Update and frustration

[norcalmom]

Hi everyone,

Its been awhile since I've posted, but I do check in and read a bunch every week or so. I'm just trying to spend less time on here.

DS had second IVIG last April. He, aside from horrible side effects of days of migraines and nausea, did well. Not as improved as the first IVIG but he wasn't as bad off as the first time either.

 

Unfortunately since a little before school started we are seeing some backsliding. Not just a few days. I'd say its been about a month now. He's got some very minor tics that have come up - a head shake that is only in the morning, or when he's very tired. And the "eating thing" is pretty much the same. He's maybe slightly less obsessed with it than before IVIG, but not much improvement in that area. We may have to do some intensive therapy to work on that one, but I really can't see doing that until I know his immune issues aren't going to bring it all back as soon as he gets the sniffles.

 

HIs attention and school stuff seem good, he isn't as irritable, but the one thing that is sort of a new thing for him is separation anxiety related sleep issues. His bedroom is down the end of the hall, next to DH office (and DH is usually in there til all hours unless he is travellng for work - which is often) The issue is his minor separtion anxiety makes him feel too far away to sleep if his Dad isn't in the office next to him. And even when he is, DS lays there worrying about when dad will leave that room to go to sleep.

 

He's always had some sleep issues with exacerbations - but I wouldn't say he's in an exacerbation. We are giving 1-2mg of melatonin at night, and in addition I've set up a mat on our floor that he can move to during the night. He wakes up and comes into our room almost every night between 4 and 6am for past 2 weeks.

 

Anyone else had this sort of symptom curve, or a child that just has "minor" sleep issues - although a few nights with little sleep is not really minor. He certainly isn't getting more than 7-8 hours a night. He falls asleep at 11:00-11:30, and is up for the day at 7:00, and is probably up for an hour during the night. Today he got up at 5:30 - woke us all and no one could fall back.

 

I'm not sure how much is the true insomnia, and how much is separation anxiety causing the insomnia. I thinks it could be a little of both. Its a bad combination!

 

SO thats our update - it could be better, it could be worse. Making appoint with immunologist today, just to check in maybe check some blood work and update his on DS. I'll let you know if he has an insights!

[butterflymom]

=

Edited October 5, 2015 by tampicc

[nicklemama]

We see that in our DS. He cannot fall asleep w/out one of us lying next to him.....even w/ melatonin. If he had no melatonin, we're talking a few hours to fall asleep. In my mind, our DS has some separation anxiety issues. They were severe w/ his initial exorcist presentation of PANDAS, but w/ abx and one round of IVIG, they are somewhat minor. He also gets up during the night and wants to get in our bed. Sometimes he does, sometimes we take him back to his own room. The going to sleep issue is always there having never waned. The night waking and getting in our bed waxes and wanes and it doesn't even seem to be in correspondence w/ illness.

 

We are currently trying to wean our DS off lamictal and the night waking has been waxing since.

[norcalmom]

I wonder if they are doing any sleep studies with the kids in the pandas trial. Anyone know? The waking in the middle of the night is killing me - because he can go back to sleep, but I can't! I just start worrying aboutt he lack of sleep, what is waking him, and how lack of sleep can make you crazy without having pandas, as well as effects his immune system - and I'm afraid he'll catch something.

[EAMom]

Hi Norcalmom,

 

Have you tried giving an Advil (or 2) at night?

 

I share your frustration re backsliding...dd11 had her 3rd HD IVIG in July. After 1 week of "turning back the pages" (including extreme irritability) she gradually improved. But, many OCD behaviors remained (doorway issues, certain worries). Then last weekend we noticed a dramatic increase in vocal tics, correlating with sister dd8 getting a virus (fever, sore throat cough). So far dd11 hasn't gotten sick from the virus (like dd8 who missed a week of school) but is still ticcing away. That is such a source of frustration, to see exacerbations not just with strep, but with viral illnesses, and not just when she gets sick herself, but when her sister gets sick.

 

We've started 500mg/day of NAC about a month ago, not sure if it is doing anything, but realistically we should probably be giving 1000mg 2x daily.

[EAMom]

We are currently trying to wean our DS off lamictal and the night waking has been waxing since.

 

Hi Nickemama,

have you tried adding in NAC (or other glutamate modulators?). Since lamictal is supposed to modulate glutamate, and you are weaning off lamictal, I wonder if replacing it with another modulator (eg NAC) might help?

[nicklemama]

Norcal Mom- I hear you. My DS goes right back to sleep but, like you, I don't and it is killing me, too.

 

EAMom- The lamictal never had any effect on his sleep issues. He's been night waking since this whole PANDAS thing started and its been near 3yrs now. He was on 100mg of lamictal for 14 months and we saw no changes. The only thing that helped was IVIG. He went about 5 wks sleeping in his own bed and not waking. He had some sort of minor illness in early Aug w/ fever(neg cultures and titers) and then we started the lamictal wean and now he's back to night waking.

 

He shows a pattern after the next step down. Three days after reduction, he gets irritible and starts the night waking. After about 3-4 days of irritibility, it slowly subsides, as does the night waking. Then, unfortunately, its time to lower the dose again and it starts all over. However, this time, the irritibility lasted 1.5wks. We are going to increase the time between dosage decreases to let him get back to his post IVIG baseline for a while longer before the next decrease and see how that works.

 

I'm not really certain what NAC is. I'll google it. Thanks for the suggestion.

Edited September 18, 2011 by nicklemama

[EAMom]

I'm not really certain what NAC is. I'll google it. Thanks for the suggestion.

 

Here's a review article on NAC

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/

 

And a nice article from the OCD foundation http://www.ocfoundation.org/glutamate.aspx on Glutamate (NAC is discussed. Here's a paragraph.

 

There is also some limited evidence suggesting that a third medication - N-acetylcysteine or NAC - also has benefit in the treatment of OCD. NAC is available without a prescription. It is an antioxidant and is used in cases of acetaminophen (Tylenol®) overdose to protect the liver from damage. However, animal studies by researchers at the Medical University of South Carolina have found that NAC can affect levels of brain glutamate as well. We worked with a patient with OCD who improved significantly after we added NAC to her existing medications. Unpublished clinical experience, from our group and elsewhere, further suggests that the agent may be of benefit in at least some patients with OCD. Well-controlled studies have shown benefit from NAC in a variety of other disorders of compulsive and impulsive behaviors including pathological gambling, Trichotillomania, and drug craving. Because it is inexpensive, has no significant side effects, and is available over-the-counter, this drug is a potentially attractive therapeutic option, though the evidence for benefit in OCD remains extremely thin.

[nicklemama]

Thanks EAMom!

[eljomom]

This part was interesting: "The reductions in inflammatory cytokines by NAC treatment may be a potential mechanism by which NAC modulates the symptoms of psychiatric disorders. This may be directly associated with the inflammatory pathway, or working through oxidative processes associated with inflammation. Further research is required to elucidate these mechanisms." Sounds Pandas-y, doesn't it??? I thought the inflammatory cytokines are what elevates Cam K....

[lfran]

I spent years not being able to return to sleep once I was awakened. Turned out I was hypothyroid, which can really mess with your sleeping. When I got that adjusted, I was able to a) sleep through the night and return to sleep once awakened, even if up to help a child.

 

It's an easy test, and easy to "fix". It is very common in women post-childbearing. Getting that addressed changed my life. The "standard" ranges of up to 4.0 as being normal are not accepted by many specialists, who consider up to 2.0 to be normal and over 2.0 as potentially requiring treatment.

 

Just a thought, to help other sleep-deprived moms.

 

Norcal Mom- I hear you. My DS goes right back to sleep but, like you, I don't and it is killing me, too.

 

EAMom- The lamictal never had any effect on his sleep issues. He's been night waking since this whole PANDAS thing started and its been near 3yrs now. He was on 100mg of lamictal for 14 months and we saw no changes. The only thing that helped was IVIG. He went about 5 wks sleeping in his own bed and not waking. He had some sort of minor illness in early Aug w/ fever(neg cultures and titers) and then we started the lamictal wean and now he's back to night waking.

 

He shows a pattern after the next step down. Three days after reduction, he gets irritible and starts the night waking. After about 3-4 days of irritibility, it slowly subsides, as does the night waking. Then, unfortunately, its time to lower the dose again and it starts all over. However, this time, the irritibility lasted 1.5wks. We are going to increase the time between dosage decreases to let him get back to his post IVIG baseline for a while longer before the next decrease and see how that works.

 

I'm not really certain what NAC is. I'll google it. Thanks for the suggestion.

[norcalmom]

Thanks for all the replies.

 

YES - the 2nd advil works pretty well! I just am afraid of so much Advil. Some recent days I've done 2-3 advils and only one does of Azith. Frankly, not sure the azith does anything anymore - but my son says he can tell if he doesn't take it and feels off. I want to switch to Doxy (we did this for a while last year when we started to consider Lyme) but he had really bad reaction to the sun. He plays baseball, so can't avoid the sun. I'm waiting for December and rainy season to start to do a longer period of Doxy. When we did this before, he started to tic, just for a couple days, and it looked like he might be "herxing" from something. ITs was weird - he was not exacerbating. I want to have Dr Mcghee measure his MycoP titers to see if there has been any movement in his (IGG super high, no IgM last time...disagreement among experts as to what that means, but Doxy is antiB. of choice for that one)

 

Ifran - I've been tested two or three time with various blood tests for thyroid dysfunction (one time by a cardiologist because I have weird arrythmia), but the tests are negative. I did not know it could cause sleep issues. I'll keep an eye on it, but I think this round of sleeplessness is caused by pure worry. I've started ot learn to go back to sleep now. My son has now established a fairly standard pattern of coming into our room every night (where we now have a mattress topper, comforter and pillow on the floor for him). We've told him he can come in if he doesn't wake us up, and he's quite, but I still hear him (I should od like my husband, who started to sleep with earplugs when we had infants!!) And since my son can't stand stand to hear me make noise with my throat or mouth - we now have HIM sleep with earplugs in our room when he comes in so that he can better resist the urge to tell me to stop (thereby waking me up!)

 

I've not tried NAC - but I've had a bottle of it in the cabinet for months!

 

EAMOM - I tried to PM you about a week ago when I read on a post that you went in for you 3rd IVIG (your mailbox was full), and used Dr McGhee .Sorry to hear she is exacerbating again. Her pitands and low iron, and her pattern of slowly increasing baseline over time, are just like ours. I hope your IVIG went well, and she is on her way back. I hope to see a post from you to that effect in a few weeks/months! Nice to have Dr McG here isn't it?