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Hi Faith: your inbox is full and I was trying to send you a message! I'm back from vacation and ds did great on the trip! Bonnie

Just a quick reply about Neurofeedback for ADHD: it's pretty controversial over whether it works for the long haul. Our therapist is getting certified in it and he said insurance doesn't pay but he might be able to adjust the billing. I'm not sure we're even going to try it as I've heard it's hit or miss. I've never heard of the other thing you mentioned. Here's what you can try on your own without a doctor's approval for relatively little money. Try starting him on a magnesium supplement and on epsom salts baths every night. 2 cups of salts and soak for 20 mins. Also, you might want to find some B6(not a B complex yet). Bonnie Grimaldi's vitamin plan has 50 mg of B6 daily but you might want to find a 25 mg to start with and increase if you see no adverse affects. This has helped my son so far. Not with the OCD but with the tics a bit. Also, try giving him Omegas in the form of Flaxseed Oil(some kids with tics react poorly to the fish supps). I buy a Cinnamon flaxseed oil and mix it into smoothies or breakfast drinks on a daily basis for him. So, at least these things can get you started. Also, you might want to find a naturopathic college in your vicinity. Many times you can see an intern for a discounted cost and they will run everything by the docs for you. We have the Southwest Naturopathic College here and I have a few friends who take advantage of their program. Ok: so I wasn't so quick but I hope it was helpful. By the way, how bad is the OCD? I know Chemar has done some things for her son's OCD that has been very helpful. Bonnie

We saw the naturopath today and she said that the efficacy of the neuroscience supplement would definitely start to become ineffective eventually. She wants us to try some other things soon including theanine. I am having a hard time explaining to her that theanine increases dopamine and that will increase ds's tics. So, I don't know what I'm going to do!

If by "phenylbutric acid" you are referring to "4-amino-3-phenylbutyric acid," which is also known as "phenibut," then you really don't want to stay on this long term as tolerance builds quickly and withdrawal can be terrible. What dosage are you using? Most recreational users recommend using 500mg to 2g (very high dose) no more than a few times a week, max, and taking breaks frequently. Maybe your dose is different, or maybe your supplement is different. I know it's used for depression in Russia and I think it's a longer term use there. I've only used it recreationally (and never more than 500mg). It caused euphoria and was definitely effective as an anxiolytic (the reason I took it). It had no effect on my blinking tic. I never used it more than twice a month and only used it a few times ever. http://en.wikipedia.org/wiki/Phenibut yep, this is what it is and this is what concerns me b/c they have me giving him 2 caps a day. I don't know the exact amount of the amino b/c the manufacturer has the information listed as a blend of taurine and the phenylbute. The naturo says this is completely safe! The combo says 950 mg in 2 capsules. Maybe I should cut him back to one and then talk to some other doctors!

Thanks Cheri, I was hoping some folks would give their experiences with positives or negatives they've had regarding their supplementation programs. IE: did it work for extended periods of time? Were there withdrawl symptoms even when stopping amino acids? I totally understand about titrating down even with aminos. I guess I just want to make sure I'm doing it safely and without harm, does that make sense? Thanks for replying! B

Anyone??? Opinions pls.

Have you looked into getting a referral to a developmental pediatrician or psychologist? They will be able to test your child for ALL the issues you are seeing and give you a diagnosis. Your school district should have a list of doctors/references available. We homeschool so I'm not familiar with all the stuff regarding schools but I know that if you want a diagnosis you should be able to get a referral from your pediatrician. You know, I have a friend who's dd was diagnosed ADD with tics and other neuro issues. The neurologist told her that her dd was off the charts neurologically and socially when their dd was 8. Well, she's 17 now and she's a totally normal child; no more tics, she has the ADD under cotrol, lots of friends, etc. My friend always tells me that when her dd hit 13-14 it was like she changed over a gradual period of time and shed those diagnoses' they received. Anyway, my friend reminds me that even if we get a diagnosis, it doesn't mean the child has to be labeled with it forever. Things change, children grow, and sometimes prayers get answered! Blessings, Bonnie

I see the same things that you do with my son. The sensory issues, the sensitivities, the obsessive thinking and obsessing about certain things. BUT, he does not have the social issues that I see with many aspberger's kids. There are many levels of aspberger's and many people with ADHD, TS, OCD, etc. have co-existing conditions such as Sensory Integration Disorder. I think you might want to research SID instead. What I have found from doing all my research(as I'm just like you on this one) is that it really doesn't matter what label we put on our kids, what matters is our attitude and how we treat them, encouraging them along the way, and loving them no matter what LABEL they qualify for. I could label my son with TS, OCD, ADD, GAD, SID....wow, when I type it out it seems like a lot. But, if you were to meet him at a store or on a football field he'd look just like all the other kids out there. The hardest thing for me is figuring out which supplements will help and which dietary changes to implement. We started with a naturopath and will probably stay away from the MD's and Neuros b/c I know they'll probably just want to put him on meds. That would be a last resort for us. So, what I'm doing now is preparing for the future with my research on the supplements, etc. so that I can help him overcome his OCD and tics(those are the worst issues we have for now). Hang in there, we're all on a similar journey! Bonnie

Currently, the supplements we have ds on are working for his OCD, but not for the tics. What I am curious about is whether we will come to a point where it's not safe or effective to be taking this supplement and then where do we go? I have ds on a neuroscience amino acid support product that has B6 and a taurine/4 amino 3 phynelbutyric acid combo. He has been on it for 3 months now and his OCD (mostly disturbing obsessive visions and thoughts) have completely gone away. He still has some situational anxiety and he still tics. So, I guess I'm wondering what my backup plan would be, if needed. Also, is there withdrawl associated with any of the amino acids. I've been reading about the phenylbutric supplement that he is on and many docs/naturos feel that it's not good to take for extended periods of time b/c it's efficacy will diminish. Now, my naturopath doesn't feel this way. She feels that we are healing the broken neurotransmitter bundles and that this is the way to go. I don't want to get carried away with worry but at the same time I want to be safe and I want to make sure I am doing things properly and not just going about this willy nilly. Can anyone else relate? Thanks guys! Bonnie

Hi there, do you have a website with Sarahs' diet recommended? I'd love to check it out. Interesting what you said about the lutein instead of the salicylates b/c I've been debating this for a while. I've been thinking of doing Feingold but I have a hard time removing fruits and veggies b/c I think they are very important for digestion and for antioxidants. Does anyone know if you take a veggie or fruit supplement if that would still create the same problems? Like the Juice Plus products or the Alive supplements which contain whole foods. If I remove fruits/vegs from ds's diet, then I'd like to have something to replace the nutrition with. Thanks, Bonnie

Hey Pat, The first day they worked on environmental allergies and he had a few mild local allergies. The next week was chemicals and the only things that came up were vaccinations(all of them). And, then we did foods. He was primarily allergic to milk products and artificial stuff. We had to redo the foods last week b/c the treatment didn't take so we're going back next week for the final cleanup. Carolyn N from these boards goes to the same doc for this and she said she takes her kids in for a tune up about every 3 months or so just to keep up on it. I think they then treat for the individual allergens. We'll see how it goes on Monday! Bonnie

Well, one thing you'll hear on this board is to just take one step at a time. If you do too much you won't know which part of your plan worked the best or the least. On the magnesium front: check out the essential threads on the top of the boards and you'll probably find more information there. I just give him about 300 mg of magnesium but some parents here give up to 500 mg. I started low and worked our way up and have seen no ill effects. It helps him fall asleep at night and my dh swears it helps him sleep through the night, too. There is a lot of research out there that states most folks are low in magnesium so supplementation is sometimes necessary. I would also start searching out a naturopath or environmental doctor who is versed in neurotransmitters and working with children. I live in Phoenix and found a few docs that would work for us. And, yes, many times you feel like you are on a rabbit trail that goes nowhere and you have to retrace your steps and start all over again! It can be very frustrating! Allergy testing would also be a good thing to do b/c he may have some food allergies and if you get him off those allergens for a little while you may allow his body to heal. Also, many folks on here give their kids probiotics(Kefir, yogurt, or acidophilus) to improve gut flora and also they give their kids digestive enzymes to help their kids break down proteins like casein, meats, etc. Both those things can help anybody these days with all the processed foods we eat. My whole family takes enzymes and I make sure we all get some sort of probiotic daily. Anyway, I'm sure others will come on here with their wisdom. I'm still a newbie here! Bonnie

Lfran, You are not the only one who doesn't 'see' the relationship between the artificial stuff and the tics. I also have this problem. If ds has a Sprite or has an Otter Pop after tennis I do not see an increase in his tics. I have seen them wax and wane all day at times when I've been really careful about his food and I've seen the same waxing and waning when I've allowed some treats that are normally no-nos! Anyway, I still believe that all that stuff is cr*p so I still try to limit them but I've found that I don't want to militant about it. I don't want to take away all his joy and with football season coming up I know he'll be offered all kinds of stuff: gatorade, cupcakes, oreos, etc. that I wouldn't normally feed him. I just figure it's better to be healthier despite whether I see it helping the tics or not. As for the eye thing: Have you tried removing screens from his days to see if that helps? I did try this and didn't see a difference in his eye tics but I know some people have tremendous improvement if they get their kids away from tvs and computer screens. Bonnie

As you can see from the message boards, you are not alone! There are new people posting daily about their children and tics. And, from what you've probably already found out, there can be many causes and things that contribute to tics and co-morbid conditions/behaviors. To answer your question on the NAET: we are in the process of doing the NEAT with my ds(9) right now. He had to go back and do his foods all over b/c the treatment didn't hold so we go back next week for our cleanup. I really can't say that it's helped us yet, honestly. My ds still tics the same as before and he's still waking up congested like he was 2 months ago. Maybe there are things going on that I can't see, though? I've heard good things about the treatment so that's why I figured it was worth a shot! As for the zinc: I do believe I read on here that zinc can be an issue. I give my son a magnesium supplement that is balanced with calcium, magnesium, zinc, and vitamin D. Something interesting to note: When testing for chemicals with the NEAT, our naturopath found that ds was sensitive to all of his vaccinations and there were no other chemical sensitivities. She said she'd never seen anything like that before as it was every single vaccine, not just a few individual ones. So, I know now that this may be part of our problem!!! Blessings, Bonnie

I have to tell you that my son also wouldn't take pills. One of the moms here told me that she would open up Bonnie's capsules and roll them in peanut butter to disguise them. Her son did this for a year before he finally said, ok...let's try to learn how to take the pills. My son has a terrible gag reflex and throws up at the drop of a hat so I know what you're talking about. To get started you may want to try the Kids' Calm by Peter Gillham to start increasing your son's magnesium intake: this comes in flavors that my son likes( I buy the adult Calm formula b/c it has a lemon/raspberry flavor that he likes). I do believe that if you have found some liquid vitamins that you can encourage your son to take them despite the fact that he doesn't like 'orange' flavor. I just tell my son to hold his nose and gulp it down and if he complains I say "tough, I'm the parent and you're the kid and I know what's best for you". As for the ice cream: start buying Breyers as it has the least amount of ingredients especially the vanilla! I just started this process with my son and have not started him on Bonnie's b/c of the whole pill thing. I'm taking things one step at a time. So, for now he is taking a small vitamin B tablet that is 25 mg and the kids' calm and a liquid magnesium/calcium supplement from Floradix and a liquid kids' vitamin formula also from Floradix. He loves the taste of the Floradix products so I stick with them despite their costs. I also give him a neurotransmitter support supplement 2x a day that comes in capsule form and he manages to get those down, but before he could swallow I would break the capsule open and dissolve it in juice, whatever his favorite was at the time. I want to encourage you to not give up. Try your hardest to get your family on board with you. Find articles they can read about nutrition and how that helps with ADHD, tics, and anxiety. My dh isn't totally on board but he's slowly coming around and he at least doesn't give our son junk anymore and they both think twice before buying something at the store if I'm not with them like: What would mom say if I bought this??? Best of luck, Bonnie

As for other toxins you could have problems such as yeast or chemical sensititives. I agree with Faith in that you should get the testing done(I agree with waiting on the tests for now b/c of his fever) and rule out other causes of tics. There was a mom(I believe her name was 'myrose') here who found out that her dd was having seizures and that it was causing tics and anxiety. Once they got her on the right medication, all the strange behaviors stopped. Welcome to the boards, by the way!

I think the magnetic thing depends on who you are and what makes you 'tic'. Chemar's son is very reactive to a lot of stuff. He doesn't even eat with metal utensils b/c he is sensitive to metals. Her son is also VERY reactive to chlorine and they filter all their water to remove chlorine and her ds does not swim in pools that are chlorine treated. Everyone is different, that's what makes this so hard for us. What works(or doesn't work) for one person may/may not work for another. It's all trial and error. I still have NO idea what makes my son wax and wane with his tics but at least I've found a supplement that helps his OCD. It's all part of your detective process!

Bumping up for all the new folks.

As someone who suffers from stomach problems, I can tell you that there are many days when all I eat is toast and ginger ale! I have IBS and reflux problems sometimes so severe I get stomach pains and vomiting. Changing her diet might be really helpful and finding out if she has any food allergies. The tics are probably just making things worse for her. Have you tried feeding her a simplified diet? Boiled chicken, rice, bananas, toast, potatoes? Keep her off of milk maybe for a few days and see how she does. Also, anxiety can cause stomach problems even if she doesn't seem anxious to you. I would try to find a good whole food supplement in a drink mix form so you can get her antioxidant levels back up and maybe even a chocolate protein drink, as well. That way even if she's not eating real food very much, maybe it will help her nutrition levels. I have a friend who vomited and had stomach pain all during her childhood. The docs said she was just an anxious child but they took her to an allergist for seasonal allergies and mentioned the gastro symtpoms. He tested for food allergies and it turns out she had a casein allergy. Once they removed milk(they were farmers) from her diet, she started to heal. You've gotten some great info about the PANDAs here so I hope you explore that option, as well. I just thought I'd chime in about the food allergy stuff. Many kids with tics have immune system problems and histamine levels are off so she may be having trouble digesting foods. Many parents on here have their kids on digestive enzymes and probiotics to help clean up the gut flora, etc. You may want to search this website for more info. on that! Good luck! Bonnie

Tami, Too bad I didn't go to Whole Foods after our appointment this AM. I am planning on going to Trader Joe's today! Maybe they'll have it. The goat mozzarella sounds wonderful, too! I love goat products and I'd love to have a goat but I don't think our HOA would care for that too much!

I have packeted stevia here at home that I use in tea. Not sure what I can cook with it but I noticed that maple syrup wasn't on his list so I guess I could use that to cook with, as well. Maybe I should bake some apples with maple syrup for dessert tonight? Life really is boring without cheese: as ds said this AM!

Cheri, His list didn't include goat's milk so I assume he can have that! He loves feta so I suppose he can have goat cheese. I have some almond milk and rice milk here at the house but they are sweetened with cane sugar, which is one of his 'sensitivities' as well. Well, at least it's only for a day. I think I need to get some real allergy testing done for him. What are the best tests for food allergies? I've seen Great Plains mentioned here quite frequently. I've seen mention of IgG, etc. Which test is best for determining food allergens. Thanks!

So, I had ds's foods tested last time we were at the naturo's office. He was showing allergic to these foods: All food colorings All milk products and casein All corn Peanuts Soybeans Bacon and hot dogs Turkey Bananas and plantains Oranges and tangerines Raisins Margerine Aspartame and all artificial sweeteners Corn syrup and HFCS Honey Sugar cane Maltodextrin(obviously corn derived) MSG Sodium Fluoride Nitrates and Nitrites TBHQ So, I did what we were supposed to do and kept ds away from all the foods for 24 hours and he nearly had a fit trying to stay away from cane sugar and milk. It was so hard for us. I am not too skilled in the kitchen! Anyway, I forgot I let him brush his teeth with flouridated toothpaste. We went back in for a clean up visit and he tested positive for his food issues again and she said we have to do it all over again!!! ARRGGHHH! I thought I was being so careful! Poor ds is so bummed. If this NEAT doesn't work for him, I am going to be forced to do an elimination diet starting with removing milk and casein. That will not make the cheese boy very happy. He lives for pizza and feta cheese(yes, he tested positive for sheep's milk too). No wonder he tics more at every meal, he's sensitive to everything he puts in his mouth other than some fruits and all veggies! Ok, maybe I'm exaggerating here but I know how hard it is to go casein free b/c I've done it myself. I guess I just sympathize for the poor guy. Bonnie

Well, if he has Tourette's tics then I'd say that asking him to stop probably won't help. He might be able to supress them for a while but they'll come out later. I think you should try posting on the Tourette section b/c many of us deal with OCD. There are moms who have tried alternative therapies for ADD, OCD, SID, and Tourette's/PANDAS. Anyway, I have read that Inositol helps with OCD. Find a post by Chemar and click on her link about the supplements that helped her son. He's 18 and had severe TS symptoms and severe OCD. They have treated him without medication and he's done very well. You'll just find way more information over there, even if his OCD is his main problem. Bonnie

Oh yeah! He's sitting here cheering on Indianapolis! He's looking forward to starting flag football at the end of August and he plays tennis and golf the rest of the year. He also enjoys mountain biking, swimming, hiking, basketball, etc. Unfortunately, I can't seem to get him interested in yoga yet but I've taught him the breathing and relaxation techniques and they work really well for him. He always loves it when I talk him through some body relaxation w/breathing. Yoga would be excellent for your back. I have 2 chiropractors who have come to my class in the past who tell their patients to try yoga to strenghthen their cores and back muscles. I hope you find solutions to your tics! My ds doesn't really notice his tics right now and we're praying they stay mild but his OCD is what really bothers him so we're working on finding supplements that would help with that, too. B