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-> Children's Health
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amother
Garnet
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 Mon, Oct 11 2021, 7:56 pm
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I'm curious - would a PANDAS specialist ever tell someone they need to see a psychiatrist?
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amother
Tan
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Mon, Oct 11 2021, 7:56 pm
| amother [ Emerald ] wrote: | | Just putting it out there that once someone has Lyme they will test positive their entire life so dont use lyme as your proof. So even after their treated for PANDAS or whatever they will still have lyme. |
To test positive for Lyme you need IgG and IgM and multiple not just one. You don't test positive for active infection for Lyme.
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amother
Emerald
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Mon, Oct 11 2021, 7:59 pm
| amother [ Garnet ] wrote: | | I'm curious - would a PANDAS specialist ever tell someone they need to see a psychiatrist? |
Good question. Has anyone ever gone to a PANDAS specialist and been told they don't have PANDAS (I want to know for real. Not being cynical)?
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amother
Tan
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Mon, Oct 11 2021, 8:01 pm
| amother [ Garnet ] wrote: | | My DD's psychiatrist did a full workup, bloodwork, checked thyroid, etc...and only after that diagnosed her with a mood disorder. |
Of course this is necessary. Even for adults.
This psychiatrist literally told me he has many patients who come to him after years of PANDAS treatments, some of which were successful. But they needed psychiatric meds and he is able to stabilize them; however, often the child has already suffered from the whole PANDAS ordeal and not having been given the correct treatment. Btw psychiatrists do not like to medicate children. It's a difficult undertaking.
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amother
Calendula
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Mon, Oct 11 2021, 8:03 pm
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Yes my sister in law took her child to doctor Schulman and dr Schulman said her child doesn’t have pandas. Additionally, I have been sent by many pandas specialists to psychiatrist , these children are suffering, and for some the psychiatrist can Medicare to help them till they are healed, but for others the psychiatric medications can make it worse. I’m sorry for all you who are against the diagnosis of pandas, you should never have a child with It, let alone more than one child.
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amother
Cerise
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Mon, Oct 11 2021, 8:03 pm
| amother [ Royalblue ] wrote: | | You’re wrong psychiatrists go to medical school. They know more than you guaranteed. |
My bad. Yes of course they do. I meant that their expertise isn't immunology neurology etc. They have a very narrow minded view on brain health. Tell me if they do a blood test to measure ur dopamine and serotonin levels before prescribing stuff to higher or lower it.
Your emotions and mental health start in the brain. Wouldn't it make sense to rule out imageable neurological issues before giving out medicine that has suicide as a possible side effect?
PeT scans and spect scans show inflammation in the blood vessels of the brains of our kids very clearly.
Which psychiatrist is doing that first?
And to the anonymous person who wrote that ur relative is abusing her kids by saying they have pandas, how exactly? Have u been standing in her shoes in her house 24/7?
And yes you can test positive for lyme for years, but the psychiatrist I mentioned above, these kids tested for NEW infections and had never been treated for lyme yet. She discovered this 30 years into practicing psychiatry.
And one more thing, testing for lyme is beyond not accurate because it tests for hard to detect antibodies and not for the actual bacteria. If u were around during covid, u.know that not everyone makes antibodies for everything. That is an immune system issue.
(My son had lyme disease. One of the 12 tests he had was positive but he had all the symptoms plus a tick bite. Until today, two years later,, he has never made those antibodies the cdc tests for...and yes he has pandas/neurolyme/autoimmune encephalitis/ call it any name u want but not diassociayve disorder(because of hallucinations) or severe anxiety disorder or severe OCD ODD and ADD etc...)
Sorry for this vent, im.just so tired of this fight, this need to.explain ourselves to "top psychiatrists", the schools, our inlaws. The lack of support is outstanding. The shame is huge because likely many of u.posted here, people blame our parenting or lack thereof.
I want to see how many of u have "best" parenting moments when ur son is in middle of a seizure/massive rage, when he can't remember them afterwards, and can't remember which hamd to say shema with and how to get out of his room,, when he is 7 and saying brachos three times before he eats, when he can't step foot outside ur front door, when u have been with him for a year at home already, when he gets baxk to his sweet brilliant self with antibiotics, motrin, steroids, ivig etc. finally. Only to go back to school, get sick with whatever virus is hanging around and we are back to square one..again and again.and again...
Thanx for ur "support" Mr. Top psychiatrist, and "parenting experts". Thank you mil who told us that.my son doesn't "deserve" anything extra we do for him because he isn't in school and acting like he should...thanx so much all of you together...rhanx so so so.much...(I'm crying now if u can't tell)
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amother
Emerald
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Mon, Oct 11 2021, 8:06 pm
| amother [ Calendula ] wrote: | | Yes my sister in law took her child to doctor Schulman and dr Schulman said her child doesn’t have pandas. Additionally, I have been sent by many pandas specialists to psychiatrist , these children are suffering, and for some the psychiatrist can Medicare to help them till they are healed, but for others the psychiatric medications can make it worse. I’m sorry for all you who are against the diagnosis of pandas, you should never have a child with It, let alone more than one child. |
I'm happy to hear this. I'm not against the diagnosis. I'm against how quick everyone is to say PANDAS when there are a million very basic easy to treat things before then.
There's a new thread someone posted about their child's anxiety. There are two examples that are very vague and what is the first response? Check for PANDAS because these two examples are classic PANDAS. It seems to me that based on this forum every behavior which is slightly out of the ordinary is a classic PANDAS behavior. Ppl here are giving it a very bad rep by putting it as a response to every single thread across the spectrum of every single behavior.
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amother
Cerise
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Mon, Oct 11 2021, 8:09 pm
| amother [ Garnet ] wrote: | | My DD's psychiatrist did a full workup, bloodwork, checked thyroid, etc...and only after that diagnosed her with a mood disorder. |
Wait, he did spect scan or pet scan? Mri? Eeg? Neurological workup?
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amother
Mintcream
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Mon, Oct 11 2021, 8:10 pm
| amother [ Cerise ] wrote: | My bad. Yes of course they do. I meant that their expertise isn't immunology neurology etc. They have a very narrow minded view on brain health. Tell me if they do a blood test to measure ur dopamine and serotonin levels before prescribing stuff to higher or lower it.
Your emotions and mental health start in the brain. Wouldn't it make sense to rule out imageable neurological issues before giving out medicine that has suicide as a possible side effect?
PeT scans and spect scans show inflammation in the blood vessels of the brains of our kids very clearly.
Which psychiatrist is doing that first?
And to the anonymous person who wrote that ur relative is abusing her kids by saying they have pandas, how exactly? Have u been standing in her shoes in her house 24/7?
And yes you can test positive for lyme for years, but the psychiatrist I mentioned above, these kids tested for NEW infections and had never been treated for lyme yet. She discovered this 30 years into practicing psychiatry.
And one more thing, testing for lyme is beyond not accurate because it tests for hard to detect antibodies and not for the actual bacteria. If u were around during covid, u.know that not everyone makes antibodies for everything. That is an immune system issue.
(My son had lyme disease. One of the 12 tests he had was positive but he had all the symptoms plus a tick bite. Until today, two years later,, he has never made those antibodies the cdc tests for...and yes he has pandas/neurolyme/autoimmune encephalitis/ call it any name u want but not diassociayve disorder(because of hallucinations) or severe anxiety disorder or severe OCD ODD and ADD etc...)
Sorry for this vent, im.just so tired of this fight, this need to.explain ourselves to "top psychiatrists", the schools, our inlaws. The lack of support is outstanding. The shame is huge because likely many of u.posted here, people blame our parenting or lack thereof.
I want to see how many of u have "best" parenting moments when ur son is in middle of a seizure/massive rage, when he can't remember them afterwards, and can't remember which hamd to say shema with and how to get out of his room,, when he is 7 and saying brachos three times before he eats, when he can't step foot outside ur front door, when u have been with him for a year at home already, when he gets baxk to his sweet brilliant self with antibiotics, motrin, steroids, ivig etc. finally. Only to go back to school, get sick with whatever virus is hanging around and we are back to square one..again and again.and again...
Thanx for ur "support" Mr. Top psychiatrist, and "parenting experts". Thank you mil who told us that.my son doesn't "deserve" anything extra we do for him because he isn't in school and acting like he should...thanx so much all of you together...rhanx so so so.much...(I'm crying now if u can't tell) |
I’m sorry that you feel like you’re fighting such a tough battle but that doesn’t mean I can’t know that someone very close to me has a dysfunctional house. No I’m not there 24/7- I’m assuming if I would I’d see even more things that are not right.
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amother
Cerise
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Mon, Oct 11 2021, 8:10 pm
| amother [ Cerise ] wrote: | | Wait, he did spect scan or pet scan? Mri? Eeg? Neurological workup? |
Also tested her with more sensitive lyme testing (better labs that are more sensitive to lyme?)
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amother
Mintcream
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Mon, Oct 11 2021, 8:12 pm
| amother [ Mintcream ] wrote: | | I’m sorry that you feel like you’re fighting such a tough battle but that doesn’t mean I can’t know that someone very close to me has a dysfunctional house. No I’m not there 24/7- I’m assuming if I would I’d see even more things that are not right. |
I’m also sorry about your mil- every child deserves kindness no matter what
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amother
Jean
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Mon, Oct 11 2021, 8:14 pm
| amother [ Garnet ] wrote: | | My DD's psychiatrist did a full workup, bloodwork, checked thyroid, etc...and only after that diagnosed her with a mood disorder. | what bloodwork? Did he look for infections? Inflammation? Autoimmunity? What about gut health? Neurotransmitter testing? Metabolic testing? B vitamin levels? Methylation? Celiac disease and non celiac gluten sensitivity? Mast cell disorder? Mold disease? Essential nutrients and minerals? If he missed any of this, it wasn’t a full workup, because every single one of these on their very own can cause mood disorders. That is a scientific fact.
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amother
Tan
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Mon, Oct 11 2021, 8:15 pm
| amother [ Cerise ] wrote: | | Wait, he did spect scan or pet scan? Mri? Eeg? Neurological workup? |
Depending on the symptoms yes. They won't do a PET scan and don't tell me PANDAS doctors do. What insurance will cover that?
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amother
Cerise
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Mon, Oct 11 2021, 8:15 pm
[quote="amother [ Mintcream ]"]I’m sorry that you feel like you’re fighting such a tough battle but that doesn’t mean I can’t know that someone very close to you has a dysfunctional house. No I’m not there 24/7- I’m assuming if I would I’d see even more things that are not right.[/quote
Give me examples. And we parents can tell u if it's true dysfunction or something that is side effect of neurological condition.
And of course, the house will seem dysfunctional. U try raising a non neuro typical kid without all the help and support that society gives to autistic and add communities and let me know how your house holds up.
If ur that close, you can actually roll up ur sleeves and help. This woman has noone else to, I promise.
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amother
Jean
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Mon, Oct 11 2021, 8:15 pm
| amother [ Emerald ] wrote: | I'm happy to hear this. I'm not against the diagnosis. I'm against how quick everyone is to say PANDAS when there are a million very basic easy to treat things before then.
There's a new thread someone posted about their child's anxiety. There are two examples that are very vague and what is the first response? Check for PANDAS because these two examples are classic PANDAS. It seems to me that based on this forum every behavior which is slightly out of the ordinary is a classic PANDAS behavior. Ppl here are giving it a very bad rep by putting it as a response to every single thread across the spectrum of every single behavior. | That was me and I don’t think her examples were vague at all. It’s exactly how my dd9’s pandas shows up.
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amother
Tan
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Mon, Oct 11 2021, 8:16 pm
| amother [ Calendula ] wrote: | | Yes my sister in law took her child to doctor Schulman and dr Schulman said her child doesn’t have pandas. Additionally, I have been sent by many pandas specialists to psychiatrist , these children are suffering, and for some the psychiatrist can Medicare to help them till they are healed, but for others the psychiatric medications can make it worse. I’m sorry for all you who are against the diagnosis of pandas, you should never have a child with It, let alone more than one child. |
Just to clarify. PANDAS exists, but it is also very easy to wrongly diagnose, especially considering the diagnostic criteria. It is real, it's not made up, but its not as common as some people suggest. That's it.
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amother
Jean
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Mon, Oct 11 2021, 8:17 pm
| amother [ Tan ] wrote: | | Just to clarify. PANDAS exists, but it is also very easy to wrongly diagnose, especially considering the diagnostic criteria. It is real, it's not made up, but its not as common as some people suggest. That's it. | Much more common than most people think.
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amother
Mintcream
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Mon, Oct 11 2021, 8:24 pm
[quote="amother [ Cerise ]"] | amother [ Mintcream ] wrote: | I’m sorry that you feel like you’re fighting such a tough battle but that doesn’t mean I can’t know that someone very close to you has a dysfunctional house. No I’m not there 24/7- I’m assuming if I would I’d see even more things that are not right.[/quote
Give me examples. And we parents can tell u if it's true dysfunction or something that is side effect of neurological condition.
And of course, the house will seem dysfunctional. U try raising a non neuro typical kid without all the help and support that society gives to autistic and add communities and let me know how your house holds up.
If ur that close, you can actually roll up ur sleeves and help. This woman has noone else to, I promise. |
I help her more than you know.
🙏
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amother
Cerise
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Mon, Oct 11 2021, 8:28 pm
| amother [ Tan ] wrote: | | Just to clarify. PANDAS exists, but it is also very easy to wrongly diagnose, especially considering the diagnostic criteria. It is real, it's not made up, but its not as common as some people suggest. That's it. |
Are u the pandas expert to tell us that it isn't as common as we say it is? But wait, u know what is so so so "common" and rampant in our communities? Mental health issues, ASD, ADD, suicides, eating disorders etc.
U know that my son presented as anorexic until we found the lyme? (He was 7) and did neurological workup which hit pay dirt?
Tell me why I shouldn't scream out to the world that there can and usually is a medical cause for eating disorders and they can be cured without trying to fight it their entire lives?
You want to say that not all mental health issues are neurogically based, and they need psychiatrist or psychology or parenting experts.
I am saying, that after my experience, it makes so much sense to say the exact opposite. Every mental health issue is caused by something happening in the brain or CNS. And science and research is well on the way towards that.
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amother
Acacia
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Mon, Oct 11 2021, 8:36 pm
| ra_mom wrote: | | I agree with this 100%. Pandas is real but it's not the catch all diagnosis. I do not agree with those posters who believe that a pandas diagnosis doesn't need to have sudden onset of symptoms. |
Ummm, I also didn't think so, but BH our Dr diagnosed it. Unfortunately we have tick infections and Strep (remember my kid getting strep once in his life and still reacting to it!) In this Doctor's extensive experience, he's come across many, many infection induced cases of autoimmune encephalitis/Pans that were NOT sudden onset. And yes, treated successfully.
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