Faith and Lurker

[myrose]

Thank You so much for asking about my daughter! Your very thoughtful people especially so being that you have the problems to deal with yourselves yet you still show concern for others!

My daughter is actually doing FANTASTIC! We ended up increasing her topamax to 25mg per day. I will go no further up unless of course her next EEG still shows some slowing.

The change is night and day for her. She still had a few head things going on here and there but not much.

We did visit a chiropractor one time. I felt after that BAD BAD Mothers Day weekend she would probably have something out of line from all that head bobbing. Her neck was pretty bad, he fixed her up and gave us some exercises to do at home and the pain went away shortly after.

Then last week I added the magnesium Taurate from Cardio Vasular (I take this one too) and the remaining little tilts have been gone now for two days!

 

The topomax takes a good 6-8 weeks to build up all the way in the system (from what we are told anyhow)

 

But I have to tell you that the biting of the lip and inside of the mouth is GONE, the foot stomping is GONE, and the head bob has been completely gone for two days now. I keep looking for eye blinking but have not seen that either. The only thing I do not like is that when she gets upset now she YELLS and screams. It disapears just as fast as it came and I have discovered that keeping her calm keeps that at bay. Hopefully this is a side effect that will pass but for now we will deal with that when it becomes a problem. Its nothing different from a 5 year old having a tantrum in my opinion and I really do not know for sure if its from the topamax due to the very low doseage. 25mg is a VERY LOW dose for her body weight of 40 lbs.

 

At any rate I am enjoying the CRAP out of this. Always so scared of what tomorrow will bring when I go to bed at night.

 

We are meeting with a new neuro because of all the confusion with the old one. Still do NOT understand why the neuro did not put her on seizure meds if this slowing showed in the EEG which was done LAST September! He did leave a message on my machine finally. He said that there was some slowing on the EEG but nothing that he was concerned with....very puzzling. Also mentioned that the topomax would help with this slowing and the tics as well. We were told they were not related. She will repeat the EEG in September and then we will go from there. If the slowing has stopped I am planning on starting Bonnies Vitamins. We tried before but she could not swallow and refused them in EVERYTHING. Her new pediatrician recommended B12, magnesium and fish oil.

 

I am scared to rock the boat here but was told that starting the vitamins now while still on topamax would be okay.

Right now its just topamax and mag taurate. I am worried here and want to do something soon because of the lack of things she is not getting (like from a multi)

 

If I go ahead and just add the B12 and fish oil then I wonder about the others as I just mentioned like zinc etc...

 

I think I may just add a multi to the topomax and mag taurate. Then add the B12 up to the amount that was recommended which was 500mg a day.

Any thoughts?????

 

 

Oh, I am not sure if you know but topomax is being used as a tic controller now and also used for losing weight. There are a bunch of other things its being used for too but I am at this point TOO scared to read anymore about it. I want to enjoy this time for as long as we can without FREAKING out about the medicine and all. Just need a breath! School is out for her on Thursday and I want to have some fun with her and get back to the norm we used to have. I realized when looking back that this whole thing consumed me day and night! All the quality time I should have been spending with her was robbed from her due to me being on the computer and reading every second of every day!

So now being that the Doctor has said that she NEEDS to be on the topamax...I will have to live with that for now and enjoy. I don't like medicine in childen unless its absoulely neccesary and will hope and pray that when she comes off the topamax...the vitamins will continue to keep her tics at bay.

Maybe the reason to start the vitamins now.......

Sorry my posts end up being so dam long! How are you Faith and Lurker?

 

Faith can you send me your email address.....Thanks (I have that paper I wanted to send you) unless Carolyn already did.

 

I hope all is good with you both and may you NEVER EVER (no matter how bad it gets) experience what we did on Mothers Day weekend! I am still somewhat shaken up over the whole thing. The mag taurate helps alot with me. My heart doctor appt. is on Friday and I am expecting to hear the palpatations are from anxiety. This is what this thing can do! At least to me anyhow.....GOD BLESS!

 

 

OH! I came back to edit this and add that topamax is also shown to be beneficial in OCD, maybe thats why its helping her with that as well.... To sum it up it appears for the time being to be a little MIRACLE pill for us....Just when we needed it!