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grunts/screams are too much!


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i bought melatonin today 1 mg sublingual

 

i have a perscripton for cholininde from about 6 ago i could fill...

 

i have an appointment with a dan doc in fl.....scott smith in a week.....

he can't do anything till he sees us....

we will be doing alot of lab work.......and an igenex

 

should i start the chlon....or melatonin.....i hoping if he sleeps better(always an issue other tha when on abs was better) that it might help him during the day...

 

 

****************************************

 

another topic.....could these vocals be from yeast??????

 

if so ...would amino acids make them worse...like taurine????

 

i alos bought bentanite clay......would that help with yeast and/or if we go back on abx, for flora

should i just keep giving probiotics....that doesn't add to yeast does it....(i am not sure there is a yeast problem)

 

also on one of the probioitcs i gave when we started the clarith, had step thermo in it.....??? is that ok since its a probiotic...or did i just add to the problem

 

the grunts are like he can't get the air out hard or fast enough.......he's being punched in the gut and then a puppy gets it's tail stepped on in the fight

 

 

*******************************************

if we end up not being able to go back on aug xr would regular aug be different

if neither are ok....what would be the next abx...zith at 500mg.....

what would be next after zith

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I got your PM but thought I would address your questions here so that others may benefit.

 

You are definitely in good hands with Scott, however he generally does 1 mg/kg for IVIG which we did last week. I am going to ask him to do 1.5 mg/kg if we need another treatment. I spoke to a woman on the phone who's daughter did 2 mg/kg with him 5 weeks ago, so I know he is open to it.

 

My son has trouble sleeping as well and Scott said that melatonin is great for sleep. I know from experience that it stops the tics long enough for him to fall asleep. He is 45 lbs. and I give between .5 mg and 1 mg, depending on the day. It knocks him out within 20-30 minutes! I give him drops that he keeps under the tongue for a few seconds and then he swallows.

 

Yes, the tics could be yeast. Scott tested my son's urine which showed high yeast and bacteria. We are currently treating both, but so hard to get on top of with the constant influx of antibiotics! Scott uses diflucan and nystatin for yeast and vancomycin for bacteria. For pandas/strep, he likes zithromax once a week based on weight. I like this too because you have to give probiotics 1-2 hours away from the antibiotics, so it is less complicated on the days that he doesn't take azith.

 

I give my son Taurine, I don't think it makes yeast worse (at least not for us)

 

Regarding Bentonite clay, I have never used but I assume it is like activated charcoal in that it absorbs the byproducts of yeast?? If you use this you may need to give it 2 hours away from any supplements and meds.

 

Regarding probiotics. Scott will tell you that the strep in the probiotics does not worsen pandas. I do not agree. I frequent the autism/dan boards and all the moms SWEAR that the strep probiotics cause issues. In my case, my son went nuts on it and developed a new tic that went away 3 days after I stopped it.

 

I am giving my boys very high doses of probiotics. There is a company called Custom Probiotics (scott recommended) that sells a powder so you can increase it slowly as you wish. I am now up to 200 billion cfu's a day for my 5 year old. I am working toward 400 bill (half in am, half in pm, away from antibiotics of course). The higher the better when you are on chronic antibiotics.

 

About Augmentin, well my son was given this by our local allergist when his throat cultured positive for staph. It made him nuts (as all antibiotics do) but it completely took away his appetite. Soctt said that augmentin tends to increase ammonia which takes away the appetitie. I don't think he is opposed to augmentin but I don't think he favors it, either. I know he likes zith or pen vk.

 

Best of luck! Let us know how the consult goes! There will be tons of labs and some supplements to buy but it is so worth it. I have both boys with him and they are improving all the time (they have other issues outside of pandas). Regarding last week's ivig, I don't know what to think yet. I ended up doubling his tenex a few days later so it may be masking whatever is happening. I do know that my son's tics have stayed the same (possibly worsened) and his depression/separation anxiety is worse. So I guess we are dealing with some of the "worse before better" stuff, but again yeast and bacteria are bad and we are treating that right now. The picture is anything but clear. Time will tell and like I said, next dose will be higher.

 

Stephanie

i bought melatonin today 1 mg sublingual

 

i have a perscripton for cholininde from about 6 ago i could fill...

 

i have an appointment with a dan doc in fl.....scott smith in a week.....

he can't do anything till he sees us....

we will be doing alot of lab work.......and an igenex

 

should i start the chlon....or melatonin.....i hoping if he sleeps better(always an issue other tha when on abs was better) that it might help him during the day...

 

 

****************************************

 

another topic.....could these vocals be from yeast??????

 

if so ...would amino acids make them worse...like taurine????

 

i alos bought bentanite clay......would that help with yeast and/or if we go back on abx, for flora

should i just keep giving probiotics....that doesn't add to yeast does it....(i am not sure there is a yeast problem)

 

also on one of the probioitcs i gave when we started the clarith, had step thermo in it.....??? is that ok since its a probiotic...or did i just add to the problem

 

the grunts are like he can't get the air out hard or fast enough.......he's being punched in the gut and then a puppy gets it's tail stepped on in the fight

 

 

*******************************************

if we end up not being able to go back on aug xr would regular aug be different

if neither are ok....what would be the next abx...zith at 500mg.....

what would be next after zith

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We love melatonin in our house; it works like a dream, and there are no side effects that we've seen.

 

Yes, one would hope that if your son is better rested with a good night's sleep, then his days will be at least marginally better; my DS's first pediatrician was a fairly well-know doc who authored the book "Healthy Sleep Habits, Happy Child," Dr. Marc Weissbluth. He had a famous quip he was constantly quoting to us parents: "A tired child is a wired child." So more rested, more calm!

 

We've tried both regular Augmentin and XR and there is DEFINITELY a difference for us. Try as I might, I haven't been able to find any real research attesting to WHY the XR seems to work better/differently, not just for my DS but for several others kids in this group, as well, but since Azith also seems (anecdotally, at least) to have a good success rate for PANDAS, also, it MIGHT have to do with how long the drug stays active in the system and does the work. Since XR is time release and Azith has a longer half-life than a lot of other abx, maybe each of these is especially well-suited for the work fighting PANDAS requires? ;)

 

Good luck with your DAN doc! I know a lot of people have lots of good experiences with them, and at least you have Stephanie for a referral!

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Hi Fixit,

The things that have helped us in our 6 year journey...They have not cured him but helped him to a point where he can function

 

DIET : Big Help

1] Remove dairy and wheat: Removing dairy eliminated the vocals. Tried this many times in 6 years.

2] Removed all processed foods outside (not just HFC, colors, preservatives and additives)

 

SUPPLEMENTS:

these are the supplements I use during exaberations along with regular supplements everyday.

1]Magnesium calms him. You could do epsom salt baths everyday in the evenings.

2]Clariton helps with spring allergies and this helps with the TICS that are caused by the allergies. This is very bad in my boy.

3] CoQ10 - 50 mg and Acetyl Carnitine 250 mg quick help with TICS whenever the tics wax.

 

OTHERS:

1] No TV / SCREENS

2] No out side play during allergy season

3] Prayer

 

Hope your kid gets better soon and this helps. These are just some things I do when things get bad but I do a ton of things apart from this.

 

Recently we started both my kids on zithromycin every day ( 3 weeks)for both my kids...still waiting to see improvement.

 

Madhu.

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I have a few follow-up questions for you:

 

Do you think gluten causes tics? My son has been on GFCF diet for a year and lately I have been slacking a little here and there with the gluten (like allowing TRACES of gluten). Sometimes I wonder if there is an opiate thing going on and exacerbating his tics (and not to mention I have lately allowed soy into his diet). Still 99% free of additives/preservatives though).

 

I have been thinking about trying Claritin and now that I read this from you I will. Last year when I had him evaluated by a psychologist, his current tic was eye blinking. On the first day of the eval, lots of eye blinking. On the second, I gave him claritin (due to hives) right before the eval and no eye blinking!! Ya know what she wrote in the report? That her take on the eye blinking is that it was due to allergies (in other words, his eyes were itchy and that's why he was blinking). She specifically stated that he took claritin on the second day and no blinking! How weird! She refused to give him a Tourette's dx b/c of this!

 

Regarding CoQ10 and Carnitine. I have used both in my son, but before I knew he had pandas. I may try this again. Do you know why these help tics?

 

Stephanie

 

 

Hi Fixit,

The things that have helped us in our 6 year journey...They have not cured him but helped him to a point where he can function

 

DIET : Big Help

1] Remove dairy and wheat: Removing dairy eliminated the vocals. Tried this many times in 6 years.

2] Removed all processed foods outside (not just HFC, colors, preservatives and additives)

 

SUPPLEMENTS:

these are the supplements I use during exaberations along with regular supplements everyday.

1]Magnesium calms him. You could do epsom salt baths everyday in the evenings.

2]Clariton helps with spring allergies and this helps with the TICS that are caused by the allergies. This is very bad in my boy.

3] CoQ10 - 50 mg and Acetyl Carnitine 250 mg quick help with TICS whenever the tics wax.

 

OTHERS:

1] No TV / SCREENS

2] No out side play during allergy season

3] Prayer

 

Hope your kid gets better soon and this helps. These are just some things I do when things get bad but I do a ton of things apart from this.

 

Recently we started both my kids on zithromycin every day ( 3 weeks)for both my kids...still waiting to see improvement.

 

Madhu.

Edited by Stephanie2
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Hi Stephanie,

I went cold turkey with diet when I read on latitudes forum about diet when my son started with TICS both vocal and complex motor tics. Then I started back things one at a time and found that milk caused him vocals.

Wheat, from reading a lot about it , I dont think I will add it back at all. We found him to be allergic by both muscle testing and peptide test from great plains.

 

We eat rice, lentils, vegs, fruits and organic chicken and sometimes in season wild caugh salmon. Thats all. I cook all the dishes at home.

 

I think a claritin helps because....when kids have allergies because of their sensory problems they kind of become tics...like blinking mouth twitching, nose breathing, coughing tic or huffing...

 

I dont know why the combination of CoQ10 and Acetyl carnitine helps...I think it is because of mito issues that a lot of our kids have.

 

I want to add that all this along with DAN protocol did not cure him just made things much easier. Onl;y last year when my kids got sick ( my younger son tested positive for strep while my older one tested negative as usual) , My younger one also started ticcing afgter 3 weeks and that is when I figured it was PANDAS. My older ones tics also became bad. For some reason both my kids dont have high titres. This is the reason we never thought it was PANDAS for my older kid.

From last year we are looking at PANDAS.

 

Hope this helps.

Madhu.

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Thanks for the info...we did gfcf for 3 months is fall..it was ok...we went back to regular diet and i didn't notice any difference( i have always been dye free, no hfcs....and in the last year...no preservatives etc) but my boy has been getting worse since the fall...my theory is the infection of what ever he is dealing with is getting worse...and i didn't know that(someone said) that puberty causes inflamation too!!!!

i took him off dairy again, about a month ago to stay ahead of allergy season.....

 

but i have't given allergy meds lately because i think zyetec makes him more hyper...i did buy clear, waltmart brand clairton...i will try that tomorrow.

i had to leave because i was at my breaking point...told hubby give 1/2 melatonin...hubby gave whole(luckily i decided to by the 1 mg sublinugal)..

that stuff is really something....but tomorrow we will try the 1/2 dose

 

He has been bugging me about going outside all week....it rained yesterday..today was gorgous and ds was at his worst so i let them out after 6.30pm....worst pollen time is moring....had him get in the shower and see what tomorrow brings..

 

Thanks all...I AM OUT...BANKRUPT.....TOAST....DONE!!!

 

 

Hi Fixit,

The things that have helped us in our 6 year journey...They have not cured him but helped him to a point where he can function

 

DIET : Big Help

1] Remove dairy and wheat: Removing dairy eliminated the vocals. Tried this many times in 6 years.

2] Removed all processed foods outside (not just HFC, colors, preservatives and additives)

 

SUPPLEMENTS:

these are the supplements I use during exaberations along with regular supplements everyday.

1]Magnesium calms him. You could do epsom salt baths everyday in the evenings.

2]Clariton helps with spring allergies and this helps with the TICS that are caused by the allergies. This is very bad in my boy.

3] CoQ10 - 50 mg and Acetyl Carnitine 250 mg quick help with TICS whenever the tics wax.

 

OTHERS:

1] No TV / SCREENS

2] No out side play during allergy season

3] Prayer

 

Hope your kid gets better soon and this helps. These are just some things I do when things get bad but I do a ton of things apart from this.

 

Recently we started both my kids on zithromycin every day ( 3 weeks)for both my kids...still waiting to see improvement.

 

Madhu.

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We love melatonin at our house too. 2.5 mg sublingual a night is what we all take at this point for a nice bed time.

 

We are gluten free, my girls are gluten intolerant (possible celiac, we just don't know). My younger dd had seizures due to gluten so I imagine it could cause tics or other motor issues. Her siezures are gone now that we are GF.

 

Allergies also a big trigger for us. We use zyrtec, allegra and steroid nasal sprays with much success.

 

I stay away from the strep thermo in probiotics too, just in case.

 

Susan

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One thing about taurine--it helps many people very much, but here it really increased ticcing. It took about a week for the tics caused by two doses of taurine to subside. Have you been giving taurine for a long time? For my son, the negative result was immediate and intense.

 

Lynn

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