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hi lurker, how's it going with you? you know, as long as you said it, I will go out and say my opinion is the topomax is my vote. It does take a few days at least to start working. I remember that it took about two weeks after weaning off for tics to return. I don't know re the zith and don't know why that was started, but the topomax kept things at bay for a year despite some infractions.

 

If the antibiotics cannot be gotten at this time, I'd play it safe and build up to the dose of topomax that was taken for now, and then if something else is tried, you can always wean off again (if that is safe re the doctor).

 

wow, this does not seem to be a good summer for any of us, huh?.. (sad face --- my emoticons don't seem to be working). (and now a confused face). lol.

 

Faith

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The only reason I thought it was the zith and not the topamax was because we were on the 15mg since the clench had started. It was almost two weeks and it did nothing. Our original dosing was 25mg and that is where we had such great results. I started the 25mg but stopped after two days because I wanted to incorporate the tic tamer and really did not want to wean off the topamax again after we cleaned the diet.

 

Anyhow she was progressing the whole time on the 15mg and the 25mg wasn't given long enough to make a difference. So right after the Zith was started BAM she calmed and even the bathroom trips subsided (these urges were out of control the whole two weeks on the 15mg) not to mention the weird confessing thing.

 

Then after the Zith stopped the very next day the calm disappeared and sure enough the "I feel like I have to go pee pee but it won't come out" started again.

The 2nd and mostly the 3rd day off from Zith was really bad as far as the hard wink (which is weird because its always only on one side of the face) so this brought us to Tuesday and thats when I started the 25mg again of topamax.

She has been calm with minor eye movements over yesterday and today.

 

So who knows....sure wish I did.

 

While on Topamax since last May the only thing that popped through here and there was the need to pee and the facial wink on one side. They only came here and there and barely at all but each time she went on Zith the urge to pea and the facial tics stopped immediately (like the next day)

 

I am too confused but I have deceided to keep her on the 25mg as we had been. I am getting overwhlemed again and so after we return from New York I am going to make an appointment with a new Pediatrician. I will just pay out of pocket so I can see who I want. My plan is to maybe visit Latimer or Creations own.

 

I just want to make sure somehow someway that we understand for sure what we are dealing with.

 

The only diagnosis we got from 3 neuros was that she has a tic disorder. One of them said she would qualify for a Tourette Diagnosis if a vocal came into the picture and the other two told us that she is not TS. Their reasoning was that TS tics are more swift and fast and that my daughter did not look like that to them.

I never understood or figured that out! I gave up!

 

Cheri....if you are reading this...I tried SO HARD with Dr. Franz to do the antibiotic trial (just to see) but got no where.

I also stopped going because we lost our insurance and she was quite expensive for a sick call. Lastly to be honest I became very unhappy there as well because she only works a few days if that and so everytime we went to an appointment we saw one of her associates. It was a different one everytime and everyone read notes jotted down from the previous one and it got all too complicated to try and start from the beginning everytime we went.

Also after waiting for a long time for our appointment...when we finally got in there and actually saw her...her cell phone rang...and she just wheeled her chair out int he hallway and we heard her chat and make dinner plans for the night. This seemed to upset me for I was a Mom that was SO worried about my daughter and pratically could not wait to see her and it just did not feel right to me. I apologize if you or some do not see the big deal but my daughter was at her worst and I was an emotional mess. I thought she should only take emergency calls while seeing patients. We continued to wait and listen to her chat and laugh. I was fuming that day. Thought it was rude and really figured we were not getting anywhere there anyhow. She wanted my daughter on fish oil and mag. We did though get the dry blood analysis from her but again unfortunately she was not even there to explain it all to us. The results were read and explained by yet another associate who did not even have the slightest background on my daughter. I tried numerous time afterwards to call the office and ask if the topamax was okay while taking all the supplements they recommended to distract the metals from her and no one ever called me back. I never called back at that point either and if you remember that is when we stopped that supplement program because when it got to the end when the fish oil and (something else that I can not remember) was started she had a bad reaction.

 

 

I would be okay with a tic disorder and continue to treat it naturally or even continue with Topamax if we had to, but its the frequent urine thing and the weird confessing that bothers me. I think to myself that what if she is Pandas and I never treat it?? I hear that the swelling or damage to the basil ganglia is un reversible at some age. So this is where I am at and why I wonder about Pandas alot.

 

If this is incorrect info please let me know.

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I am sorry, Myrose, I really don't mean to aggravate you. I just didn't understand why everyone suspects PANDAS in your child. In my opinion, the fact that the Topamax worked indicates that it is a tic disorder, not PANDAS. I am no expert on PANDAS, but it seems to me that the mothers on the PANDAS board should be able to tell you if Topamax works for their PANDAS children. I will make an uneducated guess that it doesn't.

 

Even if you look at this from the other angle and assume she has PANDAS, then you know that the Topamax controls her PANDAS. Topamax and zith are both drugs. Both require prescriptions. Both have side effects. Why would you consider the antibiotic the better choice?

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Hi myrose

 

yes, I agree that was not acceptable for dr Franz to do that plus the associates thing too

 

we only saw her that one time almost 10years ago and things went well, but then I was only there to get a referral to Shands, and to get her take on things at the point we were at.She did introduce my son to acupuncture and we then followed up with that with my longtime acupuncture therapist who he now still goes to. The reason we didnt return was she was so far away from us (we are north of Orlando, nearer Sanford) and the expense which for us was out of pocket.

so sorry your experience wasnt good with her.

 

my son got so disillusioned with all doctors that he no longer goes to them other than to our local clinic for routine annual physical. his accupuncture therapist and chiro are the only ones he trusts anymore :mellow:

thankfully he is overall very healthy especially now he has the Crohn's under control. he doesnt even get colds anymore which he attributes to his healthy lifestyle/diet/supps etc

 

(((((((((((((((((Wendy)))))))))))))))) I do pray you will get answers

 

with the added history of family tics/OCD that you have described, IMHO it is very possible that, just like with my son, there are more than one set of variables & triggers that cause the symptoms for your dd. I do hope you pursue the ruling in or out of strep involvement tho based on her most recent symptoms plus the quick response to the azith.

 

In retrospect, and since I learned more of my husbands severe strep/scarlet fever around age 4-5, I wish I had followed up more than I did on the PANDAS, or at least PITANDS, aspect. I have always suspected a PITANDS component to my son's initial severe onset of tics & OCD, and I do personally think that, along with other factors, triggered the intense switch on of his genetically inherited disposition to Tourette Syndrome, a dx which I fully accept for him based on family history. I think in many cases, this isnt just a "one cause" syndrome of tics and OCD etc

 

hoping your trip to New York is peaceful, restful and fun :wub:

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Wendy

I just wanted to mention to you that it does seem to take a bit of patience for the topamax to really work. I wish I would have kept a journal back when i first put him on the topamax to see exactly how long it took to get in his system completely but I do think it took over a month to be at their best. I noticed change by alittle over two weeks but I think that was because they were so BAD for so long stopping alittle had me so excited. He would tic constantly.... only time he was still was when he would sleep so getting some still time was wonderful for me. Then when we went to the generic it took about two weeks for the vocals to start...that was about how long your daughter was off when things started.... then about a week and the facial started to go. Now he was on the brand topamax for 5 weeks and we still have vocals and the eyes but he also has some periods where he does nothing at all. I know when back in the spring he still did the hand hitting his leg but only when exciited and it didn't really stand out to others and we just took it as his personality. Now he has not done that since the other things started so maybe the topamax does not completely take them all away it just decided to move as it is normal for tics to change. If we could get the vocal to stop i would say what he does is so mininimal it is not concerning to me....and it is not like a loud nose as i hear of some talking about just a hmmm but I guess to me it drives me nuts because I just like quiet and it is easier for me to concentrate whenit is quiet andI just get concerned about when school starts if it will be distracting to the student beside or in front of him....maybe not... he plays with his cousins, friends and sister and they are not bothered by it or at least don't complain about it.

 

We experiemented with the topamax a bit.... went to one capsule morning and two evening and then went back to just one morning and one evening but yesterday i decided to go back to two in the evning like it was when things were good....maybe he needs that boost at one time instead of spreading it around....we will see in a bit to see how it goes...like i said it worked like that before, now to just get it back.

 

I ? the whole PANDAS thing also and am having a strep culture done hopefully next week to see how that goes but wonder if it is something my son has since from what I read the tics come and go with sickness...no kids with PANDAS have them for months at a time with no change....before topamax our son never had any on or off time...they were constant.

 

Just wanted to share our experience with you.....

 

Mary

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my question about topomax is what kind of med is that? Is that a siezure med? I was under the impression that once you take a siezure med, it is not supposed to be discontinued and you have to take it forever. I could be wrong, but I thought someone I know who has siezures told me that. (don't know what drug he was taking, however,).....Has anyone heard that?

 

thanks

Faith

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If she has PANDAS, the Topamax is not controlling her PANDAS, only treating the tics associated with it. If she has PANDAS, the reason she needs antibiotics is to erradicate strep and then protect her from future strep exposure.

 

 

The fact that she has frequent urgency to urinate, along with the confessing, is a HUGE red flag for PANDAS. Do children who are strictly Tourette's also have the frequent urgency to urinate and the confessing?

 

Have any PANDAS children on this forum ever tried Topamax? In my opinion, Topamax could help decrease tics in PANDAS children, but it is doing nothing to treat the strep.

 

Colleen

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Fatih I thought it was a seizuer medication... when we went on it our pediatrician did it with the thought that we will be stopping some day so I am hoping it is not something that has to be continued...i have an appt. with him next week, i will ask him

mary[

 

 

quote name=faith' date='Jul 24 2009, 11:32 AM' post='35264]

my question about topomax is what kind of med is that? Is that a siezure med? I was under the impression that once you take a siezure med, it is not supposed to be discontinued and you have to take it forever. I could be wrong, but I thought someone I know who has siezures told me that. (don't know what drug he was taking, however,).....Has anyone heard that?

 

thanks

Faith

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Hello all, to answers ome questions.....When we first tried the topamax it worked immediately at the 15mg for the severe head bob and body jerk. That is why I questioned it when we started it back up because it didn't touch her.

We are now I think on day 3 or 4 of the 25mg and she has stopped everything again. The only thing that remains is the "I feel like I have to go to the bathroom)

This will be fun on the plane Wednesday. With the way my luck has been going we will hit a pocket of air while in that little tin can. Because of course she will not go in by herself. We will both fall to the bottom of it LOL

 

In regards to the topamax...yes it is a seizure med. Its also used for migraines and extreme weight loss. I have read a few things mentioning the help for OCD as well.

We are on a low dose so its okay to stop. If we were on a dose that we should be (per her body weight) we would have to wean down. The doctor told me even at 25mg we did not have to wean down but I have learned alot and chose to wean down to 15mg for 5 days before stopping. It went well with no problems.

Also if my daughter was having seizures and we were using topamax to control them...stopping suddenly could bring on more severe seizures.

I have read alot about it and all the 3 neuros I have talked with also told me all the same thing.

 

She has never had any side effects but we are also on a low dose and I refuse to go any higher and never will. Thats when it gets scary. So if this stops working well than I am not sure what we will do. I give it also at bedtime and this seems to work perfect for her.

 

After talking with the neuro's practioner today I have deceided to wean down to 15mg again. (she has only been on the 25mg for 3 or 4 days)

If things in a few days start to re-appear again than I will be convinced its the topamax at 25mg that stops it. I also mentioned that when we went to New York last time it all stopped so I really want to see what happens. This may give me another piece of the puzzle to put together but at least I will have something to start with again.

 

I will be armed with the 25mg in case we need it. I do want her to enjoy this trip so I am bringing it.

 

Also in regards to topamax and Pandas....EAMOM mentioned something awhile back how maybe its possible that the topamax helps with Pandas. It was something to do with swelling...I just cannot remember but I will try and look back now to see what I can find.

 

Thank You all so much for trying to help me figure this out. I truly appreciate all of your feedback and thoughts.

I will post as to what happens over the next few days. If things do pick up I am going to try my best to keep them to the point where they do not bother her so I can see what happens when we hit New York.

 

Or maybe I will just do nothing for now and keep her on the 25mg. Gee I really have to say that I do not know what to do. I don't want to keep uping and downing the dose so this will be my last shot and I want it to help me figure something out! UGH I am so frustrated and don't know what to do.

Thanks again everyone.

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"I also mentioned that when we went to New York last time, it all stopped"....................

 

myrose,

I am in NY.....do I sound like I'm whistling dixie here?! LOL.

 

j/k

good luck with everything and enjoy your trip! where in NY will you go?

 

Faith

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Hello Faith...Upstate New York. About an hour out of Syracuse NY. Where are you. The little place I am from is called Utica but everytime I mention it everyone says "WHERE"!???

The dissapearance of tics our last visit was leading me to believe it was allergy induced tics here at home or possibly something in our home here. We had it built and its just 4 years old but I guess you never know. Especially with all that dry wall from China UGH! I had that checked out too!

Thanks for your report on the Dr. Sims trip. You were going to be my deciding point.....so I am not going for now anyhow.

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myrose,

UTICA??, lol, j/k, I know it. I am way "downstate" lol, we live on Long Island about 45 minutes from Manhattan in "the burbs". .. I get it about the travel, but maybe it's just coincidence. last time this year we were in Cancun and the level of his tics was so good, just a few vocals here and there mostly at nite, I remember thinking "if he could be just like this even the rest of his life, it'll all be okay, I could live with that". Things are way out of hand here too, so I full well know what you are feeling. after coming home from this trip, my husband is so disrought, he literally cried himself to sleep last night. I am working on another game plan, I think I have to rethink and revisit some things that I have been way to lax on. hopefully in a couple months, we will both be posting some good news.

 

Faith

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FINALLY someone who has heard of UTICA! YAH! LOL

I have never been down your way. Its such a change now living in the FAST PACE of Orlando. I really have not adjusted and do not think I ever will.

 

I am so sorry things are not going well right now. And I sure do hope things turn around quickly so you can relax and enjoy the rest of the summer.

I know you are not one for meds and of course this is more of an alternative place but I was just thinking and wondering if you ever considered anything like topamax. Not long term but just temporary. Just to have or should I say "buy" some time to have a more clear mind and a restful one while trying other roads and other things.

Please do not get offeneded by me asking this....I am just curious, thats all.

I remember the month very well (last May) when my daughters body jerks were so bad she almost fell off a chair. It was then we started Topamax and it was then my husband too cried himself to sleep. If things ever get like that again I just do not know what I would do. I getting running weary of trying to figure it all out.

For some it seems so simple but I just can not get it!! The limitations of most things sometimes takes it toll on us all.

We always eat healthy but it would be nice to once in awhile just go wherever you wanted to eat and not have to worry if the ticcing gun will fire.

My daughter is never looking to snack on junk all day but you would think she should be intitled to indulge into that halloween candy from 3 years ago!

Maybe thats where we go wrong...maybe its the little here and there of the bad things. If thats the case, well then I do not even know what to say.

Wishing you a calm soon Faith! We have calmed to nothing and I feel as though a big heavy truck has been lifted from my chest. Finally I am able to take a deep breath again. I can not stand this, I really can not.

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Myrose, I was wondering whether when your daughter is on the topomax that when you do stray from diet do you notice an episode of tics? I am thinking at this time I may be coming to the conclusion that my son has both food issues and PANDAS. He was on zith for a couple of months and was almost tic free with a strict diet. I thought that maybe it was just PANDAS and strayed with his favorite food and found myself back to square one. For three weeks he has been moderately bad and two weeks of this without zithromax. I just put him back on full strength and noticed today his was a little better.

 

I think I find myself with two issues which overwhelms me some but we are all trying to help our kids just be kids. That is why I was wondering whether food factors into the problem while on topomax. If the zith doesn't get him to a point where he has peace I have considered topomax. He is 12 years old and in middle school which has its own stress on preteens.

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