Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 e, Can you explain more about the Kaussmal breathing that you say accompanies your sons vomiting episodes please. My daughter -Kay has unusual breathing during some episodes of cyclic vomiting. She becomes very breathless very quickly with only taking a few steps. Thanks, . Re: Cyclic vomiting ? My son's CVS is triggered by infections or overexertion. When someone in our house is sick with a cold or the flu, it's pretty much guaranteed that Devin will start an episode. However, it comes with little notice, as he always wakes up in the early morning already having thrown up in his bed usually before 5am. It continues for hours and hours, vomiting every 5-15 minutes. In between he is *excessively* thirsty, and will drink whatever he can get his hands on for a tiny bit of relief, only to throw up that much worse! At first he's pretty coherent, but by the time I see that it's not getting any better, he's usually doing that Kaussmal breathing, and it's time to get him to the hospital for IVs. Did you know there is a website for CVS with a message board? http://www.cvsaonline.org Blessings, e *Ü*Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 Hi e, I think I know what you are taking about here, and I can understand your astonishment when reading that -Kay can walk during these episodes of vomiting. It never used to be like this believe you me, but now thanks to Dr Boles treatment document we can 'nip the vomiting' in the bud to speak at the very first sign of -Kay feeling ill, simply by getting her to lie down and giving her a drink containing high levels of both sugar and caffeine. example 'mountain dew' or 'Red bull'. By doing this we can stop the vomiting but must keep giving the drink regularly over the next few hours. It is amazing to see how after this drink she can sit up and even walk a short distance, for example to the toilet and back. Although she may need help walking this distance she can accomplish this whereas before the drink she would also go into the 'conscious coma' that you speak about and quickly very quickly, within the space of an hour after the vomiting would start. What is scary is to look back and remember how sick she used to be before following Br Boles advice. Does Devin end up on a Bi-pap? This is how sick -Kay would become. After 4 days of vomiting, the breathing pattern would begin and she would end up totally dependant on a Bi-pap to breath, sometimes for up to a period of 5 weeks. Often in Intensive Care. We live in New-Zealand and do not have anything like the 'mito cocktail'. So I take -Kay regularly to a naturopath who has prescribed for her the equivalent of what I believe to be the 'Mito cocktail' minus carnitine as we don't have carnitine in NZ. . Re: Cyclic vomiting ? e, Can you explain more about the Kaussmal breathing that you say accompanies your sons vomiting episodes please. My daughter -Kay has unusual breathing during some episodes of cyclic vomiting. She becomes very breathless very quickly with only taking a few steps. Thanks, .Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 e, You are right about Dr Boles, he is just wonderful and I thank my lucky stars everyday that we have found him. It is really important to get in early with that Mountain Dew or Red Bull, which is what I use. I can remember several months ago when -Kay became ill at school after lunch, (1.30pm) and she didn't inform the teacher and then when I picked her up from school at 3.00pm she told me that she really felt sick and was unable to walk home which is only a five minute walk. Well by the time we reached home the vomiting had begun and despite 'Red Bull' was not stopping. I have a homoeopathic remedy 'Cocculus' which I then give often over the next couple of days when this happens. Luckily, 'cocculus' along with 'Red Bull' taken frequently did stop the vomiting in the end but it was harder to stop, much harder. As for the Bi-Pap. This is a machine which breathes for you. Rather like a respirator. I agree CVS is not to be taken lightly. I have seen -Kay so sick due to CVS with her body totally out of control and hospital staff at a loss to stop the vomiting or the other symptoms that go with it. Good luck with trying Devin on the Mountain Dew. Would be interested to see if it helps him as well as -Kay, but remember get in early. Hugs, . Re: Cyclic vomiting ? Don't you just love Dr. Boles? I think that's great that you are able to communicate with him even though you are half a world away! I do remember now that he did tell me that maybe Mr. Dew would help Devin once he started getting sick....early on though. (We don't see him personally, I've only emailed him once with a question). I have those ketones testing strips now, and at the first sign of any ketones in the urine, he's getting as much glucose as I can get in him! He does not end up on a Bi-pap. I don't even know what that is. *Ü* I'm glad that -Kay is doing better now with Dr. Boles recommendations. CVS/dehydrations is very scary, and nothing to take lightly. e *Ü*Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 Hi Tammy, I was sorry to read that has CVS but pleased to hear that you have it under control. Dr Boles has mentioned in his work that propanolol can be a preventive but since finding him we have been lucky enough to be able to control the episodes with the Mt Dew or Red Bull. Both do the same job as both have large amounts of caffeine and sugar. -Kay has only the one working kidney, she was born this way so I am eager to keep her off orthodox drugs if I can. You ask how much of the drink she takes. I encourage her to take as much as she can often. Sometimes this only amounts to a couple of mouthfuls or even a sip, but I continue to offer every 15 to 30 minutes until we have the cvs under control. This is really important on the first day and especially important in the first few hours. You mention that is autistic and that the autism would increase with the vomiting before you tried the propanol. This is interesting. I have an older daughter Amy who had cvs as a child and also showed autistic tendencies. I know what you mean by system shutdown. -Kay has also experienced thirst before an episode with constipation. One thing that I used to notice was that she would urinate often for up to 2 weeks before the vomiting would begin and then once it began she would stop urinating until the vomiting stopped. I now know this to be due to Dysautonomia which means a dysfunction of the autonomic nervous system. Dr Boles research includes studying the relationship of mitochondria with CVS and other types of dysautonomia. He mentions children with autistic (including Asperger) problems. . Re: Cyclic vomiting ? , My is 4 and has struggled with CVS since he was 15 months. He is currently on Propanolol twice daily as preventative. It has worked well for the most part. I had never heard of the Mt Dew. Do you give a certain amount? Is your daughter on preventative meds as well. is not at all able to let us know if we are going to have a problem. We used to know (before the meds) when he became more autistic and drank everything liquid, stopped urinating and stooling. It is like his entire system shuts down then the vomiting starts. We continue to have episodes of system shut down without vomiting. I also found it interesting that your daughter has lung issues with this as well. has had numerous positive chest xrays during a CVS 'cycle'. Tammy-Madelaine and 's mom OXPHOS defectPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 e, During the Kaussmal breathing part of CVS does Devin have low saturation levels? How do his lungs sound at this stage to the Doctor's? Has he had any exrays during the episode? Has he ever had a lung function test when well again? Sorry to keep picking your brains but I have been trying to figure this vomiting thing out now for some time and have found the excellent feedback from other mother's experiencing the same problems have helped me tremendously in my understanding of just why it is happening. Thanks very much, . Re: Cyclic vomiting ? e, Can you explain more about the Kaussmal breathing that you say accompanies your sons vomiting episodes please. My daughter -Kay has unusual breathing during some episodes of cyclic vomiting. She becomes very breathless very quickly with only taking a few steps. Thanks, .Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 Hi Jen, thanks for your e-mail. We certainly have something in common with -Kay also having MIDS along with her CVS and also a participant in Dr Boles study. Isn't Br Boles wonderful. I owe him my daughter's life as she was so sick and becoming worse before we found him. We live in New-Zealand and so little is known about CVS and even less about Mito disease. Each episode of vomiting was misdiagnosed as pneumonia when she first became ill. Each time -Kay used to be admitted into hospital with an episode of cyclic vomiting, approximately every 10 weeks, we were placed into a room where the episode was just aloud to run it's course. She was never given any zofran etc as her paediatrician did not believe it would help. Her paediatrician also told me that zofran was very expensive and was reserved for children with nausea after chemo therapy. He also explained that the Health Dept. had to give consent for it to be given to anyone other than chemo patients. Each episode ran for 4 days with an average of 47+ vomits resulting in the vomiting of blood. -Kay would be in a conscious coma and I hate to think what harm was being done to her one only working kidney as she would go for up to 5 days without urinating, even after they finally placed an IV in her arm/leg. During the vomiting her sats. levels would be okay and then once the vomiting stopped the sats would drop and she would be placed onto oxygen. In the early stages ie from age 4 years until approx 6 years the oxygen was sufficient but she slowly required more oxygen with each admission one day up to 15 litres and it was not helping. It was then after an argument with the paediatrician as I could see she was becoming worse each episode that further help from a larger hospital was sort. It turned out that the vomiting was triggering airway collapse due to the fact that she was born with a narrow/ floppy airway anyway and the oxygen was unable to get through so was placed on a BiPAP which held the airways open and oxygen was attached to the BiPAP machine. Anyway to cut a long story short we finally found Dr Boles. a correct diagnosis was made and her we are today with a healthy child who has not been in hospital for 3 years now due to the fact we now know the triggers and what we are dealing with and have learnt how quickly we need to get onto things once she starts to feel ill. Better stop here, once I start onto this subject it's hard to shut me up. Great to meet you, . From: LukeJenG@... To: Mito Sent: Tuesday, August 10, 2004 1:36 AM Subject: Re: Cyclic vomiting ? Hi. I'm talking about again...the one with the MIDS and the CVS. Her sats also often go down during her vomiting episodes....but I had always thought it was just the dysautonomia acting up during the crisis. We do use supportive oxygen at home as necessary. Of course, the autism prevents her from putting up with the O2, but we'll do it blow by, or sometimes the valium will be enough to get her to leave it alone. I have also been known to stand over her, holding the mask an inch from her face.... She doesn't wheeze or anything, her breathing just gets very rapid and ineffective. She also does this with migraine headaches, where we also use the oxygen. Sometimes, she desats in her sleep, for no reason that is known to me...and other nights she is fine. Jen Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 1996 Report Share Posted January 17, 1996 Hi e, Thanks once again for taking the time to reply and answer my questions. I wouldn't worry about asking for a exray as the hospital were always looking for pneumonia when -Kay used to be admitted with the vomiting. She was always diagnosed with pneumonia. I never did feel happy with the hospital saying -Kay had pneumonia with each admission before we found out she had cyclic vomiting from Dr Boles, as her lungs didn't ever show the pneumonia pattern and why should she have episodes of pneumonia every 10 weeks which always followed the same pattern. There were never any bugs found in her mucus or blood either but she was still diagnosed with pneumonia because of the breathing difficulties and low sats. Mother's instinct always told me different, and dysautonomia seems the likely cause especially after Dr Boles MIDS diagnosis. Great speaking with you and please keep in touch. Would love to know if Mt Dew or Red Bull helps Devin if you try it. Hugs, . Re: Cyclic vomiting ? e, During the Kaussmal breathing part of CVS does Devin have low saturation levels? How do his lungs sound at this stage to the Doctor's? Has he had any exrays during the episode? Has he ever had a lung function test when well again? Sorry to keep picking your brains but I have been trying to figure this vomiting thing out now for some time and have found the excellent feedback from other mother's experiencing the same problems have helped me tremendously in my understanding of just why it is happening. Thanks very much, . Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Darla, >To those who deal with cyclic vomiting, what do you see surrounding the >vomiting episode. I can almost always tell when Emilie is starting an episode. She definitely looks and acts different. She gets pale; that lasts for anywhere from 15 minutes to a couple of hours. Sometimes her eyes are dilated. During one streak where she threw up every day for a week, she ran a low-grade fever for about 15 minutes before throwing up. She will either be very quiet and drowsy or agitated and combative, saying things that don't make a lot of sense. After vomiting 1-3 times, she's usually back to normal in less than a half hour and can eat a meal and keep it down fine. She looks and acts like nothing happened. -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Darla, When had cyclical vomiting it would just hit her. There was not usually any indicator and she did not have alot of phlem-just throw up. She would be fine and then there it is and then be fine again. She was started on periactin and it stopped. Knock on wood she has not vomited in months! We actually tried ot ween her off and it started again sowe are on it for life! hope she feels better, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 My son's CVS is triggered by infections or overexertion. When someone in our house is sick with a cold or the flu, it's pretty much guaranteed that Devin will start an episode. However, it comes with little notice, as he always wakes up in the early morning already having thrown up in his bed usually before 5am. It continues for hours and hours, vomiting every 5-15 minutes. In between he is *excessively* thirsty, and will drink whatever he can get his hands on for a tiny bit of relief, only to throw up that much worse! At first he's pretty coherent, but by the time I see that it's not getting any better, he's usually doing that Kaussmal breathing, and it's time to get him to the hospital for IVs. Did you know there is a website for CVS with a message board? http://www.cvsaonline.org Blessings, e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi . The Kaussmal (I know I didn't spell it correctly) happens after Devin's been throwing up for quite a few hours and his breathing turns very shallow and quick. Then he'll have periods in between where he completely stops breathing. The doctors said it was because of the acidosis, and his body is trying to blow out some of the acid. His eyes get sunken and he turns ash white (which is difficult to do seeing as how he's biracial!) It all happens so quickly, and it's quite scary. I can't believe your daughter can actually get up and walk during an episode. That seems to be unusual. Most of the people I have heard about are totally incapacitated. Devin goes into a coma like state, and won't come out of it until the IVs have taken effect and he's suddenly good as new and ready to get into the *gigantic* bathtub at the hospital! *Ü* e Re: Cyclic vomiting ? e, Can you explain more about the Kaussmal breathing that you say accompanies your sons vomiting episodes please. My daughter -Kay has unusual breathing during some episodes of cyclic vomiting. She becomes very breathless very quickly with only taking a few steps. Thanks, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Don't you just love Dr. Boles? I think that's great that you are able to communicate with him even though you are half a world away! I do remember now that he did tell me that maybe Mr. Dew would help Devin once he started getting sick....early on though. (We don't see him personally, I've only emailed him once with a question). I have those ketones testing strips now, and at the first sign of any ketones in the urine, he's getting as much glucose as I can get in him! He does not end up on a Bi-pap. I don't even know what that is. *Ü* I'm glad that -Kay is doing better now with Dr. Boles recommendations. CVS/dehydrations is very scary, and nothing to take lightly. e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 , My is 4 and has struggled with CVS since he was 15 months. He is currently on Propanolol twice daily as preventative. It has worked well for the most part. I had never heard of the Mt Dew. Do you give a certain amount? Is your daughter on preventative meds as well. is not at all able to let us know if we are going to have a problem. We used to know (before the meds) when he became more autistic and drank everything liquid, stopped urinating and stooling. It is like his entire system shuts down then the vomiting starts. We continue to have episodes of system shut down without vomiting. I also found it interesting that your daughter has lung issues with this as well. has had numerous positive chest xrays during a CVS 'cycle'. Tammy-Madelaine and 's mom OXPHOS defectPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Hi , Thank you for the reminder to get the drinks in Devin early. Your advice was on my mind all day today, as we went to my husband's company picnic, and Devin had a blast on the moonbouncer things, and running around with the other children, mini golfing, etc...I gave him a glucose tablet in the middle of the day at some point (I don't know what it might do for him, but it couldn't hurt), then as soon as we got near home, we stopped at a store and I bought some Red Bull for both of my sons. Devin has done well so far tonight. He went to bed early, and is sleeping like a log right now, but the big test will be how he does when he wakes up in the morning. I am praying like crazy the Red Bull will help replenish and rejuvinate him! If it does, then we'll be keeping that stuff around for sure! So, thanks again for the recommendation! e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Red Bull and Mt Dew are loaded with caffeine & sugar- so if you do not have those available- sweet tea works also. Carmel colored sodas are loaded in fluoride, so aren't great for most kids. Cindy-GA Re: Cyclic vomiting ? Hi , Thank you for the reminder to get the drinks in Devin early. Your advice was on my mind all day today, as we went to my husband's company picnic, and Devin had a blast on the moonbouncer things, and running around with the other children, mini golfing, etc...I gave him a glucose tablet in the middle of the day at some point (I don't know what it might do for him, but it couldn't hurt), then as soon as we got near home, we stopped at a store and I bought some Red Bull for both of my sons. Devin has done well so far tonight. He went to bed early, and is sleeping like a log right now, but the big test will be how he does when he wakes up in the morning. I am praying like crazy the Red Bull will help replenish and rejuvinate him! If it does, then we'll be keeping that stuff around for sure! So, thanks again for the recommendation! e *Ü*Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi...just sharing. I have a daughter, , who is 7. She has been diagnosed with MIDS by Dr. Boles. She also has profound autism and CVS. We control the vomiting best with Zofran and valium. The caffine trick only helps if I catch it early enough, and since most of her episodes start in the wee hours of the morning, I almost never see it coming. However, a few times, I have thought the caffine to be helpful. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi. I'm talking about again...the one with the MIDS and the CVS. Her sats also often go down during her vomiting episodes....but I had always thought it was just the dysautonomia acting up during the crisis. We do use supportive oxygen at home as necessary. Of course, the autism prevents her from putting up with the O2, but we'll do it blow by, or sometimes the valium will be enough to get her to leave it alone. I have also been known to stand over her, holding the mask an inch from her face.... She doesn't wheeze or anything, her breathing just gets very rapid and ineffective. She also does this with migraine headaches, where we also use the oxygen. Sometimes, she desats in her sleep, for no reason that is known to me...and other nights she is fine. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 , I don't mind you picking my brain aobut this. Although there isn't much up there to pick, because I'm just so frazzled with all that I am learning about Mito and other things, my brain can't seem to store it all! *Ü* During the Kussmaul (I'm spelling it correctly this time) breathing and a CVS episode, Devin's sats do go down. I am looking at a lab report from this last hospitalization, and his O2 sats were 93.0 (95.0-98.0 being the norm) when we checked into the hospital. His lungs have sounded clear from what the docs say. We have never had an x-ray done during an episode. I guess they have never felt it to be necessary. I am thinking now that it might be something I'll mention to our specialist though for the next time. What might they be looking for, do you know? We've never had a lung function test either. For Devin, as soon as it's all over, it's really over! It's amazing to see him bounce back after being so sick. He's just like brand new again, and we've never really seen any residual effects from any event. But I keep thinking, how many times can such a tiny body (he's 5.9yrs old and barely 40lbs) suffer a metabolic acidosis and not have any lasting effects? I don't know. All I can say is I feel your frustration! e *Ü* Re: Cyclic vomiting ? e, During the Kaussmal breathing part of CVS does Devin have low saturation levels? How do his lungs sound at this stage to the Doctor's? Has he had any exrays during the episode? Has he ever had a lung function test when well again? Sorry to keep picking your brains but I have been trying to figure this vomiting thing out now for some time and have found the excellent feedback from other mother's experiencing the same problems have helped me tremendously in my understanding of just why it is happening. Thanks very much, . Quote Link to comment Share on other sites More sharing options...
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