Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Google the words " Creatine " and " aggression " . I wouldn't use it, especially in a child big enough to cause physical harm. I've seen what it can do. Practice random acts of kindness... From: Janice <jscott@...> Subject: [ ] Crosspost: Creatine ApraxiaDyspraxiaBiomedSupport Cc: chelatingkids2 , Date: Sunday, January 11, 2009, 8:52 PM Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... Thank you, Janice Mother of Mark, 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 I know that it can be misused and like anything, too much is never good. But, I have seen first hand what can happen even when it's controlled. My nephew is 12 with low muscle tone, focused most in his abdomen and chest. My sister started him on creatine and it helped, not a whole lot, but it did a little. However, he turned into the most irrational person. He was extrememly irritable, and after about 2 1/2 months was smashing holes in walls, beating on the animals and threatening everyone. My sister talked to the doctor and since the only recent change was the creatine, they pulled him off of it. He was back to normal within weeks. I have heard good things about young kids and creatine, but it seems that as a kid gets older, it might not be such a good thing. Practice random acts of kindness... From: Janice <jscottinterbaun (DOT) com> Subject: [childrensapraxiane t] Crosspost: Creatine ApraxiaDyspraxiaBio medSupport Cc: chelatingkids2, @groups. com Date: Sunday, January 11, 2009, 8:52 PM Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... Thank you, Janice Mother of Mark, 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Joy Amen to too much is never good. This group just learned that the hard way. I don't know much about creatine but the point I want to make is that the dosage that is recommended for adults probably isn't the pediatric dosage, and in addition the pediatric body/brain doesn't necessarily react the same way as the adult. Do we know how many years children in our population have been on this? Even though I was only able to access the one page -thought that if anyone is interested they can find the rest of this 3 page article it's quite eye opening. I appreciate that this is an adult using a higher dosage long term -but again this may be a 300 pound man and a " low dosage " for him could be a high dosage for a child. He developed the very serious acute compartment syndrome. Acute Quadriceps Compartment Syndrome and Rhabdomyolysis in a Weight Lifter Using High-Dose Creatine Supplementation from Journal of the American Board of Family Practice Stacey J. , CAPT, USAF MC, Department of Family Practice, 6th Medical Group, MacDill Air Force Base, Fla. Introduction Creatine, a nutritional supplement marketed to increase strength and muscle mass, is the most profitable performance-enhancing agent used among athletes today, grossing more than $200 million in 1998.[1] As its use increases, especially among high-school athletes, the concern about its safety mounts. Because creatine is a dietary supplement, it is not regulated by the Food and Drug Administration, and distributors are not required to give any specific dosing recommendations. Researchers recommend a loading dose of 20 to 25 g/d for 5 to 7 days followed by a maintenance dose of 2 to 5 g/d for oral supplementation. [2] Although studies investigating the benefits of creatine report no evidence of side effects, most of these studies observed patients only during the loading period. A few studies observed patients during the maintenance period, but the longest study lasted only 10 weeks.[3] There are no studies investigating the side effects of creatine supplementation beyond 10 weeks or with higher maintenance doses. Many distributors and sources in the popular media advocate a higher dose than recommended. Furthermore, a survey by Juhn and colleagues 4 found that 39 of 52 athletes who supplemented their diets with creatine exceeded the recommended maintenance dose. The following case of a weight lifter who developed acute compartment syndrome raises suspicion regarding the safety of high-dose, long-term creatine use. Case Report A 24-year-old previously healthy man came to the emergency department complaining of severe bilateral thigh pain on awakening, which gradually worsened during the day to the point that he could no longer walk. On the day before his visit, the patient participated in approximately 3 hours of lower extremity exercise. For the preceding 8 days, he had not exercised because of a minor muscle strain. The patient had been an avid body builder for approximately 5 years and reported that he had performed similar lower extremity exercise without any problems. For the past year he had been using oral creatine supplementation at five times the recommended maintenance dose (25 g/d). The remainder of his medical history was unremarkable except for occasional alcohol use (average of 4 drinks per month). The patient denied use of tobacco, anabolic steroids, illicit drugs, or other ergogenic supplements. Review of systems was only notable for onset of gross hematuria shortly after his arrival at the emergency department. In the emergency department, his blood pressure, respirations, temperature, and heart rate were normal. Findings on his physical examination were normal except for bilaterally tense, edematous anterior thighs and severe pain with any degree of knee flexion. Initial laboratory studies were serum sodium 149 mEq/L, potassium 4.2 mEq/L, blood urea nitrogen 22 mg/dL, creatinine 1.0 mg/dL, creatine phosphokinase 131,000 U/L, and a calculated serum osmolality of 311 mOsm/L. Urinalysis showed proteinuria (31), hematuria (41), 10 to 15 red blood cells per high-power field and 80 to 100 red cell casts per high-power field. Of note, serum calcium and phosphorus and urine myoglobin were not measured. The patient had no previous laboratory reports on file for comparison. Acute compartment syndrome was suspected and confirmed by anterior, medial, and lateral quadriceps compartment pressures of 34, 34, and 32 mm Hg on the right and 17, 15, and 15 mm Hg on the left, respectively. The patient was admitted for treatment of acute quadriceps compartment syndrome and rhabdomyolysis and underwent emergency bilateral tricompartment fasciotomies. Left fasciotomies were done despite normal compartment pressures because the patient had severe symptoms on the left. Perioperatively, the rhabdomyolysis was treated with aggressive hydration with crystalloid and urine alkalinization and then diuresis. During the first several days of hospitalization, the patient's creatinine levels began to rise, and he developed edema of the lower extremities extending up to the flanks. On hospital day 6, he developed increasing dyspnea and hypoxia. The patient developed a new grade 2/6 systolic murmur at the left upper sternal border. A chest radiograph showed cardiomegaly, pulmonary venous congestion, and bilateral effusions. An electrocardiogram showed a left axis deviation of -38° and incomplete right bundle branch block. An echocardiogram showed an ejection fraction of 48%, concentric left ventricular hypertrophy, and mild mitral and tricuspid regurgitation. The pulmonary edema was believed to be secondary to iatrogenic fluid overload, although it was unclear whether the echocardiogram findings were preexisting or temporarily associated with the acute illness. During the remainder of the hospital course, his pulmonary edema gradually resolved with aggressive diuresis. The rhabdomyolysis and acute renal failure resolved with hydration and urine alkalinization with a maximum creatine kinase of .>800,000 U/L and creatinine of 3.1 mg/dL. The patient required aggressive inpatient physical therapy until he was able to walk independently. After a 22-day hospital course, he was discharged for continued outpatient physical therapy. At a 6-month follow-up visit, the patient had returned to work but was still undergoing aggressive physical therapy and had achieved approximately 60% of his premorbid quadriceps strength. At that time an echocardiogram showed high-normal left ventricular thickness, ejection fraction of 55%, and mild right ventricular enlargement without further evidence of mitral or tricuspid regurgitation. A follow-up echocardiogram at 12 months again showed mild increased left ventricular thickness, which was within normal limits when calculated with respect to body surface area. The patient is no longer taking creatine or any other performance-enhancing agents because he believes that use of creatine led to this condition. Section 1 of 3 Continue J Am Board Fam Pract 13(2):134-137, 2000. © 2000 American Board of Family Practice http://www.medscape.com/viewarticle/405772 ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Not sure about that, but I learned today that a low creatinine could an that your child has a viral infection. > > Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? > > I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... > > Thank you, > > Janice > Mother of Mark, 14 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Joy, Thank you so much for your feedback. I'm still in the studying phase and what I have read does indicate that creatine is contra-indicated in some individuals. Be assured that I will continue to research a whole lot more before even considering supplementation. I know that some kids are under-methylaters and others are over-methylaters and this does make a difference in reaction to these types of amino acids. Again, I really thank you for taking the time to respond to my querries. Janice Mother of Mark, 14 [childrensapraxiane t] Crosspost: Creatine ApraxiaDyspraxiaBio medSupport Cc: chelatingkids2, @groups. com Date: Sunday, January 11, 2009, 8:52 PM Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... Thank you, Janice Mother of Mark, 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 No problem. I am the same way. You should have seen all the checking I did before putting my son on melatonin. Practice random acts of kindness... From: Janice <jscott@...> Subject: Re: [ ] Crosspost: Creatine Date: Tuesday, January 13, 2009, 4:13 PM Joy, Thank you so much for your feedback. I'm still in the studying phase and what I have read does indicate that creatine is contra-indicated in some individuals. Be assured that I will continue to research a whole lot more before even considering supplementation. I know that some kids are under-methylaters and others are over-methylaters and this does make a difference in reaction to these types of amino acids. Again, I really thank you for taking the time to respond to my querries. Janice Mother of Mark, 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 My son tested low in creatine. He never had low muscle tone in his torso but was severaly apraxic - I believe above the neck. No speech until 4 1/2 when I introduced fish oil. Still to this day shakes his head " yes " very awkwardly. He is also a great responder to vitamin E. Our DAN! was okay with trying it. Dr. Bock talks about creatine and has one sentence in there that mentions it can also help with speech so I decided to give it a try. I started with creatine ethyl ester (supposed to be a more absorbable form) - 1250 mg. He gets it 2 X day. His speech improved noticeably overnight. We have continued and have not noticed any negatives. He will be 7 in March. -- In , " Janice " <jscott@...> wrote: > > Joy, > > Thank you so much for your feedback. I'm still in the studying phase and what I have read does indicate that creatine is contra- indicated in some individuals. Be assured that I will continue to research a whole lot more before even considering supplementation. I know that some kids are under-methylaters and others are over- methylaters and this does make a difference in reaction to these types of amino acids. > > Again, I really thank you for taking the time to respond to my querries. > > Janice > Mother of Mark, 14 > > > [childrensapraxiane t] Crosspost: Creatine > ApraxiaDyspraxiaBio medSupport > Cc: chelatingkids2, @groups. com > Date: Sunday, January 11, 2009, 8:52 PM > > Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? > > I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... > > Thank you, > > Janice > Mother of Mark, 14 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Joy, The only problem that I have with the sports literature is that those Body Builders are taking 10 to 20 grams a day when the RDA is actually 2 grams a day. How do you trust those stories when people are purposely doing 'stupid' things with supplements? They are purposely taking potentially toxic amounts. I read about creatine in Dr. Bocks book and have since been studying it. What I have found is that it does help kids with neuromuscular disorders who test out low in creatine with hypotonia BUT.... if you have a problem with the creatine transport gene then it will not help or provide benefit. The recommended dosage by Kirkmans supplements is 500 mg, 1 to 4 times a day. Do you mind me asking about the negative stories you have heard? Were they with 'our' kids? I would be interested in learning all I can before trying this supplement. At this juncture Mark is probably the complete opposite of agressive. He is very laid back in that low-toned, hypo way..... Janice Mother of Mark, 14 [ ] Crosspost: Creatine ApraxiaDyspraxiaBiomedSupport Cc: chelatingkids2 , Date: Sunday, January 11, 2009, 8:52 PM Has anyone had success using creatine in addressing hypotonia/low muscle tone? If so, what were your observations and how old was your child when you started? What were the dosages and do you have any product recommendations? I am so tired of dealing with low muscle tone. I realized today that I have been teaching my son " daily " to write for the past 8 years! OMG! I really need a life and hypotonia is holding us ALL back in so many areas. Both he and I are sick of it and I'm on a mission..... Thank you, Janice Mother of Mark, 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Janice, Sorry if you've already said this over and over I don't read every digest. Just wondering what your experience with carnitine has been. I have a hypotonic son with potential inherited issues of fatty acid metabolism due to polio in a grandparent. I would do anything to help the hypotonia on every front including supplements (have read all your great posts on exercises to help) and just wondering which supplements you had found most helpful to date specifically for hypotonia. Thanks catherine (UK Mom to Nic 13yrs, semantic pragmatic language disorder, dyspraxia, hypotonia) Quote Link to comment Share on other sites More sharing options...
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