Yeast die off reaction or something else?

[bronxmom2]

We are on day 11 or 12 of azith and today his emotional state (meltdowns and rages) was so bad I had to keep him home from school. The azith is definitely making this worse, although in some other things he seems better.

 

I had to drive some other kids to the school and when I came home he was standing in the window bawling because the garbage men were taking away our old coffee table. 10 minutes of uncontrolled sobbing over coffee table.

 

OK, so if this is actually some weird sign of the brain inflammation being addressed, I can wait it out, but it has me very worried

 

I fear we are also one of the "difficult cases"-- this has been going on for years.

[peglem]

Hi Dawn:

 

I am wondering what Dr. K classifies as "difficult cases?" Did he tell you if he meant rages or chorea movements or tics or OCD? Just curious??

 

Elizabeth

 

Elizabeth,

 

Our 10 1/2 yo son's case of PANDAS has been a journey to search for the missing puzzle piece. No explosive, night & day onset.

Just a lifetime of alphabet diagnoses and attempts to treat the problems, only to get nowhere. He was dx'd with PANDAS in 11/08. At that time he was presenting with rages/tantrums/destructive/aggressive behavior, separation anxiety, labile emotions OCD-more in the perseverative thinking (stuck),tics, some choreiform mvt in fingers, regressive behaviors, very high titers--a little bit of everything! Migraines started at 3 1/2, repleat with the vomiting. (We think strep, now.) With his birth to present medical history in hand (lots of infections that presented like strep, but never a culture. Evan probably blew half his medicine out his mouth!), and with the knowledge that we distinctly remember starting to have "issues" with him by 21 mo, we believe that the PANDAS thing started a long time ago. Four docs have said PANDAS. Because he has had it so long the saw-tooth patterns of waxing & waning have been as if you stacked one pattern on top of another-pretty soon you don't have a clear pattern. Evan's mycoplasma pneumoniae IgG was very high. Can't remember the last time he had an illness that could have been caused by this bug. Dr. K says that so many of the kids he checks with the rage/aggression/destructiveness have this elevated, too. Whew--so to take a stab at your question, I believe what makes this a difficult case is it's "chronic nature, and that we don't know how much is strictly PANDAS. Also, the steroid burst did not give us "Ta-Da!" results. Too short, too much of a jolt to begin, too abrupt stop. He had about 2 1/2 good days out of the 5. I think Latimer's prednisone schedule would have been more helpful in Evan's case. He is currently on 250mg azith/day and Risperdal 1mg 2x/day. Every psych drug we have tried has failed. (Penicillin, even injections ,wouldn't eradicate the strep.) Risperdal has worked the best, but not all that well. About as well as Dr. K said it would. His CaM was 184%, but this was with him on azith. OK, a long answer to a short question. Fire away with more questions. There are alot of "holes" in the hx I just gave.

 

Dawn

 

I will be VERY interested in IVIG outcome for you. My daughter has almost exactly the same history and at this point we don't know how much of her difficulties are PANDAS related and how much, if any, is something else. She went undiagnosed (for PANDAS anyway) for so long and problems started so young. Risperdal worked for a few months, then seemed to make things worse.

[Iowamom]

Hi Dawn:

 

I am wondering what Dr. K classifies as "difficult cases?" Did he tell you if he meant rages or chorea movements or tics or OCD? Just curious??

 

Elizabeth[/quo

Elizabeth,

 

Our 10 1/2 yo son's case of PANDAS has been a journey to search for the missing puzzle piece. No explosive, night & day onset.

Just a lifetime of alphabet diagnoses and attempts to treat the problems, only to get nowhere. He was dx'd with PANDAS in 11/08. At that time he was presenting with rages/tantrums/destructive/aggressive behavior, separation anxiety, labile emotions OCD-more in the perseverative thinking (stuck),tics, some choreiform mvt in fingers, regressive behaviors, very high titers--a little bit of everything! Migraines started at 3 1/2, repleat with the vomiting. (We think strep, now.) With his birth to present medical history in hand (lots of infections that presented like strep, but never a culture. Evan probably blew half his medicine out his mouth!), and with the knowledge that we distinctly remember starting to have "issues" with him by 21 mo, we believe that the PANDAS thing started a long time ago. Four docs have said PANDAS. Because he has had it so long the saw-tooth patterns of waxing & waning have been as if you stacked one pattern on top of another-pretty soon you don't have a clear pattern. Evan's mycoplasma pneumoniae IgG was very high. Can't remember the last time he had an illness that could have been caused by this bug. Dr. K says that so many of the kids he checks with the rage/aggression/destructiveness have this elevated, too. Whew--so to take a stab at your question, I believe what makes this a difficult case is it's "chronic nature, and that we don't know how much is strictly PANDAS. Also, the steroid burst did not give us "Ta-Da!" results. Too short, too much of a jolt to begin, too abrupt stop. He had about 2 1/2 good days out of the 5. I think Latimer's prednisone schedule would have been more helpful in Evan's case. He is currently on 250mg azith/day and Risperdal 1mg 2x/day. Every psych drug we have tried has failed. (Penicillin, even injections ,wouldn't eradicate the strep.) Risperdal has worked the best, but not all that well. About as well as Dr. K said it would. His CaM was 184%, but this was with him on azith. OK, a long answer to a short question. Fire away with more questions. There are alot of "holes" in the hx I just gave.

 

Dawn

 

I will be VERY interested in IVIG outcome for you. My daughter has almost exactly the same history and at this point we don't know how much of her difficulties are PANDAS related and how much, if any, is something else. She went undiagnosed (for PANDAS anyway) for so long and problems started so young. Risperdal worked for a few months, then seemed to make things worse.

 

Elizabeth,

 

I'd like to keep in touch! Risperdal--can't say it was working much today. He went from totally composed to flipping out, to bolting and standing in the middle of the street as vehicles (and buses) came toward him!! Ugh!!!!!! We see the kiddie psych tomorrow for a follow-up. Keep trying to get a hold of Dr K. It's always been difficult getting a hold of this guy. I want a date!

 

Our son is the most normal, compassionate, creative, neat kid when he is "of sound mind". I have ALWAYS said, like the nursery rhyme: When he is good, he is very, very, good. And when he is bad, he is horrid!! No other way that best descibes him.

 

How old is your daughter?

 

I'm not opposed to email, if that would be easier.

 

Dawn

[smartyjones]

 

monarchcat - how is your son doing now?

 

when my son starting having symptoms last fall, i was actually investigating yeast as the culprit. i discussed this with the behavior therapist we were consulting who suggested PANDAS instead. we had his blood drawn and ASO was 898. a throat culture was positive. our ped at the time threw him on azith for 5 days more as a perfunctory course than trying to heal him - i think it was as CYA b/c we'd been there many times in the fall and they kept just shrugging their shoulders and looking at me as if i were crazy.

 

he was terrible on azith and for about 5 days after. all troublesome behaviors were there with a vengenance and extremly clingy.

 

we switched ped, the new one put him on keflex and a sinus CT showed all sinus cavities with infection. after 3 days on keflex he was back to pre-PANDAS self. he was also on nystatin as a precaution. he was great for 35 days of abx + 5 weeks. he then got a cold and behaviors returned but not so bad. he's okay now but not pre-PANDAS self.

 

i now think it's all been PANDAS and strep. i'm unsure about the role of yeast.

 

i don't know much about the difference in antibiotics and what is better for what. i know many people here see good results with azith. i'd have to do much research to EVER put him on azith again.

 

~Kathy

[monarchcat]

Thank you guys SO MUCH for all your responses. This board has become such a great source of support and information. My son is now at 1 week on the azith and we definitely see changes, some good, some bad. I think he's definitely ticcing less. The behavior is up and down, though. Sometimes he's very volatile and irritable, but yet he's been doing things the last couple days that are new, like getting up, getting dressed and brushing his teeth by himself before he comes downstairs in the mornings.

 

So I guess we just ride this out for now and keep an eye on things!

 

monarchcat - how is your son doing now?

 

when my son starting having symptoms last fall, i was actually investigating yeast as the culprit. i discussed this with the behavior therapist we were consulting who suggested PANDAS instead. we had his blood drawn and ASO was 898. a throat culture was positive. our ped at the time threw him on azith for 5 days more as a perfunctory course than trying to heal him - i think it was as CYA b/c we'd been there many times in the fall and they kept just shrugging their shoulders and looking at me as if i were crazy.

 

he was terrible on azith and for about 5 days after. all troublesome behaviors were there with a vengenance and extremly clingy.

 

we switched ped, the new one put him on keflex and a sinus CT showed all sinus cavities with infection. after 3 days on keflex he was back to pre-PANDAS self. he was also on nystatin as a precaution. he was great for 35 days of abx + 5 weeks. he then got a cold and behaviors returned but not so bad. he's okay now but not pre-PANDAS self.

 

i now think it's all been PANDAS and strep. i'm unsure about the role of yeast.

 

i don't know much about the difference in antibiotics and what is better for what. i know many people here see good results with azith. i'd have to do much research to EVER put him on azith again.

 

~Kathy

[Suzan]

My dd was in the hospital over the weekend and had to get her appendix out. She was already on zith for her PANDAS and in the hospital she was bombarded with antibiotics too. It really messed with her gut and now she's an emotional wreck. I am wondering if it is the yeast overgrowth doing it to her.

 

I hope things are going better at your house!

 

Susan

[NancyD]

Oh Susan, I'm so sorry...it's always something, isn't it! Yes, this really sounds like it may be yeast that is aggravating her. That's why my daughter can't take zith and some of the other stronger antibiotics. I give her Milk Thistle (3x daily), which is an antioxidant and anti-inflammatory and helps with yeast. There are very few, if any, side effects. You may also need an anti-fungal for a brief period.

 

Nancy

 

My dd was in the hospital over the weekend and had to get her appendix out. She was already on zith for her PANDAS and in the hospital she was bombarded with antibiotics too. It really messed with her gut and now she's an emotional wreck. I am wondering if it is the yeast overgrowth doing it to her.

 

I hope things are going better at your house!

 

Susan

[dcmom]

Suzan-

 

I am sorry. That must have been so hard for you and your daughter!

 

One thing I wanted to add, for you to keep in mind.

 

My pandas daughter was at 99% improved this summer, when we had her tonsils out. Exactly one week after surgery, she woke up in a full pandas episode.

 

I feel she was either exposed to strep during surgery, or the anasthesia and the physical stress of surgery brought about the episode. (Maybe by opening the blood brain barrier?)

 

Anyway- I am not an expert, but as a mom- keep in mind, if it is not a yeast issue, that the surgery could possibly cause a flare up of symptoms...

 

Wishing you to be healing soon...

 

Eileen

[Suzan]

Suzan-

 

I am sorry. That must have been so hard for you and your daughter!

 

One thing I wanted to add, for you to keep in mind.

 

My pandas daughter was at 99% improved this summer, when we had her tonsils out. Exactly one week after surgery, she woke up in a full pandas episode.

 

I feel she was either exposed to strep during surgery, or the anasthesia and the physical stress of surgery brought about the episode. (Maybe by opening the blood brain barrier?)

 

Anyway- I am not an expert, but as a mom- keep in mind, if it is not a yeast issue, that the surgery could possibly cause a flare up of symptoms...

 

Wishing you to be healing soon...

 

Eileen

 

Eileen, Thank you for this perspective as well. It does feel PANDAS for sure. I'm afraid to wake her up again in the mornings for fear of her reactions and I'm finding myself crying a lot more out of frustrations. I will work on the yeast but also look out for this too although I guess there is nothing to do but wait if it is PANDAS flare up. Diana told me about this in relation to a cavity that she needs filled and I was totally worried about her having surgery but we had to do it. Did her episode last as long as it might if she had strep?

 

Susan

[Suzan]

Oh Susan, I'm so sorry...it's always something, isn't it! Yes, this really sounds like it may be yeast that is aggravating her. That's why my daughter can't take zith and some of the other stronger antibiotics. I give her Milk Thistle (3x daily), which is an antioxidant and anti-inflammatory and helps with yeast. There are very few, if any, side effects. You may also need an anti-fungal for a brief period.

Nancy

 

I do have some anti fungal left over from an earlier time. I'll ask her doc if we can use it now to see if it helps. She really has that demonic quality that makes me think PANDAS but I know it can be yeast too.

 

Susan

[dcmom]

Suzan- After the T&A was my daughter's second episode. I am sorry to say that it was similar to when she had strep. We did finally get it under control with a steroid burst about a month ago. Would steroids be an option for you?

[Suzan]

Suzan- After the T&A was my daughter's second episode. I am sorry to say that it was similar to when she had strep. We did finally get it under control with a steroid burst about a month ago. Would steroids be an option for you?

 

I'm not sure, I better get my ducks in a row about it before I go to the doctor. We see our Ped tomorrow but for my other daughter. I can talk to him about it, I know he is not up to speed on steriod burst but maybe her neurologist is. For now, I'm also keeping her on the zith. I better go back and read this post about the probiotics that don't get killed by the antibiotics.

 

Susan

[dcmom]

Suzan-

 

Have you had the Cunningham bloodwork done?

 

If your ped is receptive, maybe he could have a phone consult with dr Latimer, to ease any concerns he has about treating with steroids. She is a highly regarded neurologist affiliated with Georgetown University Hospital. She does like to see the Cunningham results, and a history of symptoms. So, if you had that together for your ped when he talked to her it may help. She is extremely compassionate. The steroid burst is no big deal. It is two weeks of a full strenght treatment dose, then two weeks of tapering off. We saw results in a few days. They lasted for 10 days, now we are not sure what direction she is going...

 

Good luck, and hang in there!