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gagging, trouble eating

 
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anita-kg



Joined: 04 Jan 2009
Posts: 7
Location: The Pas MB Canada

PostPosted: Sun Jan 04, 2009 3:46 pm    Post subject: gagging, trouble eating Reply with quote

Hello,
I'm new to this forum. My name is Anita and have a 13 yr. old son named Jesse. Whom has started gagging alot, and does not want to eat, he is losing weight, he'll go a few days not wanting to eat and gags at the thought of it, but does not just gag at meal times but threw out the day. then he'll have a couple of good days. I'm getting worried and wonder if any one else has had this happen to their Angel. I live in a remote town, and do not know any other Angels and the doctors have never heard of it. What can I do ? and what is causing it ?
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Mum2Philip
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PostPosted: Mon Jan 05, 2009 12:03 am    Post subject: gagging Reply with quote

We have no experience of gagging, but have you considered it not being anything to do with food?

Has there been any changes recently in his life? e.g.different classroom,
Also I do know of one child who gagged at smell of bleach.
Rosemary
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Magster's Mom
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PostPosted: Mon Jan 05, 2009 2:00 am    Post subject: gagging Reply with quote

Hi Anita,

Our Maggie does not gag but its a fairly common problem in our kids with AS. However, Maggie often refuses to eat and has a g-tube because of severe failure to thrive and malnourishment from refusing to eat and eating a very restricted diet.

There are several things we've found that contribute to Maggie's refusal to eat that might be worth investigating since I think there is overlap with the kids who gag. The first is her central nervous system and seizure threshold. Isaac is at an age where he could be starting early puberty and that is a very common time for seizures to worsen or re-emerge. With Maggie and with many other kids we know, there is a strong connection between the nervous system in the gut and appetite, reflux, vomiting, and more. So it might not seem related, but it might be worth getting an EEG to see if Isaac's possibly having seizure acivity or if his brain activity has just become much more abnormal as a result of puberty. A number of our kids have cyclic vomiting syndrome and some have migraines (like Maggie) and both of these are CNS problems that can have a huge effect on the digestive tract with symptoms like gagging.

With Maggie, she was considered anorexic for years due to her refusal to eat. She didn't develop a healthy-ish appetite until she went on the ketogenic diet for seizure control. Its ironic because the ketogenic diet is easy for a child who doesn't eat much by mouth since its just a change in her g-tube formula, but at the same time, the diet has normalized her central nervous system in a lot of ways and therefore given her an appetite for the first time in her life. One of the most common symptoms of seizures for Maggie is refusing to eat, reflux and vomiting.

Most of our kids have serious sensory integration problems so are very sensitive to certain senses or under-sensitive and need extra feedback. For example, Maggie needs extra weight and extra pressure to calm her body since she is under-sensitive to pressure and gravity. I think this sensory disfunction can emerge as gagging due to over-sensitivity to sense of smell. So there might be smells that don't seem very strong to you that seem MUCH stronger to Isaac. Maggie is clearly over-sensitive to flavours and textures in her mouth and needed a very bland, creamy, soft diet as a toddler, but I know lots of other kids who are undersensitive to tastes and crave spicy foods or crunchy, hard foods since it gives them more sensory feedback in their mouth.

Many of our kids are very associational in how they learn. This is common in autism and very common with our Maggie. This means that if two things happen together, Maggie decides there is a causal relationship even if there isn't. For example, Maggie used to have myoclonic seizures in response to loud, sudden sounds and developed absolute fear of the object that made the loud sudden sound in the first place. She once had a bad fall after a loud public toilet triggered a sudden jerking seizure and she would scream at the sight of toilets after that. In a similar way, some kids develop gagging because a certain thing smelled bad to them once, or triggered vomit in a certain situation, and they start having the same reaction. I've talked to the aide for a girl who gagged at the smell of a nasty garbage can. Then she started gagging everytime she passed the garbage can. Then she gagged as she passed ANY garbage can. Then she gagged when she saw a garbage can at the opposite end of the long hallway. Then she gagged as she approached the hallway because she knew there was a garbage can at the end. With both Maggie and this other girl, we had to break these "associations." With Maggie, we broke the association by constant exposure to the trigger. I spent about a month taking Maggie into every public washroom and holding her tight and cuddling her while flushing the toilet until she slowly realized she had nothing to fear from them. The aide helped this girl break her association with garbage can by using scented hand lotion and opening up hand lotion and letting her smell it whenever they passed the garbage cans.

Another thing to think about is GI issues. Maggie has something called slow stomach motility meaning food can sit and stagnate in her stomach for a long time. This contributes to her reflux. Slow stomach motility, reflux and constipation can make you feel nauseous and not hungry since there is undigested food essentially rotting in your GI tract. If your son's gagging continues, then I'd consider some GI tests to make sure that he isn't suffering from these problems. You can test for reflux doing a Ph study, test the health of his esophagus with an endoscopy, and test for allergies and other GI problems by taking biopsies of various spots in his GI tract. A GI doctor can do all this.

Anyway, those are some ideas. We've struggled with Maggie's refusal to eat for five years and these are some of the things we've explored and found. The most surprising thing for us is that achieving seizure control has made such a difference with her appetite. I guess I thought the central nervous system just affected the brain, but it has a huge effect on other systems like the digestive tract since so many nerves control how we process tastes and smells and foods. Good luck!

Erin
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dimitrismum
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PostPosted: Mon Jan 05, 2009 9:27 pm    Post subject: Reply with quote

Hi Anita and welcome!

My son is nearly 9 and is sensitive to some smells which make him gag, Erin has written alot of interesting stuff, I was going to say it would seem strange to develop a problem with smell at age 13 but kids do go through alot of changes at that age as Erin pointed out. Mostly as time goes by, sensitivety will decrease, especially if children are eating a variety of food (smell being connected to taste, gradually introducing a range of food helps).

Anyway Dimitri gags mostly at inedible objects like balloons, as mentioned the association can become the trigger, now if Dimitri sees balloons on the TV he will gag. I also know someone who gags when stressed or over excited so this is also a consideration, maybe somewhere Jesse has had a bad experience with food, gagging could be away of avoiding?? Is it happening at school??

Question for Erin, whats a cyclic vomiting syndrome? and how did you know Maggie suffered from migraines?

Emma
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anita-kg



Joined: 04 Jan 2009
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Location: The Pas MB Canada

PostPosted: Tue Jan 06, 2009 9:21 am    Post subject: gagging, trouble eating Reply with quote

Thank-you for all the input. Jesse has a Doctor appointment on the 14th, I will bring some of these up.
Jesse does not just gag at meal time, but also in his arm chair watching T.V. It seems to be worse in the morning, and he does gag at school too. Ill get phone calls to come pick him up. also just walking around, he'll gag.
But like I said it's not all the time, he'll go awhile gagging then be good for a couple of days to weeks. then be gagging again.
I thought maybe something was interfering with his gag reflex in the back of his mouth.
I really hope I can get this fixed, for his sake.
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Magster's Mom
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PostPosted: Tue Jan 06, 2009 10:18 am    Post subject: cyclic vomiting syndrome and migraines Reply with quote

Hi Emma,

Cyclic vomiting syndrome is a neurological gut disorder. It causes intense vomiting and is similar to a migraine in the gut or a seizure in the gut. One child with AS who has this disorder is treated for it the same as he'd be trated for seizures: when he starts vomiting, he cannot stop, so he goes to hospital where he gets Ativan to calm his central nervous system and IV fluids to re-set him. It isn't a stomach issue that causes his vomiting, its caused by intense abnormal activity in the nerves in his stomach.

We still don't know for sure that Maggie has migraines but its the best explanation we can come up with. A few months ago, Maggie became increasingly inconsolable. After she'd been screaming for several hours and we couldn't comfort her, we took her to the ER. She ended up getting admitted where they searched for any cause of pain and couldn't find a cause. I really felt it was a migraine even though I've only had two in my life, since it seemed that Maggie was worst when there was light and loud noises and any stimulation and it seemed she was holding her head. She was also vomiting. She finally settled down after many hours and was discharged the next day. The ER doctor thought she was in a metabolic crisis called metabolic acidosis but I didn't believe this was likely; by the time they tested her Ph level, she was normal, but I just don't believe she was acidotic. That explanation didn't make sense. Our paed said her first thought reading the medical report was migraine so we both believed it was the same thing. A month or so later, after getting a flu shot, the same thing happened, but our paed had told me how they treat migraines in small children. She said age 5 is a common age for them to start and they give high doses of tylenol and ibuprofen together, every 3 hours. So I did this, kept Maggie in a cool dark room until she fell asleep, pushed the tylenol and ibuprofen by her g-tube, and she woke the next morning fine. So based on those experiences, we've decided that migraines are the only logical explanation. If she had poor seizure control at the time, I would've thought that seizures could've caused the screaming but she was otherwise doing great and had none of the symptoms we see with poor seizure control.

I hope that all makes sense!

Erin
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Beckie
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PostPosted: Tue Jan 06, 2009 7:39 pm    Post subject: Reply with quote

The only time I know of Hannah gagging like this is when she has a sore throat. 9 times out of 10, if she starts gagging, I now get her to the Dr and she has a throat infection. She was like this before Christmas, really went off her food, and was gagging a lot - she had a viral throat infection.

Love Beckie X
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anita-kg



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PostPosted: Sun Jan 11, 2009 10:55 am    Post subject: gagging, trouble eating Reply with quote

Thats what i think it could be, his tonsils or a sore throat. From what I have read on this forum.
And I'm happy to say, that after fighting with Jesse for about a few weeks to eat, this morning he woke up and walked into the kitchen looking for food. I had bought all his favorite foods and he was quite pleased to find them in the fridge. I was so worried because he had lost so much weight in that time, But I know it will be short lived because in no time he will start all over again.
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PostPosted: Sun Jan 11, 2009 10:52 pm    Post subject: tonsils and throat infections Reply with quote

Anita,

Like Becky said, back in the old days, Maggie would go through long hunger strikes and many times, it was a bacteria like strep or a viral throat infection that caused cold sores in her throat. We ended up having her tonsils removed since she had almost chronic strep infections and it appeared that her tonsils were harbouring the bacteria. Her tonsils were pitted from repeated infections and she was so susceptible to strep, any broken skin on her body would get a strep impetigo. Oy, I'd almost forgotten about those days! Back then, Maggie did not have a strong immune system.

Since we had her tonsils out, Maggie has not had any more trouble with strep and her last impetigo was over a year ago when she was still recovering from other illness. I think, on balance, Maggie has been healthier since she got her tonsils out, but Mag was one of those rare cases of a child who had life-threatening complications after her tonsil surgery and she spent almost 3 weeks on life support after the surgery. Mag developed massive lung inflammation after her surgery which caused respiratory failure and a condition called ARDS, which is fatal about 50% of the time. I no longer think of any surgery as "simple and routine" but I also don't think that Maggie's ongoing problems with lung inflammation are very common in our kids, although there seems to be a certain percentage of our kids who experience pneumonias and inflammatory disorders very easily. Anyway, the tonsil issue is easily examined and can be treated and I just encourage all parents to think of tonsil removal as "real" surgery and ask for extra precautions in the OR and post-op.

Erin
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chancesmom
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PostPosted: Fri Jan 30, 2009 8:18 am    Post subject: Reply with quote

I definetly agree with erin. Chance has gone through gagging spells but I think only because of sensory issues, he has never liked anything that is too liquid like and when we started him on regular food any different textures he would gag before it would get in the mouth it only had to touch his lips for him to gag. But I always check with the dr. because it does sound either sensory related or he could be sick. Good luck.

Shauna
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anita-kg



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PostPosted: Fri Feb 20, 2009 3:51 pm    Post subject: Reply with quote

Jesse is still gagging, the doctor turned his nose up at the suggestions I gave him from this forum. Jesse was 94 lbs at that visit and is now 84 lbs.he is going to be 14 yrs. this April that is way to skinny and now he has a weird rash on his body. (on his torso). I feel like banging my head against a wall. I know it has nothing to do with eating, because he does not just gag at meal time. But at all times of the day. He was doing good started eating for a few weeks but it is back. So I will bring him in to the doctor again. Please help, I need answers to bring to the doctor. thank-you
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dimitrismum
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PostPosted: Fri Feb 20, 2009 5:07 pm    Post subject: Reply with quote

Oh my gosh!

Can you find a different doctor? second opinion? When something like this happens, a big change in behaviour, all medical issues should be ruled out just to make sure. What is this rash, I'm thinking Erin will know better about this but have you done a test for strep??

If its definitely not medical, try asking the school for a functional behavioural analysis - http://www.wrightslaw.com/info/discipl.fab.starin.htm

I hope you find out what is going on soon,
Emma
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anita-kg



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PostPosted: Sat Feb 21, 2009 9:47 am    Post subject: Reply with quote

No we have not tested for strep. but I'm going into the doctor office with attitude this time, I would love to switch doctors, but i live so north, that we are short doctors, and they will not take new patients, so your stuck with the one you get. But yes I'm going to get him to check out everything. and if he can't help then send me to the city with Jesse to a doctor that can help.
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PostPosted: Sat Feb 21, 2009 2:39 pm    Post subject: Reply with quote

Hello Anita,
I have been dealing with gaggin/vomiting/refusal to eat for my angel Triniti (who is 5) since Oct. Doctors can find NO reason for it. It began with everytime she urinated she would gag and vomit. I thought she had a UTI that was causeing her pain and making her gag and vomit but urine tests ver and over come back normal. She then began not eating anything at all! I get notes everyday from school that she ate nothing (if I am lucky she drank a little) and gaged at least 3x during the day. She is better with the actual vomiting just because it has been going on for so long that she has figured out how to hold the vomit it (I know that sounds gross sry).

About the time this started her seizures got out of control so I believe they are related. Her GI doctor feel the seizures are causeing the GI issues and her neuro think the GI pain is triggering the seizures. I just want answers. I have learned from the GI dr that Keppra can worsen reflux (does your son have reflux? and if so is he on Keppra?) and I have also searched the web and found that there are cases of people have GI seizures. It is rare and hard to dignos but people who already have seizures are more suseptible to having seizures in the gastro track.

My Trin goes on March 9 for upper GI study (they are putting her to sleep for many tests) if this yeilds no results I dont know what else I am going to do. If you figure out ANYTHING please let me know as this is exactly what I have been dealing with for a while! I know my daughter is a lot younger than your son but this is the same thing that people keep telling me there is nothing wrong with her and it is making me SO mad!! Where are you located? If you would like to talk on the phone my number is 210-883-6963 (Im in Texas)
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Magster's Mom
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PostPosted: Sun Feb 22, 2009 12:07 pm    Post subject: Reply with quote

Hi Anita,

What is the rash like? Does it feel like sandpaper? Maggie went many weeks once refusing to eat and we couldn't figure it out. It turned out to be strep that turned into scarlet fever. She developed a rash all over her trunk that was quite strange but it finally turned into the classic scarlet fever rash. The scarlet fever rash is known for its sandpaper like feel. In Mag's case, she still had strep in her system and a culture for strep was positive. The rash is the body's reaction to the toxins produced by the strep bacteria, if I remember right. The rash is the result of untreated strep infection; you only get it if a strep infection was allowed to linger. Your son might have a very different illness but I would definitely think about strep.

Good luck! When Maggie had this, it was not a typical presentation of either strep or scarlet fever in the beginning. She didn't have any of the throat lesions that are a sign of strep but had a positive culture. In Mag's case. we learned after that episode that she was just very susceptible to strep and we started testing for strep anytime she stopped eating. We eventually had her tonsils removed to try and beat the strep once and for all.

Erin
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See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum
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dimitrismum
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PostPosted: Sun Feb 22, 2009 6:18 pm    Post subject: Reply with quote

Some people have no signs of strep at all,

one time Dimitri was being tested for other reasons (drug induced lupus) our paed sent us to a friend of hers in childrens hospital, as they had no experience of AS they just tested for everything to make sure. The only test to come back positive was the throat culture for strep. He had no obvious symptoms but had been off colour for weeks, tired, lethargic. cold hands and feet all the time (more than normal), anyway, he was soon back to normal once the strep was sorted out.

hope you get answers soon

Emma
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Magster's Mom
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PostPosted: Sun Feb 22, 2009 11:16 pm    Post subject: Reply with quote

Emma, thanks for sharing that. That is so much like Maggie some of the times she's had strep. Whenever something is just "off" with Maggie, I ask for a strep culture, since she's just been susceptible to it.

I know a woman with a typical daughter who had been sick but it was very aspecific, nothing too bad. Then her daughter started throwing up. They were slow realizing it wasn't just a flu bug but she was very lethargic. It ended up being that the strep bacteria had infected her daughter's kidneys and she went into kidney failure before they correctly diagnosed it. That was the first time I realized what a nasty little bacteria strep is. Her daughter made a very slow but full recovery but it was my first lesson that strep isn't just a sore throat.

When Maggie had chickenpox, each pox turned into a festering sore. Totally nasty. She looked like a victim of the plague. Her pox tested positive for strep and staph so the strep bacteria had invaded a skin-level sore. She didn't have any signs of strep throat but she needed antibiotics to stop the strep infection of the pox. That was during a time when Maggie had been very sick and was immune-compromised so that's probably very unusual but this is why I always suspect strep.

Erin
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PostPosted: Mon Oct 08, 2012 10:29 am    Post subject: Reply with quote

Aloha From Kauai Hawaii! I am a first time forum user my name is Harriet and I have a 17 year old son name Chase who has angelman syndrome. He was diaganose just before he turned 2 with the deletion +. It's interesting to hear all your concerns and experience on the gagging and eating disorders. My son also has that gagging reflex. He has had it when he was younger, and we noticed that he would gag at certain items he sees like the McDonald's happy meal toys, hats, masks, dolls or toy figures, stuffed animals. We'd be eating at McDonalds when he was little and everytime he'd see a happy meal box, he'd immediately start gagging. It was kind of embarassing at first because everyone would be eating and my son would be full on gagging, but there's nothing we could really do but either remove ourselves from the distraction or have to ask them to put the toy away. Anyway, we would tell our friends and family what would be causing his gagging and they'd remove it from his sight and the gagging would stop. Our pediatrician said that instead of a smell gagging reflex his is sight. Like how we gag when we smell foul oders, Chase gags at the sight of things. I thought that was a pretty good explanation because it seemed that everytime he'd gag we'd look around and saw something that usually caused his gagging and either removed the item or remove him and it would stop. Well now he's 17 years old and he has been gagging even when there are things that are not around that usually causes him to gag. My first thought is acid reflux and a slow digestive system since I have the same problem. Disgestive issues seem to run in my family because my mom and sister also have problems in that area. I've also noticed that he has been showing more signs of tremors. Chase used to have seizures and was on seizure medication. They were really mild seizures, but at one point it got really bad to where he was having dropped seizures. My husband found out that the medicaiton he was on was not the proper medication for kids with AS and all the symptons that Chase was getting from the medication was exactly what was listed on the internet. This medication was tegretol. At first our neurologist wouldn't listen to us and kept upping his dosage so our pediatrician called and told him the situation. I immediately took him off the medication, and just kept him on depakote and there was immediate improvement, no seizures! Chase has been off seizure medication for over 5 years but I've been thinking if his tremors are seizure and that's why the gagging. I feel it's either the acid reflux or something to do with his stomach, but also could be seizures. He still has a really good apetite. He goes without eating throughout the day but usually gets hungry in the late afternoon and makes up for the time he didn't eat. Sometimes he'll gag when he's eating, and will take out the food from his mouth. He likes to drink more than eat. I was feeling really frustrated because the gagging is getting worse and he can't tell us how he's feeling. Sometimes at night I just cry because of all the things he has been through and how frustrated he is too. Chase has also been through a spinal fusion 2 years ago because he had a really bad case of scoliosis. I think you all know how I feel. They are such loving kids and always happy. My faith in God is what gets me through. I know God has a plan and purpose for Chase's life. He has touched so many people's lives just because of his handsome looks and happy demeanor. I've had people come up to me since he was a baby to tell me what a good boy he is, and how handsome and deep dimples, and always happy. People have said nice comments and also give him things. We live on a small island and people know us because of him. I have a lot of testimonies on how God showed me how Chase touches lives. Not only that, but teaches us something about ourselves as well. Anyway, thank you all for sharing. I'm glad I came across this website. My son will be aging out. My hands are full with things that I have to prepare for his aging out as well as his health issues. Aside from the gagging and hay fever, Chase is a pretty healthy kid.

Mahalo from Kauai!
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