Topamax --myrose

[EAMom]

I came accross this on the topamax website :

 

Often, people with watery eyes, runny nose, nasal congestion and headache may think they have a sinus headache. What they may be experiencing is a migraine. Nearly half of all migraine patients experience ocular or nasal symptoms, along with head pain. That's why it's always critical to talk to your healthcare professional.

 

So is it possible that the stuffy noses these kids are getting are somehow related to migraines?...like a migraine without the headache?

 

Our dd got "ocular migraines" (saw "ghosts", bubbles) and headaches when she had active PANDAS. For the most part, the "ocular migraines" did not have an accompanying headache.

 

Maybe the topamax is actually a good symptomatic treatment for PANDAS...somehow stabilizing inflamed neurons???

 

It's interesting that it's used for seizures, migraine prevention, tics, ocd (usually with an ssri). It's also interesting that it helped myrose's dd at such a relatively low dose.

[myrose]

EAMOM...I just posted to you about researching topamax and trying to find a link tonight. I see you are way ahead of me!

You are also corrrect with the low dose info...she started out at 15mg and then after a week 1/2 we went to 25mg and never bummed up from there. I am now wondering if the 15mg would have been enough to show the miraclous improvements.

Anyhow this is the only thing that she is on...other than a multivitamin (all natural of course)

 

Speaking of the vitamin...I posted a bit ago about fructose. One night when I picked up her vitamin bottle I saw something I never did before on the label. It said "sweetened with fructose" I paniced and tried to remember all my reasearch but had complete brain fog as to if this was one of the BAD sugars.

I wrote a post asking about it.....and to my surprise one of the other posters (can not remember who) reported that when she researched topamax she saw something in the ingredients (or something) that was a sugar like this. I am so sorry that I just cannot rememeber the whole thing. I will have to read back over the post later on.

I was relieved by the way to have found out that fructose was a good natural sweetner.

 

I will try to find in a bit....Just got back from soccer practice and I have to bath my HAPPY little girl (they won) and get her in bed.

Thanks again EAMOM! I will let you know what I find as well. Its all becoming VERY interesting to me.

[myrose]

Oh by the way EAMOM (I keep forgetting to ask) You and Buster seemed to be filled with a wealth of information! Do you know each other?

[EAMom]

he's my dh!

[Pudgeo]

to EAMOM...

my son was mis-diagnosed with seizures for 6 months..during this time he was put on depakote which greatly improved his symptoms(I found out later it's an anti-inflammatory) he had an allergic reation to it so we had to try something else..so he was put on keppra & lamictal which are both mood-stabilizing type drugs...they helped him a little..but then he became worse and I found out it was not seizures....Sz meds can help alot with PANDAS symptoms, but yucky side effects..who wants their kid on these meds long term?? not if you can help it!

My son was tried on trileptal, tegretol, topamax, dilantin, phenobarbital, keppra, lamictal, neurontin, and there is probably more...those Dr probably would have kept prescribing meds..thank goodness I found out it was PANDAS.

Sarah

[EAMom]

Pudgeo,

is your son doing better now? Able to go to school? Are you doing Azithromycin?

When a kid gets on so many multiple meds it also becomes difficult to sort out what is the original dz and what are side effects from meds (like worried dad found!).

 

Also, do you remember what dose of topamax your son was on?

[myrose]

My daughter was tired on the chlonidine they first prescribed back when all this started. After her nightmares began and her blood pressure going a little too low for me...I immediately took her off. On the topamax though...she was never tired so thats strange. I am sorry you had such bad luck with all you tried.

I also heard that doctors (and have also come to this conclusion myself) always over prescribe! The trick to all meds is to start out low and go slow until you reach the benefit you are looking for. Everytime we go in for follow ups they STILL want to bump her up on the topamax!! Why in the world would they want to do that if the low dose works? Drives me crazy. Side effects are also doseage related, and all the studies on the net are usually in reagrds to adult doseages.

Lastly no I do not want to keep my child on topamax all her life but I will say this.....If she had epilepsy...she would HAVE to be on it no matter how I felt... Just like blood pressure meds.....most HAVE to take them.

 

Its hard to feel like you have made the best decision sometimes. The trial and error alone is enough to drive someone insane when dealing with this stuff. I hope we get to the bottom of it soon.....

[bmom]

My latest thinking on the ticcing is somehow it is related to seizures. I watch my son tic when he is exposed to light, and I know that light causes some people seizures and I have to think that they are tied together somehow. Maybe it is a different part of the brain, but I do believe that they are related. Also, some people tic more while on the cell phone which has also been implicated with some seizures.

[Chemar]

bmom

have you read Claire's many posts on "screens" and "photosensitivity" / "photosensitive" on the TS/tics board

 

some kids have photosensitive induced tics even tho they have no seizure activity. Many react to flicker, fluorescence etc . Altho this is common in epilepsy and other seizure disorders, photosensitivity isnt always associated with these

[bmom]

Yes, thank you. I have gone through Claire's posts. They are very informative. Even though I know that photosensitivity is a factor in making my son tic worse, it is not his main component. He has been screen free for 7 months, and he still tics, tics, tics, some days. Yet when those things are incorporated, it makes the situation worse.