mom2ck

I don't remember exactly what supplements the dr. recommended but was thinking it was a b vitamin, taurine, l-carnitine and the 2 I already mentioned. However, I can't verify this as they still haven't sent me copies of the dr's notes. I requested copies again and want to review them before deciding on anything. She wants another $400+ test ran which really aggravates me as it seems like it is a money game to me. I already owe almost $1000 of which I am trying to pay. IDK, maybe I need to find another DAN dr. Don't want to keep skipping around. Like all of you, I want to figure out his triggers and give him the supplements he needs.

Ok, My son has seen so many dr's and a DAN dr. who wanted to start him on 5 different supplements. We agreed to start him on 2 of them, IP-6 and some time of magnesium. Both have been good for his anxiety/anger issues and defacating. I also wanted to start him on l-carnitine as I was told it would help with his ticcing too. Does anyone have any experience with this or know what the dosage would be for an 8 year old who weighs 85 lbs. At this time I am not taking him back to the DAN dr. It is too costly and I still don't have answers I was looking for. He has been seeing a chiro for allergies and thinking about the possibility of seeing an allergist to do testing as the blood allergy test didn't give us many answers either. Thanks Christy

Yes, it is NAET. And she treated him for corn. He didn't have to stay home from school, but my husband nor I thought we could trust him to not get something that had corn in it. You have to not have it for 25 hours or the treatment won't work as I understand. It was just easier to stay home and monitor what he ate. I guess my questions are, does this work for many? Is it long-lasting? Do you have to avoid these foods afterwards? How long to notice any results? And if it is a yeast problem or leaky gut syndrome, is this treated by probiotics? I just don't know much about this area other than what I have read on here and what I learned at the Dr's. office. Just so many questions, still. He is on IP6 and Oxy powder that was prescribed from his DAN dr. We need to go back and see her too, but not sure I want to. We started with her doing an IGg and IGe test which she thought wasn't correct as it came back with little allergies. So, we had to go back through a very aweful time of a blooddraw. She sent the blood back to same co for a test and using the other for a $400 test without telling me how much it was and not knowing if my insurance would pay. Also this same test had been run 2 months prior by the psychiatrist. I gave her the information. Now she wants another $400+ test for Vit. D. I feel like she just wants test after test. I don't have the $ to keep doing this. Just don't feel the trust now in this Dr. as I had wrote the check for a different test $149 and never got that test. Now she doesn't want that one but a different one. I did get my $ back for it, but I want information up front. Another thing, when I go in or have a telephone appt., I have to repeat things that are in the file. And then she recommended Clonidine and sent me information on it after I told her he would never be on it again! I specifically told her I wanted supplements as we were done with medicine. I guess just aggravated with her and now wondering if NAET is the answer or what I should do. Sorry for rambling, but lots of thoughts going through my mind Christy

I had a referral to a chiropractor/naturopath dr. from a friend for my son as I have been questioning the allergies. We had done a blood allergy test with the DAN dr. and it didn't show much. However, she and I both suspected their were allergies. Anyhow, we went to the appt. yesterday and through the muscle test she tested for the basics. In the basics, he came back sensitive to corn, mold/yeast, wheat, eggs, and one other. She said because he has so many she thinks there is more to it. She wants to do the test to test for Gluten and DNA gene. She said she believes he has candida or leaky gut syndrome. I have read about these condidtions on here, but am a little skeptical. I believe she is wanting to help people; She has been in this business for 25 years. However, it is just hard to take all of this in right now. And when others ask, esp. my mom I hate to even tell them as people don't understand and want explanations. I am tired of explaining! She treated him for corn yesterday which was also weird. The whole time he was holding the corn vial he was ticcing non-stop. So, today I kept him out of school so I can watch everything he eats and drinks. He was very angry with me last night, but has came around today as he got to stay home from school. I asked about how long it lasted and the way they acted if it works it works forever. Again, just don't quite understand. Can anyone help me understand all of this a little better so I know that I am doing the right thing and not just wasting $. Thanks Christy

My son was already ticcing before starting any adhd medicine. We tried focalin xr and his tics worsened. We then tried straterra because his ped. said it was the only med. for adhd that wasnt suppose to make tics worse. I can say they didnt really worsen, but didn't get better either.

Faith, I figured you would reply as you have replied to many of my previous posts. It seems we do have a lot in common with our kids. Thanks As for Cade, we started out seeing a Ped., then went to a chiro, then a child psych, then a comprehensive eval by The Autism Program (includes child psych, speech path, and OT), and now a DAN. With each one we got a little more answers. I can say in the last 3 1/2 years since the first diagnosis of ADHD, tics and OCD we have came a long way. Now it is mainly AS. But, it has been a long 3 1/2 years!!! It just seems with all the medical advances it shouldn't take this long to find out something. From all the talk on here about a DAN dr. and allergy tests, we had high hopes, it would finally be the answer. In 3 1/2 years, we have tried numerous medicines some worked ok and some not at all. We also tried Natural Calm & Fish oil and also a limitation on hfcs. He has seen a speech path on a regular basis for 2 years and an OT for the past year. He also sees the school social worker. I realized as his speech improved so did his eating habits. We still have many texture issues, but they have gotten so much better. His speech teacher is awesome!! Now trying to get OT more often. Like all of you on here, we want the best for our child and also want to make life a little easier for him and our family. We have been the med route and really don't want to go back to it. We prefer the natual treatments. But, it is time consuming and expensive. Now I know why so many people just want meds. They want a quick fix or don't have the time/money to do it. However, we feel a more natural way is best and that is why I like to talk on here.

We finally got a diagnosis of Aspergers back in Aug. They left the prior tics disorder and ADHD diagnosis on there as they didnt specifically check for those. Even though he has many sensory issues and was seen by an OT, they didn't add SPD to the diagnosis. I have since read "Out of Sync Child" which by the way is awesome. Thanks for the recommendations from the many on here. I see my son in so many ways being SPD. Does this go hand in hand with Aspergers? Are the tics he has been experiencing really Sensory related? I read finger flicking, arm flapping and others are all part of the visual sense and movement. He definately shows tactile issues and some of the others as well. Should we ask for a diagnosis by an OT? Also saw where SPD can be caused by birth trauma. He had the cord around his neck and was purple when he came out. As far as we know, no oxygen was given. Calling to get birth records this coming week as those are the only medical records I don't have. We started seeing a DAN in Oct. and have since ran a couple of tests on him. The allergy tests came back with little allergies. She said that she has had that happen before to others when they were really allergic/intolerant but it didn't show because the immune system is so out of whack. With the other boy, it showed a year later once they started getting him on the right track. Cade is taking magnesium of an evening for constipation and defecating problems. That has helped immensely and we have had less accidents. He is also taking IP6 (inositol) for anxiety/anger issues and was also taking pycnogenol for concentration. But, she discontinued it as it wasn't helping. Also wanted to start 2 others, but I wanted to introduce them slowly. She has also recommended magnesium baths and cream like I have read here before. We did the baths before, but didn't seem to help. Right now I am kind of aggravated as I thought going to the DAN dr. would give us the answers we were searching for. It is costing a lot of $ which is hard to do. The tests didn't give us any answers. Now, more trial and error.

Our new DAN dr. sent in bloodwork to Genova labs for a IgG and IgE tests for food, mold, spice,and inhalants. The test results came back with low results. She said she usually uses metramatrix and knows they are reliable and can interpret their information. But, she deosnt' believe this test had correct results. She said she sent off 3 different kids at the same time and they all came back with similar results. I too don't think it is right as it showed no inhalant allergies. I live in the midwest and we all suffer from allergies!!! These tests were much more affordable at $149 for the complete test. But, as she said just because something is on sale doesn't mean it is worth it. So, we drew blood yesterday for a comprehensive test and now I don't think she is sending it because of this issue. She wants to make sure the money is well spent. Very aggravating!!! Anyone else have experiences with them?

After wanting to get my son into a DAN dr. for months now, we finally had the appointment today! A couple of weeks ago after going to his child psych, we decided to take him off of meds. He started risperdal back in Dec. of 08 and after a problem in Jan/Feb we reluctantly continued the medicine with a lower dosage. After just about 6 months of use he had gained a lot of weight... about 20 lbs. The child psych and myself decided it was time to try something else. Her recommendation was a new drug not yet approved for children...Hello, not for children. Anyhow, she apparently didn't know much about the drug as she didn't know it was an encapsulated tablet that couldn't be broken so he couldn't take it because of the strength. So, then she said Abilfiy or molindone. Well both can cause TD and Abilfy is over $500 a month. Our insurance doesn't cover. So, we gave him the last of the risperdal and made the call to the DAN dr. once again. Today, we went to the appointment. I was thoroughly impressed. She did a physical on him like no other doctor has ever done before. She immediately found spots on his nails that leads her to believe he is zinc deficient. She said redness of outer ear and face shows allergies. She also looked at his mouth for bacteria, did a ear tuning thing to see if he could hear it, checked to hear all four chambers of the heart, did reflex on knees and on a couple places on feet, did a blue light test in the dark to check the skin for spots, etc. It was all very cool. She then did some OT stuff on him with his hands trying to "flip pancakes" and a strength test which was low. She had him do different jumps and of course skipping. From all of her findings today she thinks there is a mitochondria problem. She also talked about a problem with the stomach. We were able to do a blood allergy test today and next appt. will do a test that requires fasting. I believe she said something with Amino acids but I am new to the testing world and not sure. The appointment was way expensive! But, I feel good about it and hope we are moving in the right direction.

When my son took it he was on the generic as we also found the real Claritin to be expensive. The ingredients are the same and we didn't see any difference in using the generic so that is what we stuck with. I see others say it makes their tics worse. Do you think it could also cause tics? My son has been off of it for sometime, but he was on it when we first noticed the tics. Just wondering if this could be the missing link.

I believe he was on .025 if I recall correctly. I would have to look back at his medicals to be sure. I know it was aweful for about 3 or 4 days and I couldn't handle it any longer so I took him off of it. Thanks for the info on Encopresis. I looked at it and think it could be the case. He does have a hard time when he goes to the bathroom. But, then again, I notice when he eats a greasy meal, he usually has to go to the bathroom within minutes. When he gets McDonalds (which is rare), chicken mcnuggets are the worst. Usually before we get out of the restaurant or shortly thereafter he has to go to the bathroom. So, maybe trying a stool softener might help.

When Cade was on Clonidine, he took it of a night if I remember right and it was a very low dose...smallest they could give him at the time. He had anger issues previously, but during this time, they escalated. He also was falling asleep in the middle of the afternoon which he had never done before. As for his height, he is overweight now. For his waist, he would be in size 14 jeans. We were able to find 10 Huskies in one style of Old Navy to fit him. His karate clothes I bought in May that were big on him at the time, now 3 months later don't fit. His shirt and pants are too tight to get on. So, yes, the weight gain is a huge issue. He is only 8 years old. Risperdal was to lessen the anger issues and the tics. He continued to tic throughout the time, but it lessened greatly. He has had all kinds of tics. First that we noticed at 5 1/2 was an arm extension, then lip licking, head from side to side, mouth opening, other facial grimaces, eye blinking, smelling fingers, flapping arms, throat clearing, grunting, sniffing, coughing, spitting and possibly punching/kicking (could have been karate moves). Pre-K teachers first noticed a rocking motion when he was 5. About the same time he also went through a 3 month stuttering phase which we now think was a tic as it came and went like all the rest have. He has also had a bowel issue for sometime which some say can be a tic. We have about 10 days of meds left and weaning him off of it. Need to figure out something quickly to not revert backwards.

Almost a year ago, I thought my son was Aspergers. Then he was dx as PDD by a child psych. This past month a team from the Autism Program has dx my son as Aspergers. It was a great relief to know what I had been thinking for sometime was finally confirmed. It was also nice to get a good explanation of the disorders on the Autism Spectrum and how they are different from Tourette's. I am happy to say the Dr's said we were on the right track with the services he is currently getting at school: speech therapist, social worker, and occupational therapist. They only had a few suggestions for us. They referred us back to our child psych to discuss medication issues and treatments. Today, we saw the child psych and am now searching for meds/treatments again. Son has been on risperdal for the last 9 months. After playing with dosage and the past use of magnesium, he is finally doing well. His temper tantrums have lessened, his sensory issues have improved immensely, and he is doing better in school with completing assigments and starting to play more with other kids. His tics have subsided in the last month. Everything seems great, right? Well they are so much better, but he has gained an enormous amount of weight and continues to gain. In the last year, he has went from 60 lbs. to now 85 lbs. When we first began the medicine, there was little difference. Then the weight started to come on with most of the gain in the last 4-6 months. So, we are looking for another alternative. Dr. first talked about a new med. that hasn't yet been approved for children so therefore the dosage is too great. Dr. recommends Abilify, but it is over $500 for a 1 month supply. So, her only other idea is molindone. But, then she tells me it can cause tardive diskinesia but at the low dose he would be taking it is not likely. I don't like those odds. I can't spend the $ to try Abilify. Clondine caused anger and extreme tiredness. Risperdal caused weight gain. So, what is next? He is finally to a point where he is functioning well and not ticcing. He is experiencing bedwetting and problems with defecating or not making it to the bathroom in time. But, overall he is so much better. Hate to start over again!!! Thinking it may be time to call it quits on the meds but without them he gets very angry easily and concentration is low. I looked into a DAN dr. that is 90 minutes away but found her prices to be very high. However, now wondering if this is the path we should start. Suggestions?

I had my son seen by his pediatrician Friday. They only did a urine test and said there was no sign of infection or diabetes. She didn't have an answer as to why he is wetting often or the bedwetting. She told me to wake him in the night and make him go to the bathroom. It is just odd that he has been trained for years and only recently started having trouble with this. He is 7 1/2 years old. And I really don't know what his urine is like when going to the bathroom. I know that when he wets in the bed, I can tell as soon as I hit his room from the odor. Christy

I accidently posted this is autism/aspergers as well. I have recently noticed my son's urine smells aweful. A couple month's ago we were having a problem of him wettting the bed just about every night. We tried limiting liquids after a certain time, making him go before bed and even chiropractic. But, it didn't really help. I can say now it is better with the occasional wetting. The problem for the last few weeks his urine smells aweful. When I go in his bedroom, there is an odor. We removed his mattress and I could still smell it. I then found the wet underwear from the night before. It was all I could do to pick them up. Again last night...same thing. So is there a connection with any of this? Should I take him to a dr or just give him more water/cranberry juice? Thanks

I have recently noticed my son's urine smells aweful. A couple month's ago we were having a problem of him wettting the bed just about every night. We tried limiting liquids after a certain time, making him go before bed and even chiropractic. But, it didn't really help. I can say now it is better with the occasional wetting. The problem for the last few weeks his urine smells aweful. When I go in his bedroom, there is an odor. We removed his mattress and I could still smell it. I then found the wet underwear from the night before. It was all I could do to pick them up. Again last night...same thing. So is there a connection with any of this? Should I take him to a dr or just give him more water/cranberry juice? Thanks

We started our son on nautral calm about 3 weeks ago. We feel like it is helping him. I give him 1/2 tsp (approx. 100 mg) of an evening as when I gave it to him of a morning with his meds he fell asleep numerous times. We think that had to do with the meds and are decreasing it to hopefully take him off. We also started him on carlson fish oil a week ago. I am mixing it in with the natural calm of an evening and he takes it. I have been giving 1/2 tsp of it as well. Not sure if it is helping or not, but it hasn't yet caused any increase of tics like so many of you have reported. Is this the right amount for him? He is 7 years old and weight about 65 lbs. The bottle says an adult take 1-2 tsp a day. I have been taking 1 for health. I do not have tics, but lots of other issues that it is suppose to help with. I am looking into a DAN dr. now and hopefully will be seeing her in the next month. But, for now am doing it on my own.

This may sound weird to some of you, but I was wondering if there is a natural vitamin/herbfood company that does direct sales? I have sold products for 3 different companies through the years and currently sale for Pampered Chef. However, I am finding my passion right now is learning as much as I can about different vitamins and therapies to help my son. I am also learning a lot more about foods with no preservatives, gluten, colorings, high fructose corn syrup,etc. By day I am a PE/health/business teacher and nutrition has always been something I care about. Unfortunately, where I live, in a rural country setting, few people know of these issues. Few people have been educated about them. We don't have a local natural foods store...it is 2 hours away. And we don't have a vitamin store other than what you can get at Walmart, Kmart and GNC. I am finding people are receptive to the idea, but just don't know enough about it. So anyhow, I would like to join a company, become a nutritional consultant or dietitian or maybe even start a company. Any ideas or thoughts? Thanks Christy

Yes, he was on clonidine for a few days and fell asleep and got sick from it even on the lowest dosage. Didn't want to continue that!

I recently had a thread of clonidine and natural calm. But, then I realized whoops he isn't on Clonidine (it was one of the last ones), crazy me. He is on risperdal. Anyhow, my son was sick with a cough and fever the end of Jan. The 1st of Feb. we increased his risperdal dosage from .25 mg bid to .5mg bid because it wasn't helping him. His child psych wanted to increase it before saying it doesn't work. Well we actually took a few days of increasing before we were at the .5mg bid. We also started natural calm. Apparently it was way too much for his little body. He fell asleep the very first day in the afternoon. We attributed it to his sickness and not feeling well as he was also taking Robistussin. After stopping the Robistussin, he was still falling asleep at school and early in the evening. So, we backed off on the magnesium. He stayed awake for the most part. Then last week he had a headache/earache on Wed. and again on Thurs. His teacher called me to come get him as he was in a lot of pain. I took him to his pediatrician who checked him thoroughly and found nothing. She knows of his sensory issues and said maybe it was just that. She gave him some ear drops to help soothe it. Also, said we could do an antibiotic if I wanted to as she could telll he was in a lot of pain. I declined and told her we would check back in a couple of days. In the meantime I called his child psych to see if it was the med causing it. Her nurse called back the next day and said that it should not be causing the headache/earache. She also told me he shouldn't be taking magnesium unless he was defecient. I told her we wouldn't know that because no one has ran a test. She said they could next time we came in. Anyhow, I was really angry because they pretty much told me it was the magnesium and I shouldn't give it to him. After only a day off the magnesium we saw tics worse as well as frustration and argumentative. To add to it, yesterday I was looking at a med book on prescriptions and one of the occasional side effects of risperdal is EARACHES! This really aggravates me when a Dr. doesn't know the side effects even if they are only occasional. So, over the last few days we have lessened his med and taken him back down. The headaches/earaches have went away. We also started magnesium again. My dh and I are going to completely take him off the meds slowly and try just the magnesium as this child psych doesn't seem to know.

My son has recently been falling asleep and being very tired in the afternoon. This is very unusual for him. I am trying to figure out what exactly is causing it. I recently started him on natural calm (got it instead of kids calm because it was unflavored and whole family can take). We also changed his clonidine dosage to 1 mg a day (.5 morning and .5 night). Plus he was sick with a deep cough and fever for one day and taking robitussin for 5 days. I at first attributed it to his sickness which started a week ago Thurs. because the other 2 factors had not been changed. Then we started the natural calm and doubled his dosage on Sat. (I think). Sun. he slept most the afternoon. He again fell asleep after school on Mon. and slept the rest of the night. Tues. he made it to his normal bedtime. Then, Wed. he fell asleep about 6 p.m. and slept all night. His teacher said he also fell asleep in class on Wed. She said she let him sleep because she could tell he didn't feel well. So, now, just trying to tell if the sleepiness is caused by the supplement or the meds. I can say his anger and frustration is much better. He also praised me about my cooking and ate food he has refused so many times before. His dad and I were floored! He still has a verbal tic, na sound, but no body tics. His neuro raised his meds after me telling her the meds aren't working and he actually seemed worse than when we put him on them. Like another poster, she wants me to continue to raise them over the next month. However, I am not going to comply as I was very reluctant to even go to the 1 mg. Now, I'm thinking I should have told her no and just tried the natural calm as I don't know what is working. But, I now have $90 of meds to use. Wondering if I should lower meds again and see if he does as well. Confusing! One good thing, he likes the taste of the natural calm with just a little bit of added sugar it tastes like a weak warm lemonade. I also crush the pill and put it in so he has just 1 drink.

Why did you stop the kids calm? Are the two together bad for his system? I only ask because we recently started our son on natural calm and also raised his dose to .5 morning and .5 night.

Thanks for responding! He has many sensory issues and high anxiety. When we went to the Neuro she asked what were the top 3 things we saw as issues. They were tics, anxiety,and concentration (mostly due to tics)

Our chiro recommended using standard process supplement which we tried. However, even though it was a very small amount, he still figured out I was putting it in his pb&j. So, we discontinued it because it was so hard to disquise. She also recommended nordic naturals for him and he tried the little strawberry balls, but wouldn't take them. On iherb.com I see they also have a liquid. Has anyone used it or have any feedback for it? I also see some have used Carlson fish oil and say it has no aftertaste. Which one in particular? I am also looking for some fish oil myself as I know many Dr.'s recommend it for women. Dr. Oz on Oprah (my mom watches it) says women should have 1 gram daily. Thanks

I bought some epsom salt after reading here about the benefit for tics. The package says 2 cups per gallon of water. I see Chemar does 2 cups of epsom salt in a bathtub. So, what seems to be the best amount of epsom salt? How many times a week do you do them? Also I see you should wash before hand and rinse afterwards, right? I was just planning on putting it in his water and not telling him. But, he usually washes at the end. So, maybe I should have him shower first and then soak and play in epsom salt bath. He still loves to play in the bath most nights unless there is a show he wants to see coming on. Thanks