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Forum -> Children's Health
Pandas and sleep
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amother
Indigo


 

Post Wed, Jan 23 2019, 1:00 am
My preteen child has been diagnosed with pandas. BH it seems more mild but she cannot sleep in her room she must be in my room, nor can she sleep through the night. This is getting very very draining. I'm looking for advice and help to get her to sleep the whole night in her own bed. Ive tried passion flower and benadryl neither seem to do the trick. Please help! !!
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Jewishmom8




 
 
    
 

Post Wed, Jan 23 2019, 1:29 am
why is she having trouble sleeping? Is it anxiety based?
My son has pandas so I know its not easy...
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amother
Smokey


 

Post Wed, Jan 23 2019, 5:17 am
Speak to the doctor who's treating her about the severe nighttime anxiety she's having.
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amother
Indigo


 

Post Wed, Jan 23 2019, 6:58 am
Jewishmom8 wrote:
why is she having trouble sleeping? Is it anxiety based?
My son has pandas so I know its not easy...


Im assuming that it's anxiety based. She's says she's scared to go to sleep so I sit with her and play music till she drifts off but then she wakes up shortly after and refuses to sleep anywhere other than in my room. In general her panda symptoms are all based around her anxiety and fear of being alone.
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amother
Indigo


 

Post Wed, Jan 23 2019, 7:00 am
amother wrote:
Speak to the doctor who's treating her about the severe nighttime anxiety she's having.


I did. Hence the benadryl and passion flower options. But they aren't really getting her to sleep in her room. Once she's in my room she's sleeping much better but I need her to stay sleeping in her bed the whole night. Not waking up and needing to come to my room.
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amother
Brown


 

Post Wed, Jan 23 2019, 9:14 am
My daughter had that but way worse, she would sit in my room shaking from fear ,’in the beginning we had no choice but to have her in the room, for a while for the anxiety was so great. It was also draining I feel for you. Is your child being treated for the pandas on a antibiotics? Sometimes therapy is also needed at some point. Hatzlacha, with Hashem a help and the right doctors it does get better
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amother
Indigo


 

Post Wed, Jan 23 2019, 9:31 am
amother wrote:
My daughter had that but way worse, she would sit in my room shaking from fear ,’in the beginning we had no choice but to have her in the room, for a while for the anxiety was so great. It was also draining I feel for you. Is your child being treated for the pandas on a antibiotics? Sometimes therapy is also needed at some point. Hatzlacha, with Hashem a help and the right doctors it does get better


Yes she's on antibiotics and is slowly making progress in other areas though not as fast as I would like but at least there's progress and tiny baby steps in the right direction. We had that shaking in fear in the beginning as well. How did you get your daughter past this? In this area she seems stuck and not making any progress. Are you in the NY area? Do you have a good therapist to recommend?
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amother
Brown


 

Post Wed, Jan 23 2019, 9:42 am
So it’s did take time, a lot of time, but my daughter also had a lot more symptoms so after regular Antibiotics not helping much from pediatrician, I went to Schulman... over the course of 2-3 months she has you track the symptoms to see if they’re getting better. In terms of therapy, I would say your best bet is to call relief and tell them your situation and see who they recommended. That’s what we did.
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amother
Indigo


 

Post Wed, Jan 23 2019, 1:37 pm
What does Dr Shulman do other than tracking the symptoms. I'm only 6 weeks into this but I think my pediatrician seems well informed. Thanks for the tip about relief.
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amother
Brown


 

Post Wed, Jan 23 2019, 2:32 pm
That’s good that your pediatrician is knowledgeable about it. Every kids symptoms is different , she also put her on vitamin D and probiotics and I think fish oil - which she never took (my kid had major issues with eating). We write down her major issues/fears and Every two weeks we had my daughter rate it on a scale from 1-5 or 1-10 . By us antibiotics weren’t making a difference at some point so she slowly weaned her. She also recommends Motrin when there’s a flare. Maybe one night when she’s having such fear try Motrin see if it helps.
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amother
Indigo


 

Post Wed, Jan 23 2019, 3:57 pm
So she's on vitamin d and motrin and probiotics already. I see my pediatrician is really on top of things. I guess we'll wait a little longer and see if there's improvement in this area too. Thanks
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FranticFrummie




 
 
    
 

Post Wed, Jan 23 2019, 4:05 pm
Have you tried melatonin?

Does your DD know that her anxiety and fear are PANDAS based? It would be useful to repeat to her "I know you are scared right now. You are safe. This is just the germs playing tricks on your brain. We are going to get you better. You are safe."

Keep it simple, don't over-explain, just repeat that things are going to be OK, and that she is safe. If she is constantly looking for reassurance, after a couple of times you can gently ask her "Do you remember what I said last time? What did I say?" and have her repeat back to you that she is safe and that she'll be OK.

Anxiety and panic attacks are so hard to deal with, for you and for her. I actually went to a 7 week parenting course to learn how to deal with DD's anxiety, which was showing up in OCD behaviors. Within a few weeks she stopped triple checking the doors and windows. Eventually I let her check once, and after that she sort of just trusted me to lock up at night and didn't need to check for herself anymore.

Hang in there. Let your DD stay with you for now, if you can find a way to make it work. Maybe tell her that she can stay, but she has to be quiet and let you sleep. If she can't settle and won't sleep, give her a night light and let her read a book. BTDT!
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amother
Smokey


 

Post Wed, Jan 23 2019, 4:07 pm
amother wrote:
So she's on vitamin d and motrin and probiotics already. I see my pediatrician is really on top of things. I guess we'll wait a little longer and see if there's improvement in this area too. Thanks

Are you using the brand name Sandoz for antibiotics? It's the only one that has the anti-inflammatory properties that Schulman recommends.
Also, what's the name of your pediatrician? It's so nice to hear there are general docs that are able to help children with PANDAS.
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amother
Chartreuse


 

Post Wed, Jan 23 2019, 4:22 pm
So good that she is getting helped. 6 weeks in is not a long time for such severe symptoms. Just try and give her support. Can someone sleep in her room in the meantime? Maybe a sibling? You and your husband switch off? She will heal, but it can take a lot of time. A PANDAS brain is not a rational brain, and there is a lot of behavioral regression. It's just emergency mode now. And she does need uninterrupted sleep in order to heal.

If it was my child, I would treat it like a serious illness and just give her the support she needs until you can slowly wean her off the support. And that time will come on it's own
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amother
Indigo


 

Post Wed, Jan 23 2019, 9:28 pm
Thanks for all the supportive responses. She has older siblings in her room but for some reason it's still not sufficient for her. The only place she'll sleep is on the floor near my bed. Ive done the repeat phrase of you are safe etc. I guess we just have to wait it out some more. Any time frame for how long this should take?
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amother
Smokey


 

Post Wed, Jan 23 2019, 9:32 pm
amother wrote:
Thanks for all the supportive responses. She has older siblings in her room but for some reason it's still not sufficient for her. The only place she'll sleep is on the floor near my bed. Ive done the repeat phrase of you are safe etc. I guess we just have to wait it out some more. Any time frame for how long this should take?

The antibiotics are super important. But from experience with this I've learned that the support to learn how to deal with the anxiety must go hand in hand as much as we want the antibiotics to be THE magic. It's so worthwhile and so important. She shouldn't suffer during flare ups or while waiting for the antibiotics to help. I wish I had a time frame but there's no magic number. Just keep doing what you're doing and give her support and tools she needs from professionals too. You're a great mom and she's lucky to have you.
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amother
Rose


 

Post Thu, Jan 24 2019, 4:36 am
Does pandas diagnoses exist in israel? Anyone know of a pediatrician in jerusalem that believes in Pandas? My son has so many of these symptoms and I'm at a loss.
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flmommy




 
 
    
 

Post Thu, Jan 24 2019, 7:52 am
I would let her sleep in my room until she is able to sleep in her own room comfortably. I am sure it is inconvenient and she is a big girl but she really has a medical reason. Good luck I am sure this whole situation is challenging. Refuah Shlema.
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amother
Bronze


 

Post Thu, Jan 24 2019, 8:04 pm
Trouble falling asleep and staying asleep are part of the pandas package, separate from separation anxiety and night time anxiety. Some of the things that people in the pandas community have reported have helped their kids with sleep issues are, in no particular order: going off gluten and dairy, treating yeast, addressing liver issues, supplementing magnesium, b vitamins (not within 5 hours before going to sleep), gaba, 5 htp, tryptophan, l theanine, ashwahghanda, valerian, magnesium and epsom salt footbaths, melatonin. Hope this helps. Good luck.
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amother
Indigo


 

Post Fri, Jan 25 2019, 1:43 am
amother wrote:
Trouble falling asleep and staying asleep are part of the pandas package, separate from separation anxiety and night time anxiety. Some of the things that people in the pandas community have reported have helped their kids with sleep issues are, in no particular order: going off gluten and dairy, treating yeast, addressing liver issues, supplementing magnesium, b vitamins (not within 5 hours before going to sleep), gaba, 5 htp, tryptophan, l theanine, ashwahghanda, valerian, magnesium and epsom salt footbaths, melatonin. Hope this helps. Good luck.


Woah!! That's a lot of info all at once. Does one person really do all those things or each person picks and chooses which of those they will try and then see if it has the desired affect. How would I treat yeast as that's something I'm already thinking might be one of the issues here? Also would you know how liver issues are diagnosed? I think my pediatrician actually did blood work to check her liver function and condition but maybe you can shed some light on that please.

Thanks.
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