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My 15 year old ds was diagnosed with PANDAS almost one year ago. His insomnia is a real problem right now. He has taken melatonin, Benadryl, Trazadone, Remuron, Valium, Lunesta and valerian root. Some did not work at all and others worked for 6-8 weeks and now are no longer effective. Any other suggestions? He also has an appointment with Llmd October 31 because he is not improved despite various antibiotics and ivig.

Thanks

Aggie

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My child had SEVERE insomnia. She stayed up around the clock and would then go to camp. Come home and sleep for 20 minutes and go to camp the next day. Went on for four days until we added the abx. back in. Here is what she is taking, and she falls asleep by 11:30 now, but it is not a deep sleep. Wakes at the drop of a pin. Still working on it. I hope this list of her meds/supplements helps you. Thinking of you....

 

 

11am
Bactrim 80/160
Minocycline 50mg
Breakfast- with food
Milk Thistle
600mg Motrin
4000 ui D3
6pm-Empty Stomach
10ml Iron
300mg Omegas
8pm
1/4 Capsule Milk Thistle
Bactrim
Minocycline
11pm
50mg Mag. Citrate
2-Melatonin
6mg. Seroquel
2 sm. scoops D-Lactate custum probiotic.
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i would suggest doing 23andMe genetic test and starting from there. given my genetic makeup, I had some luck with addressing COMT and CBS mutations. the goal here is a balance btw serotonin and dopamine.

you don't mention 5-htp which is another thing you might try. start with very low doses.

Ibuprofen is among other things a muscle relaxant. we sometime give a small dose to dd one hour before bed.

other things to try are vitamin d and magnesium and niacin all of which should help with serotonin production. but, as I said, to know what is likely to work you need a genetic test.

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Thank you all. I am going to try the 5-HTP first. He already takes Vitamin D. I will also give him Magnesium as I am sure there isn't much in the multivitamin. Melatonin (3-9 mg)and 100 mg ( 4 tabs) Benadryl no longer work. He used to take 50 mg Benadryl for sleep which worked beautifully for aout 6-8 weeks only. Can't wait for that LLMD appointment!

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I was a hopeless insomniac for most of my life...I have found that benedrill will lose it's affect over time because my tolerance level would increase, that could be happening with the some of the other meds as well. I too have just started 5htp with my pandas/ds, I really like the idea of serotonin boost. I don't think the body would build a tolerance but that is a guess.

 

pr40: I have not done the 23&me test for my ds, but I think I am going to. Do you think the dopamine issue with Pandas kids is the result of too much or too little?

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qannie47 --whether it is too much or too little dopamine depends on your genes and mutations. that's why you want to do genetic analysis. but don't expect a magic bulet. it will only confirm all you have guessed so far. I think that it is very important not to do any sleep aid except meletonin (and serotonin in general) and to focus on general well being in order to improve sleep. good luck

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