did IVIG, pre-IVIG took Cam Kinase test

[dcmom]

If at all possible, maybe you can consider the Saving Sammy type dose of abx for a while. For my daughter, it took at least a month of treatment dose zithromax to help her. Could you find a doc to try something like this- where did you get IVIG- a month of high dose abx as a trial is no where near as involved or expensive as IVIG....

 

I really hope you see progress soon. I think it has taken others some time also...

 

Hang in there...

[faith]

Michael,

no improvement in tics either since you say they were mild? is he on any other meds still? and just curious, had you ever explored if any of his allergies were responsible for some of the behaviors, like any food allergies/sensitivities?

 

Faith

[fuelforall]

Michael,

no improvement in tics either since you say they were mild? is he on any other meds still? and just curious, had you ever explored if any of his allergies were responsible for some of the behaviors, like any food allergies/sensitivities?

 

Faith

 

Well, the motor tics were bad during the exacerbation but they have been mild since, except for the vocal ones which have always been pretty bad. He goes from silly to angry to silly and so on- sometimes I even prefer angry.

He's on Strattera and Abilify,

We have been around the block on gluten free, casein free, etc. He went on it six months and nothing worked. Did NAET and reversed his sensitivities but for good measure, we started LDA therapy eight months ago and THAT is paying off with his sinusitis so far. It was a long haul there because there was unmasking effects which provoked worse behavior. NAET revealed he was sensitive to vaccines and to water. So yeah, allergies have been an issue.

 

M

[faith]

Michael,

Just wondering in my mind if the meds could be clouding the issue? did your child respond favorably to the meds, I guess what I am getting at, is there any way the meds could actually be the offender here and have anything to do with some of that behavioral, i.e. hyper/anger, etc.? sorry, I have no experience with meds, but I've read so much bad, so just wondering. what did the doctor have to say regarding time frame of seeing improvement? what is his take? (which doc btw?)

 

what is verbal dyspraxia? and that persists?

 

Faith

[fuelforall]

Michael,

Just wondering in my mind if the meds could be clouding the issue? did your child respond favorably to the meds, I guess what I am getting at, is there any way the meds could actually be the offender here and have anything to do with some of that behavioral, i.e. hyper/anger, etc.? sorry, I have no experience with meds, but I've read so much bad, so just wondering. what did the doctor have to say regarding time frame of seeing improvement? what is his take? (which doc btw?)

 

what is verbal dyspraxia? and that persists?

 

Faith

 

Hi, Faith,

Less concerned with the difficulties expressing himself coherently at times (verbal dyspraxia) then I am with the behavioral stuff. The doc- Ken Bock- wants me to keep him updated of course but we don't have an appt scheduled for a month or so. Which is fine, as it would be good to have a certain amount of time pass first.

Meds have made no difference except for that one instance as far as I can tell.