Anxiety worse in the morning

[hugs2day]

My son has been in and on/off flare for almost 3 weeks. I think Allergies is partly to blame.

 

Anyway the past 4 days he wakes up with really bad anxiety and ocd intrusive thoughts. Takes a lot of care to get him out of bed. Whatever pops into his head when he wakes up he argues that its not evil. He is 8 but still likes to watch Backyardigans or phinieas and ferb and he will think about turning on his tv then yell and freak out screaming "its not evil". Nothing has really changed in how I treat his illness that I can think of, this OCD intrusive thoughts are new for him. He literally looks confused then screams, then pupils dilate , he cries not even knowing I'm there then he is out of it. It doesn't last that long but it is clearly like an attack on his bran. It is scaring me and clearly my son is scared which worries me more.

 

So I have literally been giving him breakfast in bed. He gets better after he eats and then will usually get up get ready and have only minor blips along the way. He is on longterm Azithro which keeps him at about 85% well, never had an IVIG and often has to have flagyl to pull him out of flares. Also takes nystatin.

 

But the morning wake up part is awful the past few days. .

 

I give him melatonin right before bed, he is taking allegra for allergies, Ibu if needed before bed, probiotics b4 bed, and I have been doing that routine for awhile and never had this morning fearful waking issue. During the day he has supplements like Vit D, Vit C, Zinc, and multi.

 

Anyone else see this with their child? What do you recommend? Thank you.

[LNN]

Because of the impact of flagyl, I have to ask if you've looked into lyme. But aside from that, the next thing that strikes me if the melatonin. Melatonin gives me really weird dreams and restless sleep. I don't like it at all. I feel "off" the next day - maybe because I didn't sleep well. In my methylation readings, I came across something about certain mutations making melatonin a bad fit for some, but I doubt I could find it again. So one thought would be to wean off melatonin and see what, if anything, happens. However, don't just stop melatonin cold turkey. If you've supplemented for awhile, your body makes less of its own. So you need to taper off a supplement and signal to your body to start making more of its own again.

 

Not everyone can tolerate D either, but since his issues are around waking, the melatonin was my first thought.

[airial95]

If he seems to snap out of it after he eats, try giving him snack at bedtime. I have heard others say that low blood sugar can set their kids off and a small snack can help bring them out of it.

[hugs2day]

LLM- I have explored Lyme but cannot get a conclusive test. When we have tried adding a second antibiotic initially he would improve but the past 9 months are different. When he gets infections while on Azithro the second antibiotic that is prescribed will actually trigger a flare which the doctor believes is clostridia due to long term abx. Flagyl seems to be the only thing that will help.

 

He keeps getting impetigo once we tried bactrim by the second dose his PANdAS goes into a whirlwind only flagyl can help. Another time Keflex was abx for the impetigo by day two once again he was sent into a tailspin of pandas.

 

The DAN doc says clostridia can look like pandas and that is what my son is dealing with. We cannot remove Azithro but cannot add anything else and Flagyl is used to keep down the clostridia.

 

My youngest is in a viscious cycle. Gut seems to be ruined. I found a new doc I want to get a consult with that is both DAN and LLMD.

 

My older son still holds strong in remission. 3 months without abx. That is one silver lining.

[Mary M]

My dd still suffers at times from the "difficult waking". She is now 15 and in a very functional place in terms of her PANDAS. She describes her morning feeling as the most difficult time of her day. She is disoriented upon waking. She struggles to enliven. The only medication she takes is augmentin, prophylactically. She also takes various vitamin supplements but she does not take a sleep aid like melatonin. Her arousal level is extremely low. She must be alerted numerous times each day to wake up. Now, many would say this is typical for a teen but she herself describes it as not being in control of her waking. She attempts to wake and can not. There are times she does not even recall when or who attempted to wake her. She feels angry and frustrated upon waking. What remains of the OCD challenges her during waking and preparing to move on with the rest of the day. She has reported that this part of her day is unlike any other part of her day. I'd love an answer to this...