board hopping

[chap]

hiya

 

Just an observation, it seems like lots of people are moving over to the PANDAs board. I like to read both, but was wondering how many of you out there categorically feel that they have TS rather then PANDA's? And what makes you feel that way?

 

cheers

[CSP]

chap,

 

I know some times I don't know what my son has. I can tell you this, I can not keep up with the PANDAS forum, there are so many topics.

 

CP

[faith]

hi chap,

I want to respond, but the only answer I can come up with is... who the @#$% knows?!!!!! ..........sorry..... ....

 

I know my son fits the criteria of tourettes, and he has comorbid issues. if it is PANDAS induced, I'm still investigating. I got on the path because he has so many symptoms that aren't getting any better. so far he is not responding to abx, and I'm kind of cautious about other types of treatment, as well as weary of the difficulties of finding and working with doctors who are well versed in this. CP is right, there is so much information, it is hard to grasp, but I'm trying.

 

[Chemar]

if I had any doubt that my son categorically has TS it was confirmed by the fact that he had to go on a course of azithromycin last week prior to having a wisdom tooth removed this week....and the azith made his tics increase!

 

we had him evaluated in 2001 for possible PANDAS at Shands clinic when Dr Murphy was there, and she classified him not PANDAS

 

my husband's side of the family has TS, and I was reminded recently as well of some cousins and an uncle in my family on my father's side who exhibited what I now know may have been tics

 

altho my son had a rather dramatic onset of OCD and severe tics at age 10, yet he had shown both vocal and motor tics from a very young age...we just didnt recognize them as such. My husband also never had a name for what he and his dad had until our son was officially diagnosed.

 

anyways, I do feel this recent experience with the antibiotic has finally laid to rest any lingering doubts that I may have had about my son perhaps also having PANDAS

 

btw we also had the dentist do TMJ evaluation and it seems that is not an issue for my son

 

he has genetic TS.

[abbe]

if I had any doubt that my son categorically has TS it was confirmed by the fact that he had to go on a course of azithromycin last week prior to having a wisdom tooth removed this week....and the azith made his tics increase!

 

we had him evaluated in 2001 for possible PANDAS at Shands clinic when Dr Murphy was there, and she classified him not PANDAS

 

my husband's side of the family has TS, and I was reminded recently as well of some cousins and an uncle in my family on my father's side who exhibited what I now know may have been tics

 

altho my son had a rather dramatic onset of OCD and severe tics at age 10, yet he had shown both vocal and motor tics from a very young age...we just didnt recognize them as such. My husband also never had a name for what he and his dad had until our son was officially diagnosed.

 

anyways, I do feel this recent experience with the antibiotic has finally laid to rest any lingering doubts that I may have had about my son perhaps also having PANDAS

 

btw we also had the dentist do TMJ evaluation and it seems that is not an issue for my son

 

he has genetic TS.

[abbe]

 

Cheri,

 

 

I am glad I just read your last post because I am on the fence as to if I should put Nick on antibiotics for a mycoplasma infection more commonly known as walking pneumonia . Dr. Chung put him on vials for it and says he will clear it on his own. He has no fever or lack of activity just a cough. I don't want to use antibiotics because he is tic free and has been since we supplemented for pyroulia. I just don't want to disrupt anything in his system. Also with Nick having an intolerance to mold and aren't most antibiotics made from mold ??? In any event thanks for you post.

 

abbe

[Chemar]

Hi abbe

 

I do realize that if there is infection then antibiotics are needed so I am sure not suggesting that no one should use them. My son had to have an antibiotic to clear infection around the tooth before they can extract it at the end of this week. he does feel the azith actually helped his Crohn's symptoms, and there are doctors who believe Crohn's may be caused by mycoplasma pneumonii sooooo

 

but as far as the tics go, there has been a definite increase from the azith, whether a direct result or because of "die off" reaction we dont know...but I would have expected that if there was a PANDAS component to his TS, then we should have seen either a decrease in tics or no effect, not the spiking that resulted.

 

my son takes natural antibiotics (monolaurin, olive leaf extract, candida clear) once a month for a week to keep things like candida and crohn's infective agents at bay, and has never seen tic spiking from those.. quite the opposite as they seem to be helpful, so I am not sure why the azith had the triggering effect.............he has been on it before, in 2006, when first dx with Crohn's. At that time his tics were up anyway from the stress of the Crohn's pain he was in so we dont recall if they increased more from the azith, which once again then helped re the Crohn's

[Fixit]

Hi again. just from my experience....

when ds would get his tics we would go on anti's....and i would wonder why is this kid just starting to becoming a wild person is he just feeling better...but this is beyond his normal busy level......and about week 3 later wild behavior and tics were gone...

started to note that the biotics had red dye!!!!!!! so the last few years ago we ask for no dyes in his meds...i forgot the last time and same thing happened.

now in food it doesn't seem to effect him as much but in large doses its does ..and i thnk in drinks it worse too....i think it's a direct hit in liquid form

we don' do dyes here

was the zith dyed or was there something else in it too exasperate him....

just throwing it out there

[Fixit]

Hi again. just from my experience....

when ds would get his tics we would go on anti's....and i would wonder why is this kid just starting to becoming a wild person is he just feeling better...but this is beyond his normal busy level......and about week 3 later wild behavior and tics were gone...

started to note that the biotics had red dye!!!!!!! so the last few years ago we ask for no dyes in his meds...i forgot the last time and same thing happened. i went to get that med w/o dye and they said they have no such animal

now in food it doesn't seem to effect him as much but in large doses its does ..and i thnk in drinks it worse too....i think it's a direct hit in liquid form

we don' do dyes here

was the zith dyed or was there something else in it too exasperate him....

just throwing it out there

[Chemar]

no, we had the white azithromycin as my son has documented reactions to food coloring, especially the reds.

[faith]

abbe,

could you tell me more about the pyroluria. that is one test I keep neglecting to do, don't know why. but are you saying that since you supplemented for that, it has helped the tics greatly? tic free you say? what are you giving and how much? thanks.

 

Cheri, re the olive leaf. is that how you give it? for a week only? I was looking into that a few weeks ago, and I got confused about what the nutritional advisor at the vit store was telling me. I thought it acted like an anti-viral, is that correct? he did also say you're not really supposed to take it every day longterm, and that it basically knocks out whatever is 'already there' in terms of viral infection, not really as a 'prohibitor' of getting ill. does that sound right? could you give me a quick crash course on what you know. I did get a bottle of SolRay olive leaf, 250 mg. capsules, but havn't given it yet. thanks.

 

Fixit, so you DO see dramatic improvement on abx, despite the initial reaction to the dye? how long did it initially take to see improvement, especially in tics? any vocal?

 

 

Faith

[Chemar]

Faith, I have seen documented cases of tics ceasing after treatment for pyroluria in people who were misdiagnosed with TS, when in fact they had pyroluria. Zinc and B6 are the usual treatment supps

Pyroluria seems common in families with alcoholism genetics

 

re the Olive Leaf extract...yes it is a potent antiviral, but also a general antimicrobial and yes we only use it (along with the monolaurin and candida clear) for one week every month primarily as a help for my son's crohn's disease (conventional treatment has people with crohn's on periodic flagyl antibiotic, which my son did try in the beginning and had yuck side effects from....)

[ilovedogs]

Interesting about the pyroluria and the alcholism. Maybe it's something we need to look into, too. My dad is a self-pronounced alcoholic as are both my inlaws. My dh was an alcoholic by the time he was 15, he hasn't had a drink for 15 years now. So, we have alcoholism on both sides of the family. We also have anxiety on both sides and depression on dh's side so the poor kid was bound to have some sort of issues, huh? Anyway, I'll be at the naturopath's office later and I'll ask him about pyroluria.

[abbe]

faith,

 

The pyroulia is the last one we tested for . His was elevated. I took him to Dr. Chung and he read up on it and thought I really was on to something. I muscle tested him for zinc and b6 and now put him on both also evening primrose. He is still on the 15 mg. of topamax (he is 8 so this is low for his weight, I wish I could go lower and then stop but I am not there yet) but he is tic free since the new additions. He had that minor set back in disney from his laser gun that we let him have, the rides and the fireworks with the flashing laser lights being the true culprit. He can't take the flash. Last night we took a picture with the flash and his eye ticced right after.

 

 

abbe

[Chemar]

abbe

 

interesting re the flashing as I have heard the same from others with pyroluria...that it seems to heighten photosensitivity