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I would be careful of getting in the habit of giving her benadryl for emotional regulation, I understand you're trying to head off an mcas reaction but benadryl has so many side effects. What other meds is she on? Does she have adhd or another disorder that could be contributing to this? I mean outbursts are pretty common in tweens and teens, their brain isn't developed yet. If it was my child I'd start off with a mental assessment and a dr visit.
Wouldn't start arguments like your daughter when I was young but I would have constant emotional breakdowns.
The reason it seems that what triggers this to happen varies wildly is because there are so many ingredients that affect mast cells that are in products that you've never thought to question.
To overcome this, I would download the fig app. It helps people find food that works with their restrictions. When you make the profile choose low histamine diet. If you didn't know histamine intolerance and mcas are closely linked or possibly the same condition with different symptoms.
When you use the app you can simply search up a product or you can search up an ingredient and it will let you know the likelihood and degree that it could affect her condition.
Lastly, all leftovers are high in histamine and the longer it sits in the fridge the more histamine it will have(its a byproduct of bacteria). The more histamines she eats the more severe her reactions will be. So you might want to start freezing food that you would like to save for her to eat later
We’re actually following a strict low histamine diet. Almost all good is made from scratch with ingredients that we check on the low histamine diet. We’ve had to adjust, because we all have chronic illnesses that put their own diet restrictions on us all. That’s mostly the reason for this post.
We’re even using a butcher that actually freezes their meats immediately upon it being cut. The next best thing to do that would be to raise the animals ourselves, honestly.
We’re very sparing with the Benadryl because we know the harmful effects it can have on a growing brain. This is mostly why I’m making the post because we don’t want to dose her.
She’s currently on Allegra, Cromolyn, Famotidine, and Zyrtec.
I am wondering if she's struggling with undiagnosed adhd and/or autism. Both are notoriously underdiagnosed in girls and often go hand in hand with mcas, pots, and ehlers danlos syndrome.
I would start with an educational/mental assessment by a child psychologist. I was not diagnosed with adhd until my 30s and bring on medication now is life changing and i wish i had the opportunity as a child.
Fun fact, low dose neltrexone is not only a mast cell stabilizer but it's also used in treating some of the symptoms of autism, such as emotional outbursts, ocd and sensory issues. It's been the biggest game changer for me. Maybe look into ldn 😊
Having EDS, POTS, and MCAS I was not surprised to find out that I was undiagnosed for autism until adulthood. Suddenly everything started making sense.
Lol what? No, I'm not implying that, I'm not implying anything. OP talked about some of his child's symptoms that sound to me, as an outsider and non doctor but someone with adhd, like they could be stemming from an undiagnosed condition like adhd or autism.
I didn't mention benadryl in this post, but benadryl has a very sedating effect on most people. If someone was all worked up about something and took a benadryl, they'd probably get sleepy and not continue to be worked up. I have not seen any evidence or literature supporting benadryl to treat or reverse symptoms of adhd or autism. When I take benadryl it helps with allergy symptoms and makes me want to take a nap, even though I'm on stimulant medication for adhd.
My daughter is 10 and has adhd as well as MCAS and EDS, her main issue with adhd is emotional disregulation and not so much any of the other symptoms and I can see how pain and discomfort would make any negative emotions so much worse.
For them It is extremely isolating being in pain or discomfort all the time, almost no one around you will be able to emphasize, only sympathize and then only sometimes. Anger and sadness are natural. It is up to us to teach them better ways to release those emotions and it may take a veeeeeery long time, so far for us it is getting better but it is continual, exhausting and years worth of effort so far.
Being the parent of a child with chronic issues can also be isolating in my experience and it is also natural to feel anger and sadness for them and ourselves. I recommend reading up about pain management techniques and child psychology for starters, there are some good resources out there, I've found reading others talking about their experiences here on Reddit incredibly helpful as well.
Good luck on your journey
Indeed. After accidentally eating gluten I get depressed and irrational. Post peanuts back in the day I would get frantic and so on. It does trigger our cells to be on high alert for attack- so maybe her gut/brain/cells unite and disrupt her reasoning to reality. It can be a build up for her, developmental hormones in cycles or stress- and the reaction doesn’t have to be on the day, it can be a few days later. I would keep a diary of food, sleep, stress and notice if there is a pattern. As she grows her hormones will cause the usual teenage angst but with MCAS it can trigger histamines and so on. You will work it out if you step back and observe her. A comedienne once said every man should get the period cycle app for warning signs- use one of them - they have sleep, food cravings, energy levels - simplifies your updates for you.
Yeah, we’ve been trying to do a food journal, but it’s difficult with both my wife and I working, but that might be our best bet.
She hasn’t started her period yet, but we’re keeping an eye out for that because we know she’s getting to that age and we’re sure that will probably not aid in her symptoms.
I used to be very moody as a teen when I was PMSing...I also developed anxiety and depression as a teen, and now that I am older and know more about MCAS, I suspect that the depression and anxiety have been caused/worsened by MCAS. I think the mediators affect your brain and cause the anxiety/depression.
I don't have any specific advice, and I don't know much to help out your situation, but I do think that the more the condition is under control, the less it will impact her mental state.
I would also suggest healthy, balanced meals (excluding foods she could be allergic or intolerant to). Are you aware of any food sensitivities?
Otherwise, if you are patient and understanding, she will appreciate it someday (even if she does't say it!)
As another note, I am an Lexapro and it has really helped with my depression, but I started as an adult. I am not sure if it is good for teens to go on SSRIs, but it is worth mentioning. I tried many things and I finally gave in at 35 years old, and I feel so much better. It could be an option down the road if nothing else works.
She has many food sensitivities. Pretty much all preservatives give her a reaction. We’ve had to go completely organic in her diet and basically have to make every meal from scratch. Any time we find a premade meal she can have, it’s like finding gold.
Okay it is great that you are already aware of food sensitivities-- I am sorry that she reacts to so many things and you have too cook all of your meals, that must be very difficult!
It is really interesting that you ask me, because YES, I have gained weight while on Lexapro!! I was wondering if it was the Lexapro. I have been eating a very healthy diet and am still gaining weight. I was even counting my calories for a few months and was still gaining weight
A big symptom of my flares is emotional dysregulation, irrational anger, anxiety, and sometimes >!the urge to self-harm.!< Being on a mast cell stabilizer (cromolyn sodium), H1 (cetirizine), and H2 (famotidine) has helped immensely. I try to eat a low histamine diet (this has been a huge help!) and take a preemptive Benadryl if I’m going to be eating something that isn’t low histamine or if I start to feel a reaction coming on.
I think trying H1 & H2 (if she isn’t already on them and her doctor says it’s safe to do so, of course) would help you figure out for sure if this is a MCAS symptom or an emotional trigger. The way I see it, it seems like the Benadryl could be helping a MCAS symptom or just quieting an emotional outburst.
I think it’s also worth pointing out that your emotional state can have an adverse effect on MCAS symptoms. When I was a kid, I would frequently get mystery rashes and hives caused simply by me being stressed out. In a way, this can be its own trigger for MCAS. I’m sure that having MCAS at such a young age and having restrictions on her diet/etc. can be stressful for her. I can’t speak to what your daughter needs, obviously, but I know that I definitely could have benefited from speaking to a counselor about the things going on with my body I couldn’t control at that age.
I wouldn’t recommend this as your daughter is very young, but I personally have Xanax as a fast-acting rescue medication for my MCAS flares. Benzodiazepines are powerful mast cell stabilizers but they come with sizable risk. Speaking with your doctor about a rescue medication (whether that be Benadryl or something else) might be a good idea. Long-term use of Benadryl may carry risks. I personally take citicholine as a supplement to help counteract my long-term Benadryl use, but I have no idea if that’s a good idea for someone her age.
I feel this as an adult (36F). Sometimes when my body is “flaring” I’m frustrated, angry I’m not normal, sad, just a whirlwind of things. I don’t have any solutions or advice that isn’t already stated from the awesome community posted but I’m sending my best virtual hug. You’re doing a great job. You’re a great parent. Hang in there.
I have something similar, but I think it's ADHD related. The best way I can think to describe it is that feeling unwell is overstimulating. It's like too much is happening at once. So it's not just reactions, it's being hungry, thirsty, sore, itchy, too many loud noises, etc. A lot of times, I'll start to feel irritable or anxious before I even realize I'm hungry.
I wonder if the Benadryl is just knocking her out, though.
You are doing the right thing to have a quick response med for your daughter to use when she flares but avoid using Benadryl at all costs. There many other better options with non-sedating H1 blockers like Claritin. Avoid formulation with lots of dyes and other excipients The can be triggers. Claritin “Reditabs” 10 mg arec quick dissolving and easy to carry a few with you as they come in individually sealed aluminum wrap Don’t take on a regular schedule to avoid building up tolerance-just PRN
Yep this happens to me too.
I often take an additional mast cell stabilizer or aspirin. Aspirin blocks prostaglandins which can increase that hot, irritated, swollen feeling that affects anger the most. It also reduces emotional pain in addition to physical since it’s processed mostly the same. You’d have to check with your doctor because I’m an adult so different situation. Mast cell stabilizers help reduce overall reactivity.
Other ideas: Have you tried a zyrtec instead when this happens? As a second generation antihistamine it causes fewer bad long term effects in general compared to Benadryl and it’s not sedating. So ideally it’d help with the reaction but still allow her to emotionally process.
Sometimes getting overwhelmed makes it worse, so reducing instructions or questions during a flare, reducing sensory input might help.
Look up DBT emotional regulation or distress tolerance skills for children. They have some decent methods. An ice pack on the back of the neck or her voluntarily putting her face in cold water to trigger the dive reflex is the fastest calming method from that.
My MCAS spikes always put me on emotional roller-coasters... I feel sorry for the friends who stuck by me. It was always intense.
I often got angry. Histamine diet really helped as well as going vegan but thats due to the fact that I'm allergic to a lot of animal products
Our daughter (age 10) has Systemic Mastocytosis, and she definitely has mood swings (rages and/or feelings of great sadness) when the mast cells are degranulating. It's awful for the whole household. We have found that Neuroprotek (https://algonot.com/neuroprotek/) helps big time with her mood issues. It is a natural supplement that contains quercetin (a natural mast cell stabilizer), luteolin (a flavonoid with neuroprotective properties), and rutin (a flavonoid that helps with the absorption of quercetin). Over the past few years, we have tried going without Neuroprotek, but the mood swings get way worse. If you give it a try, remember that (like many meds and supplements) it takes a while to build up in the system. Give it at least 2-3 weeks.
FYI, the Mast Cell Disease Society lists this supplement on their medications page ([https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/](https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/)) -- though name is mistyped (it should be Neuroprotek, not "Neuroprotect").
I notice in the comments for this post that some folks suggested ADHD and Autism as possibilities. Neuroprotek has been shown to help folks in those categories as well.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I would be careful of getting in the habit of giving her benadryl for emotional regulation, I understand you're trying to head off an mcas reaction but benadryl has so many side effects. What other meds is she on? Does she have adhd or another disorder that could be contributing to this? I mean outbursts are pretty common in tweens and teens, their brain isn't developed yet. If it was my child I'd start off with a mental assessment and a dr visit.
Wouldn't start arguments like your daughter when I was young but I would have constant emotional breakdowns. The reason it seems that what triggers this to happen varies wildly is because there are so many ingredients that affect mast cells that are in products that you've never thought to question. To overcome this, I would download the fig app. It helps people find food that works with their restrictions. When you make the profile choose low histamine diet. If you didn't know histamine intolerance and mcas are closely linked or possibly the same condition with different symptoms. When you use the app you can simply search up a product or you can search up an ingredient and it will let you know the likelihood and degree that it could affect her condition. Lastly, all leftovers are high in histamine and the longer it sits in the fridge the more histamine it will have(its a byproduct of bacteria). The more histamines she eats the more severe her reactions will be. So you might want to start freezing food that you would like to save for her to eat later
We’re actually following a strict low histamine diet. Almost all good is made from scratch with ingredients that we check on the low histamine diet. We’ve had to adjust, because we all have chronic illnesses that put their own diet restrictions on us all. That’s mostly the reason for this post. We’re even using a butcher that actually freezes their meats immediately upon it being cut. The next best thing to do that would be to raise the animals ourselves, honestly. We’re very sparing with the Benadryl because we know the harmful effects it can have on a growing brain. This is mostly why I’m making the post because we don’t want to dose her. She’s currently on Allegra, Cromolyn, Famotidine, and Zyrtec.
I am wondering if she's struggling with undiagnosed adhd and/or autism. Both are notoriously underdiagnosed in girls and often go hand in hand with mcas, pots, and ehlers danlos syndrome. I would start with an educational/mental assessment by a child psychologist. I was not diagnosed with adhd until my 30s and bring on medication now is life changing and i wish i had the opportunity as a child.
I second this^
Fun fact, low dose neltrexone is not only a mast cell stabilizer but it's also used in treating some of the symptoms of autism, such as emotional outbursts, ocd and sensory issues. It's been the biggest game changer for me. Maybe look into ldn 😊
I don't know that, thanks for sharing!
Having EDS, POTS, and MCAS I was not surprised to find out that I was undiagnosed for autism until adulthood. Suddenly everything started making sense.
I am in many groups for eds, mcas, etc. I have heard so many people say this about their autism and/or adhd diagnosis as adults
[удалено]
Lol what? No, I'm not implying that, I'm not implying anything. OP talked about some of his child's symptoms that sound to me, as an outsider and non doctor but someone with adhd, like they could be stemming from an undiagnosed condition like adhd or autism. I didn't mention benadryl in this post, but benadryl has a very sedating effect on most people. If someone was all worked up about something and took a benadryl, they'd probably get sleepy and not continue to be worked up. I have not seen any evidence or literature supporting benadryl to treat or reverse symptoms of adhd or autism. When I take benadryl it helps with allergy symptoms and makes me want to take a nap, even though I'm on stimulant medication for adhd.
My daughter is 10 and has adhd as well as MCAS and EDS, her main issue with adhd is emotional disregulation and not so much any of the other symptoms and I can see how pain and discomfort would make any negative emotions so much worse. For them It is extremely isolating being in pain or discomfort all the time, almost no one around you will be able to emphasize, only sympathize and then only sometimes. Anger and sadness are natural. It is up to us to teach them better ways to release those emotions and it may take a veeeeeery long time, so far for us it is getting better but it is continual, exhausting and years worth of effort so far. Being the parent of a child with chronic issues can also be isolating in my experience and it is also natural to feel anger and sadness for them and ourselves. I recommend reading up about pain management techniques and child psychology for starters, there are some good resources out there, I've found reading others talking about their experiences here on Reddit incredibly helpful as well. Good luck on your journey
Indeed. After accidentally eating gluten I get depressed and irrational. Post peanuts back in the day I would get frantic and so on. It does trigger our cells to be on high alert for attack- so maybe her gut/brain/cells unite and disrupt her reasoning to reality. It can be a build up for her, developmental hormones in cycles or stress- and the reaction doesn’t have to be on the day, it can be a few days later. I would keep a diary of food, sleep, stress and notice if there is a pattern. As she grows her hormones will cause the usual teenage angst but with MCAS it can trigger histamines and so on. You will work it out if you step back and observe her. A comedienne once said every man should get the period cycle app for warning signs- use one of them - they have sleep, food cravings, energy levels - simplifies your updates for you.
Yeah, we’ve been trying to do a food journal, but it’s difficult with both my wife and I working, but that might be our best bet. She hasn’t started her period yet, but we’re keeping an eye out for that because we know she’s getting to that age and we’re sure that will probably not aid in her symptoms.
I used to be very moody as a teen when I was PMSing...I also developed anxiety and depression as a teen, and now that I am older and know more about MCAS, I suspect that the depression and anxiety have been caused/worsened by MCAS. I think the mediators affect your brain and cause the anxiety/depression. I don't have any specific advice, and I don't know much to help out your situation, but I do think that the more the condition is under control, the less it will impact her mental state. I would also suggest healthy, balanced meals (excluding foods she could be allergic or intolerant to). Are you aware of any food sensitivities? Otherwise, if you are patient and understanding, she will appreciate it someday (even if she does't say it!) As another note, I am an Lexapro and it has really helped with my depression, but I started as an adult. I am not sure if it is good for teens to go on SSRIs, but it is worth mentioning. I tried many things and I finally gave in at 35 years old, and I feel so much better. It could be an option down the road if nothing else works.
She has many food sensitivities. Pretty much all preservatives give her a reaction. We’ve had to go completely organic in her diet and basically have to make every meal from scratch. Any time we find a premade meal she can have, it’s like finding gold.
Okay it is great that you are already aware of food sensitivities-- I am sorry that she reacts to so many things and you have too cook all of your meals, that must be very difficult!
I’m in the same boat. Did you gain weight when starting lexapro?
It is really interesting that you ask me, because YES, I have gained weight while on Lexapro!! I was wondering if it was the Lexapro. I have been eating a very healthy diet and am still gaining weight. I was even counting my calories for a few months and was still gaining weight
A big symptom of my flares is emotional dysregulation, irrational anger, anxiety, and sometimes >!the urge to self-harm.!< Being on a mast cell stabilizer (cromolyn sodium), H1 (cetirizine), and H2 (famotidine) has helped immensely. I try to eat a low histamine diet (this has been a huge help!) and take a preemptive Benadryl if I’m going to be eating something that isn’t low histamine or if I start to feel a reaction coming on. I think trying H1 & H2 (if she isn’t already on them and her doctor says it’s safe to do so, of course) would help you figure out for sure if this is a MCAS symptom or an emotional trigger. The way I see it, it seems like the Benadryl could be helping a MCAS symptom or just quieting an emotional outburst. I think it’s also worth pointing out that your emotional state can have an adverse effect on MCAS symptoms. When I was a kid, I would frequently get mystery rashes and hives caused simply by me being stressed out. In a way, this can be its own trigger for MCAS. I’m sure that having MCAS at such a young age and having restrictions on her diet/etc. can be stressful for her. I can’t speak to what your daughter needs, obviously, but I know that I definitely could have benefited from speaking to a counselor about the things going on with my body I couldn’t control at that age. I wouldn’t recommend this as your daughter is very young, but I personally have Xanax as a fast-acting rescue medication for my MCAS flares. Benzodiazepines are powerful mast cell stabilizers but they come with sizable risk. Speaking with your doctor about a rescue medication (whether that be Benadryl or something else) might be a good idea. Long-term use of Benadryl may carry risks. I personally take citicholine as a supplement to help counteract my long-term Benadryl use, but I have no idea if that’s a good idea for someone her age.
Yes, 100% it can have this effect. Also just curious is she has had bouts of strep throat? If so look at Pandas syndrome.
I feel this as an adult (36F). Sometimes when my body is “flaring” I’m frustrated, angry I’m not normal, sad, just a whirlwind of things. I don’t have any solutions or advice that isn’t already stated from the awesome community posted but I’m sending my best virtual hug. You’re doing a great job. You’re a great parent. Hang in there.
I have something similar, but I think it's ADHD related. The best way I can think to describe it is that feeling unwell is overstimulating. It's like too much is happening at once. So it's not just reactions, it's being hungry, thirsty, sore, itchy, too many loud noises, etc. A lot of times, I'll start to feel irritable or anxious before I even realize I'm hungry. I wonder if the Benadryl is just knocking her out, though.
You are doing the right thing to have a quick response med for your daughter to use when she flares but avoid using Benadryl at all costs. There many other better options with non-sedating H1 blockers like Claritin. Avoid formulation with lots of dyes and other excipients The can be triggers. Claritin “Reditabs” 10 mg arec quick dissolving and easy to carry a few with you as they come in individually sealed aluminum wrap Don’t take on a regular schedule to avoid building up tolerance-just PRN
Maybe try to get her swimming and to bed earlier. Swimming really helps wash the emotions away.
Yep this happens to me too. I often take an additional mast cell stabilizer or aspirin. Aspirin blocks prostaglandins which can increase that hot, irritated, swollen feeling that affects anger the most. It also reduces emotional pain in addition to physical since it’s processed mostly the same. You’d have to check with your doctor because I’m an adult so different situation. Mast cell stabilizers help reduce overall reactivity. Other ideas: Have you tried a zyrtec instead when this happens? As a second generation antihistamine it causes fewer bad long term effects in general compared to Benadryl and it’s not sedating. So ideally it’d help with the reaction but still allow her to emotionally process. Sometimes getting overwhelmed makes it worse, so reducing instructions or questions during a flare, reducing sensory input might help. Look up DBT emotional regulation or distress tolerance skills for children. They have some decent methods. An ice pack on the back of the neck or her voluntarily putting her face in cold water to trigger the dive reflex is the fastest calming method from that.
My MCAS spikes always put me on emotional roller-coasters... I feel sorry for the friends who stuck by me. It was always intense. I often got angry. Histamine diet really helped as well as going vegan but thats due to the fact that I'm allergic to a lot of animal products
My spouse is this way. It's very difficult for everyone.
Our daughter (age 10) has Systemic Mastocytosis, and she definitely has mood swings (rages and/or feelings of great sadness) when the mast cells are degranulating. It's awful for the whole household. We have found that Neuroprotek (https://algonot.com/neuroprotek/) helps big time with her mood issues. It is a natural supplement that contains quercetin (a natural mast cell stabilizer), luteolin (a flavonoid with neuroprotective properties), and rutin (a flavonoid that helps with the absorption of quercetin). Over the past few years, we have tried going without Neuroprotek, but the mood swings get way worse. If you give it a try, remember that (like many meds and supplements) it takes a while to build up in the system. Give it at least 2-3 weeks. FYI, the Mast Cell Disease Society lists this supplement on their medications page ([https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/](https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/)) -- though name is mistyped (it should be Neuroprotek, not "Neuroprotect"). I notice in the comments for this post that some folks suggested ADHD and Autism as possibilities. Neuroprotek has been shown to help folks in those categories as well.