rage

[AmberM]

my 2 1/2 yr old has been completely off for the last week or so. We have been on zithro for almost 2 mos now and were seeing improvements but major yeast flares. Now all of a sudden, the rages, SIB's, and emotional lability are taking over our life. She has always been like a little ticking time bomb, but lately it's been so bad, we can barely leave the house. When we do leave the house, we pretty much just drive in the car but I don't dare take her out anywhere. When I picked her up from OT therapy today, her therapist just hugged me and looked like she was on the verge of tears. She said she really had no idea what to do.

 

Is this pretty common, even when on abx? Does this mean we need to change abx or try something totally different?

 

-Amber

[saidie10]

my 2 1/2 yr old has been completely off for the last week or so. We have been on zithro for almost 2 mos now and were seeing improvements but major yeast flares. Now all of a sudden, the rages, SIB's, and emotional lability are taking over our life. She has always been like a little ticking time bomb, but lately it's been so bad, we can barely leave the house. When we do leave the house, we pretty much just drive in the car but I don't dare take her out anywhere. When I picked her up from OT therapy today, her therapist just hugged me and looked like she was on the verge of tears. She said she really had no idea what to do.

 

Is this pretty common, even when on abx? Does this mean we need to change abx or try something totally different?

 

-Amber

 

I am so sad for you It is so hard to see your child in this situation that you know they can not control. I truly hope you see some improvement soon. Sending positive thoughts your way...you will get through this and so will she!

[Megs_Mom]

When we see a sudden and dramatic change, we assume that she is having an exacerbation. So if we are on a low dose of abx, we increase. If we were on a higher dose, we would switch or ADD another abx. We also add both Motrin & Benedryl for 3-4 days and this seems to help a lot. If it were dramatic, then we'd look at Prednisone, but we save that for a major emergency. If your OT is also seeing a dramatic change, then trust that this is not right & go back to your doc that understands PANDAS.

 

You'll get some good advice from other moms about probiotics, if you are not already using. We do abx in the am, then an Attune chocolate bar at lunch (the mint ones are awesome, and the milk chocolate crunch are quite good as well. Avoid the dark chocolate for a child - they will not comply!) Our daugher hates the taste of every probiotic we tried, so this has been a great addition.

 

Hope you see quick improvement. Our first episode was a 3.5, and I cannot imagine dealing with it at an earlier age!

[kimballot]

First - I am sorry to hear that you are dealing with this. You have been working hard to help your daughter, so this must be very frustrating.

 

I re read your original post, and you mentioned that these things were a probelm:

 

1. she spends the majority of the day running in circles and pacing around the same invisible track in our house.

2. extreme hyperactivity

3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work)

4. to get to those places, she insists we drive down certain streets or all heck breaks loose)

5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs)

6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it.

 

 

You may want to take a step back and see how she is doing in relation to these. Is she overall better or worse than this baseline that you started at?

 

You mention yeast as a problem - is she taking any antifungals? As others have mentioned, probiotics are important to help decrease the development of yeast, but we have found that my son needs diflucan in addition to probiotics.

 

Also, when the OT handed her off to you - did she have any suggestions on sensory things that you could do during this exacerbation? Things like deep preassure and joint compression? You may want to ask her about some of those calming things. They wil not cure the problem, but they may help with management in the short-run.

[bgbarnes]

my 2 1/2 yr old has been completely off for the last week or so. We have been on zithro for almost 2 mos now and were seeing improvements but major yeast flares. Now all of a sudden, the rages, SIB's, and emotional lability are taking over our life. She has always been like a little ticking time bomb, but lately it's been so bad, we can barely leave the house. When we do leave the house, we pretty much just drive in the car but I don't dare take her out anywhere. When I picked her up from OT therapy today, her therapist just hugged me and looked like she was on the verge of tears. She said she really had no idea what to do.

 

Is this pretty common, even when on abx? Does this mean we need to change abx or try something totally different?

 

-Amber

I am so sorry you are dealing with this, unfortunately we all know the pain you are going through- it will get better- just hold on and have faith!

Brandy

[sf_mom]

A friend of mine who is now treating her daughter for Lyme recently had a flair after changing antibiotics. The Dr. recommended they stop all antibiotics for 48 hours.... if they saw rapid improvement in behavior it is most likely Herxhiemer's Reaction due to die off. Their daughter did improve rapidly so they began antibiotic treatment again with the understanding things might be worse before they get better but THAT WAS A GOOD SIGN. You might try doing similar.

 

The Herxheimer Reaction - Feeling worse before feeling better

 

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

 

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

 

What Is The Herxheimer Reaction?

 

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

 

A Rose By Any Other Name

 

Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.

 

History

 

The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.

 

A Medical Example

 

The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.

 

For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and they even seem to find it gratifying to experience tangible evidence of bacterial elimination. “

Edited June 25, 2010 by SF Mom

[AmberM]

ok, I'm going to try the motrin today, I didn't even think to do that. I e-mailed our DAN! last night and he was pretty surprised at the sudden change. We have an appt set for the 5th but if things continue like this, I think I'll try and bump it up sooner.

 

We do use a lot of probiotics along with antifungals but I added some kyolic garlic a couple of days ago and I think she was probably having some die-off. But the whole reason I added the garlic was because her behaviors were worsening to begin with. So I think you're right, maybe we are in an exacerbation.

 

Ya, Audrey takes the term "the terrible two's" to a whole new level! It makes me crazy when I hear my friends complain about this age....... they have no idea!

-Amber

 

 

 

When we see a sudden and dramatic change, we assume that she is having an exacerbation. So if we are on a low dose of abx, we increase. If we were on a higher dose, we would switch or ADD another abx. We also add both Motrin & Benedryl for 3-4 days and this seems to help a lot. If it were dramatic, then we'd look at Prednisone, but we save that for a major emergency. If your OT is also seeing a dramatic change, then trust that this is not right & go back to your doc that understands PANDAS.

 

You'll get some good advice from other moms about probiotics, if you are not already using. We do abx in the am, then an Attune chocolate bar at lunch (the mint ones are awesome, and the milk chocolate crunch are quite good as well. Avoid the dark chocolate for a child - they will not comply!) Our daugher hates the taste of every probiotic we tried, so this has been a great addition.

 

Hope you see quick improvement. Our first episode was a 3.5, and I cannot imagine dealing with it at an earlier age!

[AmberM]

Hi Kim, it seems like we're back to our baseline. It's so crazy how quickly things can change. Audrey has been on prescription antifungals for the past 18mos.....we've rotated diflucan, ketoconazole, and nystatin. Yeast is just a major issue for us. She's even on the "feast without yeast diet" but it doesn't seem to be making a dent. I think she may need to do the biofilm protocol. We tried to do it about a year ago but the die-off was so insane that I stopped after a couple of weeks.

 

Her OT has us using a weighted vest several times a day. I also "steamroll" her with a medicine ball and she does headstands in her crib. I do a lot of squeezing and joint compressions but it's just never enough. Her sensory seeking is so bad that she will stuff gravel in her mouth and bite hard on it to try and get pressure in her jaw! I have to watch her like a hawk because I'm so worried about her teeth.

 

Thanks for the support

-Amber

 

 

First - I am sorry to hear that you are dealing with this. You have been working hard to help your daughter, so this must be very frustrating.

 

I re read your original post, and you mentioned that these things were a probelm:

 

1. she spends the majority of the day running in circles and pacing around the same invisible track in our house.

2. extreme hyperactivity

3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work)

4. to get to those places, she insists we drive down certain streets or all heck breaks loose)

5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs)

6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it.

 

 

You may want to take a step back and see how she is doing in relation to these. Is she overall better or worse than this baseline that you started at?

 

You mention yeast as a problem - is she taking any antifungals? As others have mentioned, probiotics are important to help decrease the development of yeast, but we have found that my son needs diflucan in addition to probiotics.

 

Also, when the OT handed her off to you - did she have any suggestions on sensory things that you could do during this exacerbation? Things like deep preassure and joint compression? You may want to ask her about some of those calming things. They wil not cure the problem, but they may help with management in the short-run.

[AmberM]

I think she is probably having some yeast die-off right now. I always underestimate how bad that gets. I'm feeling better after reading all these posts.........and getting some sleep last night. Set backs are just such a bummer. Thanks for posting the info.

-Amber

[Stephanie2]

Amber, we are kind of in the same place right now with our 2 year olds. I don't remember what I told you last, but here are some thoughts. When you added ketoconozole, do you think that clostridia (or any other bacteria) moved into it's place? I know that happens with my 5yo sometimes. Remember that bacteria can also cause OCD. Also, I had an appt with Scott yesterday and he told me to give some apple cider vinegar with ketoconozole b/c the acid will help to activate the keto (not true for diflucan). Also, does she have a virus or something that may be triggering the pandas behavior? It's not always strep...

 

My 2yo is a terrible mess right now. We are tapering off the steroid and his OCD (severe) seems to be coming back. I dont' know if his speech delay is a curse or a blessing with OCD! He just points at things and whines ALL DAY LONG. He tells me where to sit, what to eat, what DVD to play (and wants me to switch it 1000 times a day), etc...it literally never ends. Sometimes I just put my foot down and say "no!" to all this, but it just results in a tantrum/aggression or he just keeps on whining. I literally can't win when he has OCD and I can't get a darn thing accomplished!

 

Some other things that Scott recommends for the OCD (temporary measures, of course): ibuprofen, tryptophan, tenex. This is what I did today so that he would calm down and take a nap: 1 tsp ibuprofen, 500 mg tryptophan (increases seratonin which decreases OCD) and an herbal blend I get from Whole Foods called Calm Child (probably similar to Kid Calm). With that triple whammy he took a deep breath, let me rock him and went to sleep in his crib without crying.

 

If this isn't enough, now he needs a TRIPLE hernia correction (two inguinal and one abdominal) in a couple weeks. It will be just lovely to mess with his meds for several days. I don't know what kind of mess he will be in...ugh! I think I am headed for the fast-track to IVIG with this kid! For now my 5 yo is well-controlled with his 125mg of azith...THANK GOD!!!!!!

 

 

I think she is probably having some yeast die-off right now. I always underestimate how bad that gets. I'm feeling better after reading all these posts.........and getting some sleep last night. Set backs are just such a bummer. Thanks for posting the info.

-Amber

[dut]

Hi - bit of an aside but our really great pharmacist dude (who does loads of research and is into natural and nutrition etc) recommended amphotericin B (sp) for us, as his antifungal of choice. There are no known resistances (unlike diflucan which c. krusei is resistent to) and it stays within the gut and is well tolerated. He says he can compound it with FOS to make it palatable for small kids. We haven't tried it yet but intend to if, on re-test, we are still fighting yeast.....

[AmberM]

UGHHHH, Stephanie, I'm so sorry you're dealing with this too. It sounds like you're in a worse place than I am with this surgery coming. I think it's definitely possible clostridia kicked in because she seems to be doing a little better today. I gave her kyolic garlic along with culturrelle for the last 2 days. Kyolic garlic works well for both yeast and clostridia but it always causes horrible die-off here. I've used tryptophan in the past but Audrey had a bad reaction to it due to clostridia. I guess it can cause problems with ammonia buildup if clostridia is present. So now we are using clonidine...... I know it's not ideal but it helps and we don't have any side effects with it. I'm going to have to look for that Calm Child, thanks for the tip.

 

I really don't think she's having any virus issues, she's not acting sick....but who knows. Our kids sound so similar in their ocd stuff. Audrey has been bossing me around about t.v. shows, food, and just about everything else as well. It's a lovely age, isn't it.

 

I'm so sorry to hear about the upcoming surgery. Hopefully, that will relieve some of his discomfort and his behaviors will diminish. I sometimes wish there was a surgery that could remove PANDAS or autism. Yeah right...... that would be way too easy.

-Amber

[AmberM]

I've heard good things about ampho b as well. I don't think it's prescribed as much because it's really expensive. If it works though, it might be worth it. My insurance is charging me $300 a month for zithro!

 

 

Hi - bit of an aside but our really great pharmacist dude (who does loads of research and is into natural and nutrition etc) recommended amphotericin B (sp) for us, as his antifungal of choice. There are no known resistances (unlike diflucan which c. krusei is resistent to) and it stays within the gut and is well tolerated. He says he can compound it with FOS to make it palatable for small kids. We haven't tried it yet but intend to if, on re-test, we are still fighting yeast.....

[sf_mom]

I wanted to add that we saw rages in our 2 1/2 year old when his older brother was 'exposed' to strep this past winter. We have not seen a rage since the first week in Feb. He has been on azithromycin since last November. We just reran some lab work on him. Originally, deficient in 13 of 14 strep pneumo antibody titers (mostly <.3) NOW HE IS RESPONSIVE in 5 of his strep pneumo titers and some of them are over 3.0!!!! Go figure.... Its been a little more up and down for his twin sister and some of her labs are still pending. Their CaM was 148 (our little boy) and 157 (our little girl).

 

I'm consulting with Dr. K next week and suspect we will continue to remain in a holding pattern and not move forward with IVIG and retest everything in another 12 weeks.

Edited June 26, 2010 by SF Mom