Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi , I'm Marlys in SC, mother of , age 16, who has echolalia, echopraxia, and " just right " type of OCD. There are actually several of us on this list with teen-agers, but we are not always posting. I'd be happy to hear from you though, regarding your concerns. I know it's helpful, even comforting, at times to hear from someone who is going through the " same things " as you. In my case, I've not found anyone whose child has OCD presenting in the same ways as it does in , and it's frustrating... for a long time, It thought I was crazy... but after a lot of research, I trust my instincts more. I am in a similar situation to where there are no OCD therapists near enough for me to manage appointments. (I've checked with the OCF and our psychiatrist for recommendations... also looked in the phone book, asked family dr., etc.) My daughter is currently seeing a (nearby) therapist who SAID she treats OCD, but on the last appointment informed me that she can't treat 's OCD until WANTS to. This therapist also basically told me to back off, let " own " this problem, get my own life, etc. While I get her point and agree with much of what she is saying, it's very frustrating for me to be trying to get help for my daughter, and so far, no one has been able to help her. Marlys in SC > Hi, > > Most of you seem to be moms of young children. Is there a separate list for > parents of teenagers with OCD? > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi , I'm Marlys in SC, mother of , age 16, who has echolalia, echopraxia, and " just right " type of OCD. There are actually several of us on this list with teen-agers, but we are not always posting. I'd be happy to hear from you though, regarding your concerns. I know it's helpful, even comforting, at times to hear from someone who is going through the " same things " as you. In my case, I've not found anyone whose child has OCD presenting in the same ways as it does in , and it's frustrating... for a long time, It thought I was crazy... but after a lot of research, I trust my instincts more. I am in a similar situation to where there are no OCD therapists near enough for me to manage appointments. (I've checked with the OCF and our psychiatrist for recommendations... also looked in the phone book, asked family dr., etc.) My daughter is currently seeing a (nearby) therapist who SAID she treats OCD, but on the last appointment informed me that she can't treat 's OCD until WANTS to. This therapist also basically told me to back off, let " own " this problem, get my own life, etc. While I get her point and agree with much of what she is saying, it's very frustrating for me to be trying to get help for my daughter, and so far, no one has been able to help her. Marlys in SC > Hi, > > Most of you seem to be moms of young children. Is there a separate list for > parents of teenagers with OCD? > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi ! What age is your child? There ARE parents of older kids here in the group. I have a 13 y/o son with OCD, then as Marlys mentioned, her daughter is 16; and there are older kids too. I guess we parents with some of the younger kids may post most often. There is a " parents of adults w/OCD " group also. Look at message #20885 dated 2/1/02 if you can as this post contained a list of support groups/info on OCD. There is also a yahoo support group that is for teenagers to join but I found the subject matter way too mature for my son when I " lurked " there a week or so. Hope this helps some! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi lys and , My daughter is 13, and will be entering highschool next year. Our situation is very similar. does not want help for her " behaviors " (technically I cannot really call it OCD since she has never received a complete diagnosis). Her most prominent behaviors as of this year have been BDD- panic/obsession with her skin and subsequent rituals, which can be hard for a therapist to separate from typical adolescent concerns without some mre intimate contact with the patient. We went through a couple of therapy " duds " first which may in part account for her lack of trust or respect for therapy. Also it just seems more typical that teens resist treatment. Our current therapist has stated similarly that must come to recognize/admit a problem. That means I must be all the more " hands- off " so that she either coasts or crashes (this is actually not so hard for me as I have the 4 younger kids, one of which can be off/on draining herself with " behaviors " which seem to fall a bit in the realm of a PDD and/or LD, including some OCD). I have sometimes felt guilty for not being attentive enough to her (the oldest, and expected to do for herself) but now realize that may not have been such a bad thing (example when she kept wanting her bedding frequently washed b/c of contamination fears, I never would comply, because I was already dealing with younger kid bedwetting! She either did it herself or slept elsewhere-and eventually left off with that inconvenient fear). However, I only realized later it was very OCD- ish which would be the drawback to not being very attentive (combined with the wishful thinking that problem will disappear). Anyway, while she keeps coasting (as she has been for 9 weeks now- doing MUCH better-which I attribute possibly to the idea that she has a pandas type of OCD which is in " remisson " ) she really does not see a need for treatment, so we are just in a holding pattern and wondering how the move to highschool will affect things. nancy grace > > Hi, > > > > Most of you seem to be moms of young children. Is there a separate > list for > > parents of teenagers with OCD? > > > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi , I have a teen who is now 17 almost 18! There are many of us parents of teens who belong to this list. Our sons on set was 12. I also belong to the parents of adults with ocd list. It is not as busy as this list. The people on that list are wonderful parents and offer great support just as this list does. Vivian --- SRFS@... wrote: > Hi, > > Most of you seem to be moms of young children. Is > there a separate list for > parents of teenagers with OCD? > > - > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi I have a seventeen year old daughter with OCD,but I have not had the time to post in the past few months.But I do try to read the posts. Theresa in SC __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Hi , I am also the mom of a teen w/OCD. My son just turned 17 y/o and has severe OCD in the form of contamination obsessions and washing compulsions. He was diagnosed in January 2001, but had symptoms into early childhood - I just didn't know about OCD back then. I look forward to your input to this group. I don't post real often, but I read all the posts that come across. Sharon in Oklahoma >From: SRFS@... >Reply-To: >To: >Subject: Teenagers? >Date: Sun, 3 Feb 2002 23:21:23 EST > >Hi, > >Most of you seem to be moms of young children. Is there a separate list for >parents of teenagers with OCD? > >- _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Hi , I am also the mom of a teen w/OCD. My son just turned 17 y/o and has severe OCD in the form of contamination obsessions and washing compulsions. He was diagnosed in January 2001, but had symptoms into early childhood - I just didn't know about OCD back then. I look forward to your input to this group. I don't post real often, but I read all the posts that come across. Sharon in Oklahoma >From: SRFS@... >Reply-To: >To: >Subject: Teenagers? >Date: Sun, 3 Feb 2002 23:21:23 EST > >Hi, > >Most of you seem to be moms of young children. Is there a separate list for >parents of teenagers with OCD? > >- _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Hi , I am also the mom of a teen w/OCD. My son just turned 17 y/o and has severe OCD in the form of contamination obsessions and washing compulsions. He was diagnosed in January 2001, but had symptoms into early childhood - I just didn't know about OCD back then. I look forward to your input to this group. I don't post real often, but I read all the posts that come across. Sharon in Oklahoma >From: SRFS@... >Reply-To: >To: >Subject: Teenagers? >Date: Sun, 3 Feb 2002 23:21:23 EST > >Hi, > >Most of you seem to be moms of young children. Is there a separate list for >parents of teenagers with OCD? > >- _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 , My son is 15 years old and also has contamination OCD. He refuses to go to therapy - partially because of 3 previous non-effective therapists. He is on 150 mg of Zoloft (recently increased from 100 mg.) Needs reassurance every night that something is not physically wrong with him. He also avoids drawing attention to himself - very self conscious. I almost feel that he is socially withdrawn. I read the posts but I don't post much myself. Ellen > >Reply-To: >To: >Subject: Re: Teenagers? >Date: Wed, 06 Feb 2002 20:57:22 -0600 > >Hi , >I am also the mom of a teen w/OCD. My son just turned 17 y/o and has >severe OCD in the form of contamination obsessions and washing compulsions. >He was diagnosed in January 2001, but had symptoms into early childhood - I >just didn't know about OCD back then. >I look forward to your input to this group. I don't post real often, but I >read all the posts that come across. >Sharon in Oklahoma > > > >From: SRFS@... > >Reply-To: > >To: > >Subject: Teenagers? > >Date: Sun, 3 Feb 2002 23:21:23 EST > > > >Hi, > > > >Most of you seem to be moms of young children. Is there a separate list >for > >parents of teenagers with OCD? > > > >- > > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Hi : I have a teenager with OCD, Steve just had his 15th birthday. We get to deal with the teen issues as well as OCD, a tricky combo! However I believe that their need for mastery and independence (partial) can assist in getting them motivated re: E & RP. Luckily Steve was a pre-teen at diagnosis so we are not dealing with severe OCD - but he still has OCD popping up from time to time. It is wonderful that so many young kids are being diagnosed and treated for OCD. There is also a list for teens, the TeenOCD List, that you might want to check out. Teens have some special OCD issues. Dr. Geller spoke at the last OCF Conference about their higher incidence of sexual and violent obsessions and these are very painful symptoms. Please feel free to address teen issues here, there are many of us parenting teens on the list. Take care, aloha, Kathy (h) kathyh@... > Hi, > > Most of you seem to be moms of young children. Is there a separate list for > parents of teenagers with OCD? > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2011 Report Share Posted February 3, 2011 Hi Becca, I was diagnosed with Achalasia when I was about 13 years. Probably had the swallowing problems for a couple of years; I really don't remember the details. Of course, the doctors told my parents that I was choking because I was a teenager and I would out-grow the problem. Yeah, right. I will be 60 this month (don't feel that " old " ) but am telling you that you can live a long time with Achalasia. I had the open Heller Myotomy in 1974, right after I graduated from college. Had to have another Heller Myotomy in 2008 - that time it was laparoscopic. Much, much easier to recover from. All my life, I've told friends that I have a swallowing problem when I'm eating with them and I suddenly cannot swallow. I tell them to ignore me and, if they do, the swallowing problem seems to lessen - or at least, I don't feel stressed that they are watching me. This led to a really funny incident when I was eating lunch with friends from work and most of them knew about my swallowing problems and were talking with each other and ignoring my " choking " . However, one guy didn't know and was beside himself (he told me later) because I was obviously having a great deal of difficulty and no one paid any attention to my " problems " . So, we talked later and he understood. That said, they were great about my " swallowing " issues and very considerate about not making comments about it or looking at me when I have problems with swallowing. I've had one child and didn't have any problems during my pregnancy. She has never had any swallowing problems nor has her 2 boys. As you will learn from this site, this condition does not appear to be inherited. BTW, I usually refer to Achalasia as a " condition " and not a disease. Just words, but " condition " is less scary to other people. I make it pretty simple, even now, when I tell people about this problem. I tell them that my esophagus doesn't work; for example I tell them that they can swallow lying down and I cannot do that. That is usually enough information. I think the most difficult thing for me was that I was a very shy teenager and a noticeable problem such as this " choking " made me feel really self-conscious. I discovered that drinking room temperature water (no ice) helps me get the food to go down. I cannot drink carbonated drinks when I'm eating. However, you will learn from this site that some people have the exact opposite reactions. As for the spasms, my docs have given me a prescription that I take when the spasms are really bad. Sometimes, a warm drink stops the spasms when the they are mild. I know there are younger people on this site and hope they respond to you. Just wanted to let you know that my achalasia started when I was a teenager and I've lived with it for a long time and it has not slowed me down. Have you had surgery? Good luck, Jan, in Portland, OR From: achalasia [mailto:achalasia ] On Behalf Of BeccaB Sent: Thursday, February 03, 2011 5:24 PM achalasia Subject: Teenagers? Hi! I am 17 years old and I was diagnosed with Achalasia when I was 8, though I have had symptoms since I was 5. So obviously us teen and child Achalasians are super rare, but i was just wondering if there was anyone else out there I could talk to. I sometimes feel like a bit of a freak when trying to explain my disease to people (especially when they freak out at the word disease, and I have to explain that it's not contagious). So do any of you want to share your story? It would be great to have a peer to talk to, and even if some of you adults want to jump in I would love to hear your stories and advice. The most troubling thing for me right now are the infamous spasms. They pretty much ruin me. I had a really bad bout last night that left me crying in a ball in the hallway at 3:00 AM. What do you do to keep them at bay? What do you think causes these stupid little devil spasms? And another thing is the dumping syndrome which has pretty much rendered me lactose intolerant. Does anyone else experience this problem with dairy.. and coffee for that matter? Well, I would love to hear from anyone honestly. Teens and adults alike. I kinda just want to talk, swap stories, and trade remedies. Thanks so much! Becca from AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2011 Report Share Posted February 3, 2011 Hi!!!!! my name is Taniea, and I have Achalasia and feel the same way sometimes I feel the same way not knowing whats going to happen and when you try talking to someone like your best friend they always freak and yea then you start to feel awkward. Even though i am only 12 I still understand. I have had a surgery done on me and don't even know what it's called! Do you think thats weird? I was diagnosed with Achalasia last year. I feel pain that I can't explain very well has anyone else ever had that happen to them? I have a Facebook SO IF ANYONE and I mean ANYONE wants to talk to me I'm all ears. ________________________________ From: BeccaB <greeneyedgirl247@...> achalasia Sent: Thu, February 3, 2011 7:23:40 PM Subject: Teenagers? Hi! I am 17 years old and I was diagnosed with Achalasia when I was 8, though I have had symptoms since I was 5. So obviously us teen and child Achalasians are super rare, but i was just wondering if there was anyone else out there I could talk to. I sometimes feel like a bit of a freak when trying to explain my disease to people (especially when they freak out at the word disease, and I have to explain that it's not contagious). So do any of you want to share your story? It would be great to have a peer to talk to, and even if some of you adults want to jump in I would love to hear your stories and advice. The most troubling thing for me right now are the infamous spasms. They pretty much ruin me. I had a really bad bout last night that left me crying in a ball in the hallway at 3:00 AM. What do you do to keep them at bay? What do you think causes these stupid little devil spasms? And another thing is the dumping syndrome which has pretty much rendered me lactose intolerant. Does anyone else experience this problem with dairy.. and coffee for that matter? Well, I would love to hear from anyone honestly. Teens and adults alike. I kinda just want to talk, swap stories, and trade remedies. Thanks so much! Becca from AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2011 Report Share Posted February 3, 2011 Hi everyone! Thanks so much for replying. Since you all have responded, I will go ahead and tell my story. I have told it plenty of times. So my symptoms really started when I was 5 or 6. I started running really high fevers about every two weeks, and my parents continued to take me into the doctor. The doctor tested me for strep because of the white spots on the back of my throat (which turned out to be a yeast infection from rotting food in my esophagus), and when the results came back negative they prescribed me an antibiotic anyways. That, of course, made matters worse. This cycle continued for three years and by the time I was 8, I was old enough to tell my parents that it felt like my food was stuck. Now my parents had been told by doctors that I was just being a picky eater, but they were very concerned about the fact that I only weighed 40 lbs. Oh boy did I get yelled at for not eating, but when I told my mom about food getting stuck and it was noticed that I was respirating food at night, she went off on the doctors, and they referred me to an upper GI doctor. This is when the surprise came. I went in to see Dr. Beebo. I still remember him. I did the Barium swallow, and it was discovered that my esophagus was completely non-functioning. In fact, so much food was stuck in it that my esophagus had stretched to twice the size of an adult's. Many tests and lots of research later, my parents decided to go through with the Hellers instead of trying botox or any other treatments first. However, time was running out. I was losing weight still, and at under 40 lbs, there wasn't a doctor in the US that would get within 5 miles of me with anesthesia. Well, at least not in AZ. We did find a surgeon in California at UCLA who was willing to do the procedure laproscopically. But he wouldn't do it if I lost any more weight, and that meant I would starve to death, every Achalasian's worst nightmare. So they started me on a NG tube. That was a Hellish experience I won't even go into right now. Let's just say that having things put in my nose in on my top five list of fears now. However much I hated that NG tube, it did save my life, and I finally had the surgery in July of 2002, I think. It is no doubt to me that that surgery saved my life. I am happy to say that I live a fairly normals life. I am an artist and an actress, and I hope to get into theatre and design in the future. However, I still have my bad days. Has anyone ever noticed that spasms come in wave? Maybe it's just me trying to make sense out of the random chaos, but they seem to occur several times in one week and then none for a month, and then several for two weeks... or something like that. I really haven't been able to discern for certain what causes them, but popcorn is a cause. I really should stay away from it... but it is so good. I suppose that is my fault. XD When I do have spasms I pace. A lot. My worst bouts usually occur at night, and I pace up and down the hallway outside my bedroom, water bottle in hand. When I am able to swallow, I take a Tylenol PM. Any muscle relaxer would do, I suppose. My parents buy the giant bottles from Costco, so that is what I use. It takes anywhere between 20 mins to 2 hours for the stuff to relax me enough, and I usually end up taking two. The down side to muscle relaxers id that they make you very tired. So it really sucks when I have spasms during school, which is often... maybe 1 every other week. Pacing the nurse's office while whimpering and trying to hold back tears is definitely not what i call a fun time. Thanks Jan! It actually makes me feel much better that you said you did have any problems while you were pregnant. My family has a history of severe morning sickness, and I am a bit worried about how that will affect me due to the fact that i can't throw up. Taniea, I'd love to be your friend on facebook. Here is a link to my page: http://www.facebook.com/?sk=lf#!/profile.php?id=1819047715 Anytime you have any questions about your " condition " or need to talk you can just pop me a message. Matt, I totally know what you mean when you said you felt like you were going to die when you had your first spasm. I had mine AFTER my Hellers.I sure did freak my parents out. They called 911 because they they thought I was having a heart attack. That resulted to me being hooked up to a heart monitor for 3 months. I look back now and laugh. I think spasms hurt a whole heck of a lot more than a mere heart attack. XD Thanks everyone for replying. I look forward to hearing back from all of you. Tata! Becca > > Hi Becca, > I was diagnosed with Achalasia when I was about 13 years. Probably had the > swallowing problems for a couple of years; I really don't remember the > details. Of course, the doctors told my parents that I was choking because I > was a teenager and I would out-grow the problem. Yeah, right. I will be 60 > this month (don't feel that " old " ) but am telling you that you can live a > long time with Achalasia. I had the open Heller Myotomy in 1974, right after > I graduated from college. Had to have another Heller Myotomy in 2008 - that > time it was laparoscopic. Much, much easier to recover from. All my life, > I've told friends that I have a swallowing problem when I'm eating with them > and I suddenly cannot swallow. I tell them to ignore me and, if they do, the > swallowing problem seems to lessen - or at least, I don't feel stressed that > they are watching me. This led to a really funny incident when I was eating > lunch with friends from work and most of them knew about my swallowing > problems and were talking with each other and ignoring my " choking " . > However, one guy didn't know and was beside himself (he told me later) > because I was obviously having a great deal of difficulty and no one paid > any attention to my " problems " . So, we talked later and he understood. That > said, they were great about my " swallowing " issues and very considerate > about not making comments about it or looking at me when I have problems > with swallowing. > > I've had one child and didn't have any problems during my pregnancy. She > has never had any swallowing problems nor has her 2 boys. As you will learn > from this site, this condition does not appear to be inherited. > > BTW, I usually refer to Achalasia as a " condition " and not a disease. Just > words, but " condition " is less scary to other people. I make it pretty > simple, even now, when I tell people about this problem. I tell them that my > esophagus doesn't work; for example I tell them that they can swallow lying > down and I cannot do that. That is usually enough information. I think the > most difficult thing for me was that I was a very shy teenager and a > noticeable problem such as this " choking " made me feel really > self-conscious. I discovered that drinking room temperature water (no ice) > helps me get the food to go down. I cannot drink carbonated drinks when I'm > eating. However, you will learn from this site that some people have the > exact opposite reactions. > > As for the spasms, my docs have given me a prescription that I take when the > spasms are really bad. Sometimes, a warm drink stops the spasms when the > they are mild. > > I know there are younger people on this site and hope they respond to you. > Just wanted to let you know that my achalasia started when I was a teenager > and I've lived with it for a long time and it has not slowed me down. > > Have you had surgery? > > Good luck, > Jan, > in Portland, OR > > From: achalasia [mailto:achalasia ] On Behalf > Of BeccaB > Sent: Thursday, February 03, 2011 5:24 PM > achalasia > Subject: Teenagers? > > > Hi! > > I am 17 years old and I was diagnosed with Achalasia when I was 8, though I > have had symptoms since I was 5. So obviously us teen and child Achalasians > are super rare, but i was just wondering if there was anyone else out there > I could talk to. I sometimes feel like a bit of a freak when trying to > explain my disease to people (especially when they freak out at the word > disease, and I have to explain that it's not contagious). So do any of you > want to share your story? It would be great to have a peer to talk to, and > even if some of you adults want to jump in I would love to hear your stories > and advice. > > The most troubling thing for me right now are the infamous spasms. They > pretty much ruin me. I had a really bad bout last night that left me crying > in a ball in the hallway at 3:00 AM. What do you do to keep them at bay? > What do you think causes these stupid little devil spasms? > > And another thing is the dumping syndrome which has pretty much rendered me > lactose intolerant. Does anyone else experience this problem with dairy.. > and coffee for that matter? > > Well, I would love to hear from anyone honestly. Teens and adults alike. I > kinda just want to talk, swap stories, and trade remedies. > > Thanks so much! > Becca from AZ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Hi Becca, I hear you and can relate! I'm 46 years old and have had this condition since I was 14years old In the early 70's I really was a unique patient. I went from Doc. to Doc had at least 8 dilations, they did them when you were awake back then, Had my first Hellers when I was 21. It worked for 15years had another Hellers 2 years ago and finally had to have my E removed 2 months ago. I know its not for everyone, but for me it has been worth all the discomfort. I have no reflux or night pain, my food, some I have never had before has changed my life. I know that pain that brings you to tears. What gave me alot of pain was taking meds. in pill form. Try to get the Tylenol or any other pill in liquid form. The pills will get stuck and just won't go down, for me it was 48 hrs before the pill would digest. The Doc I used was Dr. Maish at UCLA She is an expert on A and has fixed me for life. She has a wonderful bed side manner and to top it off she knows her stuff. I'll give you her number if you would like it. You sound strong and looking forward to a wonderful future in the arts. There is hope for us and you will get through this. Remain positive and getting the right Doc. is the secret to having a wonderful calm and happy dinner. All the best, (CA) ________________________________ From: BeccaB <greeneyedgirl247@...> achalasia Sent: Thu, February 3, 2011 8:37:51 PM Subject: Re: Teenagers? Hi everyone! Thanks so much for replying. Since you all have responded, I will go ahead and tell my story. I have told it plenty of times. So my symptoms really started when I was 5 or 6. I started running really high fevers about every two weeks, and my parents continued to take me into the doctor. The doctor tested me for strep because of the white spots on the back of my throat (which turned out to be a yeast infection from rotting food in my esophagus), and when the results came back negative they prescribed me an antibiotic anyways. That, of course, made matters worse. This cycle continued for three years and by the time I was 8, I was old enough to tell my parents that it felt like my food was stuck. Now my parents had been told by doctors that I was just being a picky eater, but they were very concerned about the fact that I only weighed 40 lbs. Oh boy did I get yelled at for not eating, but when I told my mom about food getting stuck and it was noticed that I was respirating food at night, she went off on the doctors, and they referred me to an upper GI doctor. This is when the surprise came. I went in to see Dr. Beebo. I still remember him. I did the Barium swallow, and it was discovered that my esophagus was completely non-functioning. In fact, so much food was stuck in it that my esophagus had stretched to twice the size of an adult's. Many tests and lots of research later, my parents decided to go through with the Hellers instead of trying botox or any other treatments first. However, time was running out. I was losing weight still, and at under 40 lbs, there wasn't a doctor in the US that would get within 5 miles of me with anesthesia. Well, at least not in AZ. We did find a surgeon in California at UCLA who was willing to do the procedure laproscopically. But he wouldn't do it if I lost any more weight, and that meant I would starve to death, every Achalasian's worst nightmare. So they started me on a NG tube. That was a Hellish experience I won't even go into right now. Let's just say that having things put in my nose in on my top five list of fears now. However much I hated that NG tube, it did save my life, and I finally had the surgery in July of 2002, I think. It is no doubt to me that that surgery saved my life. I am happy to say that I live a fairly normals life. I am an artist and an actress, and I hope to get into theatre and design in the future. However, I still have my bad days. Has anyone ever noticed that spasms come in wave? Maybe it's just me trying to make sense out of the random chaos, but they seem to occur several times in one week and then none for a month, and then several for two weeks... or something like that. I really haven't been able to discern for certain what causes them, but popcorn is a cause. I really should stay away from it... but it is so good. I suppose that is my fault. XD When I do have spasms I pace. A lot. My worst bouts usually occur at night, and I pace up and down the hallway outside my bedroom, water bottle in hand. When I am able to swallow, I take a Tylenol PM. Any muscle relaxer would do, I suppose. My parents buy the giant bottles from Costco, so that is what I use. It takes anywhere between 20 mins to 2 hours for the stuff to relax me enough, and I usually end up taking two. The down side to muscle relaxers id that they make you very tired. So it really sucks when I have spasms during school, which is often... maybe 1 every other week. Pacing the nurse's office while whimpering and trying to hold back tears is definitely not what i call a fun time. Thanks Jan! It actually makes me feel much better that you said you did have any problems while you were pregnant. My family has a history of severe morning sickness, and I am a bit worried about how that will affect me due to the fact that i can't throw up. Taniea, I'd love to be your friend on facebook. Here is a link to my page: http://www.facebook.com/?sk=lf#!/profile.php?id=1819047715 Anytime you have any questions about your " condition " or need to talk you can just pop me a message. Matt, I totally know what you mean when you said you felt like you were going to die when you had your first spasm. I had mine AFTER my Hellers.I sure did freak my parents out. They called 911 because they they thought I was having a heart attack. That resulted to me being hooked up to a heart monitor for 3 months. I look back now and laugh. I think spasms hurt a whole heck of a lot more than a mere heart attack. XD Thanks everyone for replying. I look forward to hearing back from all of you. Tata! Becca > > Hi Becca, > I was diagnosed with Achalasia when I was about 13 years. Probably had the > swallowing problems for a couple of years; I really don't remember the > details. Of course, the doctors told my parents that I was choking because I > was a teenager and I would out-grow the problem. Yeah, right. I will be 60 > this month (don't feel that " old " ) but am telling you that you can live a > long time with Achalasia. I had the open Heller Myotomy in 1974, right after > I graduated from college. Had to have another Heller Myotomy in 2008 - that > time it was laparoscopic. Much, much easier to recover from. All my life, > I've told friends that I have a swallowing problem when I'm eating with them > and I suddenly cannot swallow. I tell them to ignore me and, if they do, the > swallowing problem seems to lessen - or at least, I don't feel stressed that > they are watching me. This led to a really funny incident when I was eating > lunch with friends from work and most of them knew about my swallowing > problems and were talking with each other and ignoring my " choking " . > However, one guy didn't know and was beside himself (he told me later) > because I was obviously having a great deal of difficulty and no one paid > any attention to my " problems " . So, we talked later and he understood. That > said, they were great about my " swallowing " issues and very considerate > about not making comments about it or looking at me when I have problems > with swallowing. > > I've had one child and didn't have any problems during my pregnancy. She > has never had any swallowing problems nor has her 2 boys. As you will learn > from this site, this condition does not appear to be inherited. > > BTW, I usually refer to Achalasia as a " condition " and not a disease. Just > words, but " condition " is less scary to other people. I make it pretty > simple, even now, when I tell people about this problem. I tell them that my > esophagus doesn't work; for example I tell them that they can swallow lying > down and I cannot do that. That is usually enough information. I think the > most difficult thing for me was that I was a very shy teenager and a > noticeable problem such as this " choking " made me feel really > self-conscious. I discovered that drinking room temperature water (no ice) > helps me get the food to go down. I cannot drink carbonated drinks when I'm > eating. However, you will learn from this site that some people have the > exact opposite reactions. > > As for the spasms, my docs have given me a prescription that I take when the > spasms are really bad. Sometimes, a warm drink stops the spasms when the > they are mild. > > I know there are younger people on this site and hope they respond to you. > Just wanted to let you know that my achalasia started when I was a teenager > and I've lived with it for a long time and it has not slowed me down. > > Have you had surgery? > > Good luck, > Jan, > in Portland, OR > > From: achalasia [mailto:achalasia ] On Behalf > Of BeccaB > Sent: Thursday, February 03, 2011 5:24 PM > achalasia > Subject: Teenagers? > > > Hi! > > I am 17 years old and I was diagnosed with Achalasia when I was 8, though I > have had symptoms since I was 5. So obviously us teen and child Achalasians > are super rare, but i was just wondering if there was anyone else out there > I could talk to. I sometimes feel like a bit of a freak when trying to > explain my disease to people (especially when they freak out at the word > disease, and I have to explain that it's not contagious). So do any of you > want to share your story? It would be great to have a peer to talk to, and > even if some of you adults want to jump in I would love to hear your stories > and advice. > > The most troubling thing for me right now are the infamous spasms. They > pretty much ruin me. I had a really bad bout last night that left me crying > in a ball in the hallway at 3:00 AM. What do you do to keep them at bay? > What do you think causes these stupid little devil spasms? > > And another thing is the dumping syndrome which has pretty much rendered me > lactose intolerant. Does anyone else experience this problem with dairy.. > and coffee for that matter? > > Well, I would love to hear from anyone honestly. Teens and adults alike. I > kinda just want to talk, swap stories, and trade remedies. > > Thanks so much! > Becca from AZ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Hi Becca! My symptoms started when I was 17. I remember shoveling down fast food and downing a coke and not being able to burp. I felt so full and couldn't get relief. This went on for a couple of years. I dont' remember it really taking a toll on my life until I was 20. By that time it was taking me a very long time to eat food and I was constantly regurgitating it and trying to swallow it back down. It made public situations wierd and my friends became worried. I was in college at the time and drinking was a big part of my life. Apparently, beer relaxed the LES and made it possible for food to pass. I never had issues when I was drinking. I never lost weight. But right before spring break my senior year, I became unable to swallow anything at all - even water. I went to emergency and had the barium and endoscopy. Achalasia was diagnosed immediately (I am blessed for this). I had a dilatation performed over spring break and was able to swallow. I had terrible spasms just like you. I also would pace with luke warm water to try and get rid of them. I found stress to be a very big trigger for me. Also, very crowded rooms, elevators, subways, etc. Anything that could be claustrophobic made spams come on strong. Luke warm water was my only remedy. I needed to catch them early before they became full blown. In fact, I alway thought it was heart burn until I found this group and they told me what I was experiencing. After about 2 years my swallowing became a little more difficult but I managed. 1) because I didn't want any surgery and 2) because I had NO IDEA what could happen to my esophagus. For the next 12 years, I got married, had a twin pregnancy and moved to Atlanta from NYC. My twin pregnancy was interesting. I was able to swallow amazing well. But I was SICK with morning sickness for 16 weeks. I had to go on short term disability because I could not go to work. I say this because you mentioned that this runs in your family. I dont' think its related to achalsia because my sister had the same experience when she was pregnant with 1 child! During my sickness, I was dry heaving and " vomiting " but not much would come up. This actually was beneficial because I did not lose weight and they don't like it if you lose weight (especially with twins). My starting weight was 105lbs so I didn't have much to lose. The good news was that my pregnancy was uncomplicated in all other respects. I carried my twin boys to full term (gained 35lbs in total) and they were born healthy and happy and came home with me right away! 2 years after they were born I finally decided to get checked out. Thanks in part to this group and also because my swallowing was getting weird. I would have episodes where something would get stuck, I would power chug water to get it down and it wouldn't go down. Instead, my esophagus would fill up, balloon out and put pressure on my trachea and cause stridor. I couldn't breathe and felt like I was suffocating. I actually was. I would have to regurgitate in order to allow air into my lungs. This scared the sh** out of me. I went to my GI had a barium in Junw 2010 and learned that my E is 10.5cm in diameter and sigmoid at the distal end. This is considered end stage achalasia. I finally had my Heller Myotomy with Dor fundo at UPMC by Dr. Luketich in October 2010. I am swallowing amazingly well and I hope and pray these results last me for a very long time. I am on FB as well - search Cara Spoto Endriss This is a lifelong disease and we need to support eachother throughout our entire lives! Cara > > > > Hi Becca, > > I was diagnosed with Achalasia when I was about 13 years. Probably had the > > swallowing problems for a couple of years; I really don't remember the > > details. Of course, the doctors told my parents that I was choking because I > > was a teenager and I would out-grow the problem. Yeah, right. I will be 60 > > this month (don't feel that " old " ) but am telling you that you can live a > > long time with Achalasia. I had the open Heller Myotomy in 1974, right after > > I graduated from college. Had to have another Heller Myotomy in 2008 - that > > time it was laparoscopic. Much, much easier to recover from. All my life, > > I've told friends that I have a swallowing problem when I'm eating with them > > and I suddenly cannot swallow. I tell them to ignore me and, if they do, the > > swallowing problem seems to lessen - or at least, I don't feel stressed that > > they are watching me. This led to a really funny incident when I was eating > > lunch with friends from work and most of them knew about my swallowing > > problems and were talking with each other and ignoring my " choking " . > > However, one guy didn't know and was beside himself (he told me later) > > because I was obviously having a great deal of difficulty and no one paid > > any attention to my " problems " . So, we talked later and he understood. That > > said, they were great about my " swallowing " issues and very considerate > > about not making comments about it or looking at me when I have problems > > with swallowing. > > > > I've had one child and didn't have any problems during my pregnancy. She > > has never had any swallowing problems nor has her 2 boys. As you will learn > > from this site, this condition does not appear to be inherited. > > > > BTW, I usually refer to Achalasia as a " condition " and not a disease. Just > > words, but " condition " is less scary to other people. I make it pretty > > simple, even now, when I tell people about this problem. I tell them that my > > esophagus doesn't work; for example I tell them that they can swallow lying > > down and I cannot do that. That is usually enough information. I think the > > most difficult thing for me was that I was a very shy teenager and a > > noticeable problem such as this " choking " made me feel really > > self-conscious. I discovered that drinking room temperature water (no ice) > > helps me get the food to go down. I cannot drink carbonated drinks when I'm > > eating. However, you will learn from this site that some people have the > > exact opposite reactions. > > > > As for the spasms, my docs have given me a prescription that I take when the > > spasms are really bad. Sometimes, a warm drink stops the spasms when the > > they are mild. > > > > I know there are younger people on this site and hope they respond to you. > > Just wanted to let you know that my achalasia started when I was a teenager > > and I've lived with it for a long time and it has not slowed me down. > > > > Have you had surgery? > > > > Good luck, > > Jan, > > in Portland, OR > > > > From: achalasia [mailto:achalasia ] On Behalf > > Of BeccaB > > Sent: Thursday, February 03, 2011 5:24 PM > > achalasia > > Subject: Teenagers? > > > > > > Hi! > > > > I am 17 years old and I was diagnosed with Achalasia when I was 8, though I > > have had symptoms since I was 5. So obviously us teen and child Achalasians > > are super rare, but i was just wondering if there was anyone else out there > > I could talk to. I sometimes feel like a bit of a freak when trying to > > explain my disease to people (especially when they freak out at the word > > disease, and I have to explain that it's not contagious). So do any of you > > want to share your story? It would be great to have a peer to talk to, and > > even if some of you adults want to jump in I would love to hear your stories > > and advice. > > > > The most troubling thing for me right now are the infamous spasms. They > > pretty much ruin me. I had a really bad bout last night that left me crying > > in a ball in the hallway at 3:00 AM. What do you do to keep them at bay? > > What do you think causes these stupid little devil spasms? > > > > And another thing is the dumping syndrome which has pretty much rendered me > > lactose intolerant. Does anyone else experience this problem with dairy.. > > and coffee for that matter? > > > > Well, I would love to hear from anyone honestly. Teens and adults alike. I > > kinda just want to talk, swap stories, and trade remedies. > > > > Thanks so much! > > Becca from AZ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.