Pandas and sleeping problems

amother

Mon, Jul 06 2020, 8:35 pm

My child who is 6 is on antibiotics for 3 Months now for pandas - my question is one of the symptoms he had was night terrors. Now he still gets them but much less severe , like he sort of sleep walks and yells for me and shakes a little. But I realize he just has terrible nights sleep. He is so restless, he’s in my bed every night he comes in. He kicks me like crazy and screams or moans. He’s always moving. Tonight he told me why do I have scary dreams every night. The doctor who prescribed the antibiotics said give it time, but honestly I’m worried. Where do I go to make sure he’s ok like his whole sleeping pattern , he still wears pull ups too, he wakes so much at night it’s just something isn’t right

amother

Tue, Jul 07 2020, 7:53 am

Amother jade you sound so knowledgeable and I know that’s more the way to go with all the vitamins and healthy lifestyle, but honestly he eats the same few foods , lives on bread and cookies and Cheerios and milk and pizza.... can’t get him to try new foods can’t get him to take vitamins. His behavior symptoms got a lot better being on the antibiotics but I feel like now we are status quo. Doc checked blood work and numbers went down a little but he says still pretty high. So continue another month of antibiotics.

amother

Jade

Tue, Jul 07 2020, 8:53 am

amother [ OP ] wrote:

antibiotics alone won’t cure your child. I’m not saying this to guilt you, I know how very difficult and lonely this journey can be. Can you choose 1 or 2 interventions to try for sleep? It sounds like sleep is the next big issue now. You can try and see if any of the supplements come in chewable, that shouldn’t be hard to get a kid to take. We also bribed my pandas kid heavily to take supplements. The good news is the more they take the better they get and the more compliant they are... or maybe you could try the footsoaks, they are a bit involved but kids tend to enjoy them, I set mine up with a video, or some books, or coloring, or a cd to listen to, we add some essential oils, set a timer for 20 minutes... they find it very very calming, and when we were consistent it was by far one of our best interventions...

Obviously if you haven’t tried melatonin yet, that would be a good place to start. In addition to being necessary for deep restful sleep, (pandas kids may not convert enough neurotransmitters to make enough of their own melatonin) it’s been shown to be extremely beneficial for detoxing the brain and taking down inflammation. Antihistamines are also helpful for sleep and for inflammation.

amother

Ivory

Tue, Jul 07 2020, 9:06 am

amother [ OP ] wrote:

Listen to amother jade. She has helped me a lot! She knows her stuff.

Also, your sons diet sounfs a lot like my pandas diet.
Dairy and gluten.... autoimmune-problems-wiating-to-happen-diet.
These foods are addictive. Once he will be off of it for a bit, this appetite will improve and his palate will expand.
There is silk yogurt made w almond milk (soy is also terrible. Likely worse than milk yogurt) and almond/rice milk too.
I see a huge difference in my children.

My 7 yo is also still in pull-ups. But went from waling 4x a night and impossible to cosleep with(thrashing, yelling) to sleeping thru or once a night wake where she usually (not always) puts herself back to sleep alone.

There is hope.

P.s. abx barely did anything for my kid, we went the homeopathic/vitamin/diet route. Aint so smooth but it's getting better bh.

amother

Tue, Jul 07 2020, 9:18 am

Can you tell me more about the foot baths. I bought essential oils for my older pandas kids and I never used them bec just scared and never the right time to try them and don’t know how to use them properly. But epsom salt and essential oils I have I would try that. We do use meletonin- he used to be impossible to calm down and go to sleep he would scream and refuse but now bh he’s gotten better but I see he can fall asleep without it even if it takes little longer so I don’t give it more than like twice a week. But even nights with meletonin he wakes dew times and kicks and all. What do u recommend in terms of homeopathy or do you have a good chiropractor or doctor in Brooklyn that can help me besides for the antibiotics . Changing his milk now is really not an option, he doesn’t eat yogurt , he eats cream cheese sandwiches , pizza, he can eat a whole challah shabbas .... sometimes I get him to have some avocado or grapes but that’s the extent of healthy foods . Milk he loves and ice cream....

amother

Jade

Tue, Jul 07 2020, 10:39 am

amother [ OP ] wrote:

I don’t use essential oils therapeutically but we make a footsoak with magnesium chloride flakes (Amazon), epsom salt, a little baking soda and a few drops of any oil that the child enjoys, put 1 cup each of the salts in a bin with warm water enough to cover above child’s ankles, add 2T baking soda and a few drops oil, have child soak in it for 20-30 minutes in the evening. This gets magnesium and sulfur levels up quickly and effectively, opening detox pathways and taking down inflammation.

About the diet, I agree with the pp that your child is probably addicted to gluten and dairy. And those are the worst possible foods for his gut and brain Sad

. Can you get him yummy gf bread and challah, and wayfare or kite hill cream cheese? So delicious makes heavenly ice creams, you don’t miss the dairy at all. And find a milk sub he likes. Oat, almond, rice, hazelnut, cashew, there are so many options these days.

Another thing to consider is that the antibiotics messing with his gut flora may actually be contributing to sleep disturbances. Are you supplementing with a high quality probiotic?

Also, sometimes the antibiotics cause what is known as die off, basically, while it is killing off a whole. Lot of bacteria the bacteria give off toxins as they die and are broken down and removed, and this can cause exacerbation of symptoms. A binder like pectin or activated charcoal can help escort the debris out of the body.

amother

Coffee

Tue, Jul 07 2020, 11:05 am

amother [ Ivory ] wrote:

Ivory, just curious how you know Amother Jade helped you? In other threads another amother would be Jade or do you mean this thread helped you a lot? 🤔

amother

Tue, Jul 07 2020, 11:06 am

I wish someone can just sit down with me and help guide me. Going to doctors who prescribe this and that and then following up over phone a month or two later and doc doesn’t know us... it’s just like I feel stuck. My son is so picky. He only eats rye bread, couldn’t even get him to take whole wheat bread. If milk is different container or Tatstes slightly different it goes in the garbage. I don’t know how I would even start to change dairy and gluten. The gluten free breads are no where near what he eats.
Why doesn’t the doctor talk about gut health and everything in between. I went to health food store and they gave me a good probiotic. I give it usually once a day but sometimes forget. Also it’s not always possible to give it hour before the meds or two hours after. So sometimes I give it at breakfast and give antibiotics when he gets home.
The foot bath thing is there any downside to eat, like can it cause any problems if child isn’t deficient in magnesium or whatever else it is .

amother

Jade

Tue, Jul 07 2020, 11:21 am

amother [ OP ] wrote:

I hear you about the diet. It’s hard. Pickiness is part of the disorder Sad

There is an integrative md in Brooklyn who treats pandas, he will give you a complete protocol that will address gut health and such. But he doesn’t accept insurance. Unfortunately, despite mountains of scientific evidence, mainstream medicine still hasn’t caught on to the role but health plays in immune and neurological health, and ways to remedy that.

The footsoaks are generally very well tolerated. Rarely they can cause symptoms to worsen, like for example increased irritability. That doesn’t mean it’s too much magnesium, rather that the extra magnesium is stressing the adrenals and you will need to add electrolytes and potassium. Sometimes ppl report loose stools, that can be an issue with magnesium, usually only oral magnesium but some kids may be very sensitive. But again, for the most part they are very well tolerated and very effective if you are consistent.

amother

Jade

Tue, Jul 07 2020, 11:40 am

amother [ OP ] wrote:

Haven’t found someone good yet who takes insurance . What kind of doc is he , would u say his name? Does he do some formal evaluation to figure out child’s gut healthy, like is there stool tests or any other test to be done...

yes, he runs specialized stool tests, lots and lots of blood tests, etc. he will guide you with diet, Rx meds, supplements, etc. he is a pediatrician with a regular practice, once a week he sees peds patients with chronic or neuro immune disorders at his integrative practice. He addresses methylation issues, heavy metals, etc. I would share his name but not publicly. There are 2 other functional medical drs in the ny, one on LI. All of them are going to stress diet as part of your protocol Wink

amother

Jade

Tue, Jul 07 2020, 12:22 pm

amother [ OP ] wrote:

😞 I don’t know what to do anymore. I can buy the whole health food store vitamins and waste money on essential oils and go for OT Eval sand doctor visits and it’s just so hard to fight with a child to eat or change his eating patterns especially in this situation , that sometimes I’m just happy I know he ate something that’s food

I know just what you mean Hug

It can end up being a catch 22. Watch “the magic pill” on Netflix

Digestive enzymes can help a little until you are able to make the change. Can you try b1 and b12 vitamin patches?

Homeopathy might be a good option for you. They’re tiny little pellets, not a lot to take, don’t cost much, and can give you enough gains to try other thingS. Maybe amother ivory can recommend a practitioner.