myrose

I just remembered something I read....I will try to find it and add a link if I am able to. Anyway it stated that rubbing or trying to pull at the eye was a sign of Vitamin E deficiency. Just wondering if you got blood work? Not saying that this is your problem, just wanted to let you know about it. Hopefully things are better now

Okay well now apparently there is one...the patent ran out so other companies are making it. Some info for you: Is Generic Topiramate as Good as Topamax? All generic medications must undergo certain tests to compare them to brand-name medications. The U.S. Food and Drug Administration (FDA) then looks at these tests to decide if the generics are equivalent to the brand-name medications and assigns each generic a rating. An "AB" rating means that the FDA has determined that a generic medication is equivalent to a brand-name medication. All of the generic topiramate versions currently available have an "AB" rating, meaning they should be equivalent to Topamax. However, generic medications are allowed to have different inactive ingredients than the brand-name medication. This might include fillers or dyes or other ingredients that may cause problems for people with allergies or sensitivities. It should also be noted that many healthcare providers believe that special care should be taken when switching a patient from a brand-name seizure medication to a generic one. For this reason, you may want to check with your healthcare provider before switching to a generic version of Topamax. I will have to do some more research on this before I fill my next script.....I can not say for sure but the few differences in the sprinkle caps vrs the tablets seemed to have a negative effect for my daughter.. OH BOY!! something else to wonder/worry about now....

As far as I know there is no generic for Topamax. Unless it just happened recently. Are they the same pills? Odd....

Melanie, I resorted to topamax because of a severe (and I mena SEVERE) head bob and body jerk that we just could not control. When it started to effect her emotionally I broke down and just could not take it anymore. She cried everyday and stopped wanting to go to school at one point. The topamax was suggested by the neuros nurse practioner. Its the only one that does not cause the TD that the others do so out of desparation I agreed. I needed to buy some time to search further and try to understand it all more. We did the diet and all, turned my home into the green home of the neighborhood as well! We did the therapies, supplements and everything we could do but then money started to run out and out of the blue the tics just hit full blast and nothing we did helped. She also exhibited OCD and some other things but after starting the topamax everything seemed to go away. Still no one can tell me why it helps her with so much but at this point I really do not care. We stayed at a low dose and waited it out and the outcome was miraculous for us. Topamax is used to treat migraines, it also is used for seizures, weight loss, and I have come across some readings about it helping with ocd as well. We still remain at a low dose without any side effects and all has been well with no tics at all. We do have some sensory issues that pop up once in awhile but they don't seem to last for long as they did before. We keep the diet as clean as possible, have hepa filters and special filters on the air conditioning unit and no chemicals whatsoever in the house. Not even in the shampoos or soaps etc. If all this is contributing to her success I do not know but then again I am just enjoying this and never want to go back to the way things were so I am not changing anything right now. We are coming off from topamax after school lets out to see where we are. I have also been doing more research on other therapies to help her if all things go downhill again after we stop the topamax but at least now I am calm in my research and have a relaxed mind which helps me better to understand what I read and also retain alot of info. I got brain fried during it all and completely lost my mind and trying to concentrate on anything became impossible while the tics and all were taking over our lives. I don't like being on the med and will NEVER increase. But we were falling apart over here. The neuros and multiple doctors we had seen never seemed to be helping at all. They all wanted to give a different drug for every symptom and then more drugs to combat side effects!!!! Our health insurance cancelled her (pre-exsisiting condition) and would not pay a penny for the therapy we wanted to try. Her sensory integration therapy was $350.00 a week alone. The pschyciatrist was just as much. We did what we could for as long as we could but when we saw no benefit or no answers we just did not know what to do. We took a loan out of our 401k to pay for the stack of bills that we had trying to treat her and now we just do topamax. So here we are now and I just pray that one day someone will find the answers to all this stuff. It seems to me that the people on these boards know more about the body and the way it works than many doctors we have been too! Go figure! Goodluck to you and your journey and only you can make the decision as what will be best for your child.

I know and "think" I understand that the positive steroid burst can make one lean towards a pandas diagnosis and that if its tics or tourettes the steroid burst would be not a good outcome and from what I understand...make things worse. Other than this has anyone found another possible difference in pandas versus tics? Is the handwriting thing (decline) only with Pandas kids? M daughter never displayed anything like that and does quite well with drawing and writing???? My daughter was diagnosed with tics and does well on topamax (sometimes we get some sensory issues that peak through) but I still wonder about Pandas..... The frequent bathroom trips were there, sudden onset of the ocd (but not bad) tics were the worst for her in my opinion. They remain gone while on topamax. She did have strep but her titers were low (I understand they do not have to be high, thanks to Buster) Just hard sometimes when I wonder if we treated her right. I guess tonight after reading the board about someone just finishing IVIG caught my attention when she stated about her son listening to her the very first time and she said something only once. My daughter was always needed to be told more than once or twice or three times to do something. And then sometimes it seemed like she could not focus long enough to get something she was told to do done. How do you know when a child is just being a "child" so to speak or when its something else. We are coming off from topamax the day after school lets out so maybe I will find alot of answers then.

Carolyn, If you get a chance and see it, pick up some chocalate almond milk!!! Its SO GOOD!

Does she like Kiwi's?? If so give her two (kind of on the very soft side ones) and she will really empty out! Afterwards maybe a kiwi everyday will help correct the problem.

You can get his blood checked to see if he even needs the 2nd MMR. I was NOT aware of this and after 9 shots in one visit my daughters tics also surfaced. I would and will NEVER vaccinate my child again. I urge you to do all the research you can before making the decision to add the MMR. Thats the one that alot of people question...... Goodluck to you and I hope you find the answers and solutions that work best for your son. Its a long road and extremely frustrating and overwhleming. This board is a godsend.

Oh yes I know....I was just commenting on DeDee's post (sorry to confuse you) She takes it and spoke of some side effects she had early on.......

Sorry to hear of your side effects but luckily they were short lived. My daughter never experienced any of that nor any other side effects because of the low dose and also the reason why I started low and stayed low. A neighbor on the other hand who is an adult and takes an adult dose does have some not so pleasant side effects that come and go. She said they do not bother her much and after having migraines more than 2 or 3x a day she is happy that its helping her. She actually went back to work after staying in doors for almost two years! Again I guess the quality of life there helped in the decision to start the topamax after years of trying everything else. We are coming off from Topamax on June 4th.....Wish is luck!!!!!!!!!!!!!!

Our Doc said it was okay to just stop the clonidine. I believe it was because it was such a low dose. Please double check with your doc, maybe you do have to wean with the dose he is getting. Its very important to wean from it (at least from what I understand anyhow) Maybe you could ask your doctor if you could start cutting the dose in 1/2 the same day you start the topamax??

We were also on Clonidine but stopped completely before starting or condsidering Topamax. It may make one really drowsy with the two??? At such a low dose of clonidine, we never had to wean down. We just stopped and all was okay. I thought being that it sort of slowed her body down that after stopping it she would go FAST! if you know what I mean, but I do not remember that. We stopped the clonidine because of the rare side effect...Nightmares! and VERY LOW blood pressure. Goodluck to you and only you as the Mom can know and will know what is best for him. I pm'd you a short while agp...

On all these people who push the vacinations into schedule and who make them etc.... I would REALLY like to see a shot record from one of their children (if the COLD HEARTED Jerks even have any!) This whole thing makes me so very mad. I was just looking at pictures yesterday of my daughter and remembered how she used to be before her 9 shots. No matter how well she seems to do now, it still breaks my heart that I was not informed of a possible predispostion she might of had before the shots were given. Sometimes I feel as though I was not a good Mom in the sense that "I should have known" these things. We no longer vaccinate ANYTHING in this house...not even the two minature pinshers we have running around. Its real sad that apparently the veterinarians figured it out long ago and actually tried to fix something whereas the rest of them stayed stupid or maybe (rich) is the word I should use..... Sorry no spell check......running so far behind!!!

airbucket, I LOVE him. I think people started to turn away a bit when he started to offer "his products". I guess thinking he just wanted to promote his items. I use all his vitamins and my daughter is now using his new kids vitamin. I have the krill oil for children as well, but I am waiting until school lets out to start that (after we stop topamax) His cooking pots are next on my list! The cocunut flour and oil is to DIE for!!!!!!!!!! I cook my potatoes on the grill in it and they are DELICIOUS! I use the flour to coat organic chicken breasts after I slice then real thin and wack the ###### out of them LOL I also have his water gadget for the shower! LOVE IT! I shop on the website all the time! Sometimes weekly. My usual organic skin care line had a bad batch and I was without any so my last purchase with Mercola was the new skin care line. I just started using it so I can't comment on it quite yet. I believe EVERYTHING that comes out of that mans mouth! And no one could ever change my mind about him. I am sure you will be VERY happy with anything you purchase from him.....(Let me know what you get, if anything)

What about metal containers? We can not do the glass in school. I guess the one we have is stainless steel?? Anyone have suggestions on how to hold the water safely. I wish chemicals would just disappear like MAGIC!!!!!!!! I think only now are they beginning to FINALLY see the ramifications of all this JUNK!!!!! Its very sad what we have done to this place. Feel better now LOL

While at my daughters soccer practice tonight, I was chatting with another Mom who has a son in my daughters class. She told me that she is having issues with her son in regards to clothing (tactile) I told her my daughter experiences this at times as well and I then gave her the number where my daughter was evaluated for sensory Issues and also had therapy. To my surprise she said she read that the drug pitocin (one to induce labor) and also plastics like from drinking bottles have been linked to sensory issues???? Our conversation got interrupted at this point and so I never got the chance to ask where she read this. My daughters school does a small chapel service on Friday mornings so if she attends I can ask her then. In the meantime before I head out to the internet and search like crazy for info on this I was wondering if anyone ever heard this or anything like it??? I do know about the plastic and all the bad stuff (chemicals) that come out when its heated. For this reason we never put plastic in the microwave and we never drink water out of a plastic bottle that has been heated (like left in the car) But I never heard or read anything about it and sensory disorders???? Thanks ahead everyone....Hope all is well with everyone

HAPPY EASTER

We have a pool that is treated with salt but the salt is turned into chlroine anyhow. I did believe it was a tic trigger for her at one point but then there was a point when it never effected her at all. I think and believe that the wax and wane period for these kids is so different at times that its truly hard to find a true trigger in my opinion. She swims everyday, spent the weekend in the pool of course and no tics....of course though she is on topamax until school lets out. I am so CURIOUS to see if his tics dissapear while on vacation. I bet they will! Just enjoy it! RELAX RELAX and have fun. This thing can take over your life! Take a break and have fun! I bet he will be fine! You will see! Wish I was headed for a vacation LOL (I headed back to work and its just draining the heck out of me lately)!

Side effects listed are for adult doses. We have no side effects at the 25mg. Guess I would have to admit I would be scared to increase even 1mg....which is why I won't ever. I can't imagine any drug taken during pregnancy and not causing some form of harm..... Wonder why doctors would prescribe any meds to a preganant woman anyhow. (without it being a matter of life and death anyhow)

Abbe, I am EXTREMELY curious to hear about the vacation after you return. Reason being that 2x while we were on vacation my daughters tics mysteriously dissapeared! Twice it happened. NOt a twitch! I remember my family members thinking I was crazy when before our visit I told them all about her condition over the phone. Soon as we returned back....tics came back. That was when we did the whole allergy elimnation like hepa filters, carpets gone, ultra blue violet light on ac unit.....I could go on forever with that list. I hope you enjoy your vacation and good luck woth the blood tomorrow. Hopefully it will bring you closer to finding what works best for him. OH! in regards to the citric acid....I mentioned it because it was on your list you posted (bad for the brain?)

I think citric acid is in Juicy Juice?? I read it was all natural??? Is it? My daughter drinks water or pom wonderful juice right now but its quite costly and I was condsidering juicy juice? Anyone else use juicy juice? Or can anyone recommend a nice healthy one that doesn't break the bank.... We all LOVE the pom wonderful, it may be too hard ot give up! The bottle shape is pretty cool too.

I am on not sure, we got the script from the neuro. I do know though that topamax is used for many other things and a big one is weight loss so I am sure other docs aside from neuros can script.

Here are the ingredients in the tablet form: Tablets contain the following inactive ingredients: lactose monohydrate, pregelatinized starch, microcrystalline cellulose, sodium starch glycolate, magnesium stearate, purified water, carnauba wax, hypromellose, titanium dioxide, polyethylene glycol, synthetic iron oxide (50, 100, and 200 mg tablets) and polysorbate 80. And here are the ingredients in the sprinkle cap form: Sprinkle Capsules contain topiramate coated beads in a hard gelatin capsule. The inactive ingredients are: sugar spheres (sucrose and starch), povidone, cellulose acetate, gelatin, silicone dioxide, sodium lauryl sulfate, titanium dioxide, and black pharmaceutical ink. My daughter may have had a bad reaction when we used samples that were given free from her neuro. They were in tablet form and she usually took the sprinkle caps. When we switched back all was great....still not sure if it was indeed the tablet form but the ingredients are different so I would not want to take that chance again and so will stick with only the sprinkle caps. Also it is advised NOT to cut the tablet form in 1/2. So....if you are taking under 50mg the sprinkle caps would be prescribed anyhow. The tablets start at 50mg

Caryn, I have to laugh when you mention the family and friends being amazed on the food choices! When my daughter brings her favorite lunch to school (lettuce, cucumber, olives, shredded carrots and pickels together on bread as a sandwhich) All the Moms comment to me about it. They say things like "how did you get your child to eat that"! It kind of cracks me up! The favorite of mine is another Mom who states all the time that she "HAS to buy what her kids will eat" Being processed junk and Mcdonalds..... I wonder how they got hooked on all that stuff to begin with LOL They do not come out of the womb asking for Mcdonalds do they? We have a rule in the house when it comes to food....Its simply....Eat whatever you want! The trick is the only things available in the house are good all natural healthy foods and snacks. I find that giving them a choice helps them adjust better and maybe makes them feel still in control when choosing what they want to eat. If its not in the house.....they can't eat it right??? Its also a great diet idea if you think about it......if one wanted lets say a piece of cake or a donut or (something they know they would not just eat one of) Well if its not in the house...you can't eat it! LOL And if your hungry enough you will choose something that is in the house. Shortly after you begin to crave those foods just like you did the bad stuff. Have a great weekend!

yes melatonin can be found just about anywhere they sell supplements at. Like walmart etc... It will not make you drowsy or anything like that. Its absoulutely not like a sleeping pill or anything like that. Take it about 20 minutes before you are plannign to head to bed. Let me know if it helps.