mom2ck

We are planning on doing the urine and stool test as those are both ones we have been wanting. Hoping to get one done this week. I also think it is just too much too fast. I will put a call in to the Dr. tomorrow, but my thought is to go back to what his body was use to a few days ago and add one at a time to see how he reacts. Husband and I were just talking about it again. The other issue is this week is also state testing at school so all the interruptions and changes of schedule are also prob. causing issues. Then, this next week he begins a new school. So much going on for his body.

Ugh! I'm really afraid I have screwed up royally with my son's treatment. We had been seeing a psychiatrist who also is DAN certified. Son was on supplements recommended by her. They were magnesium, IP6, D3, and theanine. Was aggravated with her as she wanted more tests that required blood draws. Son wouldn't go back as he was terrified from the last 2 they did. So, I had also read about an internal Dr. who used to be DAN, but has went beyond that. She uses 1 of 2 bioenergetic feedback systems in the USA to evaluate. Through this machine she is able to put in supports and figure out what will help the different issues within the body. I was very hopeful this would be the answer as she is very knowledgable on biomedical science and she also has an autistic son. But after spending $500 on the initial appt and almost $400 on supplements and another $200 on Genova test kits, I feel like we are worse off than when we went there. Plus, we still have a urine test and stool test to do that are $129 and $149. We aren't to go back for 8 weeks to follow up after tests are completed. That appt. will be $250 plus supplements. He was taken off his previous supplements and put on the following: digestive enzymes, D3 with K2, B12, Nordic Berries, Co-Q-10, Spagyric Greens, Kidney Tone, Drainage Tone, Liver Tone, Barlean Total Omega Lemon, and will begin probiotic after we do the stool sample. My problem with all of this is he is ticcing non-stop again (head shake, jaw dropping and mouth opening (like a monkey), finger tapping on nose and stomach, and foot tapping). And he also got in trouble at school the 2 days back. One of which was fighting another kid. My husband and I want to make sure we help him, but afraid we are wishful thinking. Plus, we are now out $1100 and still have more to spend with this dr...ugh! Anyone use any of these supplements/supports? Or anyone have any suggestions? Feel like we are back at square one again!

Since first recognizing son's tics 4 years ago, we have been through so many different ones. The latest was a foot shuffle. This past weekend (5 days ago)though that subsided and now he will be walking upright and all of a sudden have a gorrilla like walk/stance. It is like he is severely bow-legged. My friend who also has an autistic son said jokingly "he looks like he has a bad case of jock-itch". We have noticed his whole body seems out of whack. His writing has also been more sloppy than usual. Plus, he has been bed-wetting for the past 5 nights. He currently takes these supplements: 325 mg. Natural Calm 2.5 g. IP-6 5000 i.u. vit D3 100 mg. L-Theanine (morning) 500 mg. GABA (nights occasionally as I'm not always home to put him in bed) also when tics are really bad will do magnesium in bath. However have not noticed much difference with it. Going to put call into DAN but wondering if any of you have any suggestions as it may be a day or two before I hear back from her. Thanks

I have also looked for a DAN dr. in the STL area as I live about 2 hours North. I found Dr. Amy Davis in Chesterfield. Her website is www.crossingbacktohealth.com. I haven't taken my son to her as we see one in Springfield, IL. I was just looking for a different option at the time. Good luck in your search!

I have came here lots of times for help for my son Cade who is dx. Aspergers and Tourettes. Anyhow, I still need help with that situation, but now I am asking for help with my own body. Back in March 2010 I noticed a tightening of muscles and tingling in my hands and feet. I had been out drinking for a party (I seldom drink and never more than a couple) so figured it was something due to having too many. It happened again in April as we had the wedding. We had a 7 hour drive home and the whole way I had the tingling in my hands and feet that gradually moved up to my arms and legs. I told my husband as it was driving me nuts. I just felt like I needed to move. Anyhow, shortly thereafter I also developed a twitch in my face on the left chin/cheek area. I mentioned it to my chiropractor who thought it might have been a pinched nerve. I also went to my family doctor and she ran some tests and said everything looked fine. So, after a few weeks it still hadn't resolved. Chiropractor sent me to a neurologist who ordered 4 MRI's, EKG, and x-rays. I went to the appt. took some medicine he gave me for being claustrophobic. On the last scan I awoke and moved so they had to redo part of the scan. It was aweful! My back hurt so badly laying on the board and I couldn't handle the pain any longer. Anyway, test results came back with no MS or other neuro. disorder. I do have some dissecation of the disks and one that is showing wear. There was something on the EKG that looked like Lou Gehrig's but I don't have the symptoms of LG so he said it wasn't the case. I do have a change in grey matter. So, then the neuro did some nerve tests...ouch! He said I do have some minor nerve damage in my back. He wants to continue checking everything out to find out. I want to find out too, but I'm also a bit scared. I am only 35! The twitches are still happening and I really only notice them when I am sitting still. The muscle tightening is also still occurring all over body. Right now sitting here typing, my arms and legs feel like I need to get up and move. I have a lot of knee, back, and joint pain. I take Carlson fish oil, vit E, Ginger, calcium, b12, b6 and chaste tree. I have also previously been to chiro who does the testing and recommended some of these supplements for symptoms of mood swings, irritability, weight gain, dry skin, brain fogginess. I notice a huge difference with using the fish oil for joint pain. Vit. E was recommended by dermatologist for extremely dry skin. I have been tested for thyroid issues in the past too and saw an endo. who said I didn't have thyroid issues like the dr. said I did. So there is my story. Do any of you have suggestions? I hear a lot about leaky gut and candida. I did the morning spit test and my spit looked like a tornado in the water....seriously! It was a funnel of stringy matter. I didn't notice any specks. Is this candida? Or is this some kind of tic? Do tics develop latter in life? thanks for any help! Christy

Thanks for the info. Wish I would have known a little sooner. I live about 2 hours away. Thinking about going.

My son who is now 9 dx Aspergers and Tourettes or tics disorder has had the following tests: 1) Hair Analysis by Analytical Research Labs (3/08)- ordered by chiropractor ---identified as Four-Low, high manganese & aluminum. Also had some lead and cadmium, nickel, cobalt, Lithium 2) UA with Micro, CBC, Metabolic Panel, Free T4 & TSH, Lipid Panel - ordered by Pediatrician and Psychiatrist to check on levels from prescription medications. --- Bacteria 2+, T Bilirubin High, HDL on line, slightly High LDL 3)Vit D. 25 Hydroxy, Lipid Panel, CBC, Metabolic Panel by LabCorp (11/09) - ordered by DAN ---low Vit. D, low HDL, High LDL 3) IgG/IgE Food Antibody, Spice, Inhalants and Mold tests by Genova Labs (10/09) ordered by DAN ---2+ Lettuce, 1+ Pecan, VL Celery, Mushroom, Corn, Peanut, Egg White, Tuna, Egg Yolk, Yeast 4) IgG/IgE Food Antibody, Spice, inhalants and Mold tests by Genova Labs (11/09) - ordered by DAN as NO enviro. allergies showed on first test and wasn't sure about reliability/validity --- 1+ Lettuce, Pecan, VL Cabbage, celery, corn, oat, peanut, tuna, allspice, basil, cumin, mustard, peppermint, sage, thyme 5) NAET or Applied Kinesiology Muscle testing by different Chiropractor --- don't have results on paper but remember we treated for corn 6) Allergy scratch test by allergist (4/10) --- grasses - red top (3+) trees - american sycamore, white ash (3+) weeds - ragweed mix, English Plantain (3+) molds - Helminthospoorium solani (3+) trichophyton (1+) arthropods - dermatophagoides farinae, dermatophoagoedes pteonyssinus, coachroach mix (3+) danders - rabbit (3+) cat dander (2+) dog dander (1+) deer (1+) 7) Spit test (9/10) at home __--- couldn't tell anything as his spit wasn't alot even though I told him to get alot of spit in mouth and showed him mine I know this is a lot of info I have put on here, but I am hopeful that someone can give me some insight into the tests that have been performed and what you would do next. My son is terrified of going back to DAN as she wants to do another blood draw. He absolutely refuses to do anymore! We haven't seen her for about 9 months. She last wanted to do a NutrEval (FMV Amino Acids) test by Genova Diagnostics. The second chiro who does the muscle testing wants to do a Sensitivity Stool & Gene Panel by EnteroLab. And if we thought the cost of $369 was too much, she at least wanted the Gluten Sensitivity Gene Test for $149. So would you all be so kind in giving your opinion on what test you would do next whether it is one of these or something different. Currently taking daily - IP6-Source Naturals(5g), Vit. D3-Nature's plus(5g), B6-Carlson(50 mg), Natural Calm(400 mg) all in powder or liquid form and mixed with orange juice as he can't take pills.

My son has been taking inositol for about a year. He started off taking about 1000 mg a day and then increasing to 2000-3000 mg a day. But we weren't really seeing many results. She told us we wouldn't see much until we upped it to at least 4 grams or 4000 mg a day and some take 8-10. We have increased his and he is now taking 5g a day. We also started B6 as it was recommended here. Back on D3 and also Natural Calm. Can't really say how it helps, but can tell right away when he doesn't take it. Anxiety can still be high for my son, especially of taking the supplements. Every day is a struggle with him even though it is all liquid or mixed with the liquid. He gets himself worked up and will get itchy when he has to take them. We find extremely high anxiety with needles and taking pills. OCD or having to have things same with no changes has improved greatly in the last year. He still tics and sometimes worse than others. Can't really say it is the supplements as I also feel he is a year older and dealing with things better. Just know the medicine route sure didn't help him. Interesting info about long term use. I hadn't been told that and wasn't exactly sure how it worked. Thanks

There is a ton of information on the boards here that you can learn so much. Also, there is a lot of literature out from flyers, handouts and books. My son is dx aspergers and best friend's son is high functioning autism. If there is anything specific you would like to know, I might be able to help.

Thanks for the butterbur recommendation. Just minutes ago I placed an order on iherb.com and forgot to check here first. So, it will have to wait until next time. As for the local honey, my neighbor is wanting to try collecting honey. He also said it was good for all the allergies. I will have to see if I can find some. I also found some natural cough medicine today that was honey based. Willing to try it to find something that works.

Son is having problems with allergies this week. We have done claritin before and have a prescription that we have never filled for allergies. Anyway, wanting something natural to deal with this as it causes him so many problems and more tics. Suggestions?

As far as more vitamins, no. He was taking d3 but hasn't been for a while now. That may be it as he ran out this summer. Forgot all about it. DAN had him on high dose and only wanted him on it for 3 months. We were suppose to retest vit. D, but haven't been back. Really need to make that appt. Will order some of it again.

My son is still on IP6 (inositol hexaphosphate) and ozonated magnesium. We are having a hard time again with anger and aggression. We thought it was due to changing his IP6 to Cell Forte, so we changed it back to physiologics. He gets mad over lots of things. We really want to get a handle on it. Need something to calm him. Give natural calm daily, but doesn't seem to do much. He likes the taste of it mixed with his other supplements and orange juice.

Thanks for the cream recommendation. I will have to ask about it. From the posts on here it seems no one has had any luck with NAET. What about DAN dr.'s? Do they really work? Because I really don't see much if any improvement in the last 9 months. He isn't on a probiotic. Have thought about it but haven't done it yet. What are the recommendations on probiotics? I dislike the ticcing but can deal with it. However, the anger and tantrums have to be controlled with something. Would also like him to be able to focus better. Currently use Natural Calm too, but really don't see much difference with it. I really wish I could find something that interests him other than Star Wars and fighting. Have heard so many others find that special interest and whole attitude and behavior improves.

Thanks caringmom for your response. I actually want to hear all sides as it is confusing and knowing what to do with your child. Faith, the test the chiropractor wants us to do is a Sensitivity Stool and Gene Panel by EnteroLab. It is $369. The DAN dr. wants a NutrEval test by Genova Diagnostics. It is an Amino Acids blood test. I realize testing is essential in knowing what steps to take, but it is expensive and blood tests cause so much anxiety for my son. The DAN dr. gave him some calming medicine last time which helped. But he refuses to go back to her as he says they are going to hurt him. I can hide the fact of which dr. we are going to, but as soon as we get there, it will be dramatic. We have done blood testing 3 different times for different reasons and each one was aweful! I tried bribing, calming, holding, etc. Nothing seemed to work. It was very taxing on him and me. Thanks to everyone for responses. Christy

Yes, my son is dx Aspergers, tourette's, and ADHD (just because it had previously been dx). We live in a very small rural area and don't even think we have those doctors. Plus, husbands insurance doesn't cover any childhood disorder or Autism. Nor have we been successful in getting any help as we make too much money they say.

I'm at a crossroad and don't know which way to turn. About a year ago, we stopped seeing the child psych. as rx was causing problems and we wanted him completely off meds. So,9 months ago my son went to a DAN dr. for the first time. She started him on IP6 and magnesium as well as another supplement that has been discontinued. We saw her a few times for testing and to review vitamins/supplements. She wanted another test to be drawn. But, because of anxiety and fear the first 2 times we drew blood, I decided not to do this. It is very traumatic for him and stressful for me for him to have blood drawn. The blood draw is needed for her to know what to try next. Then 6 months ago, he also saw a chiropractor who does muscle testing and NAET. We only saw her a couple of times. She of course also wanted a test to be completed, but not a blood draw. The test she was requesting was for problems with the gut and bacteria and all. Anyhow, I didn't do that test at the time because of the cost was $379 and I didn't have the $. And I wasn't real sure NAET was really the answer. So, in the meantime, he saw an allergist and had an allergy test. This was again huge anxiety and fear. But we made it through the test. The allergist said he had a few true allergies of dust mites, cats, sycamore, and one other (I still need to get copy of that report as I don't recall). Anyhow, from looking at his back, I could really only see 1 that was very large and it was the only one that itched him. Allergist wanted to put him on medication year round and for him to come back for a check-up. I didn't fill the rx as I am not medicating my son when he isn't showing any big signs of allergies. We were hopeful an allergy would just pop out at us but it didn't. Nor did it correspond with the allergies/sensitivities the chiropractor said he had or with the IGg and IGe the DAN dr. did. So, I continued to give him his IP6 and magnesium and played the wait and see game. Well, now I am ready to do something else as we are still having issues with ticcing and anger has been out of control. But, I'm not sure what to do. So, I need some advice. Would it be more benenficial to go back to the DAN dr. or the chiropractor or do you reccommend something else? If I go back to the DAN dr. we may choose a different one as I'm not real happy with the first one. The one is about an hour away and the other is about 1 1/2 hours away. So, not a huge difference. It isn't that I think I am smarter than any of these doctors. It is really I am trying to do what is best for my son and use bits and pieces from each and move on when there is nothing else. Plus, money is a big issue as insurance doesn't cover anything. Unfortunately, we have to take things slowly. And to make matters worse, I have been dealing with my own medical issues for the past 4 months that are still unresolved.

That is exactly where I went and no they didn't have the brand we used, but one similar. Ended up purchasing Cell Forte IP6. Had went to World Market thinking they would and Vitamin Shoppe was next door. Much more $ than on iherb, but at least I got something

My son is running out of his supplements IP6 and D3. I don't have time to order from iherb.com as I have in the past. Can anyone tell me of a chain store or pharmacy that might have these? We are going to Minnesota from IL in just 2 days and can stop in a bigger city to purchase if I know where. thanks Christy

Well, I have finally decided to discuss a subject that has bothered me for a long time. I feel I can trust you all and hope to get some insight into this. Like everyone on here we are trying to help to figure out issues with ourselves or our children. Through my son's last 4 years, I have been trying to put the pieces together and figure out if there is anyone else in the family that has or had similar issues as he does. As a reminder he is dx Aspergers, ADHD, OCD, and tics disorder. When he was little, I swore he acted like his father and felt his then dx of ADHD was inherited from his father. But since then, I just don't know. I have found people on my side of the family, had ADHD and OCD like symptoms but no one was ever diagnosed. Then I start thinking about myself and how I have some OCD things like things having to be organized, things having to be put in "their" place, nothing lying on the bar area, having to have a drink after brushing my teeth, all shoes being on the rack before going to bed, etc, etc. Then, I think back to my own childhood and found I was so clumsy like my son but thought it was caused from growth spurts. However, I exceled in sports and don't remember having any motor skill delays. I also didn't have many friends and played alone a lot until 3rd or 4th grade. When I had a friend, it was usually 1 close friend and friendly with others. I don't remember having any self-stims except for a sexual behavior of rubbing on a chair that I did for many years from prob. 1st or 2nd grade and onward. I never admitted to it and ignored the situation if it was brought up. Still to this day, I won't talk about it. And no I wasn't abused, molested, or saw anything. I remember at the time, I didn't know why I did it other than it made me relax. So, now I think it must have been some type of sensory stimulation. I also apparently blink my eyes a lot and move my eyes from side to side and roll them. I don't notice it at all, but other people tell me I do it. Everyone thinks I have freaky eyes. I just think they are normal as my mom has always moved hers side to side and my dad rolls them. So anyway, I am just trying to figure out if any of this has any connection with my son's issues. Are any of his problems inherited or just merely unexplainable as they really have no precise cause of Autism/Aspergers. Anyone able to give me your thoughts on a connection or on my own past behaviors or problems. Thanks

Kathy, I went through similar things with my son. He was first dx adhd, ocd, and tics disorder. Then, a psychiatrist dx him PDD. Later a team at the The Autism Program dx him Aspergers. From what they told me and how I understand they are all part of the Autism pr Pervasive Developmental Spectrum. It starts with PDD-NOS as being mild, then Aspergers, then High Functioning Autism, then Autism. The specific dx is determined by how severe their social interaction, communication, and repetitive behaviors. There is tons of information on here and on the internet on these disorders. Good luck with your search.

My son who is dx Aspergers had some of the things you mentioned. His dx didn't come until he was almost 8 after being dx as ADHD, tics disorder, OCD, and later PDD. One main thing the people at The Autism Program said was a flag was parallel play. Another is eye contact and seems like he doesn't hear when being talked to. When Cade was little, I thought he was doing great because he said big words at a young age (2). He seemed to play pretty well with other kids and didn't get into arguments. But upon further review, it was parallel play with his own things. As he got to 1st grade it was all about Star Wars and has remained that. But, when little it was trains and then lego's. My son never makes eye contact when speaking to someone. When he was 4 his daycare provider said she would say his name 3 or 4 times and he wouldn't respond until she went and touched him or took away whatever he was doing. She also commented on how he seemed to walk on his toes at times. My son has many sensory issues and also tics. Our first notice of tics came at 5 with an arm movement, but found he also did a rocking and swaying when he was 4 in pre-k. There may have been others earlier, but we didn't notice them. With him, he potty trained late at 2 1/2. He also liked having books read to him, but now reads at a 4th grade level when he is only in 2nd grade. He also liked hugs and as a new mom I loved them too. I just thought he was a cuddly kid. He also is unaware of personal space and always seems to be right beside someone or will navigate to them. I also thought he did well as he ran and played on things. But, riding a tricycle/bike was difficult for him. He didn't learn until he was almost 8 to ride a bike and still not good. He could also throw a ball and swing a bat. But catching a ball is a different story. He still can't do it. My son loves to draw, but printing is aweful. He just recently learned cursive writing and seems to do better with it. From all of our tests and treatments, we have found his motor skills are delayed and he has a problem with hand strength as well as other body awareness/alignment. Anyway, this is just to give you a background of someone who is dx AS. If it is something you are concerned about and apparently has been brought to your attention, get it checked out. I so wish we would have known he was doing these things in pre-k as we could have started the road much sooner.

Wondering when everyone elses kids started realizing they were ticcing or had anxiety/ocd issues. Cade who is 8 1/2 still doesn't know he is doing anything or is refusing to notice. I think part of it is an avoidance technique for him so that he doesn't stand out as different. But wondering how to get him to see it. It is hard to discuss with him how to help him when he doesn't realize their is a problem. He doesn't see himself as making noises or movements or getting upset. I had him read a short book from about AS to try to help him, but he still didn't get it even though I tried discussing with him. Is there any other books you would reccomend or other ways of getting him to realize it? The whole reason I want him to is so that we can help him better and he can help himself. Suggestions?

Kids do start to notice at a young age. My son who has been ticcing since before Kindergarten has had some kids make fun of him. In K. it was because of his speech issue that was heightened from his sensory problems. In 1st grade he would twirl around and get out of his seat. Some kids said he was a problem child. Now in the second grade kids notice anything that is different. He is also dx Aspergers and plays alot alone. Luckily in 1st grade a new child moved in that was a little odd as well. They are great friends now. But, he is still laughed at or made fun of. Most of the time he doesn't notice it or ignores it. He has also been in karate for 1 1/2 yrs. to help him focus and help his motor skills. I think it has helped, but it doesn't lessen his ticcing. In fact, this past weekend we went to a tournament and his tics were worse the whole week. While at the tournament he was chewing on his sleeve again too. I believe all of this was caused from the anxiety of the tournament. But, I still think the advantages outweight the disadvantages so he will continue until he chooses to do otherwise.

My son has had NAET one time for corn and it really didn't seem like it worked to me. We were suppose to go back but twice we had bad roads because of snow. So, we haven't returned yet. But for that time, they didn't stick a needle in my son as a person earlier had posted. For him, they gave him the vial and a specific color glasses (his were blue) that are suppose to help with the specific problems. She then took a tool and hit points along his spine, shoulders and body. Then he had to continue to hold the vial for an additional 10 minutes I think. Afterwards, no food containing corn for 25 hours which was very difficult but we did it.