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-> Parenting our children
momof2+?
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 Thu, Nov 18 2021, 1:48 pm
How is she sleeping? Did you check for pinworms?
Does she eat well?
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amother
White
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Thu, Nov 18 2021, 4:37 pm
The tics you're describing sound like it may be secondary stuttering. The behaviors to get the word out. You can look it up to get more detail. It's interesting that it started and stopped though. Stuttering does sometimes happen with early language development so long as it doesn't stay for longer than six months.The low energy and ringing in the ears and screaming here and there can be ear related... look at fluid even if not inflamed.
There can definitely be some difficulty with all of the transitions...
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amother
Ivory
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Thu, Nov 18 2021, 6:36 pm
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Easy test. Give advil or aleve daily for a few weeks. I gave 1 adult pill to my 4y old (tiny weight) If you see improvement then it reduced brain inflammation and was indeed Pam's or pandas.
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amother
Darkblue
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Thu, Nov 18 2021, 7:02 pm
| Sukarya wrote: | Hi
If anyone is interested in an update, or just for me to share and feel seen...
It isn't PANDAS. She never had strep. I went to a really good doctor, my daughters doctor, the thing is, no one has answers for me.
The stuttering has almost completely stopped. She still will clear her throat often. She is also sometimes feeling bla and tired. And its not every day. She can have a day when I say "wow, she's back to herself" and then she'll be back to not herself. It can change with the hour, by moment. I'm also noticing that she doesn't hear that well... She will ask me to "what" so many times. She complained a while ago that she has beeping in her ears but she never brought that up again. I thought that she was describing the fire alarm that went off the day before...
So if anyone has a good ear doctor that they can recommend me in the Lakewood area I would appreciate it.
You know, I sometimes get frustrated not having answers. I am not a doctor. I haven't gone to school for that. But when I go to the doctor and say what is wrong and they take a strep culture or whatever and say that everything is okay and nothing seems off, it frustrates me. Nothing should ever be wrong. But - I am the mom. I know my child. I know something isn't right. My daughter is not herself. The teacher says she doesn't seem different from the other kids. But I know what my daughter used to be like. I know that compared to the rest of the class she might seem fine. But she used to have more energy. She wasn't this sensitive. She was happy. She was content. She wasn't shy. She wasn't moody. She wasn't like this. I write this and want to cry. I care about her so much. I think about her all the time. My husband actually told me that he heard me sleep talking about her - that I was talking to her so gently and softly and lovingly. Even in my sleep she is in my mind.
Hashem, please help my daughter. Please help me help her. | There is no blood test or lab test that rules in or out pandas. It’s a clinical diagnosis based just on symptoms and presentation. If a dr tells you they tested negative for it the dr has no clue what they are talking about.
The throat clearing sounds like a tic. Buzzing in ear is tinnitus, another symptom of neuroinflammation. It could be pandas even if culture was negative but it could also be lyme. Lakewood is a huge hotspot and most kids never have a rash or see the bite. I’m sorry doctors are being dismissive it’s the worst feeling ever. And your kid changing like this literally feels like you lost them. I’ve been there man6 times over and the grief is very real. But don’t stop advocating for your child. We use Dr. Eilenberg and the PAs there are always willing to prescribe 30 days of antibiotics if I mention m6 kid developed tics. Also, brain inflammation, like all inflammatory disorders, follows a relapsing remitting pattern, so it makes sense that symptoms come and go and fluctuate. What you’re describing is without a doubt neuroinflammation. The question is just what’s your trigger and how will you treat.
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Sukarya
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Mon, Nov 22 2021, 12:43 pm
| momof2+? wrote: | How is she sleeping? Did you check for pinworms?
Does she eat well? |
She does not have pinworms. She used to eat very well. Now not so much...
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Sukarya
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Mon, Nov 22 2021, 12:45 pm
| amother [ White ] wrote: | The tics you're describing sound like it may be secondary stuttering. The behaviors to get the word out. You can look it up to get more detail. It's interesting that it started and stopped though. Stuttering does sometimes happen with early language development so long as it doesn't stay for longer than six months.The low energy and ringing in the ears and screaming here and there can be ear related... look at fluid even if not inflamed.
There can definitely be some difficulty with all of the transitions... |
I'm grateful the stuttering stopped.
I actually got a prescription from the doctor this morning for hearing test. Maybe she doesn't hear that well... It can be so frustrating for her.
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Sukarya
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Mon, Nov 22 2021, 1:01 pm
| amother [ Darkblue ] wrote: | There is no blood test or lab test that rules in or out pandas. It’s a clinical diagnosis based just on symptoms and presentation. If a dr tells you they tested negative for it the dr has no clue what they are talking about.
The throat clearing sounds like a tic. Buzzing in ear is tinnitus, another symptom of neuroinflammation. It could be pandas even if culture was negative but it could also be lyme. Lakewood is a huge hotspot and most kids never have a rash or see the bite. I’m sorry doctors are being dismissive it’s the worst feeling ever. And your kid changing like this literally feels like you lost them. I’ve been there man6 times over and the grief is very real. But don’t stop advocating for your child. We use Dr. Eilenberg and the PAs there are always willing to prescribe 30 days of antibiotics if I mention m6 kid developed tics. Also, brain inflammation, like all inflammatory disorders, follows a relapsing remitting pattern, so it makes sense that symptoms come and go and fluctuate. What you’re describing is without a doubt neuroinflammation. The question is just what’s your trigger and how will you treat. |
Thank you for all this.
I will look more into it.
I want to rule out hearing problems and then ill go to neuroinflammation.
Lots of things to take care of.
But I will never stop advocating for her and I will IYH find her the right help.
Thank you.
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amother
Babypink
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Sun, Jan 02 2022, 4:18 pm
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Op, do you have an update?
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Sukarya
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Tue, Jan 04 2022, 12:09 pm
| amother [ Babypink ] wrote: | | Op, do you have an update? |
Hi
Thank you for asking
I do not have any major update.
Physically she seems fine by all doctors.
But- She is still acting out sometimes. Less then a few weeks ago but its like waves. It comes and goes... One moment like this and one moment like that...
I'm starting to think that it might be emotional... Or maybe not.. I don't even know.
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amother
Gold
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Tue, Jan 04 2022, 1:52 pm
Clearing the throat could be post nasal drip or allergies. My daughter did this for a bit and I gave her allergy meds and it made such a difference.
I don't know why your happy kid changed though. Sorry, it must be so hard to watch.
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amother
Tanzanite
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Tue, Jan 04 2022, 2:04 pm
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Are you willing to try a natural route if all the doctors can’t find anything? Like cranio sacral therapy? I don’t live in Lakewood so I don’t have anyone to recommend, but that might help you also
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amother
Babypink
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Tue, Jan 04 2022, 3:05 pm
| amother [ Tanzanite ] wrote: | | Are you willing to try a natural route if all the doctors can’t find anything? Like cranio sacral therapy? I don’t live in Lakewood so I don’t have anyone to recommend, but that might help you also |
Do you have someone in brooklyn?
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amother
Lemonlime
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Tue, Jan 04 2022, 4:04 pm
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I didn’t read thru all replies but from ur op a lot of symptoms seem like pandas symptoms. Taking bloodwork will indicate if there’s strep in the blood. It usually is caused when strep went undiagnosed and stayed in the blood. Hatzlacha on getting to the root of the problem!!!
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amother
Darkblue
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Tue, Jan 04 2022, 4:37 pm
| amother [ Lemonlime ] wrote: | | I didn’t read thru all replies but from ur op a lot of symptoms seem like pandas symptoms. Taking bloodwork will indicate if there’s strep in the blood. It usually is caused when strep went undiagnosed and stayed in the blood. Hatzlacha on getting to the root of the problem!!! | Hope it’s ok to clarify this common misconception. Pandas isn’t caused by strep in the blood. The bloodwork that drs look at to diagnose pandas are strep titers, in other words, the immune systems response to strep. Although elevated titers aren’t proof of pandas, they can be used to indicate that the body has recently fought strep that possibly went untreated, or is fighting a chronic subclinical strep infection. The proposed mechanism for pandas is molecular mimicry between antibodies fighting strep and antibodies attacking a part of the brain called the basal ganglia. Pandas is autoimmune, the symptoms are caused by antibodies that are supposed to be attacking strep attacking the brain instead.
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amother
Lemonchiffon
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Tue, Jan 04 2022, 4:56 pm
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Pandas is something we speak about a lot on here and it’s wonderful because if it wasn’t for awareness many children would fall through the cracks and end up an psych meds and just not be their old happy selves. But there’s something called PANS also, which is important to know and the difference is pandas has to do with strep, while pans is similar but there are other triggers to the Neuro inflammation for example, Lyme , mycoplasma, mono many things. I’m sure you have a wonderful doctor and you trust your doctor, I also trust mine; but till I had a kid with pandas and he told me it was psychiatric I knew something wasn’t right , she changed over a short period of time. Yes symptoms wax and wane it’s called where it comes and goes like a cyclic way. You sound like a very smart initiative and on top of things mom. Don’t let your kid suffer, find someone that deals with Pans/Pandas/ and it costs money, but go for the help now .or maybe you have a doctor willing to give a try of antibiotics for a few weeks and see if you see a changes. From one mom to another; I have a child one with pandas due to strep and one who I have gone from doctor to doctor not realizing it’s pans thinking is psychiatric , in the end Lyme was the issue, which regular Lyme blood tests don’t pick up on. There are more expensive out of state blood work to do to pick up on Lyme or coinfections. Google pans and pandas, research as much as you can, bec you are the advocate for your child. I’m still fighting for mine and it’s not easy, especially when you have those who say it’s your parenting. Hatzlacha refuah shelama.
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amother
Darkblue
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Tue, Jan 04 2022, 5:24 pm
| amother [ Lemonchiffon ] wrote: | | Pandas is something we speak about a lot on here and it’s wonderful because if it wasn’t for awareness many children would fall through the cracks and end up an psych meds and just not be their old happy selves. But there’s something called PANS also, which is important to know and the difference is pandas has to do with strep, while pans is similar but there are other triggers to the Neuro inflammation for example, Lyme , mycoplasma, mono many things. I’m sure you have a wonderful doctor and you trust your doctor, I also trust mine; but till I had a kid with pandas and he told me it was psychiatric I knew something wasn’t right , she changed over a short period of time. Yes symptoms wax and wane it’s called where it comes and goes like a cyclic way. You sound like a very smart initiative and on top of things mom. Don’t let your kid suffer, find someone that deals with Pans/Pandas/ and it costs money, but go for the help now .or maybe you have a doctor willing to give a try of antibiotics for a few weeks and see if you see a changes. From one mom to another; I have a child one with pandas due to strep and one who I have gone from doctor to doctor not realizing it’s pans thinking is psychiatric , in the end Lyme was the issue, which regular Lyme blood tests don’t pick up on. There are more expensive out of state blood work to do to pick up on Lyme or coinfections. Google pans and pandas, research as much as you can, bec you are the advocate for your child. I’m still fighting for mine and it’s not easy, especially when you have those who say it’s your parenting. Hatzlacha refuah shelama. | Yes to this. When I say pandas I usually mean to say all forms of neuroinflammation but I forget that other Amothers might not know the difference.
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FranticFrummie
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Tue, Jan 04 2022, 5:45 pm
Please get your child to a top ENT doctor.
My DD was going through this, and it turned out that her tonsils and adenoids were completely enlarged and infected, and she also needed ear tubes to help her hearing.
Within 36 hours I had a whole new kid. They gave me my sweet, kind, wonderful DD back literally overnight.
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amother
Babypink
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Tue, Jan 04 2022, 7:34 pm
| FranticFrummie wrote: | Please get your child to a top ENT doctor.
My DD was going through this, and it turned out that her tonsils and adenoids were completely enlarged and infected, and she also needed ear tubes to help her hearing.
Within 36 hours I had a whole new kid. They gave me my sweet, kind, wonderful DD back literally overnight. |
Wouldn’t a regular pediatrician be able to see if this was the case ?
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Sukarya
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Tue, Jan 18 2022, 12:18 pm
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Its so hard... This morning was the first time I found myself hiding in the bathroom for some quiet. Its been difficult days and nights... I feel like crying... I am so sad for her that she is going through a hard time. I pray that He helps me help her. And I need strengths. So much strength is needed...
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amother
Darkblue
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Wed, Jan 19 2022, 9:20 am
| Sukarya wrote: | | Its so hard... This morning was the first time I found myself hiding in the bathroom for some quiet. Its been difficult days and nights... I feel like crying... I am so sad for her that she is going through a hard time. I pray that He helps me help her. And I need strengths. So much strength is needed... | What’s been going on and what have you tried so far?
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