cmb
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Post by cmb on Aug 13, 2019 17:53:15 GMT -6
I don’t know if I actually shared the full story or not.. DS1 got diagnosed with juvenile hypothyroidism at 16/17 months. We tested his TSH at 13m due to no teeth, and he’s seen a pediatric endocrinologist ever since. He got placed on synthroid when he got diagnosed. At age 3, we did a trial to see if his thyroid would figure things out and start working on his own. 4 months in, and his TSH got too high, so back on he went. His endo requested that we try once more at 4.5, so we pulled him off the synthroid this past June. He went in for his first blood draw two weeks ago at the 8 week mark. They called me mid last week to say his TSH was elevated, that the trial failed, and he needed to go back on synthroid. This was his last shot to see if his thyroid would figure things out and start functioning correctly. Apparently, it was the other endocrinologist, who doesn’t deal with the hypothyroid young kids, that made this call. But with today’s call, because his T3/T4 levels are perfect, his actual endocrinologist, who has followed him for the last 3 years, wants to give it another 8 weeks because he barely failed his last trial. As long as his T3/T4 are behaving, she’s okay with leaving his TSH above 4.5 but below 15-20. He’s at an 11 now If he fails does it mean he's on the medication for life or is there surgery or some other alternative? Meds for life- his thyroid is lower functioning than it should be so he’ll need to replace those hormones it would normally creates
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cmb
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Post by cmb on Aug 15, 2019 13:17:27 GMT -6
The ENT thinks DS2 has had a chronic adenoid infection, which could possibly be the cause behind most of his ear infections- basically, anytime he gets congested, he ultimately ends up with an ear infection.
So, we’re to try an antibiotic nasal spray for 4 weeks to see if we can make his adenoids start to shrink with a follow up in 2 months. The ENT doesn’t want to remove them before age 3 if he can avoid it 🤷🏼♀️
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ttcbabyj
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Post by ttcbabyj on Aug 15, 2019 19:34:59 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕
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cmb
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Post by cmb on Aug 16, 2019 3:20:31 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 How long has she had this? I’d be looking at food allergies, TBH. DS1’s didn’t turn from a diaper rash/eczema reaction to hives until age 3, so we had no idea
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Post by sheilathetank on Aug 16, 2019 5:06:32 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 Yes. I had excema as a kid and it evolved into psoriasis as an adult. Now I rarely get flare ups but when they do they hurt like if you had road rash. The only thing I found to work and work well every time is tar based products. MG217 is my go to for flare ups. It's smells fucking awful. Like fresh asphalt but it seriously helps. In 24 hours it softens the skin and starts to heal.
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Post by sheilathetank on Aug 16, 2019 5:07:53 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 How long has she had this? I’d be looking at food allergies, TBH. DS1’s didn’t turn from a diaper rash/eczema reaction to hives until age 3, so we had no idea ttcbabyj Oh yeah, mine was triggered by eggs and chocolate. I eventually outgrew it in middle school, but like I said earlier, it evolved into something else. Eta: eczema, food allergies, and asthma all go hand in hand. If you have one you are much more likely to have another or all 3. I would ask for an allergist referral and go from there.
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ttcbabyj
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Post by ttcbabyj on Aug 16, 2019 9:07:13 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 How long has she had this? I’d be looking at food allergies, TBH. DS1’s didn’t turn from a diaper rash/eczema reaction to hives until age 3, so we had no idea She’s had just like the dry patches on her skin since she was about 6 months old. I never thought about an allergy. That is a good point the rash she has now on her elbows does look like an allergic reaction. She is allergic to avocados. I will start a food diary to see if I can make some connections. Thanks!
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ttcbabyj
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Post by ttcbabyj on Aug 16, 2019 9:09:21 GMT -6
How long has she had this? I’d be looking at food allergies, TBH. DS1’s didn’t turn from a diaper rash/eczema reaction to hives until age 3, so we had no idea ttcbabyj Oh yeah, mine was triggered by eggs and chocolate. I eventually outgrew it in middle school, but like I said earlier, it evolved into something else. Eta: eczema, food allergies, and asthma all go hand in hand. If you have one you are much more likely to have another or all 3. I would ask for an allergist referral and go from there. Thank you! I’m sending her pcp an email right now to get a referral to an allergist. She went to an allergist about a year ago to see if her avocado allergy was related to something else.
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piratecat
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Post by piratecat on Aug 16, 2019 9:38:20 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 My kid's had it pretty bad at times but it generally clears up in the summer. When it's been really bad the only thing that works to clear it up is a prescription steroid lotion but obviously we try to limit its use, especially since his worst flare ups happen on his face (chin and cheeks). For the rest of his body where it's not nearly as bad we use Eucerin eczema cream on damp skin and that seems to keep it mostly under control. I hope your appointments go well.
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tgrimes
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Post by tgrimes on Aug 16, 2019 9:51:26 GMT -6
Anyone dealing with eczema? DD’s is getting worse. Her pediatrician prescribed some oil, but the oil hasn’t really done much. She has a really bad rash on her elbows. I’ve been trying calamine lotion. Hydrocortisone does nothing. We have an appointment with a pediatric dermatologist in a couple of weeks. I’ve been taking pictures in case her rashes are gone by then. I really hope she outgrows this, I hate seeing her scratching. 😕 My 5yo was recently prescribed Eucrisa. As long as I'm deligent about using it twice a day, it's worked wonders. It's expensive though so if anyone is looking to use it, go to their website and get their coupon. I only pay $10 for a tube.
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tgrimes
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Post by tgrimes on Aug 16, 2019 9:55:38 GMT -6
The ENT thinks DS2 has had a chronic adenoid infection, which could possibly be the cause behind most of his ear infections- basically, anytime he gets congested, he ultimately ends up with an ear infection. So, we’re to try an antibiotic nasal spray for 4 weeks to see if we can make his adenoids start to shrink with a follow up in 2 months. The ENT doesn’t want to remove them before age 3 if he can avoid it 🤷🏼♀️ Just curious, but did he say why he wanted to wait until 3? I've never heard that before. I know ENTs are so different and I love comparing stories with what the doctors say. I hope the nasal spray works for him! My son had his taken out at 1.5. Granted we're still getting the EIs but that's because we're pretty sure he has selective IgM deficiency.
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cmb
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Post by cmb on Aug 16, 2019 10:25:59 GMT -6
How long has she had this? I’d be looking at food allergies, TBH. DS1’s didn’t turn from a diaper rash/eczema reaction to hives until age 3, so we had no idea She’s had just like the dry patches on her skin since she was about 6 months old. I never thought about an allergy. That is a good point the rash she has now on her elbows does look like an allergic reaction. She is allergic to avocados. I will start a food diary to see if I can make some connections. Thanks! I am also allergic to avocados. Does she eat a lot of strawberries or kiwis? They’re actually in the same pollen family and can cause similar reactions. Neither of my boys have seem to inherited the avocado reaction, but DS1 is severely allergic to strawberries (even berry flavored meds cause a rash)
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cmb
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Post by cmb on Aug 16, 2019 10:29:19 GMT -6
The ENT thinks DS2 has had a chronic adenoid infection, which could possibly be the cause behind most of his ear infections- basically, anytime he gets congested, he ultimately ends up with an ear infection. So, we’re to try an antibiotic nasal spray for 4 weeks to see if we can make his adenoids start to shrink with a follow up in 2 months. The ENT doesn’t want to remove them before age 3 if he can avoid it 🤷🏼♀️ Just curious, but did he say why he wanted to wait until 3? I've never heard that before. I know ENTs are so different and I love comparing stories with what the doctors say. I hope the nasal spray works for him! My son had his taken out at 1.5. Granted we're still getting the EIs but that's because we're pretty sure he has selective IgM deficiency. Thanks! If I can avoid surgery after DS1’s fiasco, I will, but I’d also rather have it done earlier than when he can remember My understanding is adenoids and tonsils can play a roll in immune response until age 3, so he prefers to wait until that role starts to decline.
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tgrimes
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Post by tgrimes on Aug 16, 2019 10:31:15 GMT -6
Just curious, but did he say why he wanted to wait until 3? I've never heard that before. I know ENTs are so different and I love comparing stories with what the doctors say. I hope the nasal spray works for him! My son had his taken out at 1.5. Granted we're still getting the EIs but that's because we're pretty sure he has selective IgM deficiency. Thanks! If I can avoid surgery after DS1’s fiasco, I will, but I’d also rather have it done earlier than when he can remember My understanding is adenoids and tonsils can play a roll in immune response until age 3, so he prefers to wait until that role starts to decline. That makes sense. Mine was already at 23 EIs and getting his 2nd set of tubes at 1.5 so they removed the adenoids too, which were infected. What was your other son's experience?
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cmb
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Post by cmb on Aug 16, 2019 10:34:52 GMT -6
Thanks! If I can avoid surgery after DS1’s fiasco, I will, but I’d also rather have it done earlier than when he can remember My understanding is adenoids and tonsils can play a roll in immune response until age 3, so he prefers to wait until that role starts to decline. That makes sense. Mine was already at 23 EIs and getting his 2nd set of tubes at 1.5 so they removed the adenoids too, which were infected. What was your other son's experience? We had issues with the hospital and scheduling (he’s ASD), then versed didn’t work on him so when they took him back, it was a disaster. His wake up with awful, uncontrollable screaming from the wake up until they were halfway home. Overall, it isnt awful in the grand scheme of what could be awful, but in general, I’d rather avoid it all if we could He’s speech delayed and had really bad sleep apnea- the tonsils obstructed over 80% of his throat when they went in
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Post by sheilathetank on Aug 16, 2019 10:41:04 GMT -6
allergies to avocados, kiwis, and bananas can also indicate a potential latex allergy FYI.
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tgrimes
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Post by tgrimes on Aug 16, 2019 10:43:34 GMT -6
That makes sense. Mine was already at 23 EIs and getting his 2nd set of tubes at 1.5 so they removed the adenoids too, which were infected. What was your other son's experience? We had issues with the hospital and scheduling (he’s ASD), then versed didn’t work on him so when they took him back, it was a disaster. His wake up with awful, uncontrollable screaming from the wake up until they were halfway home. Overall, it isnt awful in the grand scheme of what could be awful, but in general, I’d rather avoid it all if we could He’s speech delayed and had really bad sleep apnea- the tonsils obstructed over 80% of his throat when they went in What a pain in the ass. Poor baby.
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cmb
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Post by cmb on Aug 16, 2019 10:45:33 GMT -6
allergies to avocados, kiwis, and bananas can also indicate a potential latex allergy FYI. That’s interesting- I get hives from adhesive, not latex. I wonder if it’s all related
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ttcbabyj
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Post by ttcbabyj on Aug 16, 2019 10:48:02 GMT -6
allergies to avocados, kiwis, and bananas can also indicate a potential latex allergy FYI. The allergist did test for the latex allergy. She said we would retest in a year. I knew about bananas, but not kiwis. She loves “shewees” as she calls them. The avocado allergy is tough because a lot kids hair products use avocado oil.
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ttcbabyj
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Post by ttcbabyj on Aug 16, 2019 10:49:01 GMT -6
allergies to avocados, kiwis, and bananas can also indicate a potential latex allergy FYI. That’s interesting- I get hives from adhesive, not latex. I wonder if it’s all related DD also has a reaction to adhesives. I can’t give her stickers because she wants to put them on her body and she always has a reaction.
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ttcbabyj
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Post by ttcbabyj on Aug 16, 2019 10:51:48 GMT -6
She’s had just like the dry patches on her skin since she was about 6 months old. I never thought about an allergy. That is a good point the rash she has now on her elbows does look like an allergic reaction. She is allergic to avocados. I will start a food diary to see if I can make some connections. Thanks! I am also allergic to avocados. Does she eat a lot of strawberries or kiwis? They’re actually in the same pollen family and can cause similar reactions. Neither of my boys have seem to inherited the avocado reaction, but DS1 is severely allergic to strawberries (even berry flavored meds cause a rash) Thanks! I didn’t know about the strawberries, the allergist only mentioned bananas and latex. I guess I’ll see how she reacts in the next couple of days, she had a butt load of strawberries last night. I used to be allergic to strawberries, then I outgrew the allergy. The allergy didn’t stop me from secretly eat them and the blowing up like a puffer fish. 🤦🏽♀️
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Post by sheilathetank on Aug 16, 2019 11:02:34 GMT -6
allergies to avocados, kiwis, and bananas can also indicate a potential latex allergy FYI. That’s interesting- I get hives from adhesive, not latex. I wonder if it’s all related most adhesives, like in bandaids, are latex based. Thankfully now a lot of bandaids specifically say no latex on them, but most first aid kits still come with regular bandaids. I could go on a rant about bandaids and the time I had to open every fucking box in the store to check if they were no latex because at the time they only put the no latex symbol on the banaid itself and not on the fucking box.
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Post by sheilathetank on Aug 16, 2019 11:03:49 GMT -6
fun fact, back in the day diapers used to have elastic waists made from latex materials. That's how my mom found out i was allergic and why she ended up cloth diapering.
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Post by sheilathetank on Aug 16, 2019 11:10:43 GMT -6
Thanks! If I can avoid surgery after DS1’s fiasco, I will, but I’d also rather have it done earlier than when he can remember My understanding is adenoids and tonsils can play a roll in immune response until age 3, so he prefers to wait until that role starts to decline. That makes sense. Mine was already at 23 EIs and getting his 2nd set of tubes at 1.5 so they removed the adenoids too, which were infected. What was your other son's experience? Am i reading this right? 23 ear infections. My god, that poor kid.
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tgrimes
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Post by tgrimes on Aug 16, 2019 11:22:19 GMT -6
That makes sense. Mine was already at 23 EIs and getting his 2nd set of tubes at 1.5 so they removed the adenoids too, which were infected. What was your other son's experience? Am i reading this right? 23 ear infections. My god, that poor kid. Yeah. We're up to 47 now. He'll be 3 in November. We have an ENT, immunologist and infectious disease doctor. It's super fun.
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Post by sheilathetank on Aug 16, 2019 11:25:23 GMT -6
Am i reading this right? 23 ear infections. My god, that poor kid. Yeah. We're up to 47 now. He'll be 3 in November. We have an ENT, immunologist and infectious disease doctor. It's super fun. omfg. that's horrible. That's more ear infections than months old. Have they considered doing a myringotomy with culture yet?
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tgrimes
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Post by tgrimes on Aug 16, 2019 12:13:11 GMT -6
Yeah. We're up to 47 now. He'll be 3 in November. We have an ENT, immunologist and infectious disease doctor. It's super fun. omfg. that's horrible. That's more ear infections than months old. Have they considered doing a myringotomy with culture yet? We've had 2 sets of tubes and lots of cultures from his ears and nose. He still has a ginormous hole in his right ear drum and the left one finally closed up in June. We had been on a prophylactic antibiotic, per the immunologist, but it wasn't working. That's when he recommended taking out the tubes in case they were colonized. When he was still getting the infections, we went to the infectious disease doctor. Infectious disease and the ENT thinks he has selective IgM deficiency. It makes sense since all of his cultures show very common bacteria that he should be able to fight off. We go back to the immunologist later this month so I'm interested to see what he says. ETA we also re-vaccinated him last November with the prevnar. I'm probably going to ask them to check his streptococcus titers again when they do blood work next time.
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cmb
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Post by cmb on Aug 16, 2019 16:08:17 GMT -6
oh my tgrimes, that’s awful. 47 infections?? I hope you get answers soon!
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piratecat
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Post by piratecat on Aug 18, 2019 18:57:53 GMT -6
He did much better camping this weekend! I think the rechargeable light definitely helped a lot. As did the awesome playground at the campground for early mornings. Our friends and their kids are kind of a lot though so we are all very tired and very very glad to be home.
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piratecat
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Post by piratecat on Aug 18, 2019 19:05:18 GMT -6
We brought his balance bike and he rode it a couple of times to the playground so that was good. He is SUPER slow and SO cautious it’s ridiculous and hilarious. He is going 0.0000000001 mph and I told him if he keeps practicing he’ll be able to go faster and he told me that he had to get bigger first before he goes faster. 😂
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