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Day 7 of Delsym to Lower Glutamate


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I usually hesitate to post successes because it guarantees the other shoe will drop and DS will become feeling awful again. But I have posted and he's even better today. He usually sits depressed, talking with no one, agitated, sullen, miserable, and unable to think AT ALL. Today he discussed how he could fix the economy, how he was wondering if he tried to not think of pain as bad, if it would become not unpleasant, and went to a birthday party! Yesterday we added vitamin K and L Theanine. He said he was going to write to his art teacher to show her his work. This is not my kid! He's Smiling!!!!!!!!!!! So our regime is now, 1 tsp of Delsym every 12 hours. One capsule of Now brand True Calm, Vitamin K, 3,000 iu of Vit D, and One does of Keflex a day (1,000) mg I think, and a vitamin B12 injection every three days. He's joking with us. And did I say, he's smiling?

 

He said his brain "Feels weird," he is a little dizzy, but I suspect pulling that out of his brain causes a different feeling. I'm wondering if I shouyld detox too with a bentonite clay charcoal blend?

 

Nancy

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Very cool, Nancy. Please keep us posted as you tweak and add to your treatment plan.

 

I've read that Delsym and other similar formulations can cause dizziness; whether that's the result of "zapping" the glutamate or some other side effect, I don't know. Be interested to hear if that side effect wanes or if it sticks around and is temporily associated with the dosing or not.

 

So, was the improvement gradual over the last 6 days, or do you think yesterday's additions (Vit K and Theanine) "kicked it" into the dramatic improvement zone?

 

If things are good and getting better, why are you adding gaba and taurine to the mix?

 

Also interested in what results you hope to get with the taurine; we've tried it from time to time, but it's been very challenging to tease out any impacts. Initially I thought it was helping short-term memory, but then that improvement seemed to drop off, and I became concerned I was just engaging in wishful thinking.

 

Thanks!

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Very cool, Nancy. Please keep us posted as you tweak and add to your treatment plan.

 

I've read that Delsym and other similar formulations can cause dizziness; whether that's the result of "zapping" the glutamate or some other side effect, I don't know. Be interested to hear if that side effect wanes or if it sticks around and is temporily associated with the dosing or not.

 

So, was the improvement gradual over the last 6 days, or do you think yesterday's additions (Vit K and Theanine) "kicked it" into the dramatic improvement zone?

 

If things are good and getting better, why are you adding gaba and taurine to the mix?

 

Also interested in what results you hope to get with the taurine; we've tried it from time to time, but it's been very challenging to tease out any impacts. Initially I thought it was helping short-term memory, but then that improvement seemed to drop off, and I became concerned I was just engaging in wishful thinking.

 

Thanks!

I may have been a little heavy handed in my Delsym dose so I'm going to carefully measure and see if that helps. Yes the change was gradual, but a little more each day. I'm hoping too that it continues.

 

I didn't just add the taurine and GABA they are in the "True Calm" supplement mix for brain power. The only new additions were the Vitamin K (which is depleted in brains with too much glutamate. The L- Theanine was added as I've heard it reduced vocal tics. Both of my PANDAS kids are on this program now and my dauighter's vocals are less. Here's hoping it stays. My son is still at the birthday party, no calls to come home!

 

Nancy

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Your mix is new to me - I am interested in the Delsym and, incidentally, if it is the same as the Delsym cough meds, it made me a little dizzy when I tried it last summer. I think some people are more sensitive to meds, even OTC. Maybe this is what it is for your son? Anyway, hoe THRILLING that your kiddo is doing well! I will send lots of positive vibes your way! Go Mom!!!

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Well, it appears the Delsym is what is making my son dizzy. That alone I didn't feel too concerned about but then he started having headaches and trouble urinating, so we discontinued. But our "True Calm" supplement reduces excess glutamate as well so we are doing that still and the dizziness seems to be leaving. Monster energy drinks have similar good aminos so we take half of one in the AM. He still seems pretty good. We have an appointment with the local ped. tomorrow, going to ask for namenda. Is 5 mg the standard does?

 

Nancy

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Nancy, was the improvement pretty quick at the beginning or did it take some time? I tried some Delsym with DS 14 and he seemed to have immediate increase in OCD and tics, although a number of things were going on at the time. Just wanted to check that it wasn't a "worse, then better" response, but was immediate beginnings of improvement.

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Nancy, was the improvement pretty quick at the beginning or did it take some time? I tried some Delsym with DS 14 and he seemed to have immediate increase in OCD and tics, although a number of things were going on at the time. Just wanted to check that it wasn't a "worse, then better" response, but was immediate beginnings of improvement.

 

The first day he was not worse, but over the first week continued to improve. By day 3 he was obviously better. We switched back to Keflex and also are doing 3000 iu of vitamin D as well as the True Calm. We are still doing everything except the Delsym and I believe he is not quite as good. Also still doing Methyl B12 injections too. Seeing doctor today, hoping she's be on board for Namenda.

 

Nancy

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Nancy, was the improvement pretty quick at the beginning or did it take some time? I tried some Delsym with DS 14 and he seemed to have immediate increase in OCD and tics, although a number of things were going on at the time. Just wanted to check that it wasn't a "worse, then better" response, but was immediate beginnings of improvement.

 

The first day he was not worse, but over the first week continued to improve. By day 3 he was obviously better. We switched back to Keflex and also are doing 3000 iu of vitamin D as well as the True Calm. We are still doing everything except the Delsym and I believe he is not quite as good. Also still doing Methyl B12 injections too. Seeing doctor today, hoping she's be on board for Namenda.

 

Nancy

Ok so we needed to tweek, but we are doing very well. I now know what makes my son sick and PANDAS-ish. I also know how to get him and keep him feeling great.

 

We started by going gluten and dairy free. I knew both caused inflammation, but didn't know why. Now I do. both make excess glutamate. Remember glutamate. It's the enemy. It causes OCD, anxiety, depression ADD and brain fog. If you can't get better on antibiotics alone, you need to lower the neurotransmitter glutamate. When we first went gluten/ dairy free we also added methyl B-12 injections. Methyl B-12 we knew helped Autistic kids (my son is not) but no one knows why. I do now. Vitamin B-12 lowers glutamate AND raises histamine, which supports Dr. T's theory of PANDAS kids often having low histamine. When we started this my son improved greatly. But it didn't last. I'm guessing since his anti-neuronal antibodies still existed in his brain from strep, they cause the cell damage which releases excess glutamate. So we improved by getting rid of some causes of inflammation, but the main cause of problems was still there. Two and a half weeks ago my son was so severe I was scared.

 

After I read about Glutamate here (THANK YOU!!!) I started him on Delsym cough syrup which greatly lowers glutamate, added vitamin D to lower inflammation, and a GABA, taurine, B6, Inositol and valerian supplement called True Calm. GABA is depleted when there is too much glutamate and is needed to calm the body. It helps you sleep, and speak. Taurine, B6, Inositol and valerian all lower glutamate. My son became incredibly better. Quickly too. He was happy and smiling, doing things with friends, OCD improved, social skills improved...HUGE. I noticed after a week or more that he was getting some side effects from Delsym. Dizziness, headache and inability to pass urine easily. We went off the Delsym, but stayed on B-12 injections and True Calm. I could see him deteriorate slowly. I had hoped the True Calm would be enough. It wasn't. in 2 days he was almost as bad as before. But wait, he had just had a diet iced tea. Nutrasweet, or MSG are what has been severely effecting his brain! I found the L-theanine greatly lowered glutamate. Also I found out that even more GABA was needed, you can take as much as 750 mg 3 x a day. So we threw out the MSG/ diet foods, and added the supplements. He is fabulous again. If he's failing from something he ate, I can give him the L-theanine and GABA and in 24 hours he is better. in 2 days he's darn close to perfect. I can control his PANDAS. It is the most freeing feeling on Earth. Our insurance would not cover Namenda (an alzheimer drug used at a lose dose, which lowers glutamate) but we are actually fine without it.

 

I'm pretty sure I now have 2 PANDAS kids that are finally able to completely or darn close to, controlling it. Yes PEX would probably get rid of it all for good, but since my son's glutamate levels are so high (or there are more receptors) I'm not sure it's the right option since the Albumin that is mixed in with the plasma that's reintroduced to the body, and albumin raises glutamate. maybe if we can REALLY lower it a lot. We are trying the same program on my daughter who has a lingering vocal tic.

 

Just sharing :-)

 

Nancy

Edited by fcefxer
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awesome we use Source Naturals Theanine Serene W/Relora google it has everything in it love it

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wow, thanks for sharing this! awesome news!!!!!

 

 

I have been reading about Dextromethorphan (Delsym) on the Parkinson's boards since my mom has PD. I also have two boys with autism/PANDAS.

 

The PD people are using Dextro because it increases Dopamine. My youngest son does terrible on anything that boosts Dopamine.

 

Are any kids here that are doing well on Delsym have any issues with high Dopamine?

 

Thanks,

Sylvia

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