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Need chizzuk/ pans child and everything falling apart

 
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amother




OP
 

Post Mon, Jan 24 2022, 5:59 pm
Just need chizzuk
A child sick with pandas
Everything my husband and I have built in our home/ marriage/ children is all being challenged and strained and I’m sitting here crying and hiding. Some days are so much harder than others, I’m not chas vshalom complaining; I just have no where to turn to for anyone who can even understand me. It’s effecting my shalom bayis , my children are all affected, I’m trying to just get by day by day and be a mother And work and take care of my kids …. I would never dream what this illness does , besides for the pain my child who is sick must be dealing with on a day to day. I’m just looking for words of chizzuk and tefillos for my child to have a quick and complete refuah .
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amother




Peru
 

Post Mon, Jan 24 2022, 6:01 pm
My heart breaks for you, I strongly encourage you to look for other answers as lot's of symptoms being blamed on pans/ pandas can be fixed/ dealt with if you see it through another lens.
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amother




Bottlebrush
 

Post Mon, Jan 24 2022, 6:08 pm
I feel like I’m in a similar situation except DC hasn’t been diagnosed with pandas. Yet! My regular pediatrician doesn’t believe in it and I don’t know where to start.
May I ask how you got a diagnosis and if your regular pediatrician helped you?
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amother




OP
 

Post Mon, Jan 24 2022, 7:07 pm
I have done many things, psych meds, therapy, dr in williamsburg who diagnosed him with pandas, year of antibiotics and seeing positive change but then regressing to get worse, meeting a shaliach who sent us to a very expensive doctor who did a ton of tests and found besides for strep there was Lyme and other infections causing pans, I feel so grateful to have gotten more clear insight , but now is the road of finding the right treatment and davening and healing.

To the mothet who posted against pandas, I want you to know as a pandas parent comments like that hurt, believe me we don’t say hey my kid has anxiety it must be pandas. It comes with a whole slew of symptoms and changes and I just send you a bracha that you should never have a child with that, but truth be told until you see or live with a pandas child , you can’t understand what we deal with on a daily basis. How we wish it was just a little anxiety that some therapist can help with CBT therapy or OCD that would just be helped with exposure therapy. How we wish .
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amother




OP
 

Post Mon, Jan 24 2022, 7:41 pm
Amother bottlebrush where do you live , you need to go to someone other than your pediatrician if your pediatrician doesn’t believe in it. Dr Schulman had a protocol that you can give your doctor if he’s willing to use it otherwise you need to find someone who will help you. The sooner you get help the better
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amother




Chestnut
 

Post Mon, Jan 24 2022, 7:50 pm
Fellow pandas mom here sending you massive hugs. Pandas and Lyme are beasts of epic proportions. Hope you find clarity and the right shaliach to vanquish them. I won’t post treatment advice but I can probably offer some if you’re interested. Or maybe we PM’d already ? Either way, the best thing I did was join pandas and Lyme groups on FB . The support, information and advice you will find there is unparalleled.
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amother




Cadetblue
 

Post Mon, Jan 24 2022, 8:01 pm
Oh yeah, I get it. Parenting a panda is the hardest thing I've ever experienced. It drove dh and I apart, traumatized our other kids, strained our relationship with dc's school, made my extended family on both my side and dh's think I am crazy in many ways. It has literally ripped every part of me into a bazillion shards. I don't even know who I am anymore.

It's been a nice amount of years since diagnosis, and even quite a few more since onset. Many things are better-my relationship with dh is much more solid than ever before, I still don't think I'm a great mother but I have learned to parent a lot more calmly, dc's school for the most part leaves me alone for the moment, extended family has made their peace with my alleged insanity which they still believe strongly.

I would love to read into your future and tell you it gets better. I don't know if that's true so I won't say it. In most cases, it does settle into some patterns that you can recognize and work with. With time, you can learn what is and isn't good for your child.

I don't think it sounds like you want to talk about treatment options here so I won't get into that. I just have to say that our experience has been that any treatment is better alongside craniosacral therapy.

PANS is brutal and makes you say and do things a decade ago you could've sworn you'd never ever do. I wish I can promise you it will go away. I don't know, hasn't happened yet for us. My dc is stable a lot of the time. There are still struggles. I hope you have better success than we've had and your dc has a complete recovery quickly.
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chams




 
 
 
 

Post Mon, Jan 24 2022, 8:07 pm
Hugs. Until you live in the shoes of a panda parents you can not imagine the pain and tears a parent of a panda child goes thru. I feel for you. It is very hard. My doctor didn't tell me about pandas when I would bring up my dd issues and it was one night researching symptoms on imamother where I found out about pandas. Bh you have a diagnosis. My dd didn't have Lyme and bh recovered from strep and mycoplasma. It took over a year and many different treatments but we were lucky. Lyme is tricky. There is a frum pandas and pans AE whatsapp group on there, there are people who have experience with Lyme if you would like to join pm me
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amother




OP
 

Post Mon, Jan 24 2022, 8:27 pm
Thank you so much everyone for taking the time to reply . It means so much to know I’m not alone . The Facebook idea sounds good but I have no idea how to use Facebook.
The cranio sacral therapist , does that haveto be someone who knows pandas/lyme or can it be any chiropractor that does craniosacral. Also do you have someone you recommend in Brooklyn? Thank you!
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amother




Chestnut
 

Post Mon, Jan 24 2022, 9:01 pm
amother [ OP ] wrote:
Thank you so much everyone for taking the time to reply . It means so much to know I’m not alone . The Facebook idea sounds good but I have no idea how to use Facebook.
The cranio sacral therapist , does that haveto be someone who knows pandas/lyme or can it be any chiropractor that does craniosacral. Also do you have someone you recommend in Brooklyn? Thank you!
I joined Facebook just for the medical support groups. You can make a fake profile. It’s not hard to figure out how to use it.
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GiGichai




 
 
 
 

Post Mon, Jan 24 2022, 9:08 pm
You can join our watsapp support group for pandas/lyme. Ucan pm me.
I wear the same unfortunate badge as you.
Hugs.
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amother




Cornsilk
 

Post Mon, Jan 24 2022, 9:17 pm
I started a thread about our family falling apart.
Relationship with husband is currently nonexistent.
Sometimes I want to give DC up for adoption.
I totally get you. It's a special hell that you don't know until you live it.
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amother




OP
 

Post Tue, Jan 25 2022, 7:32 am
It’s so sad and when I see they really child , a glimpse of his old self, his remorse and care and love , I want to cry and bring back the real him. He’s suffering so much
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amother




Cadetblue
 

Post Tue, Jan 25 2022, 7:56 am
amother [ OP ] wrote:
Thank you so much everyone for taking the time to reply . It means so much to know I’m not alone . The Facebook idea sounds good but I have no idea how to use Facebook.
The cranio sacral therapist , does that haveto be someone who knows pandas/lyme or can it be any chiropractor that does craniosacral. Also do you have someone you recommend in Brooklyn? Thank you!

Not necessarily, although it's nice to work with someone who gets it. It's not necessarily a chiropractor though.. I find a lot of craniosacral therapists are massage therapists, sometimes ot or pt. Not So many are chiropractors.
I'm sorry, I'm not in Brooklyn so I can't help you.
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amother




OP
 

Post Tue, Jan 25 2022, 10:21 am
Thank you for your response . What does cranisacrial therapy do? Does anyone know someone in Brooklyn who is good
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amother




Cadetblue
 

Post Tue, Jan 25 2022, 2:14 pm
amother [ OP ] wrote:
Thank you for your response . What does cranisacrial therapy do? Does anyone know someone in Brooklyn who is good

It calms the nervous system. There are many benefits, but that's mainly what you might see.
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amother




Chestnut
 

Post Tue, Jan 25 2022, 5:45 pm
amother [ OP ] wrote:
It’s so sad and when I see they really child , a glimpse of his old self, his remorse and care and love , I want to cry and bring back the real him. He’s suffering so much
Hug Hug
You are both suffering in very different ways.
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