anyone with kids suffering from migraines? - Mothering Forums

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Old 06-24-2008, 01:13 AM - Thread Starter
 
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Looking to banter, gripe, complain, whine, support and bounce ideas around. This summer is hitting us hard and we're still identifying triggers. This might not even be the right place but I think you all are lovely and we've been here before (DD1 cleft lip/gumline, congenital neurologic strabismus, mild SPD and migraines).
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Old 06-24-2008, 01:17 AM
 
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The kids don't, but I do. Stress is the biggest trigger for me, and related, lack of sleep causes me to get them.

I rarely take anything (unless they get unbearable for more than a few hours). I do have a pill I got from Whole Foods calls Calms Forte that works wonders, though. I usually go into a dark room and try to lie down with white noise. That seems to work fairly well. I also take anything out of my hair if it's up because the extra pressure makes the headache worse.

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Old 06-24-2008, 02:54 AM
 
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DH, our oldest son and I do. It is NOT fun at all. I know that for DH and I stress and more than a few days with overwork and lack of sleep will guarantee a migraine. DS and I are both VERY sensitive to clear sodas, sprite, 7up and the like, we will both get immediate migraines with the potential to vomit within minutes, so that makes going to parties and the like a veritable riot when the only soda left is invariably a clear one!
I hope that you can soon identify the triggers for your ds's migraines, I have been suffering from constant headache since November of 2006, the spinal headache that was excruciating for 5 months has now become a part of the family, always there.
Please post if you find anything that you find helps with the pain, we are always looking for remedies here!
I know that for DH pulsatilla (homeopathic remedy) is the answer, he will take it and sleep for an short time and wake up immensely better, no such luck yet for me !
laura

laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

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Old 06-24-2008, 04:01 AM
 
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I'm hoping my children do not have migraines but I do, my sister does, both of my parents did, and all of my mother's sisters have migraines.

At what age did your children begin having migraines? Lately my daughter will complain of pain in her right eye or 'buzzing' in her right eye. I was afraid it was seizure related, then convinced myself it was nothing. It's crossed my mind it could be a migraine but her complaint is short lived so I figured it couldn't be a migraine.

I hope you find your daughter's triggers quickly. My only known food trigger is fresh garlic - although the neurologist argued that couldn't be a trigger. Triggers for me are: scents, lack of sleep, stress, alcohol, bright lights and I think barometric pressure since my sister and I so often have headaches on the same days. For me the best prevention was acupuncture - I had almost no migraines the years I was TTC and seeing an acupuncturist. (and normally I have a lot of headaches)
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Old 06-24-2008, 11:49 AM - Thread Starter
 
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Thanks for the responses. DD started getting shortly after she turned 5, but it took us awhile to diagnose them. It started with 18-24 hour fits of headache and vomiting that happened about 2x/week. They still happen weekly, but we have figured out many of her triggers; dehydration, over heated, stress, lack of sleep and we're focusing now on possible blood sugar issues. We've found no food allergies, but she is food sensitive. This summer has been pretty bad with almost daily headaches, most of the time we can manage them but not always. I'm frustrated because she's afraid to play outside for fear it will give her a migraine, and she hasn't really been able to enjoy so many activities bcause she'll get one in the middle of it. I really want to get them under control or else she'll be taking triptans to school next year.
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Old 06-24-2008, 12:16 PM
 
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I get them - hope my kids never do! I have light sensitivity, blind spots, and vomiting when I get them - and most pain control is useless because I will just throw it up before it can kick in. I have found a large dose (800mg) of liquid motrin is one thing that helps if I take it early enough - since it's liquid it kicks in faster and usually kicks in before I can throw it up. (luckily motrin doesn't upset my stomach! it makes my son barf so I don't know what we'll do if he ever gets them)

I don't know what my triggers are but I know migraines suck. I hope you can figure out triggers, if there are any, so you can maybe avoid them - and a treatment if that fails.

DS T 11/16/03 DDs K & E 3/28/08
nak DS S 4/1/11
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Old 06-24-2008, 05:51 PM
 
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i suffer with them but not until my back injury when my back is bad i am crippled with my back and mirgrine so much so i ahve morphine at home. Can your child tell you about smells or anything?? i know when i am getting one i can smell either toast or fags.
the main trigger wth me is my back stress and dehydration.

I hope you can find and eliminate the trigger soon

K xxx
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Old 06-27-2008, 02:48 AM
 
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My DS gets them, and it took us forever to dx because no one else in the family (stretching out and back) gets them. I had one just once about 10 years ago that was a bad reaction to a medication, so I know what it feels like, but it's not like we had any reason to suspect that migraines were the cause of DS's episodes (as we called them before we knew to say migraine).

For DS, the trigger is absolutely stress and anxiety and it's a nightmare. He has anxiety disorders anyway, so it's not like we can keep him forever calm! Having an asthma flare also kicks off a series of migraines, though we don't know if it's the asthma itself, or the anxiety caused by the asthma causing the migraines (though we suspect the anxiety connection). As far as I can tell, he doesn't have any food triggers. His environmental allergies are severe, so that's probably a piece of the puzzle, but we can't protect/treat/medicate him any more thoroughly than we already are for that. Oh, and being overheated seems to be a problem, which is a hard thing to avoid when we need to go somewhere on a 98 degree day, or he's begging to go out and ride his bike. I can't keep the kid in 100% of the time even if in some ways it might be better for him, KWIM? I have to take care of his mental and emotional health as well as his physical health.

Of all the things we struggle with re: Carter's health, I think the migraines are almost the worst in the moment that they're happening (the exception being a 911-worthy asthma episode). No matter how hyper, sensitive, angry, covered in hives, anxious, swollen from allergies, or whatever, it can't compare to driving toward home with Carter in the backseat, head in a bowl (we have to keep one in the car, it happens so often), screaming his face off. He had one on Monday night that lasted 9 hours (they're usually over in 2-4 hours), during which he threw up 6 times.

The cherry on this sundae is, he's already FTT, and too often he spends the afternoon or evening puking his guts out.

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Old 06-27-2008, 08:18 AM
 
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My DD started getting migraines when she was 12, she is now almost 16 and has not had one for over a year. She said it started with a twitch in the eye, then silver flashing on her peripheral vision then just blackness. She would vomit for several hours and then sleep for about 12.
She was prescribed medication but it stopped her vomiting and she just felt sick sick sick and was unable to sleep, so she stopped taking it.
At the time I thought it was stress/sleep triggered.
We don't know why she hasn't had on in a while because she has still had some of the same, if not more stress ( high school entrance exams etc).

No one else in the family, mine or my DH's gets them.
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Old 06-30-2008, 04:12 PM
 
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Sunset - I wonder if your dd's were triggered by the onset of puberty/hormonal issues.

I get them - monthly, right before I start my period. They SUCK, and with me they tend to last for days. They will usually hit suddenly and I can tell I'm going to get one because the hearing in my right ear will suddenly get VERY sensitive and then all the sudden it feels like there's a nail stabbing into that side of my head. Other side is fine. I've been taking Maxalt at the onset and it seems to dull them, but doesn't kill it completely. I can sometimes get away with 800mg of motrin if I take it immediatly. Again, doesn't kill it, but will dull it to the edge of tolerable.

I often wonder if my dd (age 3) will get them, since she has been dx'ed with complex partial epilepsy and has the white spots on her MRI that can sometimes be indicative of migraines. She's had a few episodes where she's been screaming and just generally unwell and unable to look into the light; like she was keeping her head buried in the pillow or in my lap.
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Old 06-30-2008, 05:05 PM
 
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Old 07-01-2008, 01:47 AM - Thread Starter
 
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Neither DH nor I get migraines, but my mother, grandfather, brother and sister (monthly) get them. We didn't even consider migraines until a family friend (a neurologist) heard about it and got DD an appt. with a local Neuro. It was difficult because migraines are a diagnosis of elimination and she went through the ringer going from specialist to specialist trying to figure it out. I remember posting here on this forum when it all started and we were even more lost/confused/worried. I got lots of wonderful support and advice, thanks!

Oh the bowls! When DD started getting her 'episodes' (yup, we called them that too!) we lived with bowls all around us. At that time she didn't know any of the signals telling her she was getting a 'migraine' so it would just seem to come along suddenly. She would all of a sudden be in agony over a pain in her head, then as soon as she moved she'd just start vomiting, and it wouldn't stop. Our youngest was 1 at the time and it was so common that anytime we brought out a mixing bowl, say to make muffins, she would lean into it and pretend to vomit. Because you know, that's what bowls are for. DD threw up into many a starbucks coffee cup while in the car because I couldn't pull over in time until I learned to keep a tupperware container (with lid) under the seat.

DD has been prescribed Triptans, which we've tried, which help. But I am so reluctant to use them. Regular pain relievers do not work, and are even discouraged but that's moot. We can mostly manage them now, that is we can keep it a dull ache (between 1 and 2 on a 0-5 scale, that's what we call managing them ). It is no way for a child to live seeing as she's had one all but 1 day of this month. Even with the "management" it stops her from doing many things. Her neuro has been suggesting daily preventative anti-seizure meds. which we are avoiding. We don't feel as if we've done our full due diligence yet. I want to ger her into an endo and a dietitian, the only specialists she hasn't seen yet.

Her full list of triggers if it helps anyone else (and I'm typing it up for a neuro appt weds):
lack of sleep
dehydration
over heating
anxiety
sugar substitutes
changes in light (going from inside school to a wonderful sunny _bright_ spring day can bring one on almost immediately)
allergy triggers (she has bad allergies, to what no one knows, slight maple pollen - back to the allergist tomorrow)
and we're thinking blood sugar issues, tho her fasting levels are normal

Her headaches almost always come in the early afternoon or evening. If we don't catch it in a timely fashion it will lead to 18-24 hours of hiding in a dark room, trying to sleep and trying to not to throw up. Her pain always starts over her right eye and may or may not spread over to the top of her left. She cries for an eye patch because the light hurts her right eye too much. Sometimes she gets a pain in the side of her neck so bad that she can't turn her head. That pain can linger for days. (And was a huge concern for Dr's when she first started getting them.)

She is also seeing a child psychologist who works out of the neuro and burn units at our local children's hospital. This specialist deals with pain management and stress management, helping DD to recognize both anxiety and pain, advocate for herself and manage both. FWIW we have had some success in her office on numerous occasions (which is what led us to seek individual counseling with her) with breathing exercises. If anyone is interested you might want to check out the RESPERATE and see if any of your docs have one on hand they'd let you borrow/try. It's designed to lower blood pressure through breath rate and has helped her ease her migraines on her own. We haven't done a thorough eval on it yet, and I imaging it will only work with those stress induced migraines but we're going to give it a shot. Hey, I could learn some more relaxation techniques.

I'm sorry others of you are dealing with this too. It can be debilitating, and sometimes I still question the migraine diagnosis because it just seems to be too much, yk? I feel like I'm at my limit with it. I am not willing to accept that there is nothing more to help her, that we will never know what all her triggers are and we just need to focus on helping her manage them, that's simply unacceptable. I will not have her live on triptans for days to maintain a level '2' headache and stop it from progressing further. OK, rant over... DD has on her own (with normal parental education on health and diet from mom and dad) decided that she wants to cut out all processed and refined sugars from her diet to see if that will help. You know it's bad when the kid says to you "Maybe I shouldn't eat any kind of treat at all mom, maybe that would help. Let's try that for awhile.", especially when we're already health and nutrition conscious.
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Old 07-01-2008, 02:19 PM
 
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I've opened this thread about 3 times already and just couldn't find a way to respond.

I've had them since I was a little girl, about 6. My dd gets them, also, and has since she was about 2.


Chiropractic and excedrin are the only things that work. The excedrin also leaves me jittery, though, and I can't say I recommend it for a child. I give dd an extra strength tylenol or 2 advil.

IT leaves me exhausted later and completely worn out.

It sucks.

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Old 07-02-2008, 12:54 AM
 
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I wanted to share our experience, just because it was a little different than those already posted.
My DD started having severe headaches, (at age 8)and I am grateful that our practioner is not one to just whip out a Rx pad. Instead she was thoroughly tested, and when they did bloodwork, it turned out that she was hypothyroid and needed to be on Synthroid. We now see a ped. endocrinologist, and after much tweaking, she is on the right dose, and no longer has the headaches.
Not saying that is necessarily what is going on for you, just wanted to throw it out there, let you know that sometimes it is good to check into things. Some docs would have just written a script for her, and it might have been years before she was dx.

I had migraines in high school - stress related - and again, my ped was awesome, checked me out, had a neuro check me, etc, when he was sure it was migraines, he sent me for biofeedback therapy, and I haven't had them since. (The biofeedback helped with natural childbirth too! ) I have always been grateful that he didn't just hand me a script for Imitrex; I'm sure I would still be on it.

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Old 07-02-2008, 01:47 AM
 
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I get them, and they started when I was 8yo. I used to say "All roads lead to a migraine." Mine are/were triggered by foods, windy days, rainy days, dry hot days, blinking lights, stress, sinus headaches, over heating (weather and hot baths), cycles, perfumes, cleaning products, cigarette smoke and wood smoke......

They are less now because I've removed the food triggers from my diet and stay away from the chemicals. I've used ice packs to reduce them. I'd recommend a bag of frozen peas or green beans but sometimes, the vegetable smell too strongly and makes my head hurt more. If smells are strong with the mild SPD, I'd stick to ice packs.

I'm so sorry that your child has to go through them.
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Old 07-02-2008, 10:59 PM
 
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I got my first migraine at age 8 and am now 45. My list of known triggers is too long to list and none of the meds I take are appropriate for children. But, one of my sons (age 11) gets them clearly triggered by heat, dehydration, and certain food colors (he figured that out from selectively eating M&Ms until he knew which colors he couldn't eat). So far, he can recover from them with ibuprofen (which does nothing for me), fluids, and rest in air conditioning. When I was a kid mine were much worse then his (vomiting and one sided partial paralysis) and I just had to wait till it passed.

I've been told that some kids grow out of them and have my fingers crossed for him since his seem to be mild and easy to anticipate. I also keep him away from the most common "food" triggers like MSG, artificial colors, and nutrisweet.

Hope that helps! Life with migraines is really horrible.

Xaloxe: have you thought about an eval with an OT who works with SPD/SID? I have another son with SPD who has headaches (wouldn't call them migraines) and vomiting (which was diagnosed at one point as "abdominal migraine") that have been helped a great deal by OT after he was properly diagnosed. The OT helped greatly reduce his anxiety which in turn helped his many sensitivities to sound, light, and smell, which in turn greatly reduced his headaches. Having SPD myself, I strongly suspect there is a connection between SPD/SID and migraine.

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Old 07-03-2008, 12:04 AM - Thread Starter
 
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Thanks so much everyone for your stories, sympathies and advice. I'm sad there are others out there dealing with it themselves, or with their children, but it is really helpful hearing other people's experiences.

The anxiety issue is pretty big trigger in our DD. Though she is a very happy, easy going child she is a perfectionist and holds herself to some very high standards. She is also very empathetic and can easily take on other people's emotions. She has an intense fear of not being liked by people who are in any kind of authority position over her, including her dad and I. We are working on all of that with her child psych and while that is going well, she is still learning the tools to manage her anxiety.

A number of people mentioned her SPD. For her it is oral textures (food aversions), smells and I'll unofficially add light to that because it can be an instant migraine trigger. She also has texture aversions, but not very strong and they have decreased with age. With the texture it's difficult to tell because she has allergies to different fabrics (wool, poly blends), lots of detergents/perfumes etc. so there is kind of a combined whammy there. We're thinking she may have an intense reaction to coffee as Nature's gate organic lotion gave her an actual chemical burn. (The only suspect ingredient was coffee after confirmation of the lotion, but we haven't taped a bean to her yet because her reaction almost put her in the hospital, Crazy.)

Typing that all makes me note that while I don't get migraines, I will get an immediate headache at a movie, show, elevator where I am close to someone who swam in perfume. I also have allergic reactions to detergents/lotions etc. but not as bad as hers. I'm not sure what an OT could do to help her though which is why we haven't gone that route for her SPD considering much of it is combined with an allergic reaction. The food issues FWIW seems to be genetic because I have the same gag reflex she does (and GI issues have been ruled out for her as well, resulting in the same diagnosis of 'intestinal migraines' - go back to her neuro for that). Anyone have any thoughts on the OT?

Like I said earlier she was put through the ringer when this all first started. No one suspected migraines. They started with meningitis, diabetes, immune system issues etc. and ran a battery of tests repeatedly. The first Dr. she saw was an infectious disease specialist because of her vaccine status (selective, delayed and modified) and we were pretty much laughed out his office the poor guy. She's done a full GI workup, MRI, cat-scans, evals by Opth's, ENT's, Neuro's etc., etc., etc.... We're left with the only other option based on elimination; migraines. It's odd but part of me wanted someone to find something that already had a name that they could pinpoint to an exact cause, it felt like it might have been easier.

She went to the neuro today and we had a long 1.5 talking in there, reviewing her history, her current symptoms. She's a text book case of Chronic Migraine. She's had 1 day the entire month of June w/o a headache. She runs on them now and Triptans don't work as well (they just hold off the knock her on her ass migraine and maintain a moderate 'headache'). We've been given three options by the neuro: daily presc. strength antihistamines (SE's: sleepiness and weight gain), anti-seizure meds (SE's: sleepiness and jitters), anti-depressants (SE's: sleepiness and thoughts of suicide in depressed people). We're sitting on an unfilled script for the antihistamines.

I mentioned in an earlier post that she was seeing a psych through the neuro clinic who is helping with the anxiety and pain management through biofeedback. We actually bought DD the RESPERATE (http://www.resperate.com/) through our HSA and it came in today. It has helped her in the office with the psych so we are going to give that a try and focus right now living a more structured and routine life. We need to get her out of the chronic migraine loop, and I feel a sense of urgency about it. DH and I need to sit down and have a long talk about either 1) trying it on our own with lots of scheduled relaxation, 5 square meals a day and 11 hours of sleep or 2) try to kick it with the script. Neuro knows where we stand on this, but I feel like we have a short window to try it our way because she needs to kick it and enjoy the summer a bit. Either way it has to be kicked before school starts in late Aug.

Grrrr... I hate migraines.

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Old 07-03-2008, 12:33 AM
 
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I would highly recommend looking into having an SIPT done by an OT. My son's vomiting was not nearly as debilitating as your daughter's migraines but landed him in hospital 5 times in 18 months and his anxiety was causing many delays (that is the short version). We went through what looks much the same work up (metabolism, G.I., neuro., etc.). Just lots of diagnoses of exclusion. We were recommended many of the same meds you list. We refused all but the antihistamines and zofran. We were actually hoping for the weight gain since his food aversions have left him too thin. He has had no side effects and it did help the vomiting episodes somewhat. However, OT has made the antihistimines unnecessary and he is off them now.

From the SIPT we learned my son had a serious auditory processing problem which we would frankly have no way of knowing since it doesn't present as what one thinks of as a hearing problem. It can manifest as sensitivities to sound, smell, motion, anxiety. Long long story short we decided to start with Tomatis auditory therapy which when you read about it sounds pretty odd but it reduced his anxiety a huge amount as well as having greatly reduced his sensitivities. He currently has a sensory diet (skin brushing, yoga) and OT sessions where he works on gross motor issues that help him to orient, strengthen, and balance himself and therefore be less sensitive to sound and motion. Sadly taste and smell are, I'm told, the hardest sensitivities to help - I'm still learning about this.

Hope that is some help. I am relatively new at the world of SPD/SID and there is much to learn. His developmental ped thought I was looney for suggesting the SIPT and his neuro thought I was brilliant saying she couldn't believe she hadn't considered it. Same high profile children's hospital. Go figure.

Good luck! Your daughter must be so miserable! I am so sorry.

ETA: My son also has strabismus for which he had four unsuccessful surgeries by 14 months. We have also been told that if he were female some of his G.I. symptoms might have presented as head migraine - this diagnosis of "cyclical vomiting" he was given apparently carries migraine more frequently in girls.

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Old 07-03-2008, 11:27 AM
 
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My 5 year old DD has migraines. They were diagnosed when she was barely 4 and I know she'd been having them for at least a few months. Before we found a medication that helps prevent them she would have them many times a week. They are especially bad in the fall and spring. Noise seems to be a trigger but honestly, I've not been able to pinpoint anything specific that brings them on other than dehydration.

To complicate her situation, she also has numerous neurological diagnoses including brain malformations and dual shunted hydrocephalus. Anytime she had a headache we worried that she was in shunt failure. That was a scary way to live. What worries me now is that we'll just assume a headache means a migraine. Shunt failure could kill her and headache is one of the symptoms (her shunt failure symptoms have been atypical before). So still a scary situation.

For her, she rests in a quiet, dark room with a fan on when she gets one. She takes amitriptyline (an antidepressant) to prevent them and Nasonex for her allergies. I think both help. I fought the meds for over a year after trying Topomax (an anti-convulsant), which gave her tons of negative side effects. Once she started having them every day again last year (to the point that she couldn't participate in any enjoyable activities) we decided to try a new med (the amitriptyline). It's been great! She's been having breakthrough headaches quite a bit lately so I think we'll need to increase her dose. For her, the meds have also helped with some of her behavioral problems (related to her neurological diagnoses) so that's been an added blessing.
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