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-> Children's Health
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amother
Sapphire
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 Mon, Jan 03 2022, 2:39 pm
| amother [ Natural ] wrote: | Hate to say this but your pediatrician is wrong. First of all, amox is generally not strong enough for pandas, augmentin or azithrmycin typically work best, second of all, pandas needs a much, much longer course than a regular acute strep infection. Sometimes if you catch it early, 30 days of 6 weeks can nip it in the bud, but if it’s going on for a while, I would say at minimum a year, possibly longer. Being that your kid keeps getting strep, you might also want to look into tonsillectomy, some kids wit pandas see huge improvements that way.
I don’t know what the deal is with your older kid, but pandas doesn’t typically self resolve. In fat, it usually gets worse and worse. Even if the tics went away, are you sure they aren’t dealing with other less obvious manifestations such as moodiness, hyperactivity, anxiety, ocd, rage, aggression, defiance, meltdowns? Are they a completely easygoing neurotypical child? |
Agree with you about pediatrician. And thats why I think its time to find someone else...
Older son has reg moods, like any teenager..sometimes anger, no meltdown or hypersctivity. He does tell me sometimes he feels twitches like in his forehead or muscles (but not ones thst are visible externally)
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amother
Hosta
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Mon, Jan 03 2022, 2:46 pm
| amother [ Sapphire ] wrote: | I did a zoom meeting with neuro dr. He said CBT is very costly, time consuming, and only improves it a bit.
If pandas is a medical ussue, how will spending my energy on cbt help?
How is PANDAS treated?
Btw, my older son had tics for that he eventually did outgrew. Not as severe though as my current one. |
How is CBT costly If you get a therapist through insurance? Most insurances cover psychotherapy.
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interboro22
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Mon, Jan 03 2022, 4:04 pm
we're also dealing with tics with my 10 year old. When he started having them the doc said to give him motrin(or tylenol? dont remember) for a week straight. when that didnt help I went back and saw a diff doc. she ordered blood work which they later called me to say its normal. so assuming its not PANDAS. another doc in that office said he can send me to a nuerologist but usually they dont end up treating it anyways and it should go away on its own... my husband also has tics for many many years so I dont think it will go away without treatment or anything... My heart goes out to him I hope none of the boys are making fun of him in cheidr. My other kids are bh amazing at tolerating it and ignore it.
I tried giving him magnesium but didnt see much of a difference. maybe I'm not giving him enough . I found this product on amazon but not sure if its kosher or safe. https://www.amazon.com/gp/prod.....8aa2b
if anyone used it I would apprecieate feedback.
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amother
Natural
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Mon, Jan 03 2022, 4:15 pm
| interboro22 wrote: | we're also dealing with tics with my 10 year old. When he started having them the doc said to give him motrin(or tylenol? dont remember) for a week straight. when that didnt help I went back and saw a diff doc. she ordered blood work which they later called me to say its normal. so assuming its not PANDAS. another doc in that office said he can send me to a nuerologist but usually they dont end up treating it anyways and it should go away on its own... my husband also has tics for many many years so I dont think it will go away without treatment or anything... My heart goes out to him I hope none of the boys are making fun of him in cheidr. My other kids are bh amazing at tolerating it and ignore it.
I tried giving him magnesium but didnt see much of a difference. maybe I'm not giving him enough . I found this product on amazon but not sure if its kosher or safe. https://www.amazon.com/gp/prod.....8aa2b
if anyone used it I would apprecieate feedback. | There isn’t a single lab on this planet that can rule out pandas. It’s a diagnosis that’s made *solely* based on symptoms. What’s more, often children will have those markers that are meant to be looked at for pandas (strep titers) but pediatricians will STILL insist it’s not pandas because elevated titers are so common in our circles. And they won’t even bother informing the parents that it was elevated. That’s why it’s so important to get a copy of all the labs and look at them yourself. On top of all that, there are many other infections other than strep that can cause tics and similar symptoms to pandas. Lots of drs aren’t even looking at those things. Motrin alone, and magnesium alone, are generally not enough to stop tics. We find that Motrin plus zyrtec plus robitussin helps a lot. We also use magnesium, but we use massive doses. And specific forms. Long term we need to treat the chronic infections and other imbalances that are causing and contributing to neuroinflammation.
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amother
Sapphire
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Mon, Jan 03 2022, 4:22 pm
| interboro22 wrote: | we're also dealing with tics with my 10 year old. When he started having them the doc said to give him motrin(or tylenol? dont remember) for a week straight. when that didnt help I went back and saw a diff doc. she ordered blood work which they later called me to say its normal. so assuming its not PANDAS. another doc in that office said he can send me to a nuerologist but usually they dont end up treating it anyways and it should go away on its own... my husband also has tics for many many years so I dont think it will go away without treatment or anything... My heart goes out to him I hope none of the boys are making fun of him in cheidr. My other kids are bh amazing at tolerating it and ignore it.
I tried giving him magnesium but didnt see much of a difference. maybe I'm not giving him enough . I found this product on amazon but not sure if its kosher or safe. https://www.amazon.com/gp/prod.....8aa2b
if anyone used it I would apprecieate feedback. |
Same exact here. My son is almost 10. My other kids tolerate him, but my heart breaks for him. He is clearly struggling and feels embarrassed in cheder..
Its possible a simple bloodwork wont show the Pandas?
As desperate as I am, I'd be afraid trying any product, as tics usually come from an underlying condition.
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interboro22
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Mon, Jan 03 2022, 4:36 pm
| amother [ Natural ] wrote: | | There isn’t a single lab on this planet that can rule out pandas. It’s a diagnosis that’s made *solely* based on symptoms. What’s more, often children will have those markers that are meant to be looked at for pandas (strep titers) but pediatricians will STILL insist it’s not pandas because elevated titers are so common in our circles. And they won’t even bother informing the parents that it was elevated. That’s why it’s so important to get a copy of all the labs and look at them yourself. On top of all that, there are many other infections other than strep that can cause tics and similar symptoms to pandas. Lots of drs aren’t even looking at those things. Motrin alone, and magnesium alone, are generally not enough to stop tics. We find that Motrin plus zyrtec plus robitussin helps a lot. We also use magnesium, but we use massive doses. And specific forms. Long term we need to treat the chronic infections and other imbalances that are causing and contributing to neuroinflammation. |
So maybe I should try and get a copy of the results? wouldnt know how to read it anyways.
he btw had a few negative cultures in the last few months before he started doing these tics.
how much magnesium am I suppose to give? its coming and going so do I give it every day anyways?
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amother
Natural
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Mon, Jan 03 2022, 5:37 pm
| interboro22 wrote: | So maybe I should try and get a copy of the results? wouldnt know how to read it anyways.
he btw had a few negative cultures in the last few months before he started doing these tics.
how much magnesium am I suppose to give? its coming and going so do I give it every day anyways? | Yeah you can try getting a copy but if it’s not up to date it might not be too helpful. It’s very common for kids with pandas to have strep yet still get negative cultures, so that may explain the negative cultures. Unless I’m not understanding. Also, you can try begging your dr for more antibiotics, regardless of the bloodwork. Just say your kid is suffering, you want to see if 30 days will make a difference, please can he rx it just to humor you. Yes, give magnesium every day. What form are you using ? We find footsoaks with epsom salt and magnesium flakes very helpful. Have you tried NAC for the tics? I also can’t stress how helpful we find motrin + zyrtec + robitussin for tics. Does your child have any other behaviors aside for tics that may indicate pandas?
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amother
Broom
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Mon, Jan 03 2022, 7:17 pm
I have come to the conclusion that Pandas is extremely hard to treat, we need extra help from the one above. Besides for doing your best to treat it-hishtadlus, we need to take the symptom and take a kabala related to it. If you kid has an eye tic-take upon yourself shmiras einiyim. If you kid has a vocal tic, take shmiras Halashon upon yourself.
Hatzlacha, may our children all have a refuah shleima.
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amother
Sapphire
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Mon, Jan 03 2022, 9:55 pm
[quote="amother [ Natural ]"]Yeah you can try getting a copy but if it’s not up to date it might not be too helpful. It’s very common for kids with pandas to have strep yet still get negative cultures, so that may explain the negative cultures. Unless I’m not understanding. Also, you can try begging your dr for more antibiotics, regardless of the bloodwork. Just say your kid is suffering, you want to see if 30 days will make a difference, please can he rx it just to humor you. Yes, give magnesium every day. What form are you using ? We find footsoaks with epsom salt and magnesium flakes very helpful. Have you tried NAC for the tics? I also can’t stress how helpful we find motrin + zyrtec + robitussin for tics. Does your child have any other behaviors aside for tics that may indicate pandas?[/quote
For how long to give these? Do they help cure it or just alleviate the symptoms?
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Bleemee
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Mon, Jan 03 2022, 10:33 pm
| amother [ Natural ] wrote: | | There isn’t a single lab on this planet that can rule out pandas. It’s a diagnosis that’s made *solely* based on symptoms. What’s more, often children will have those markers that are meant to be looked at for pandas (strep titers) but pediatricians will STILL insist it’s not pandas because elevated titers are so common in our circles. And they won’t even bother informing the parents that it was elevated. That’s why it’s so important to get a copy of all the labs and look at them yourself. On top of all that, there are many other infections other than strep that can cause tics and similar symptoms to pandas. Lots of drs aren’t even looking at those things. Motrin alone, and magnesium alone, are generally not enough to stop tics. We find that Motrin plus zyrtec plus robitussin helps a lot. We also use magnesium, but we use massive doses. And specific forms. Long term we need to treat the chronic infections and other imbalances that are causing and contributing to neuroinflammation. | What do you mean about elevated titers so common in our circles?
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amother
Natural
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Mon, Jan 03 2022, 11:13 pm
[quote="amother [ Sapphire ]"] | amother [ Natural ] wrote: | Yeah you can try getting a copy but if it’s not up to date it might not be too helpful. It’s very common for kids with pandas to have strep yet still get negative cultures, so that may explain the negative cultures. Unless I’m not understanding. Also, you can try begging your dr for more antibiotics, regardless of the bloodwork. Just say your kid is suffering, you want to see if 30 days will make a difference, please can he rx it just to humor you. Yes, give magnesium every day. What form are you using ? We find footsoaks with epsom salt and magnesium flakes very helpful. Have you tried NAC for the tics? I also can’t stress how helpful we find motrin + zyrtec + robitussin for tics. Does your child have any other behaviors aside for tics that may indicate pandas?[/quote
For how long to give these? Do they help cure it or just alleviate the symptoms? | Getting cellular magnesium levels up can be addressing root causes, the other things are mostly addressing symptoms. Most important is to find and treat all infections and pathogens, and also correct immune dysregulating.
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amother
Natural
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Mon, Jan 03 2022, 11:14 pm
| Bleemee wrote: | | What do you mean about elevated titers so common in our circles? | Lots of kids in our communities have elevated strep titers because we have a lot of strep so kids are constantly being exposed, if not getting over an actual infection.
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amother
Hotpink
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Mon, Jan 03 2022, 11:21 pm
| amother [ Natural ] wrote: | | Getting cellular magnesium levels up can be addressing root causes, the other things are mostly addressing symptoms. Most important is to find and treat all infections and pathogens, and also correct immune dysregulating. |
I hate to say this cuz I know I'll get tomatoes thrown my way, but I feel like I have to just mention it.
While you are figuring out which infections your dc is battling, please please pause all vaccines. It will only be more complicated to identify and treat if you throw more infections into the body via vaccines while you're still trying to figure out what's going on and getting things under control.
I learned this the hard way. Don't make the same mistake I did. This was pointed out to me by a very mainstream md. Save your family the aggravation of going thru it.
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amother
Sapphire
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Mon, Jan 03 2022, 11:30 pm
| amother [ Hotpink ] wrote: | I hate to say this cuz I know I'll get tomatoes thrown my way, but I feel like I have to just mention it.
While you are figuring out which infections your dc is battling, please please pause all vaccines. It will only be more complicated to identify and treat if you throw more infections into the body via vaccines while you're still trying to figure out what's going on and getting things under control.
I learned this the hard way. Don't make the same mistake I did. This was pointed out to me by a very mainstream md. Save your family the aggravation of going thru it. |
No tomatoes from me..actually makes sense.
Amother Natural: the Motrin, Zyrtec, and Robitussin you recommended is for every day. For how long??
Along with antibiotics?
Are you saying there isnt a way to cure Pandas, just a way to manage it/with tics?
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amother
Natural
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Mon, Jan 03 2022, 11:39 pm
| amother [ Sapphire ] wrote: | No tomatoes from me..actually makes sense.
Amother Natural: the Motrin, Zyrtec, and Robitussin you recommended is for every day. For how long??
Along with antibiotics?
Are you saying there isnt a way to cure Pandas, just a way to manage it/with tics? | Motrin zyrtec and robitussin is how we manage flares, I would say for up to 2 weeks at a time. It works well even If you can’t get antibiotics, it works even better if you can get antibiotics. Some kids take all these every day for years, I try not to give motrin for too long, it can be very hard on the gut and kidneys. Anti histamines can be given daily. Some people claim they cured pandas with just antibiotics for a few years, idk, we’ve never really been able to go too long without them without symptoms coming back. Really actually curing pandas will usually take a lot more than that. But we are seeing good things with homeopathy. And getting symptoms under control with antibiotics and anti inflammatories is a good start. You have to start somewhere. I’ve learned that with this disease, managing symptoms is also a win. The longer symptoms go untreated the harder it will be to reverse. So even if motrin, zyrtec and robitussin are only keeping inflammation down for today, that’s still a win in my book, 1 day less of their brains being zapped by antibodies.
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amother
DarkCyan
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Tue, Jan 04 2022, 2:12 am
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Can anyone say more about NAC?
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amother
Natural
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Tue, Jan 04 2022, 4:43 pm
| amother [ DarkCyan ] wrote: | | Can anyone say more about NAC? | Its an amino acid. It’s a precursor to glutathione, which is a master antioxidant,especially in the brain, and plays an important role in liver detoxification and the methylation cycle. It’s been shown to be effective at really high doses to help with tics, ocd, anxiety, and body focused repetitive behaviors. Pharmanac is the best forms, the others may oxidize too quickly to be of help. It’s a biofilm buster and can sometimes be a little hard on the stomach.
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amother
Sapphire
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Wed, Jan 05 2022, 1:38 am
| amother [ Natural ] wrote: | | Yeah you can try getting a copy but if it’s not up to date it might not be too helpful. It’s very common for kids with pandas to have strep yet still get negative cultures, so that may explain the negative cultures. Unless I’m not understanding. Also, you can try begging your dr for more antibiotics, regardless of the bloodwork. Just say your kid is suffering, you want to see if 30 days will make a difference, please can he rx it just to humor you. Yes, give magnesium every day. What form are you using ? We find footsoaks with epsom salt and magnesium flakes very helpful. Have you tried NAC for the tics? I also can’t stress how helpful we find motrin + zyrtec + robitussin for tics. Does your child have any other behaviors aside for tics that may indicate pandas? |
Foot soaks? How does that work?
You seem to be quite knowledgeable on this issue. How long are/were you dealing with it?
I'm wondering what I'm in for...
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amother
DarkCyan
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Wed, Jan 05 2022, 2:12 am
Thank you natural.
That was very helpful.
I wish there was a way to know if it interacts with any of my prescription medications. Like birth control and others. You seem very knowledgeable.
Is there any way to find out?
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amother
Natural
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Wed, Jan 05 2022, 3:44 pm
| amother [ Sapphire ] wrote: | Foot soaks? How does that work?
You seem to be quite knowledgeable on this issue. How long are/were you dealing with it?
I'm wondering what I'm in for... | 1 cup epsom salt, 1 cup magnesium chloride flakes (amazon), 1 tsp baking soda, warm filtered water in a basin to cover ankles, soak for 20-30 minutes 2-3 times a week. Best way to get cellular magnesium levels up quickly.
We are on this journey for 5+ years. 2 kids.
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