Fatigue

[lpop]

Our 6 year old has been suffering from extreme fatigue since this all started….it might be improving a bit, but a child who gave up naps 3 years ago is now sleeping a few hours extra per day in the afternoon as well going to bed earlier. Is this a normal side effect? If so, has it improved as they improved etc?? Thanks

[pr40]

have you looked at the chronic fatigue syndrome? our kids complain of fatigue often but they have nothing like what you describe.

i assume sleep is not restorative.

the are some new findings about cfs. scan, apparently, shows different white matter in the brain which means that it is becoming diagnosable.

[momslove]

Our DD (now 16) has experienced significant fatigue. It has increased and decreased over time. We have described it to doctors as a symptom of concern and also considered the possibility of avoidance by sleeping (but still a symptom). This past week has been very difficult again and today she didn't get out of bed until 2:00. She was in bed by 10 pm last night. I don't know how much she slept, but do know that she did nothing except sleep or rest in bed because she won't sleep alone... For our DD, it is definitely a part of the package! Earlier in this journey, when I was more stunned by it all, I would watch her sleep and knew that she was totally zonked out for hours beyond what would be "normal".

 

The fatigue did improve when she improved overall, but she has relapsed some. We did some thyroid testing because, in part, of the fatigue. She is now on levothyroxine, but a small dose. Not sure it has much impact in terms of symptoms.

[T_Mom]

Check iron level -- both of our daughters have low levels, also might try B-12

[rowingmom]

Fatigue was one of DD's significant symptoms. Bartonella infection was responsible.

[Mayzoo]

Our kiddo had a great deal of fatigue. I attribute it to all her viruses. As her titers are dropping, her energy is improving.

[MaryAW]

Before my DD's onset she slept unusually long hours. At onset, she had the insomnia and night wakings, which continue. She gets tired quite easily; however, it is not extra sleeping, just fatigue.

[nicklemama]

You need to check ferritin levels. My son had a lot of fatigue. Everything was a chore for him, at 5 yrs old. We found very low ferritin levels, then we found Lyme disease. I also discovered I had lyme after I developed severe fatigue.

[cobbiemommy]

Fatigue has always been one of DS main symptoms/concerns. Interestingly, since he has went out for sports and started weight lifting, his stamina has improved at least in terms of being able to practice. Fatigue at other times is still a problem...

 

He also lies in bed for several hours before he can get to sleep and awakens frequently throughout the night.

[MaryAW]

I wanted to add one important thing. We had a sleep study done on our DD, which I think a lot of us do for our PANS children. The dr. said that most of the PANS children they tested had narcolepsy. There is a link between strep and narcolepsy. Here is a link about one study:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2786037/

 

Here is a link on this forum to a similar discussion.

 

http://latitudes.org/forums/index.php?showtopic=16716

[EAMom]

Fatigue is a very common symptom of Lyme and certain other tick borne diseases. My friend's dd who has Lyme/Babesia/Mycoplasma has severe fatigue. Also certain viruses can cause fatigue.

 

I wouldn't expect fatigue to be a typical strep only PANDAS symptom. However, at the CA Symposium Swedo said that when they've done sleep studies on PANDAS kids they have a REM behavior disorder. Also, I think a sleep study is good when there is fatigue to rule out sleep apnea (also might be an indication for T/A). There are other treatments for sleep apnea if he doesn't have his tonsils.