More rage and anxiety with azithromycin/tips for travel rage handle

[xh1688]

Hi parents,

My DS 14 had "abnormal" IgG P41 and IgG P39 with LabCorp, but negative IgM with IGenex. Our LLND put him on Azithromycin for three weeks as provocation protocol and repeat IgM.

I notice increased OCD, rage and anxiety. He even has more brain fog symptom. He said he is "Mad" most of the day. He complained that his finger hurt, teeth hurt, bone hurt.... He even asked to see his pediatrician and dentist. When he heard a new place we will go, he always thinks there is a restroom there although it is not (Post office, a park ...). He constantly asked "go to restroom" at the places although I told him 1000 times "there is no restroom there". He frequently asked restroom EVERWHERE. He had outburst with hitting, jumping and screaming 3--4 times a week. He seems easier to get anxiety than before.

What does this mean? My LLND said she wanted Azithromycin makes "die-off" to his body. Is this die-off or a sign it is not a correct antibiotic for him?

He has done three weeks Azithromycin and did blood draw. We are waiting for the lab results so he is not on any antibiotic. Our family is going to Disneyland two days later. Please share if any oil can temporarily help for rage and anxiety. He also is ASD.

Any advices/ sharing will be greatly appreciated!

 

[HopeinHIM]

DS 13 raged for some time.  WE treated for Bart even though IGenx said nothing.  WE used Amox/Azith and Bactrim  6 months.  Rages stopped finally BUT two years of no school and post viral chronic fatigue.  BUT who the heck really knows!! The most recent Immune doc says it was all due to Dysbioses from way too much antibiotics.  I am NOT sure. I think the Bart cocktail did something to stop the rages that's for sure.

To treat gut we then used Tinizidol (amazing drug) and dyflucan in short cycles apart from each other and began to heal the gut.  Organic urine test helped us find the correct pro biotics and we removed all inflammation foods  (Gluten/dairy/soy). THIS WAS HUGE HELP!!!  Very hard at first but after a few months he claimed his brain calmed down. Immunologist believes that there is NO one organic issue but multiple.

I suggest working on his diet (clean water, food and low trigger foods) That's if you are not already .  Get him going to bathroom twice a day, good sleep and add a few anti yeast herbs perhaps. WE also removed Video games (more difficulty) but it also helped calm his brain once he slowed down on playing.

 As far as traveling anxieties that's tuff bc his OCD is thru the roof it seems. I packed pillows and blankets and fun snacks always on car rides to make the stressful car rides pleasant. Try for short successful outings so that his mind begins to trust the rides. Have the car rides end with a positive always .  Perhaps go the surgical supply store and get a portable urinal for car to assist in need to go to BR. There is no logic or reasoning around OCD so its gonna take time til his anxiety drops. I am NOT going to say skip Disney but I will say that it is loaded with possible anxiety triggers.  My son would rather walk thru a room full of glass than go to an amusement park when he was escalated.  That's hard  to say bc you may have good reason to go with the family and we mom's with PANS kids strive for NORMAL times so much. Not easy decision. 

Wish I could suggest an  essential  oil to be the panacea for his nervous system.  All of the above helped calm our son's nerves "slowly" .  You can try Chinese skull cap and or  passion flower and also Pasque  flower all in tincture form.  Try one at a time starting out slow so as to not exacerbate. God Bless and hang in there!!!! :}      

[SuzanneR]

Our daughter also did a provoked test. She experienced similar behavior while on the antibiotics and after she went off them. The antibiotics are stirring up the infection (exactly what they need to do so that the lab test finds what you need) which is making your child uncomfortable and likely hurting a bit. The need to frequently urinate is a symptom of PANS/PANDAS.  He really feels like he has to urinate all the time. Our doctor recommended we add in something to help our child's brain detox during this time. It's a product called Drainage-Tone by Energetix. We also added some l-theanine for calming. Both did seem to help. 

For calming oils, you can try lavender, vetiver, clary sage, ylang ylang, and a blend by doTerra called Balance. You might also want to add in some citrus oils (lemon, orange, bergamot) or vanilla to help lift his mood. 

Finally, before we started treatment we tried using a product to help calm my child's anxieties, which had escalated along with her increased OCD symptoms. It's called TouchPoints Buzzies. They are a pair of clip on things no bigger than a watch that buzz. They help the brain produce neurotransmitters and calm the person wearing them. They have been a huge help for us. You can find them online.

Good luck on your trip. We just got back from Hawaii with our daughter and it was very challenging for her.  We took the Buzzies, the oils (vetiver works best for her) and her supplements and tried to give her lots of breaks in the hotel room. A written schedule helped her stay calmer. Ear plugs might help your child block out the noise of the park. Hope all this helps. 

[SuzanneR]

I just read an article that might be of help to you. 

http://goodbyelyme.com/stop_bartonella_rage_ocd

it talks about how Bartonella infection can result in PANS like symptoms, particularly rage, OCD behavior. It sounds like your son (and my daughter). It also talks about specific Chinese herbs that might address it. Check it out. 

[xh1688]

Thank you so much HopeinHIM  and SuzanneR! We just returned from vacation and my son was fine inoverall except more difficult sleeping.

His repeated IgM from Igenex back to negative after three weeks Azithromycin. I understand that some patients had negative result IgM at first test but positive after provocation.

I'm lost! What does this mean? He may have no Lyme but his symptoms triggered by other infections? Is it possible that he may have Bartonella or other co-infection when he have no Lyme? (Not good question but really want to know. He has not tested for Bartonella yet. SuzanneR thank you for the article!)

Please help!

Thank you so much!

[4Nikki]

The first thing we found to help DD reduce her intense rage symptoms was her diet. No sugar and gluten. Then antibiotics, then ibuprofen, then the big helper advil cold and sinus. But what helps depends on the Cunningham panel result. In DD's case benadryl being a blocker helped reduced the rage symptoms right away but the rage came back more intense after.  The phuseudo in the advil cold and sinus with the ibprophen helped with the inflamation clearing up the overload in her basil ganglia. 

You have to have the tests to what's best, but it will take time. You can try benadryl and if some of the cause is allergy then is might be a good but if he's like DD and the rage is a result of a buildup causing a dam, then be prepared for more intense rage when it wares off. With dd it got us about 4-5 hours of relief from the rage but it was not worth in level of intense rage when it came back with longer duration. About 20-40 mins increased to much more than an hour very very exhausting.

1 thing is we carried benadryl for emergency when traveling and a nasil spray to stop seasures prescribed by an ER doctor because dear wife is a surgical nurse. Basically it would put her out if she went into an intense episode for safety. 

I also got a repelling harness and wrist bands with quick clips. DD was very receptive to wearing the harness so could easy restrain her hands if she was having a flare and would wear it. She went from breaking windows and doors to trying to bang the rage out of her brain by banging it out either hitting her brain through her face, crashing her head into anything or pulling her hair out. She tried breaking her hands in the door so restraining was absolutely necessary. The thing is you really need to learn techniques for blocking and restraining when dealing with rage. Blocking is always better than restraining. When you restraining they become more intense and combative. The way I explain it is. Its similar to a person panic from drowning and you are the rescue person. If you are in the way they can't see you and will pull you under to get air. So, similar to rage, they cannot see you, they don't know what's happening, they are in a server panic and want it to stop. I've had martial arts, wrestling, judo. I would recommend judo classes. Its all about techniques.

 

We have had the most success with Mitochondria support. Steroid blasts helped too.

 

 

 

[xh1688]

2 hours ago, 4Nikki said:

The first thing we found to help DD reduce her intense rage symptoms was her diet. No sugar and gluten. Then antibiotics, then ibuprofen, then the big helper advil cold and sinus. But what helps depends on the Cunningham panel result. In DD's case benadryl being a blocker helped reduced the rage symptoms right away but the rage came back more intense after.  The phuseudo in the advil cold and sinus with the ibprophen helped with the inflamation clearing up the overload in her basil ganglia. 

You have to have the tests to what's best, but it will take time. You can try benadryl and if some of the cause is allergy then is might be a good but if he's like DD and the rage is a result of a buildup causing a dam, then be prepared for more intense rage when it wares off. With dd it got us about 4-5 hours of relief from the rage but it was not worth in level of intense rage when it came back with longer duration. About 20-40 mins increased to much more than an hour very very exhausting.

1 thing is we carried benadryl for emergency when traveling and a nasil spray to stop seasures prescribed by an ER doctor because dear wife is a surgical nurse. Basically it would put her out if she went into an intense episode for safety. 

I also got a repelling harness and wrist bands with quick clips. DD was very receptive to wearing the harness so could easy restrain her hands if she was having a flare and would wear it. She went from breaking windows and doors to trying to bang the rage out of her brain by banging it out either hitting her brain through her face, crashing her head into anything or pulling her hair out. She tried breaking her hands in the door so restraining was absolutely necessary. The thing is you really need to learn techniques for blocking and restraining when dealing with rage. Blocking is always better than restraining. When you restraining they become more intense and combative. The way I explain it is. Its similar to a person panic from drowning and you are the rescue person. If you are in the way they can't see you and will pull you under to get air. So, similar to rage, they cannot see you, they don't know what's happening, they are in a server panic and want it to stop. I've had martial arts, wrestling, judo. I would recommend judo classes. Its all about techniques.

 

We have had the most success with Mitochondria support. Steroid blasts helped too.

 

 

 

Thanks for your sharing. Would you please explain more detail about Mitochondria support? Is it a supplement? Which brand are your using?

[4Nikki]

I don't really know the technical details of the mitocrandial system just the DD's pandas doc and her neurologist put her on mitochondrial support supplements.  Her pandas doc started with a very expensive brand called mitospectra. It seemed to help because her symptoms decreased from a scale of 1-10 from 10 down to 3 or 4. We have to adjust how much she given, too much or too little is not good. Tight on budget, I started getting the supplements to keep them handy. Coq10, l-carniitiine, Coenzyme etc. You can google the contents. DD's neurologist made adjustment with other supplements blood work results.  Dd rage has reduced to crying but her menstration can get it going for a few days. She's not cured but its way easier to deal with a crying child than one that is raging multiple times a day. I've Googled mitochondrial system but the explanations are a bit overwhelming for me to take in. Perhaps if I weren't so tied from the years of battling, I could absorb more.

 

http://m.courtagen.com/?url=http%3A%2F%2Fwww.courtagen.com%2Fphysicians-what-is-mitochondrial-disorders.htm&utm_referrer=#2783

Edited July 8, 2017 by 4Nikki