Raging

[peglem]

If this doesn't work, we will be adding back the Ceflexin (sp) to see if that helps

 

My daughter is on prophilactic abx. Lamictal is famous for keeping people up at night. I give her evening dose early in the evening for this reason. Also give melatonin and valerian at bedtime. Even so, last week she had terrible issues with night waking...resolvd by increasing CLO.

 

Do you think the Lamictal is responsible for the nightmares or strep or something else? We got the chronic strep under control before we tried Lamictal.

 

Sure hope the field trip goes well for your daughter. The rages can be so much worse in a public place, the "normal" ways of dealing with them aren't available in those settings.

[Lacy]

If this doesn't work, we will be adding back the Ceflexin (sp) to see if that helps

 

My daughter is on prophilactic abx. Lamictal is famous for keeping people up at night. I give her evening dose early in the evening for this reason. Also give melatonin and valerian at bedtime. Even so, last week she had terrible issues with night waking...resolvd by increasing CLO.

 

Do you think the Lamictal is responsible for the nightmares or strep or something else? We got the chronic strep under control before we tried Lamictal.

 

Sure hope the field trip goes well for your daughter. The rages can be so much worse in a public place, the "normal" ways of dealing with them aren't available in those settings.

 

The nigtmares definitely appeared to be linked to the Lamictal. Since having split the dosage, they've decreased significantly. She's back to her normal routine of sleeping through the night. It's probably too early to know for sure that we're out of the woods with the nightmares though.

 

Sabrina doesn't appear to have strep the way she did. In fact, it's been a long time since she's had a positive test result. So it's possible that it's all still flying under the radar in the guise of the elevated (but not as high as it used to be) ASO/Titers levels. Those never really got into the 'normal' range.

 

We had a tough weekend - no major rages, but just a lot of defiance. Nothing we can't live with, but it gets tiresome after all the tug of war episodes. Luckily she did really great on the field trip - I'm not certain if we have the Lamictal to thank for that or not. I still haven't warmed up to the idea of having her on psychitropic meds.

 

Sabrina has an appointment with the psychiatrist in two weeks, followed by a first time visit with an immunologist. I'm certain she'll want to take blood. I don't know about all the other parents, but I absolutely loathe subjecting her to all of these blood tests. Poor thing. It breaks my heart that she's experiencing stuff that any "normal" kid wouldn't have to experience until much later in life. ((sigh))

 

I'll keep ya'll posted.

[melanie]

If this doesn't work, we will be adding back the Ceflexin (sp) to see if that helps

 

My daughter is on prophilactic abx. Lamictal is famous for keeping people up at night. I give her evening dose early in the evening for this reason. Also give melatonin and valerian at bedtime. Even so, last week she had terrible issues with night waking...resolvd by increasing CLO.

 

Do you think the Lamictal is responsible for the nightmares or strep or something else? We got the chronic strep under control before we tried Lamictal.

 

Sure hope the field trip goes well for your daughter. The rages can be so much worse in a public place, the "normal" ways of dealing with them aren't available in those settings.

 

The nigtmares definitely appeared to be linked to the Lamictal. Since having split the dosage, they've decreased significantly. She's back to her normal routine of sleeping through the night. It's probably too early to know for sure that we're out of the woods with the nightmares though.

 

Sabrina doesn't appear to have strep the way she did. In fact, it's been a long time since she's had a positive test result. So it's possible that it's all still flying under the radar in the guise of the elevated (but not as high as it used to be) ASO/Titers levels. Those never really got into the 'normal' range.

 

We had a tough weekend - no major rages, but just a lot of defiance. Nothing we can't live with, but it gets tiresome after all the tug of war episodes. Luckily she did really great on the field trip - I'm not certain if we have the Lamictal to thank for that or not. I still haven't warmed up to the idea of having her on psychitropic meds.

 

Sabrina has an appointment with the psychiatrist in two weeks, followed by a first time visit with an immunologist. I'm certain she'll want to take blood. I don't know about all the other parents, but I absolutely loathe subjecting her to all of these blood tests. Poor thing. It breaks my heart that she's experiencing stuff that any "normal" kid wouldn't have to experience until much later in life. ((sigh))

 

I'll keep ya'll posted.

 

 

My son tried lamictial got a rash and threw up we were told hes probably allergic we tried trileptial same results (simular drug)related somehow I dont think its a psychitropic good luck the dr will try another one

[EAMom]

Hi Lacy,

 

Elevated ASO isn't (likely) the problem. Read Buster's Jan 12 post... http://www.latitudes.org/forums/index.php?...art=#entry29305 He thinks the culprit is actually some other strep anti-body.

 

Your dd could have strep hiding out somewhere (sinuses, skin) even if throat culture is neg. She could also be reacting to a non-strep illness (viral etc).

 

If she's not on abs I would put her back on. If the Cephalexin doesn't work this time, try Azith.

 

We had lots of defiance when dd's PANDAS was in full force last year.

 

Have you tried Advil (motrin, ibuprofen)? We found this helps with sleep and mood.

[Lacy]

Hi Lacy,

 

Elevated ASO isn't (likely) the problem. Read Buster's Jan 12 post... http://www.latitudes.org/forums/index.php?...art=#entry29305 He thinks the culprit is actually some other strep anti-body.

 

Your dd could have strep hiding out somewhere (sinuses, skin) even if throat culture is neg. She could also be reacting to a non-strep illness (viral etc).

 

If she's not on abs I would put her back on. If the Cephalexin doesn't work this time, try Azith.

 

We had lots of defiance when dd's PANDAS was in full force last year.

 

Have you tried Advil (motrin, ibuprofen)? We found this helps with sleep and mood.

 

I wonder why that is about the OTC meds (Advil and such)?

 

She was on the abs for those 9 months (Sept 2007 to May 2008) and she did great. We decided to take her off the abs to give her body a break and also to see how she'd do off them. She did fantastic for 4 more months and then around Sept 2008 she just flat out tanked with her behavior. I noticed (coincidence or not) that this happened about two weeks after everyone around her got a flu-bug. Since then we've all been in an emotionalhell.

 

We are planning to put her back on the abs but I've been dragging my feet since she rebounded a little bit from the change in splitting her Lamictal. The main reasons for dragging my feet are: I hate to add to the medicine mix (1 med, 2x a day doubled), and then I also wonder what will happen if she mellowed back out and returned back to her "normal" cheery self - in regards to the doctor's responses. If that makes any sense. Ultimately, if things go South with her behavior (which feels inevitable), then I'll call in that refill of the abs.

[EAMom]

I think the Ibuprofen decreases brain inflamation (a little like how pred/steroid burst can help...but not quite as strong). We didn't find Aleve (Naproxen) to have this same effect, I don't know about other NSAIDS. The immunologist we just saw actually just recommended we re-start the Ibuprofen. (We were on for the months of June/July...but had stopped.)

[Lacy]

A quick update...

 

Just started little girl back on her antibiotics last night. Usually it takes at least a few days sometimes weeks to kick in - IF it will even work. Keep your fingers crossed! Meanwhile, she has an appoitment with an immunologist next week.

 

I tried contacting the doctor in Phili that was on that news bit (see thread: http://www.latitudes.org/forums/index.php?showtopic=4589) and was bummed out that she never responded. Then again I'm not sure whether or not I'm surprised.

[Indigo]

EAMom--do you give Advil for sleep as well? And have you found any dye free Advil?

[Indigo]

Lacy, would you send me the contact information for that doctor? Did you call or email? I am wondering if maybe she takes my insurance.

[chrisw]

I'm wondering why raging is not seen as a symptom of PANDAS and if most of your kiddos have raging...and what has helped! When I first read about PANDAS it was in Dr. Kenneth Bock's book and he describes rages in a child that were so similar to my dd's. That's what led me down this path to PANDAS...after being on anti's now for a couple of months...and trying prednisone, worked!, and now waiting for dd's second bloodwork, the raging and OCD are what remain. The raging is getting worse, again. It's scary, draining, exhausting, and I'm so upset today! The separation anxiety has not come back since we started anti's. But the needing everything to be the same all the time every day and if not questioning and worrying and questioning again...I guess this could be considered OCD? I'm feeling quite lost. What exactly is it in the brain that is causing the rage attacks and what do I do about them?

 

Oh, and what has changed this week is just that she has gone off of the diflucan for the 10 days off, she'll go back on on Wednesday...I hope this isn't contributing, but I don't know. The singulair could be contributing, too, not sure about that either. Some parents have said singulair works for PANDAS and I've read others say it causes mood changes...it seemed to work at first for dd but now I don't know if it is contributing to it or not.

Indigo,

I know that some parents have mentioned singulair on this forum and I hesitate to even bring this up because I think we all have enough to worry about, but I encourage PANDAS parents to be very careful about using singulair. My 9 yr. old son began taking singulair and zyrtec when he was about 4 for "asthma that presents as croup, ONLY with illness" and seasonal allergies. When he had his major explosion of symptoms in the fall of 2008 and before we finally figured out PANDAS (pos. strep with first appearance of tics plus other new symptoms) we took him off all allergy meds because of some research I had done on these meds. When we took him off both of these meds., I immediately noticed that he was much more even tempered. He had always been moody with many bouts of sadness and crying that would come out of nowhere. The other PANDAS symptoms stayed, but he has NEVER been moody (unexplained sadness, crying) since. This was before proph. abx. I really do feel that the allergy meds. were affecting his mood. Even with his anxiety, he is not SAD like he was before. I suggest if your PANDAS child is on singulair or zyrtec, you may want to look at side effects. It is amazing how these side effects mirror PANDAS symptoms (anxiety,depression,anger, aggression, etc. etc.). A good website to look at is www.parentsforsafety.org and www.patientsville.com. I hate to add any fuel to anyone's fire (thanks PANDAS) but I DO feel that it is good info. for those of us with these unique kids. Strangely, my son has hardly struggled with his allergies at all, even through the Spring weather here in Florida since he began taking abx. If he starts sneezing, we make him use a sinus rinse by Nelimed that we bought at Walmart for about $10. It is a squeeze bottle that you fill with warm water and a powder that comes with the kit. It is supposed to wash away pollens, viruses and bacteria that hang out in the sinus cavities. It does seem to work, at least for allergies. Anyway, just wanted to share that.

Christie

[EAMom]

We haven't given the Advil (Ibuprofen) specifically for sleep (not our biggest problem) but we've found it does help sleep. When we were giving it in the am (last spring/summer) dd would often fall asleep afterwards.

 

Now we're giving it in the evening (with her other meds).

 

Ibuprofen does come in a dye free form. We have a "walgreens" color and dye free 200mg bottle. I've also seen it dye free in the liquid version. To get dye free you might have to go generic (Walgreens). I'm not sure if Advil (name brand) makes a dye free version.

[Pezmom]

We haven't given the Advil (Ibuprofen) specifically for sleep (not our biggest problem) but we've found it does help sleep. When we were giving it in the am (last spring/summer) dd would often fall asleep afterwards.

 

Now we're giving it in the evening (with her other meds).

 

Ibuprofen does come in a dye free form. We have a "walgreens" color and dye free 200mg bottle. I've also seen it dye free in the liquid version. To get dye free you might have to go generic (Walgreens). I'm not sure if Advil (name brand) makes a dye free version.

 

 

You can also have Ibuprofin compounded with a prescription from your doc. Our son can't have corn in addition to several other things including artificial colors and flavors. I couldn't find any OTC pain med he could have and asked our pharmacy if they could compound some for him. It's been really helpful.