Please help! "Crazy" rage after stopping combo antibiotics.

[xh1688]

My DS 14 (Also ASD with language delay) started Azithromycin and Ceftin on July 23, 2017, added Rifampin August 13, 2017.

 

He did herx but we notice small changes.

Positive:

(1) Better sleeping, (sooner to fall asleep and didn’t wake up frequently).

(2) Rage slightly reduced in week 3—5.

(3) OCD slightly reduced in week 5.

(4) Speaks something new (never or seldom said before).

 

Negative:

(1) Started to yell loudly and make uncontrollable noise rather than using words in week 5 without reasons. Had more frequently outbursts and worst happened before bed time. (broke the switch and outlet on the wall by hitting and hit everyone who tried to touch him).

(2) More enuresis symptom. Complained his “finger/nail hurt” again.

 

My son got all negative lab results (blood test) for both Lyme (Only IgG P41 and IgG P39 “Present Abnormal”.) and Bartonella although he has obvious Bart symptoms and Bart rashes (purple stripes) on his body.  Our LLND didn’t want to continue providing the combo antibiotics without positive lab results. She wanted to do a urine test after a provocation protocol.  It needs to stop all three abx for four weeks, then

Day 1—Rocephin (shot)

Day 2—5 Suprax , doxycycline and Tindamax. (oral)

 

My son stopped antibiotics on 9/15, one week ago.

                     

(1) His rage immediately became double worse on the same day (uncontrollable hitting everything included me and screaming loud).

(2) Complained that he has headache and feel sick.

(3) OCD and difficult sleeping came back: Repeating the same routine over and over before bed time, constantly walked to my room and asked the same questions over and over before falling asleep and middle of the night. Took much longer to fall asleep and woke up very early.

(4) He got cold and has had runny nose, cough and headache for three days. (He was not easy to get cold in past years.)

(5) Continuing frequently ask for restroom every where.

 

He is VERY miserable and his rage sometimes is out of control! He has to grab and pinch my hands/fingers although I yelled “it is hurt”. Damaged the shutter, and switch on the wall. He hit me like hit furniture. I’m unable to handle it because he is taller and stronger than me. My broken heart has more pain than the bruises on my arms he hit!

 

We have worked with this clinic for six months and this is my son’s first combo antibiotics.(Spent too much time to do a lot of and repeated lab tests in first a few months)

 

The LLND has mentioned if my son showed quicker regression after stopping the combo abx, it is a sign of Bartonella. It the regression come slowly, it may be Lyme. She didn’t tell what is the sign if my son has both Lyme and Bartonella.

 

It looks like my son has obvious Bartonella. Should we continue the combo abx with switch one of them (I believed that my son didn’t respond well to Ceftin but ok with Zith and Rifampin?

 

I cannot image and really concern what will happen if his “near crazy” rage continue for FOUR weeks!

 

Any input/advices will be appreciated!

 

 

  

 

 

[bobh]

I am so sorry to hear of all the struggles you are having.

I can understand that your LLND (a naturopath?) will not want to continue without the positive IGenex tests.  But if you had a PANS/PANDAS doctor recognizing those symptoms as PANS, they could decide to continue on that basis.  Do you have access to a PANS literate medical health practitioner?

[4Nikki]

A couple of suggestions. Pay attention to his diet. Sugar exasperated dd's rage. Allergies played a role as well. In dd's case it is gluten. Benadryl worked to calm her down but the rage came back stronger. When we finally found a pandas doctor that understood the Cunningham panel numbers she said the reaction to benadryl was understand able. Dd needed to clear her Basal ganglia, benadryl is a blocker. This may not be the same for your son. DD never hit anyone intentionally. I would liken it to a drowning. Its a panic state, anyone around should understand the reaction. We used a climbing harness as a restraint to keep her from hitting her head or pulling her hair out. The belt loops work well with wrist straps and clips. Understand what a 51/50 is through your regional support. Get training. Im trainned in judo and know the holds. Wrestling is good to. Dd raged multiple times a day for four months. Broke windows, walls, doors. I changed the windows with unbreakable glass.