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DD has so many issues. Where to start? Help me help her 😢
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amother
Mintgreen


 

Post Fri, Sep 10 2021, 3:38 pm
amother [ Pewter ] wrote:
Hi, I'm the pandas mom who blamed every individual issue the whole year on something else until I finally had to take a step back and say, ok nothing makes sense here. A wonderful malach told me to look into pandas and I believe I may even have corresponded with the knowledgeable amother above.

As someone with autoimmune diseases I can tell you that when there's 2 things wrong with the body, they are connected AND it will soon be more than 2 things.

Never treat the symptom. Go ahead and do your speech therapy, it's just a bandaid. I took pt for my swollen joint too. But that didn't heal the arthritis and your speech won't heal your daughters underlying issues.

There is something underlying like a million percent. I didn't say it was pandas. Pandas isn't a real disease anyways it's just an umbrella term as someone else said. There has to be a cofactor, mold bartonella lyme etc to cause it.

Save yourself time aggravation money and heartache and try this route first. It's better than the opposite where you exhaust yourself with the bandaids.


what route did you take?
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amother
Tan


 

Post Sat, Sep 11 2021, 9:59 pm
I am an SLP who evaluates and treats kids like this on a daily basis.
About the pandas: I am not an expert, and certainly you should see your pediatrician and do extensive bloodwork:

BUT sounding like you have marbles in your mouth is a definite speech issue and possibly may be a motor planning issue, such as apraxia. Apraxia can also have other manifestations, such as physical awkwardness and lack of coordination. You can google it for more information.

Further, being socially off, not understanding the intrinsic, ‘unspoken’ messages etc. is definitely a pragmatics language issue.

Sometimes emotional regulation issues show up because of extreme frustration with poor communication, sometimes they are executive functioning problems, and sometimes they may be caused by other factors.

Unless this child was completely up to par in all these areas and then had a sudden change, it’s irresponsible to call everything ‘pandas’ or somehow related to some illness that caused a psychological deterioration.

I think a neuropsychological evaluation, including an in-depth speech and language evaluation by an SLP highly experienced in these types of issues, is recommended.

Again, as I stated before, if there was a sudden change, for sure brain inflammation, pandas, Lyme, etc. should be ruled out with a full work up. Other physical illnesses should also be ruled out. And even if it wasn’t sudden, it can’t hurt to do all that just to be sure.

But if your child was always like this, and it’s just showing up more and more as she gets older and the gap is widening between her and her peers, you can’t ignore the fact that there may be a speech, language, social, and/or executive planning learning disability, which should be definitively ruled in or out and treated accordingly.

If I read correctly, and you’re in Brooklyn, you can call Rikki Schwartz at Relief for the best recommendation. You can also see Dr. Miriam Goldstein in Brooklyn, or Dr. Malky Zacharowitz in the five Towns, both of whom are excellent psychologists and will do full workups.

In my experience, your school evaluations will not get you far in figuring out the problem. Once you know what’s going on, you can make the decision if you want to do the school evals just to get services, but I don’t recommend doing them just to figure out what’s going on, as the school’s goal in evaluation is generally to determine eligibility for services, not to get to the root cause of the issues.
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amother
Green


 

Post Sat, Sep 11 2021, 10:51 pm
amother [ Tan ] wrote:
I am an SLP who evaluates and treats kids like this on a daily basis.
About the pandas: I am not an expert, and certainly you should see your pediatrician and do extensive bloodwork:

BUT sounding like you have marbles in your mouth is a definite speech issue and possibly may be a motor planning issue, such as apraxia. Apraxia can also have other manifestations, such as physical awkwardness and lack of coordination. You can google it for more information.

Further, being socially off, not understanding the intrinsic, ‘unspoken’ messages etc. is definitely a pragmatics language issue.

Sometimes emotional regulation issues show up because of extreme frustration with poor communication, sometimes they are executive functioning problems, and sometimes they may be caused by other factors.

Unless this child was completely up to par in all these areas and then had a sudden change, it’s irresponsible to call everything ‘pandas’ or somehow related to some illness that caused a psychological deterioration.

I think a neuropsychological evaluation, including an in-depth speech and language evaluation by an SLP highly experienced in these types of issues, is recommended.

Again, as I stated before, if there was a sudden change, for sure brain inflammation, pandas, Lyme, etc. should be ruled out with a full work up. Other physical illnesses should also be ruled out. And even if it wasn’t sudden, it can’t hurt to do all that just to be sure.

But if your child was always like this, and it’s just showing up more and more as she gets older and the gap is widening between her and her peers, you can’t ignore the fact that there may be a speech, language, social, and/or executive planning learning disability, which should be definitively ruled in or out and treated accordingly.

If I read correctly, and you’re in Brooklyn, you can call Rikki Schwartz at Relief for the best recommendation. You can also see Dr. Miriam Goldstein in Brooklyn, or Dr. Malky Zacharowitz in the five Towns, both of whom are excellent psychologists and will do full workups.

In my experience, your school evaluations will not get you far in figuring out the problem. Once you know what’s going on, you can make the decision if you want to do the school evals just to get services, but I don’t recommend doing them just to figure out what’s going on, as the school’s goal in evaluation is generally to determine eligibility for services, not to get to the root cause of the issues.
Here’s the thing. Pandas/Lyme/brain inflammation and language/pragmatic/social/executive planning/learning/motor delays aren’t mutually exclusive. They aren’t even differential diagnoses. The first list is root causes, the second is grouping of symptoms.

Also, the sudden onset bit is a myth. Yes, it’s currently considered one of the diagnostic criteria, necessary for a strict clinical diagnosis, kept that way intentionally by researchers to narrow down data, but in reality, brain inflammation can happen slowly, or very early on, and kids with slow onset respond just as well to treatment as those with sudden onset, provided their root causes are correctly identified.

I think It could be helpful for OP to identify a dsm/developmental diagnosis, but also a biomedical one.
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amother
Tan


 

Post Sat, Sep 11 2021, 11:47 pm
amother [ Green ] wrote:
Here’s the thing. Pandas/Lyme/brain inflammation and language/pragmatic/social/executive planning/learning/motor delays aren’t mutually exclusive. They aren’t even differential diagnoses. The first list is root causes, the second is grouping of symptoms.

Also, the sudden onset bit is a myth. Yes, it’s currently considered one of the diagnostic criteria, necessary for a strict clinical diagnosis, kept that way intentionally by researchers to narrow down data, but in reality, brain inflammation can happen slowly, or very early on, and kids with slow onset respond just as well to treatment as those with sudden onset, provided their root causes are correctly identified.

I think It could be helpful for OP to identify a dsm/developmental diagnosis, but also a biomedical one.


Are you telling me that every child who has ADHD, another executive planning disorder, pragmatic language disorder, language learning disabilities, autism, auditory processing disorder, a motor planning disorder, etc. …these are all SYMPTOMS? Nope…those are DIAGNOSES.

while I don’t have personal experience with pandas or the like, thank God, I have friends and relatives who have, and I have also treated hundreds of kids who have the above disorders and were probably BORN with them.

Are you going to tell me that every child with any kind of learning disability has brain inflammation?

Sometimes there are biomedical causes for things, like pandas, and certainly it should be checked into, but in the vast majority of cases like this that I’ve seen (and I’ve seen more than a thousand kids by now), that simply wasn’t the case.

Yes, I’ve had my share of kids with medical issues causing their regression or psychological symptoms, etc. but when every time a parent asks for direction regarding learning/social/language/academic/behavioral difficulties, the immediate response is ‘pandas’, I feel that is misguided.

Guess what? Some children have learning disabilities (not all in the academic realm) that don’t go away with antibiotics, ir vitamins, or diet change. And to only go the medical route while ignoring the very real possibility of something like that going on, is, in my opinion, very misguided.

I see kids with severe social issues who are on special diets, getting craniosacral therapy, doing special ‘exercises’ etc. and their misguided parents, whose heads are in the sand, are busy with all this when the child needs ADHD medication, or a tutor, or an excellent speech therapist.
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amother
Floralwhite


 

Post Sun, Sep 12 2021, 12:35 am
amother [ Pewter ] wrote:
Hi, I'm the pandas mom who blamed every individual issue the whole year on something else until I finally had to take a step back and say, ok nothing makes sense here. A wonderful malach told me to look into pandas and I believe I may even have corresponded with the knowledgeable amother above.

As someone with autoimmune diseases I can tell you that when there's 2 things wrong with the body, they are connected AND it will soon be more than 2 things.

Never treat the symptom. Go ahead and do your speech therapy, it's just a bandaid. I took pt for my swollen joint too. But that didn't heal the arthritis and your speech won't heal your daughters underlying issues.

There is something underlying like a million percent. I didn't say it was pandas. Pandas isn't a real disease anyways it's just an umbrella term as someone else said. There has to be a cofactor, mold bartonella lyme etc to cause it.

Save yourself time aggravation money and heartache and try this route first. It's better than the opposite where you exhaust yourself with the bandaids.


But the more than 2 things that OP describes, do seem very much related. If dd's speech is unclear and she has trouble finding her words, it makes sense that she would have social anxiety. Not reading social skills can also be related to the speech issue. This would further reinforce the social anxiety, and can all explain her rage, frustration at not being understood. Because she's not understood, she would be especially anxious about fitting in. Etc. And each of these then gets continually reinforced.

OP, I'm not sure if this was mentioned but specifically, trouble finding the right words might either be a sign of auditory processing issues or dyslexia. How is she academically? How is her reading?

If you're in NYC, evaluating through the board of ed is cheapest for you, but you will likely learn more from a full, professional neuro-psych evaluation. Sometimes graduate programs at universities will offer discounted rates for evaluations as the students perform them, under the oversight of their professors. Hth.
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amother
Green


 

Post Sun, Sep 12 2021, 10:21 am
amother [ Tan ] wrote:
Are you telling me that every child who has ADHD, another executive planning disorder, pragmatic language disorder, language learning disabilities, autism, auditory processing disorder, a motor planning disorder, etc. …these are all SYMPTOMS? Nope…those are DIAGNOSES.

Look, I’m not really looking for a debate. I’m trying to help OP, same as you. Yes, psych diagnoses are considered diagnoses because psych is the only medical field in which diagnoses are consistently made based on clinical symptoms only, with no biomarkers necessary. But they are still not root cause diagnoses. There is always something underlying the grouping of symptoms. Very very rarely it’s a true genetic or irreversible cause like a tbi, but most of the time there are factors that can be addressed. This is backed by current evidence, and more and more of it comes out each day. Autism is by and large seen as a disorder of the immune system, have you seen the latest research on microglial activation in autism? Have you seen the research on increased gut permeability and adhd? Language disorders and mitochondrial fatigue? Anxiety and methylation? I can go on.

If OP would have described her daughter as simply having social pragmatic disorder, or another language or learning disorder, I would have said, maybe maybe it’s simply a brain mapping issue. But OPs daughter has mood issues. She has rage. She has excessive anxiety. That paints a broader picture of a brain out of balance. And a brain out of balance isn’t usually rooted in the brain. It’s rooted elsewhere in the body.

I’m not telling OP not to get her daughter evaluated, and not to get her therapy. I’m telling her to explore other routes at the same time. Because we all know how limited therapy is. I’m in the field too.
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amother
Lightblue


 

Post Sun, Sep 12 2021, 10:42 am
I’m having same issues with my son. So who would you suggest is an expert at treating and getting to the tooth cause. When younger he sounded like marbles in his throat and constant drooling, (did adenoid and tonsill surgery, which helped). Social and general anxiety and poor body coordination, taking things literally, social skills. Made improvement over the years with therapy. Older now and went through stressful time regressed tremendously. Did tests came back positive for post Lyme, mold, high dopamine... the worlds but developed ocd severe social anxiety, irritable, stresses out easily, thought process is distorted. Did gut diet and inflammation in stomach for crohns and celiac improved but still not solving the neurological and social issues. Need recommendations who can treat to calm the brain and heal. Need someone top of the field that knows the whole shpiel and can treat with the right tinctures.
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amother
Aquamarine


 

Post Sun, Sep 12 2021, 11:08 am
amother [ Lightblue ] wrote:
I’m having same issues with my son. So who would you suggest is an expert at treating and getting to the tooth cause. When younger he sounded like marbles in his throat and constant drooling, (did adenoid and tonsill surgery, which helped). Social and general anxiety and poor body coordination, taking things literally, social skills. Made improvement over the years with therapy. Older now and went through stressful time regressed tremendously. Did tests came back positive for post Lyme, mold, high dopamine... the worlds but developed ocd severe social anxiety, irritable, stresses out easily, thought process is distorted. Did gut diet and inflammation in stomach for crohns and celiac improved but still not solving the neurological and social issues. Need recommendations who can treat to calm the brain and heal. Need someone top of the field that knows the whole shpiel and can treat with the right tinctures.


How did you treat the Lyme and mold etc?
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amother
Green


 

Post Mon, Sep 13 2021, 9:14 am
amother [ Lightblue ] wrote:
I’m having same issues with my son. So who would you suggest is an expert at treating and getting to the tooth cause. When younger he sounded like marbles in his throat and constant drooling, (did adenoid and tonsill surgery, which helped). Social and general anxiety and poor body coordination, taking things literally, social skills. Made improvement over the years with therapy. Older now and went through stressful time regressed tremendously. Did tests came back positive for post Lyme, mold, high dopamine... the worlds but developed ocd severe social anxiety, irritable, stresses out easily, thought process is distorted. Did gut diet and inflammation in stomach for crohns and celiac improved but still not solving the neurological and social issues. Need recommendations who can treat to calm the brain and heal. Need someone top of the field that knows the whole shpiel and can treat with the right tinctures.
Where are you located?
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