Why does my son have so much mania at night

[momtocole1]

I know that so many PANDAS kids have sleep issues but I am trying to understand more about why...

My son has mania at night. If I could switch it around and have him sleep all day and be awake all night, I feel like he would be so happy and I lives would be so much easier.

I am trying to understand what is happening in his brain at night that makes him so much happier. He is like a different kid, most of the time at night, even when he is having a huge exacerbation of OCD and or tic symptoms.

 

He becomes more playful, happy and loving.

 

Now fast forward to the morning. I is like waking up a bear from a cave. It is like he has a split personality He is so upset and sad and mean. He does A LOT better once he eats breakfast. It is so bad sometimes that I wish that I cold put an IV in him while he is sleeping to pump him with nutrients before he wakes.

 

I am wondering about his results on the Madelaine Cunningham tests and how these levels might play into the day and night stuff..,

 

Anti-Lysoganglioside was higher then range

Anti-Tubulin and Anti-Dopamine 1 was VERY high

 

I think part of it is the restlessness that he feels that makes it so hard for him to settle down to sleep. I can hear him toss and turn for a long time. Although even when he is able to go right to sleep and get a decent nights sleep like 8 - 9 hours he is still completely exhausted in the morning.

 

It is easy to see how people can confuse PANDAS with other types of disorrders. Bipolar kids can be manic at night. Some might just diagnose it as a blood sugar issue but it is so much more than that.

 

Have a good night,

 

Judy...

[Megs_Mom]

Hi Judy - I know what you are talking about, I think. We used to call it "wwIII" in our house, we dreaded mornings so much. This isn't quite what you are asking (I'll let smarter folks answer that!). I often thought her metabolism had changed - we also found that she needed small meals between regular meals, or we would have breakdowns. Much of our day was spent in ensuring that food was in front of her - a real challenge as much of her contaimination fears (OCD) were focused on food. In retrospect, for Meg, we learned that she had Peptic Ulcers, so I do wonder if the excess acid was processing food too quickly, and causing her extreme hunger & sensitivity to some degree. Dr. L thinks the ulcers may be related to the PANDAS in terms of inflamation.

 

Anyway, as soon as we go into an episode, we have a sensory plan that is part of our management - it works fairly well - if you want the whole thing to see if you get any ideas from it, I can email it to you. The main component was breakfast - my husband & I get up earlier & ensure that we have food for her immediately when she wakes up. We don't even talk to her, we just have the food right there for her. We used Kashi Crunch as a starter, as it has good levels of Carb & Protein - which she seemed to need. Then we would move to eggs & toast - or whatever good breakfast she liked. We even did pancakes & hard boiled eggs. Getting food into her immediately was key - if we waited even 5 minutes, the morning would spiral out of control.

 

We also reduced all stimulation to the bare minimum - clothes were picked out the night before and no changes or discussion allowed. We would help her dress & walk her to each additional activity in order (such as brushing teeth) without a lot of talking, except a very calm voice saying only things like "I know you can do this, nice job, you are doing very well this morning, I know that was hard but you did great", etc. There was no TV - this was difficult at first, but she had such an issue transitioning, that we had to keep those to a minimum. We gave her that time in the afternoon, and after a few days, she got used to this. To this day, we don't allow TV on school mornings.

 

We also did a transition between night clothes & daytime - with a bath. In the bath, we did a gentle scrub down with a rough sponge, to wake her up & get her skin used to touch. There was no "cleaning" in the bath, just a fun quiet warm sensory time for about 10 minutes. Then when she got out, we'd fold her in a big towel & scrub her down - then give her a bear hug. Then we'd get her dressed. (Getting dressed was the second major issue, after waking up & needing food) - I'm not talking about the OCD issues about clothes - those were different. Just the sensory part or her body feeling wrong in the morning).

 

We were also very focused on sleep, and this will make me sound like a bad parent, but at the worst, I slept with her. I would lay down & basically model sleep. It left us with residual issues that we are just resolving, but it got her more sleep & made the mornings easier. We are a "sleep at all costs" family.

[faith]

judy,

interesting, I think we can chalk up another similarity! my son does the same thing, he's all goofy and laughy at night when we're supposed to be winding down for getting ready for bed and he looks like he's ready to party, runs and jumps up on the bed, laughs while trying to fall asleep and keeps trying to tell me funny stuff. I'm always having to tell him to knock it off and go to sleep.

 

then in the morning.....oh hello the beast!.....he's extremely hard to rise, whines and complains, and keeps trying to escape back to bed. when he sits down to breakfast, he's like the customer in a diner that you want to smack. wants this, doesn't want that, "give me another spoon, this one's sticky", "gimme some more milk"...whines while he tries to fix his own hair and won't let me intervene or that's another story .....b.etc. etc... he gets irritated at everything I do. Megs mom, I try to do the same thing and not talk, cause I know he's gonna have some sort of agitation. and I also had given in to the lying down with him or letting him just bunk with us in order to just get him to sleep faster, as arguing and going back and forth just wasted more time. he is 10 and still insists on sleeping with one or both of us. as I type this, I'm in HIS bed and he's in mine with my husband.

 

Have either of you ever suspect hypoglycemia? I don't think my son really has it, but he acts like it. he doesn't ask for food during the day, that's usually a clue, but he sure acts like that in the morning, a realy grump, miserable at every turn.

 

Sorry, I guess I don't really have any advice, except for the checking out hypoglycemia, but what megsmom does with her girl is very good, altho her dd is younger and ours is a little older so a littler harder to get into routine.

 

Faith

[Suzan]

My dd is much worse in the morning and night. In the morning, she does not want to be talked to or touched and she needs to wake up just right or everything is off. In the evenings, she starts to deteroriate and feels and acts awful. There are more demands on her at those times too (get ready, brush teeth, take pills, be on time, do this, do that...) and she can't handle that well at all.

 

MegsMom, we follow the same sleep philosophy as you did. At times it was the only thing keeping us together, that we got enough sleep! DD8 finally does sleep in her own room all night but she has to fall asleep on the couch and then I walk her to her room after she's been asleep for a little while. If she starts out the night in her own bed, awake, she's too afraid.

 

Susan

[EAMom]

Have you tried give your son (don't remember his weight) a couple of advils after school and then a couple more (with a snack) at bedtime and see if that changes any behaviors?

[momtocole1]

I have tried motrin sporadically, I am going to make it part of the routine. i also give him a calcium and magnesium supplement that helps sometimes.

 

He can't swallow pills, terrified of choking. He is 120 pounds. I give him 3 tsp of grape motrin (has to be grape! :0 )

I think he needs more because the label only goes up yo 85 pounds. If I go higher he gets a stomach ache!

Thx, Judy

 

 

Have you tried give your son (don't remember his weight) a couple of advils after school and then a couple more (with a snack) at bedtime and see if that changes any behaviors?

[momtocole1]

Hi Faith,

 

Wow, it is like I am looking in the mirror as far as what we experience too. My son is exactly the same. The behaviorist that we work with accused me of being a short order cook. He said, "your son just barks out orders and you follow them". He finally is starting to understand that what is happening with him right now CANNOT be treated behaviorally! We have tried every behavior program in the book. When he in this "state" we are abused parents suffering from Post Traumatic Stress Disorder.

 

Hearing more about your son makes me worried about my next door neighbors daughter. She just started showing tic symptoms last week after being sick. I will post about it with more details. Her daughter is exactly like your son and my son at night. I think she has PANDAS but my neighbor won't believe it.

 

Have a GOOD day,

 

Judy...

 

 

 

 

judy,

interesting, I think we can chalk up another similarity! my son does the same thing, he's all goofy and laughy at night when we're supposed to be winding down for getting ready for bed and he looks like he's ready to party, runs and jumps up on the bed, laughs while trying to fall asleep and keeps trying to tell me funny stuff. I'm always having to tell him to knock it off and go to sleep.

 

then in the morning.....oh hello the beast!.....he's extremely hard to rise, whines and complains, and keeps trying to escape back to bed. when he sits down to breakfast, he's like the customer in a diner that you want to smack. wants this, doesn't want that, "give me another spoon, this one's sticky", "gimme some more milk"...whines while he tries to fix his own hair and won't let me intervene or that's another story .....b.etc. etc... he gets irritated at everything I do. Megs mom, I try to do the same thing and not talk, cause I know he's gonna have some sort of agitation. and I also had given in to the lying down with him or letting him just bunk with us in order to just get him to sleep faster, as arguing and going back and forth just wasted more time. he is 10 and still insists on sleeping with one or both of us. as I type this, I'm in HIS bed and he's in mine with my husband.

 

Have either of you ever suspect hypoglycemia? I don't think my son really has it, but he acts like it. he doesn't ask for food during the day, that's usually a clue, but he sure acts like that in the morning, a realy grump, miserable at every turn.

 

Sorry, I guess I don't really have any advice, except for the checking out hypoglycemia, but what megsmom does with her girl is very good, altho her dd is younger and ours is a little older so a littler harder to get into routine.

 

Faith

[faith]

Judy,

I'm not crazy about the flavored motrin, because of the dyes in it. don't know if your son has reactions to the artificial ingredients, but I don't take chances with my son because of his tics. I used the grape for a bit, but wondered if the dyes were causing more problems, so I got the adult caplets, they are pretty small and round and my son doesn't swallow pills either, but he'll put it in his mouth and crack it once or twice with his teeth and then swallow it with water. that might work if you coaxed him on it.

 

Faith

[brooke]

I know that so many PANDAS kids have sleep issues but I am trying to understand more about why...

My son has mania at night. If I could switch it around and have him sleep all day and be awake all night, I feel like he would be so happy and I lives would be so much easier.

I am trying to understand what is happening in his brain at night that makes him so much happier. He is like a different kid, most of the time at night, even when he is having a huge exacerbation of OCD and or tic symptoms.

 

He becomes more playful, happy and loving.

 

Now fast forward to the morning. I is like waking up a bear from a cave. It is like he has a split personality He is so upset and sad and mean. He does A LOT better once he eats breakfast. It is so bad sometimes that I wish that I cold put an IV in him while he is sleeping to pump him with nutrients before he wakes.

 

I am wondering about his results on the Madelaine Cunningham tests and how these levels might play into the day and night stuff..,

 

Anti-Lysoganglioside was higher then range

Anti-Tubulin and Anti-Dopamine 1 was VERY high

 

I think part of it is the restlessness that he feels that makes it so hard for him to settle down to sleep. I can hear him toss and turn for a long time. Although even when he is able to go right to sleep and get a decent nights sleep like 8 - 9 hours he is still completely exhausted in the morning.

 

It is easy to see how people can confuse PANDAS with other types of disorrders. Bipolar kids can be manic at night. Some might just diagnose it as a blood sugar issue but it is so much more than that.

 

Have a good night,

 

Judy...

 

 

It took me so long to convince our son's psychiatrist that he was not bipolar. Before we had IVIG, morning was always a nightmare. I can only imagine that is part and parcel of the PANDAS.

[EAMom]

Brooke...I have a big fear that a big percentage of kids with a bipolar diagnosis are actually PANDAS. I'm so glad you questioned the diagnosis.

[DebC]

Our daughter also had giddy episodes at night. Those episodes were much worse when her psychiatrist had put her on Prozac. Then, they were almost drunk episodes. I pulled her off of the Prozac after several months and then we were just back to occasional giddiness. Do you notice that your children's pupils are also dilated at night? I notice this with our daughter and wonder if it's from PANDAS or it it's just how her eyes function.

[momtocole1]

I do notice dilated eyes sometimes. I am going to start looking much more closely. It is so hard to tell with my son because he has such dark brown eyes.

 

 

Our daughter also had giddy episodes at night. Those episodes were much worse when her psychiatrist had put her on Prozac. Then, they were almost drunk episodes. I pulled her off of the Prozac after several months and then we were just back to occasional giddiness. Do you notice that your children's pupils are also dilated at night? I notice this with our daughter and wonder if it's from PANDAS or it it's just how her eyes function.

[peglem]

Our daughter also had giddy episodes at night. Those episodes were much worse when her psychiatrist had put her on Prozac. Then, they were almost drunk episodes. I pulled her off of the Prozac after several months and then we were just back to occasional giddiness. Do you notice that your children's pupils are also dilated at night? I notice this with our daughter and wonder if it's from PANDAS or it it's just how her eyes function.

I think the dilated pupils is PANDAS. It made me remember.... a month ago when we were waiting for my daughter's dental surgery, the waiting room was running this medical-type stuff programming. It was some famous doctor who was promoting his latest book on near death experiences (or something like that...). So he was telling this story of a woman that nearly froze to dealth, and when he talked about her condition when she arrived at the hospital, he said something like, "Her pupils were very dilated, which is a sign of brain inflammation!" At the time, I was thinking that I better look that up because my daughter's pupils are dilated almost all the time. Then I had to deal with her recovery from surgery- and getting ill almost at the same time. So I forgot about it until just now, when you mentioned it here. Thanks for reminding me!

[Buster]

I think the dilated pupils is PANDAS.

We too had dilated pupils. We thought it was akathesia from being on an SSRI and switched dosage and SSRI. However, we do think it was just the PANDAS now.

[smartyjones]

morning was always a nightmare. I can only imagine that is part and parcel of the PANDAS.

 

 

my son also had bad nights and horrible mornings. at night, he was very wound-up obnoxious. mornings were as you all describe. i too, believe it is part of pandas.

 

although my son is gluten-free, casein-free, i am not a huge food allergy (as in intolerance, not hives, wheezing) advocate. however, the big advocates peg difficult mornings as food allergy symptoms.

 

i believe the strep to be the root cause of my son's troubles and believe we saw improvements based on abx not avoiding foods. i think his food issues are secondary to the strep but presently keep him off these foods as an added means to help his system heal without added assaults from unneccessary antibodies.

 

an integrative dr in baltimore that i was referred to (i think from dr. k's office but not fully sure) has a great website with info - he sees many autistic patients. he has something about a gf/cf diet and says he has no science to back up it makes a different but has countless stories from parents who believe it makes a huge difference.

 

i just mention it as something to consider b/c even small improvements may be helpful.