm, understanding much more of what's said to him, busting out some 3-syllable words, and having a much easier time with transitions and splitting his focus. Also his separation anxiety has gotten much, much better, and his appetite has improved. I won't say benadryl is the devil because it is a literal life-saver, but we are hoping to avoid using it.
2. Miralax works but makes him very unhappy, particularly if used for more than a couple of days in a row, which again we interpret as a stomach problem.
3. Atarax. This is another antihistamine that we tried after benadryl and it made him sleep like a rock but wake up poorly rested, and he was out of control with rage--at one point he screamed for 20 minutes straight because of a minor provocation, which is not normal for him. He had a dose and a half of that over the course of 2 days, which was enough for us to swear it off forever.
4. Pulmicort probably works great, and might not cause any behavioral side effects, but damned if we can get him to take it for more than a couple of days in a row. It's a daily nebulized inhaled steroid, and he just doesn't feel like dealing with the nebulizer, and with the temper problems in play, we had to stop trying for a bit. He's only supposed to have it in the winter, so we're going to just bag it for this year and try again next year when he has the verbal skills to understand why he needs it.
5. Albuterol and Xopanex both make him hyper like whoa. OTOH, they do help him breathe, and he'll sit still for the neb treatment for those, because he can feel them helping him, unlike the pulmicort which is a prevention thing. So we will continue to use these as needed, but with fist-shaking all around because they make for a difficult several hours after using them.
6. Prednisone clears his lungs, and quickly, but it causes an eczema rebound and makes him PSYCHO. Like, hitting Mommy 30 times in a day type of psycho. Also it probably destroys his stomach. We can put him on this for a couple of days in a real crisis but we hates it, Baggins. Prednisone is the devil.
7. Skin care products with anything natural in them, except lanolin now that he can tolerate it. Cetaphil, for example, has tree nuts in it, who thought that was a good idea? All Aveeno products have oatmeal, which he can eat now without a problem but still can't have on his skin. Etc.
8. Random heaps of skin care products that we have tried over the years. Most of them are either too thin so don't do a good enough job moisturizing (most things with "lotion" in the name), or too thick so don't have enough flow to spread over his entire skin.
9. Elidel for eczema didn't help him, probably stings a lot, and also has a black box warning saying some people who use it also, possibly coincidentally, get cancer. We tried that for about a week and were very glad to say goodbye to it.
Stuff we haven't tried yet: Zyrtec, Allegra, Singulair (reputed to make LOTS of children psycho, including hallucinations and suicidal ideation, AIEEE! But works really well for the people it works for. We will wait til he can reliably talk about himself before we try that one, if possible).
So, that's where we are with managing Charlie's atopy. Next: managing mine.
Bonus photo unrelated to all of this stuff: The banana train
What works for Charlie:
1. Totally avoid eggs, apples, grapes, and chocolate, because of allergy or a non-allergic eczema-causing reaction. Eggs are an allergen for sure; the others may or may not be, but they are eczema triggers.
2. Totally avoid juice of all kinds, because it may cause stomach upset. It definitely causes an anger problem, which we interpret as a stomach problem at this time. Seeing specialist in April. Eating oranges is ok, but drinking orange juice is definitely not.
3. Fiber gummies, twice a day, and occasional Fleet kiddie laxative, because his low-fiber diet is doing him no favors. He can eat high-fiber grains, but isn't used to them because they were forbidden until about 8 months ago, so mostly won't. Other high-fiber foods are also not easy to get into his diet, so that's a work in progress.
4. He can tolerate lanolin now, blessed be all sheep, so Eucerin, Aquaphor, and Bag Balm are available for soothing his itchies and owies. Other concoctions that are in regular rotation include Mupirocin (antibiotic ointment), Mometasone fuoarate and alcometosone somethingorother, both steroids--the Mometasone for his body and the Alcometasone for his face. Also Johnson's baby cream, the scary pink kind, and Eucerin baby wash. We still need to add a better lotion that can go on quickly, since the heavy creams that help so much don't lend themselves to head-to-toe use, particularly not on a wet toddler who wants to go watch choo-choos on TV.
5. Kool-aid and Pedialyte, despite being horrible and full of sugar and bad things, do not appear to give him a rash or a stomach ache, when consumed in reasonable quantities, so he gets one of those with dinner.
6. He can tolerate any amount of milk and milk products, so those continue to be a staple of his diet.
7. Claritin might be making him unhappy for about a half-hour after taking it, so we're giving it with milk in the hopes that that's just a stomach thing. We're only giving him half a dose, also, in the mornings, to minimize side effects and sleeplessness. So far (5 days and counting) his good behavior and good speech comprehension etc are continuing, so that makes this the winning antihistamine at the moment, although "I itchy!" is becoming an increasingly common statement as the days march onward. We're hoping diligent eczema management can address that, and that we can stick with Claritin. If he develops a chronic asthma cough we'll have to revisit.
8. Half a kiddie tums at bedtime on any day his mood is iffy, until we see the specialist and determine if he should go back on Zantac (he took that as an infant).
9. He can tolerate most antibiotics pretty well, although they start to upset his stomach after several days. Florastor kids helps with that, but not 100%. Still, compared to how some folks react to antibiotics, this is good, particularly since he's susceptible to skin infections on top of the usual toddler respiratory guh.
10. He has not had an ear infection since he got tubes in his ear over a year ago, blessed be all tubey things. We'll see how he does once they've both come out--one has worked its way out, as they do; one is still in place.
11. 100% cotton clothes. Old Navy's clothes are actually extremely soft, some of the best we've found, and much more affordable than alternatives.
12. Laundry deterg with no brighteners, dyes, or perfumes. We use 7th generation; All and Tide Free both seem to have brighteners so aren't really Free.
What doesn't work for him, or doesn't work the way we want, anyway:
1. Benadryl. He was on this forever and ever, and we will still use it if we absolutely have to, but it appears to have been baaaaad for him on many levels. It didn't make him hyper like it does some kids, but it gave him a very short temper and appears to have suppressed his verbal abilities quite a lot. Taking him off it improved his behavior a lot, possibly through the mechanism of making words come more easily to him and therefore reducing his general frustration. Since he's been off it he's been talking up a storm, understanding much more of what's said to him, busting out some 3-syllable words, and having a much easier time with transitions and splitting his focus. Also his separation anxiety has gotten much, much better, and his appetite has improved. I won't say benadryl is the devil because it is a literal life-saver, but we are hoping to avoid using it.
2. Miralax works but makes him very unhappy, particularly if used for more than a couple of days in a row, which again we interpret as a stomach problem.
3. Atarax. This is another antihistamine that we tried after benadryl and it made him sleep like a rock but wake up poorly rested, and he was out of control with rage--at one point he screamed for 20 minutes straight because of a minor provocation, which is not normal for him. He had a dose and a half of that over the course of 2 days, which was enough for us to swear it off forever.
4. Pulmicort probably works great, and might not cause any behavioral side effects, but damned if we can get him to take it for more than a couple of days in a row. It's a daily nebulized inhaled steroid, and he just doesn't feel like dealing with the nebulizer, and with the temper problems in play, we had to stop trying for a bit. He's only supposed to have it in the winter, so we're going to just bag it for this year and try again next year when he has the verbal skills to understand why he needs it.
5. Albuterol and Xopanex both make him hyper like whoa. OTOH, they do help him breathe, and he'll sit still for the neb treatment for those, because he can feel them helping him, unlike the pulmicort which is a prevention thing. So we will continue to use these as needed, but with fist-shaking all around because they make for a difficult several hours after using them.
6. Prednisone clears his lungs, and quickly, but it causes an eczema rebound and makes him PSYCHO. Like, hitting Mommy 30 times in a day type of psycho. Also it probably destroys his stomach. We can put him on this for a couple of days in a real crisis but we hates it, Baggins. Prednisone is the devil.
7. Skin care products with anything natural in them, except lanolin now that he can tolerate it. Cetaphil, for example, has tree nuts in it, who thought that was a good idea? All Aveeno products have oatmeal, which he can eat now without a problem but still can't have on his skin. Etc.
8. Random heaps of skin care products that we have tried over the years. Most of them are either too thin so don't do a good enough job moisturizing (most things with "lotion" in the name), or too thick so don't have enough flow to spread over his entire skin.
9. Elidel for eczema didn't help him, probably stings a lot, and also has a black box warning saying some people who use it also, possibly coincidentally, get cancer. We tried that for about a week and were very glad to say goodbye to it.
Stuff we haven't tried yet: Zyrtec, Allegra, Singulair (reputed to make LOTS of children psycho, including hallucinations and suicidal ideation, AIEEE! But works really well for the people it works for. We will wait til he can reliably talk about himself before we try that one, if possible).
So, that's where we are with managing Charlie's atopy. Next: managing mine.
Bonus photo unrelated to all of this stuff: The banana train
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2011-02-28 11:32 pm (UTC)no subject
Date: 2011-02-28 10:43 pm (UTC)That photo is amazing. The combination of the banana train and Charlie's poignantly cynical expression make me think that it's a publicity shot for the little-known Tennessee Williams play, The Banana Train Don't Stop Here Anymore.
no subject
Date: 2011-03-01 04:23 am (UTC)I am laughing at your TW play idea. A decaying southern banana plantation...
no subject
Date: 2011-02-28 11:05 pm (UTC)Basically - we do not have things with 4 paws and fur in the house because we stop breathing.
We had really good luck with Fluticasone Propionate nasal spray. Two squirts am & pm seemed to be a maintenance med. I think we had inhalents for rescue meds - when asthma zapped us.
I've had a tremendous amount of luck with allergy shots. The minute the kids and I were at maintenance doses we quit having asthma attacks, headcolds that turned into sinus/ear/strep infections immediately, etc.
We didn't have many food allergies - but I quit giving my kids ANYTHING but milk and water. Juices are so full of KRAP that I just stopped. It had the surprise side effect of making my kids eat better at meal times - talk about your empty calories.
For skin - I have an Rx for Betamethasone Dipropionate ointment. It is a miracle worker. I also use Aquaphor. As a kid - I had a very good allergist who had me use Crisco! It's pure veg oil - no perfumes or other additives that irritated my skin. I sued it without shame for years. I could never tolerate lonolin - made from wool - which is another NO NO NO product for me.
We had great success with using a humidifier at night in the winter.
Good luck - eventually both my kids outgrew most of their eczema and allergies.
no subject
Date: 2011-03-01 04:08 am (UTC)He's gradually outgrowing the worst of it, thank goodness. I haven't outgrown mine yet but I did get shots and they helped quite a lot.
no subject
Date: 2011-03-01 12:11 pm (UTC)It has been amazing how allergy shots helped me. Tedious as they are.
no subject
Date: 2011-03-01 12:21 am (UTC)Not being able to use oatmeal baths would make my managing A's sensitive skin absolutely dire. So sorry that's the case for Charlie.
This must be a huge relief for everyone to have so much resolved! (And wishing you similar success.)
M&A are thrilled like little thrilled things with all the robots and dinosaurs.
no subject
Date: 2011-03-01 02:34 am (UTC)(Getting too much red food dye gives me a horrific rash, although fortunately that's all it does.)
no subject
Date: 2011-03-01 04:02 am (UTC)no subject
Date: 2011-03-01 04:13 am (UTC)I'm glad they like the robots & dinos! Charlie likes bright colors and interesting textures, but so far doesn't seem to give much of a hoot about representative pictures, so we pick those more for our own enjoyment than for his.
And thanks, it is SUCH a relief. Being able to verbally redirect him is kind of amazing, after being in screamy-freakout-ville since December & earlier. When he tried to playfully bite me today I said "no bites, give kisses instead." And he gave me a kiss! He is not usually a kisser so that was nice, and it was also like, hey, this talking thing actually works!
no subject
Date: 2011-03-01 04:31 am (UTC)M and A are the other way - colors are whatever, but oh, animals! robots! DINOSAURS! (Alex insists that the car-driving dino is a turtle, though.)
I'm so glad Charlie's responding to verbal interaction. Such a relief.
I clearly need to move to a children's museum or toystore or something. M has a deep need to disassemble everything, and Gamma's house does not have enough *allowable* opportunity.
no subject
Date: 2011-03-01 02:32 am (UTC)Amusingly, his Benadryl reaction is my "most things with -dex- in the name" reaction. Dextromethorphan (found in OTC cold remedies, all of them, even though it doesn't actually work as a cough suppressant, because it's cheap) makes me woozy and gives me that tip-of-the-tongue feeling with most words, and also makes me easily confused, but prescription strength dex-type cough suppressants make me literally unable to think. I had to go off them to write a paper once because on them it took me three days to write a paragraph.
Poor Charlie.
no subject
Date: 2011-03-01 04:15 am (UTC)I, of course, have the totally bog-standard reaction of getting sleepy, so my experience is not instructive for determining his, inconveniently enough.
no subject
Date: 2011-03-01 04:46 pm (UTC)