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Forum
-> Parenting our children
amother
OP
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Thu, Sep 09 2021, 11:57 pm
For months and months something was up with my preschool kid. Finally I sat down and searched in my Whatsapp and copied every single message I sent to the morah and complained to my husband, sisters, friend etc about. And it spells a completely heartbreaking timeline. The bigger picture is revealed.
The doctor said I caught it early and my kid is so young but I feel like, where was I all these months??? Almost a year now. Excusing every little thing until finally in the summer I started saying this isn't normal. I'm so sad for my sweet baby who lost a year of life. I'm sad for our marriage which took a serious hit. I'm sad that we have to now embark upon this whole journey.
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amother
DarkOrange
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Fri, Sep 10 2021, 12:50 am
Life is full of regrets. Keep going forward.
You’re a good mother🙂
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amother
Natural
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Sat, Sep 25 2021, 9:26 pm
It took me a year from onset until I put the pieces together and got my child started on treatment. I don’t blame myself for not knowing, but I do blame myself for wasting time trying to self treat because I didn’t want my kid on long term antibiotics. But once we got the ball rolling, we’ve been going at this beast and won’t rest until it’s gone. I’m sorry yo7 have to embark on this journey. I don’t wish it on my worst enemies. But we’re here for you. Support groups are a lifesaver if you’re going to do this.
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amother
Camellia
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Sat, Sep 25 2021, 9:30 pm
What makes you sure it’s pandas?
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amother
OP
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Sat, Sep 25 2021, 9:32 pm
amother [ Camellia ] wrote: | What makes you sure it’s pandas? |
Pediatrician and 2 doctors specializing in pandas.
I actually didn't think it was pandas for a long time.
Ugh our life is so miserable right now. There is no words, we are all suffering. It's like a secret invisible hell. I can't even describe it.
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amother
Azure
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Sat, Sep 25 2021, 9:36 pm
I can cry with you. I have the same situation . It’s painful and effects everyone. The worst is those people who don’t believe in it and say we make it up or that it’s our parenting. Know that I am saying a tefilla for you now and the right shaliach should have the complete cure for your child.
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amother
Natural
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Sat, Sep 25 2021, 9:36 pm
amother [ OP ] wrote: | Pediatrician and 2 doctors specializing in pandas.
I actually didn't think it was pandas for a long time.
Ugh our life is so miserable right now. There is no words, we are all suffering. It's like a secret invisible hell. I can't even describe it. | I get it. I’ve been there. I lived that hell for a long time. The invisible ness, the loneliness, the shaky marriage, the anger, other people’s denial and questioning and criticizing. All of it. It’s life sucking. Its going to be a long, long haul but I promise it gets better.
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amother
OP
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Sat, Sep 25 2021, 9:41 pm
Ty both for your kind words
The shaky marriage
So true. It's just so hard.
Idk how special needs moms do it.
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amother
Natural
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Sat, Sep 25 2021, 9:47 pm
amother [ OP ] wrote: | Ty both for your kind words
The shaky marriage
So true. It's just so hard.
Idk how special needs moms do it. |
Mine wasn’t amazing to begin with, and there was lots else going on, but the fact that my husband refused to recognize that there was something going on behind just “a phase” “ she’s overtired” “she needs two good petch”, the fact that he refused to support me pursuing treatment, and the fact that he couldn’t relate to the my reality where I felt like I was drowning in a pool of grief because it literally felt like I had lost a child, all that sent me over the edge. It was almost worse than the disorder itself. All I can say is that we’ve been at this for 6 years now, and we’ve all come a long, long way.
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amother
OP
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Sun, Sep 26 2021, 7:00 am
My family is literally falling apart. Send help.
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GiGichai
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Sun, Sep 26 2021, 8:52 am
Pandas? Please join us on our support watsapp chat for us pandas parents. We help and hug each other. And if you are already on, private message one of us. A phone call can go a long way. Hugs. Been at this for a while and yt is especially hard.
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amother
Natural
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Sun, Sep 26 2021, 12:32 pm
amother [ OP ] wrote: | My family is literally falling apart. Send help. | OP what kind of help do you need?
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amother
Azure
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Thu, Sep 30 2021, 1:34 pm
Op thinking of you. How did you managed yom tov? How are you holding up
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amother
Papaya
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Thu, Sep 30 2021, 5:41 pm
Dealing with this now so so tough. Its been so hard I'm crying...Pediatrician and I are not 100% sure it's PANDAS. but I do strongly suspect. Any Dr's in Lkwd specialize in PANDAS? Wish I can confirm yes or no..
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amother
PlumPink
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Thu, Sep 30 2021, 5:51 pm
amother [ Papaya ] wrote: | Dealing with this now so so tough. Its been so hard I'm crying...Pediatrician and I are not 100% sure it's PANDAS. but I do strongly suspect. Any Dr's in Lkwd specialize in PANDAS? Wish I can confirm yes or no.. |
I know Indich will draw blood and give u a concrete answer and medication regime until is semi under control. You’re not going to get a whole entourage of emotional support thou
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amother
Lime
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Fri, Oct 01 2021, 3:01 pm
BH you caught it when you did. I'm just piecing together all my 13 yr old daughters issues are likely related to pandas. I wonder if she can even be helped at this point.
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amother
Firebrick
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Fri, Oct 01 2021, 3:17 pm
amother [ OP ] wrote: | For months and months something was up with my preschool kid. Finally I sat down and searched in my Whatsapp and copied every single message I sent to the morah and complained to my husband, sisters, friend etc about. And it spells a completely heartbreaking timeline. The bigger picture is revealed.
The doctor said I caught it early and my kid is so young but I feel like, where was I all these months??? Almost a year now. Excusing every little thing until finally in the summer I started saying this isn't normal. I'm so sad for my sweet baby who lost a year of life. I'm sad for our marriage which took a serious hit. I'm sad that we have to now embark upon this whole journey. |
Remember your emunah, this was the exact timeline Hashem decided had to be. Don’t blame yourself. Hatzlacha.
.
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amother
Natural
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Fri, Oct 01 2021, 3:19 pm
amother [ Lime ] wrote: | BH you caught it when you did. I'm just piecing together all my 13 yr old daughters issues are likely related to pandas. I wonder if she can even be helped at this point. | Yes, there is still hope. Though it will probably take more aggressive and extensive treatment to see gains. Join pandas forums on FB thread personal accounts of kids who recovered years after onset. Reach out to a specialist.
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