Update on Daughter

[myrose]

Hello to everyone! It seems a bit since I have been able to have computer time. I went back to work in January and its been quite an adjustment period for me to get back in that world again.

 

We are now on Spring break so I am breathing again! LOL

 

House is clean, laundry is done, errands are done, supper is even already prepared waiting in the fridge to be cooked at dinner time.

I even did my salad ahead of time today. My daughter is playing nicely with a playmate that is also over the house.

 

So here I sit with my computer for the first time in what seems or feels like FOREVER!!!

 

First off I would TRULY like to aplogize to those of you who have sent me personal messages!!! I am so sorry. I would every once in awhile scroll through the boards late at night but never realized you actually had to be SIGNED IN in order to receive your PM's.

 

I wanted to say hello to everyone and give you an update on my daughter. We are still going strong and are still tic free.

We have remained on topamax, but only 25mg. She is 45 pounds and this is a low dose for her weight but my husband and I agreed that we would never increase. Most side effects listed with meds are from adult doses and we have never had any side effects at all.

I also met a very nice Doctor. His daughter attends my daughters school and is also in her class.

We got to talking a bit back right before I started the topamax and the one thing he told me is that....there always may come a time for meds and that everyones situation and circumstance is different. (He does not vaccinate his children by the way) And this is a DOCTOR!

Anyhow we talked for a long while and he told me if I walked away with anything to always remember when it comes to meds....START SLOW AND STAY LOW. He said the first thing people do when they do not see a result is to increase. They never give the body enough time to adjust to the medicine and see the benefits before the doctor orders an increase.

I followed his advice when we started the topamax. Everytime we saw the doctor they always wanted to increase!!! But I refused and I am so happy that I never did. We started on topamax at 15mg for 2 weeks and then increased to 25mg and never went up from there.

Just when I thought it may not be working....it did and things have been wonderful since. I guess what I am trying to say is that starting meds is a decision that I can only hope that no one would ever have to make. For us it just came down to a quality of life.

My daughter was melting away emotionally and so was everyone else in the house. I don't even like to think about that time.

We also had to take out a loan just to pay for everything we did back then in order to treat it naturally.

 

The only other thing she takes is a multi vitamin. We were using the xtend life brand and I still use them myself but I recently switched her to the new one out from Mercola.

 

We have and had visited a new neuro. If any of you remember our plan was to come off from topamax to see where she was at and to what degree the tics would come back at. So we have the go ahead now to stop the topamax.

My husband and I have deceided to wait until school lets out to do this. She is a VERY happy girl and loves school and I do not want to mess with that just now. Not to mention she just finished with SAT'S and it would have broke my heart to have the severe tics interfere with her tests and her emotions. She is doing EXCELLENT and even seems advanced for her age in school and she is SO excited about starting 1st and 2nd grade!

 

The neuro also told me because we are on such a low dose that there would be no need to wean down and that we could just stop all at once. My husband and I deceided to NOT do this. We are going to divide her cap in half for a week first.

I am scared thinking about what might come but also I have hope that the tics will just be gone or at best.....just little minor twitches here and there that will have no effect on her emotionally.

 

If things get bad again, I will ABSOULETELY put her back on topamax without even thinking about it.

But only at the dose we have remained on.

 

We still remain as green and pure as possible in this house as well. All our shampoos, soaps, cleaning products, laundry detergents are all natural. I just started using the method brand a few months back and am HOOKED!!!!!!!!!!!! I LOVE THEIR STUFF!

 

As far as food, I buy all fresh and organic when possible. We do though go out to eat and she eats whatever she wants with a little help from Mom in how to pick the most healthy choices available (we love crispers)!

 

The only frozen thing we do once in awhile is frozen pizza. We found a real YUMMY one!

 

We have found all natural fruit snacks, cookies and all at different stores and there is a really good brand called "Annies" everyone MUST try these! We buy them at Target.

 

We eat alot of potatoes and chicken here LOL. Her favorite lunch is just two pieces of bread (nature's own) with shredded lettuce, cucumbers, olives, peppers on it.

The food thing for us I guess was easy because we really didn't have to change it that much. The offenders or should I say "KNOWN" offenders were easy to get rid of.......I just STOPPED buying them. You would be surprised what kids can get used to if there is just nothing else availble for the hungry tummy's!

Her favorite and drink of choice is water!

 

In my daugters case her tics got so bad she would ask me before she put anything in her mouth! She would say will this make them come back??? In the beginning she even refused ice-cream. Tuff little thing for a 5 year old.

 

We are not sure if the healthy decisions as far as food and products also have an effect on her tics going away but it wouldn't matter, its just a way of life for us and pretty much has always been. I dislike all the YUCKY stuff in food these days and always have. I am just not so sure it had any effect on her tics at all. Don't get me wrong....the healthier choices we make will make us healthier there's no doubt about that but my daughter never ate the junk before her tics came and they came anyhow. When we went on vacation one time when her tics were at the worst.....they all disapeared!!!!!!!!!!! for the whole vacation! We even talked about moving at one point.

This was also ironically the worst she ever ate in her life! Who knows what we were really eating at all those fast food places!

I know there can be a sensitivity to some foods but I do have to say that when I was younger my MOm (the health freak) had me tested for allergies (food and all) and the list of what I tested positive for was too overwhleming for even my Mom. I know there is more junk in the foods these days but she never elminated anything from my diet and I still eat all the foods that I tested sensitive to.

I am sure we all get a little bloated and gassy...thats the food! I can actually tell when I have ate something that I am sensitve to because of the digestive part....but I eat it anyhow LOL Green peppers and eggs are a big one for me, but I just don't eat them everyday.

 

So I guess even the healthy food can cause some problems. Maybe just everything in moderation is best. (But leave out the chemical junk)

 

I sure hope everyone is doing great and I wish gods speed to those who may need it.

As always....you are ALL in my prayers.

[crazy]

myrose,

 

How long did it take for you to notice the medication working? My son has been on Topamax since mid Novemeber and was doing real well. About 3 weeks ago the tics came back full force. He is on 30 mg. and weights 71 lbs. We are thinking of trying 45mg. It took 1 month on meds before we noticed any difference. The tics never fully went away, but improved greatly.

[EAMom]

Hi Crazy,

 

My opinon...

 

I would get a strep throat culture of your son ASAP (if it has only been 3 weeks he may very well still be positive)...he may be PANDAS or he may be a kid with tics/tourettes who reacts to strep (among other things).

 

A lot of PANDAS kids get strep and their only symptom is tics or ocd or other behavior changes (no sore throat etc.).

 

A throat culture is a pretty benign thing to do...I think it makes sense to at least do this before increasing meds.

[mommyof2]

So glad to hear how well your daughter is doing on Topamax. I too am so happy with the results I have seen in my son. We are on 50 mg and he is 11 years old and weighs 69 lbs. He is pretty much completely tic free now and we do not really limit his food intake or activities. The mild one he may do here and there usually when he is overexcited is not noticable to others, just mom LOL. I feel as if we had exhausted all other things for our son before we went to the medicine and do hope some day to be able to back off and only do 25 mg and eventually stop (my my mouth to Gods ears). Anyways I wanted to thank you for all your kind words when I was on the fence to try this!!!

 

Mary

[Toms_Mom]

Thanks for keeping us updated myrose and Mary! I still check in every now and then to see how everyone is doing. My son seems to be doing well, (keeping things mild) with the healthy diet for now. Supplements have not seemed to help so if things ever get worse I would consider meds, so I appreciate hearing others experiences with them.

 

Thanks,

Mary

[abbe]

Wendy and Mary and all others,

 

I wanted to post an update on Nicholas on this thread because thanks to Wendy and Mary I finally put Nicholas on Topamax on February 14. To give you an idea as to how hard is was for me to make this decesion I filled the script and kept it on my desk at home e mailed Wendy, Mary and cried for two weeks trying to figure out if I should or shouldn't start it. I would have to say that I safely tried EVERYTHING first with Nicky. Food, supplements, allergy testing, no screens, energy healer,, reflexology, on and on. Nicholas tics started last summer as an eye roll but "I missed it" and thought he needed glasses. He did in fact need glasses so it through me off. On 10-31-08 at his Halloween party at school he came down with a throat clearing tic, the eye roll and the neck tic. I thought he was getting a cold because he described it like my throat hurt. He went with his dad that weekend and came back Monday and I could't believe it he was NON STOP throat clearing and neck ticcing. He was really, really upset saying his throat hurt, his neck hurt and make it stop. I immediately starting researching what the heck was going on and found bonnie's sight. I had him tested for strep that week although he never got sick and it was negative. It was the quick test though and I still have never had the more in depth blood work done. He went on Bonnie' supps and I saw a good improvement, Then we dropped dairy and wheat and I saw a good improvement, the we did the acid oat urine test, the neuro. urine test, and allergy testing (one half of it). I tailor made a nutritional program for him and pulled him off dairy. I was less than thrilled with his DAN doctor (Magaziner NJ) In any event we had our ups and downs but in early December he went tic free for 21 days and I was thrilled. He always seemed to benefit from this healer in Mietek Wertek. But after Christmas the neck tic came back. I have to say that he got a computer in his room at the time because I wanted him off the Xbox. My kids can only go on when it is the weekend. but we did have a "break" in school so he was on a little more. When his neck tic came back I also took him to see a movie and within a day he had this neck jerk that scared me to death. He would have to hold his head in his hands to eat food to keep it still because for some reason the "act" of eating makes him tic. For the longest time he cleared his throat only when eating.

 

On February 14 his stomach tic came back and he was very, very anxious. I started him on the Topamax that night. 15mg. My son is going to be 8 in June and weighs ??not sure haven't put him on the scale lately 55 plus he is average built.

 

Within two weeks he was tic free. I noticed a huge change in his behavior that I attribute to the Topamx relieving his anxiety about having tics in general. he is so much happier because he feels "normal" again. Next week we are going for a dried blood test to see what that reveals.

 

I never intended to put/keep him on Topamx to "mask" the issue. I want to try and find the root cause and let the body heal.

 

Last week Nicky's neck tic came back (mild but there) prior to that on the Topamax only the eye roll would show. Increasing his b vits stopped the eye roll. When his neck tic came back I "panicked " it did come back after a weekend at home with me where he used his computer. So this weekend I am taking it out of his room and this makes me sad. He only gets to use it every other weekend for tow 30 minute intervals and really appreciates the time and I am taking it from him out of fear that it started the tic again. Prior to the neck tic he would tic while using it and when off of it the tic would stay away.

 

This has been the hardest part making these decesions that seem "mean" but are in his best interest. It really sucks being a mom sometimes...

 

In any event I wanted to let the board know that I have two older sons one who "has" add and one who went through OCD for a year. I never even considered medicating my boys never once. I gave them herbs and vits. but no where like how I do with Nicholas. My older sons OCD was "healed" through a great, great therapist. It was BAD> I guess I am just telling you this because I am not a medicine person but if a medicne can work at a low dose with 0 ZERO side effects then it is more than OK to consider in my opinion. You have to weigh the pros and cons.

 

 

Sorry for rambling I just know that I want to update everyone as this puzzle continues to be seen.

 

 

Thanks again to Mary and Wendy for giving me the strength to make the right decesion.

 

 

abbe

[myrose]

Abbe

I completely forgot something I have been wanting to tell you. We started on topamax at 15mg for around two weeks, we then went to 25mg. After a few weeks or so on this dose we had some minor eye blinking and things. When I reported this to our neuro at our next visit of course they suggested an increase. Foolish as I was back then...I agreed. It was at this time we used the samples given to us which were in the tablet form (we use the sprinkle caps)

Anyhow this is the time I reported on the boards that something went VERY wrong with my daughter. It was awful and just memories of how it used to be came back! I was just about to fall apart again.

 

I was trying to figure out what was happening or if the topamax was just not working anymore. I stopped all supplements (she was on a detox program for heavy metals) from a dry blood analysis as well.

 

And I also stopped the increase that we started with the topamax. Within a short time she was back to normal and the eye blinking went away as well as did the little body twitch that was beginning to pop through again.

 

Anyhow I never found out what happened. It could have been the detox supplements, the change from sprinkle caps to tablet form of the topamax (they have different ingredients) or just the increase of dose.

 

I am now quite postive it was the increase in the topamax. I feel we never gave the initial dose long enough to work. This is why I am so strong in words when it comes to the low doses and giving the body time to adjust.

 

We finished the detox after that with no problems and everything has been fine since then. I also used one of our samples in the tablet form for a week and again no changes.

 

It had to have been something with the dose increase in my opinion. Maybe too much of something sometimes can cause negative reactions as well.

Just a thought....wish I knew what really happened during that time....but now I just don't care....she is doing so good and we are all so very happy right now. Hope things stay good for you and the taking of the computer won't be as hard on him as you think.

Please keep me posted okay

Have a great weekend!

[lss]

Hi MyRose,

 

I'm just wondering how you got the neurologist to prescribe your child topomax? Was the diagnoses for your daughter a tic disorder or tourettes or what? We think our son is Pandas, but his biggest symptom has always been the tics. I'm so glad to hear she is doing so well. All my best and continued success with the topomax.

 

Linda

[myrose]

The day she started the uncontrolling and sever head bobing accompied with the body jerk is when I called the neuro in tears.

The nurse practioner is actually the one who suggested it. She said it would help with the head thing. We never expected it to control everything and at this point I do not even care to understand why it works so well for her, but it does.

Initially she had a mildly abnormal EEG but after repeating with a second neuro it was not related to any type of seizure activity nor did it have anything to do with her tics.

Her 3rd EEG a month ago showed normal so I guess the first neuro was right all along but I really wanted to believe that it was some type of seizure related thing. I guess at least then I would some how feel better in knowing the reason for it all...I don't know.

But I am glad I listened to the nurse practioner that day and was desparate enough to have just a teeny weeny bit of an open mind to the med.

Topamax is used as a seizure med, weight loss, migraine prevention and tics (movement disorders)

When you read the side effects you really have to consider that they are speaking in adult doses.

The only thing I like about it I guess is the fact that its the only one that does not have the TD side effect.

Wouldn't that be a lovely side effect on top of the tics!

Have a great weekend....I am off to rub some olive oil on my BABY SOFT feet!!!

[momaw]

Hello,

I'm kind of new to the forum. It sounds like Topamax seems to be working well for several people. Does anyone know why it works?

Thanks!

[abbe]

[quote name='myrose' date=

 

Wendy,

 

I went to a clinical nutrionist for the blood anylasis yesterday for me (I am taking Nicholas next weeK) she said lots of good stuff that I want to share with you and the forum. ALL POSITIVE. I actually am running out the door to my kids opening day baseball parade. In any event my adrenals are exhausted (Big surprise!) The one thing she shared with me was to avoid the following foods because they are fungal toxins called Mycotoxins and effect the brain

Alcohol

Corn (except on the cob

wheat

Peanuts, peanut butter, cashews and Pistachios

Mushrooms

SoySauce

Balsamic Vinegar

Cheese especially aged

Chocolate

Citric acid

 

I got to thinking on this of all the people that think it is allergies (including me) at times that make the tics worse when it could be these toxic foods are just to much for them to handle in the state that the brain is in already. I know food restrictions are very hard on kids (it almost drove me over the edge with Nicky) but I think we should be aware at least what the "bad" ones are

 

 

abbe

[Caryn]

In any event my adrenals are exhausted (Big surprise!) The one thing she shared with me was to avoid the following foods because they are fungal toxins called Mycotoxins and effect the brain

Alcohol

Corn (except on the cob

wheat

Peanuts, peanut butter, cashews and Pistachios

Mushrooms

SoySauce

Balsamic Vinegar

Cheese especially aged

Chocolate

Citric acid

 

We found that these made our son tic through trial and elimination too. He was IgG tested allergic to Brewer's Yeast, Corn, Wheat, Peanuts, Chocolate, and we learned that Citric Acid was a HUGE problem for him in time. I eliminated Soy because I was forced to make bread and most food from scratch and so soy was just eliminated as a result as it wasn't in the ingredients I was buying. We eliminated all dairy for the first six months too.

 

After two years we are back to eating occasional cheese (just introduced recently), chocolate (for about a year), and occasionally naturally derived citric acid-- and I do mean occasionally-- like only when I am in a pinch. He does have dairy but never cow's milk (we allow kefir both from goat and cow) and does have minimal soy when it is an ingredient in a bought product now (there are so many available now). I really do believe that when the immune system is weakened avoiding these things can help healing.

 

Anti fungal foods and probiotics have also been very beneficial. We have incorporated coconut, garlic, onions, etc.... into our regular diet. Just think raw food and you will be fine. We watch the sugars. I think that when healing and balance occur that some of these things can be successfully reintroduced in moderation after a long period of avoidance. Many folks reading this might get overwhelmed by the idea of removing all this stuff. I know I was. After a couple of months, though, you get into a new routine and when the kids re-adjust they (and you) will be just fine with it. My kids now prefer foods that astound my family, friends, and neighbors. It is all in what you are used to, I guess.

[myrose]

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!

[mommyof2]

Abbe

glad we could help you through this.... I know it was the toughest decision I ever had to make for my son to put him on medication but am thankful we tried it for the results we see. Our son did 25 mg for about 2 weeks and it slowed the tics down but he still had them, then we went to 50 mg and within about 2 weeks they were pretty much all gone. He started Dec.20 and now we really don't see anything that stands out and we had comments from many friends who had not seen him for awhile how they notice a change in him.

Our pediatrician actually prescribed this for us. We had been talking to him for awhile about them and he had diagnosed our son with Complex Tic Disorder and suggested some of the other medicines at first, that lower the blood pressure and I said absolutely not. Then at one visit he had mentioned Topamax and the great results. At about the same time I was reading this on this board from Wendy and I started to listen to him and did more research and after all my other roads came to a dead end I reluctantly did it.... I am hoping to someday take him back down to 25 mg hoping that will do it for him, but for now I don't want to mess with it. He is finally adjusting to not ticcing and feeling so good. He still plays his video games (some PSP and Gamecube) but not alot because the weather is nice so he loves to be outside....rainy days are a different story and does computer like his Club Penquin and loves to google everything, and nothing seems to effect him.

Mary

 

 

 

Wendy and Mary and all others,

 

I wanted to post an update on Nicholas on this thread because thanks to Wendy and Mary I finally put Nicholas on Topamax on February 14. To give you an idea as to how hard is was for me to make this decesion I filled the script and kept it on my desk at home e mailed Wendy, Mary and cried for two weeks trying to figure out if I should or shouldn't start it. I would have to say that I safely tried EVERYTHING first with Nicky. Food, supplements, allergy testing, no screens, energy healer,, reflexology, on and on. Nicholas tics started last summer as an eye roll but "I missed it" and thought he needed glasses. He did in fact need glasses so it through me off. On 10-31-08 at his Halloween party at school he came down with a throat clearing tic, the eye roll and the neck tic. I thought he was getting a cold because he described it like my throat hurt. He went with his dad that weekend and came back Monday and I could't believe it he was NON STOP throat clearing and neck ticcing. He was really, really upset saying his throat hurt, his neck hurt and make it stop. I immediately starting researching what the heck was going on and found bonnie's sight. I had him tested for strep that week although he never got sick and it was negative. It was the quick test though and I still have never had the more in depth blood work done. He went on Bonnie' supps and I saw a good improvement, Then we dropped dairy and wheat and I saw a good improvement, the we did the acid oat urine test, the neuro. urine test, and allergy testing (one half of it). I tailor made a nutritional program for him and pulled him off dairy. I was less than thrilled with his DAN doctor (Magaziner NJ) In any event we had our ups and downs but in early December he went tic free for 21 days and I was thrilled. He always seemed to benefit from this healer in Mietek Wertek. But after Christmas the neck tic came back. I have to say that he got a computer in his room at the time because I wanted him off the Xbox. My kids can only go on when it is the weekend. but we did have a "break" in school so he was on a little more. When his neck tic came back I also took him to see a movie and within a day he had this neck jerk that scared me to death. He would have to hold his head in his hands to eat food to keep it still because for some reason the "act" of eating makes him tic. For the longest time he cleared his throat only when eating.

 

On February 14 his stomach tic came back and he was very, very anxious. I started him on the Topamax that night. 15mg. My son is going to be 8 in June and weighs ??not sure haven't put him on the scale lately 55 plus he is average built.

 

Within two weeks he was tic free. I noticed a huge change in his behavior that I attribute to the Topamx relieving his anxiety about having tics in general. he is so much happier because he feels "normal" again. Next week we are going for a dried blood test to see what that reveals.

 

I never intended to put/keep him on Topamx to "mask" the issue. I want to try and find the root cause and let the body heal.

 

Last week Nicky's neck tic came back (mild but there) prior to that on the Topamax only the eye roll would show. Increasing his b vits stopped the eye roll. When his neck tic came back I "panicked " it did come back after a weekend at home with me where he used his computer. So this weekend I am taking it out of his room and this makes me sad. He only gets to use it every other weekend for tow 30 minute intervals and really appreciates the time and I am taking it from him out of fear that it started the tic again. Prior to the neck tic he would tic while using it and when off of it the tic would stay away.

 

This has been the hardest part making these decesions that seem "mean" but are in his best interest. It really sucks being a mom sometimes...

 

In any event I wanted to let the board know that I have two older sons one who "has" add and one who went through OCD for a year. I never even considered medicating my boys never once. I gave them herbs and vits. but no where like how I do with Nicholas. My older sons OCD was "healed" through a great, great therapist. It was BAD> I guess I am just telling you this because I am not a medicine person but if a medicne can work at a low dose with 0 ZERO side effects then it is more than OK to consider in my opinion. You have to weigh the pros and cons.

 

 

Sorry for rambling I just know that I want to update everyone as this puzzle continues to be seen.

 

 

Thanks again to Mary and Wendy for giving me the strength to make the right decesion.

 

 

abbe

[myrose]

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.