xh1688 Posted June 11, 2018 Report Share Posted June 11, 2018 (edited) Dear all, My DS 15 has Bart purple rashes on his body for since last year. He started Biaxin (replaced Azithromycin) nine weeks ago. 500 mg twice a day (continue with Rifampin). Since he had more aggressive and uncontrolled behavior, it was reduced to one Tab in the morning weeks alter as the recommendation from our LLND. His outburst was reduced, less OCD but took longer time to fall asleep. Starting from three weeks ago, he again had outburst 1-2 times per week. He hit the wall, counter, door and even hit me and his grandma uncontrollably. He shook his arms (new symptom), took his shirt off and dumped on the floor, threw his glasses, jumped, screamed and ran. He seems think about things in opposite way. (For example, he complained the food is cold when it is very hot. He said he is happy when he looks sad, or said he is sad when he actually is not). He may have an outburst suddenly with yelling. His repeating talking came back. He insisted to ask to “I want to go the shopping mall / piano lesson NOW” at bed time over and over although I responded him “tomorrow and Tuesday” multiple times. Two days ago, he even said he wants to put his glasses to the toilet and flush it. He took his watch off and dumped it somewhere, but he couldn’t remember. He also complained that his stomach “hurt” frequently. He had little watery stool for a few days until yesterday. His underwear again always has little watery stool (He did have this symptom before starting the treatment and got better when taking Rifampin combo with Azithromycin. It came back this time) His sleeping became obvious worse. I asked him to go to bed 10:00 –10:30 pm but he got up from the bed and walked to me asking “please take my watch off (on)/ I want to drink water (although I told him the water bottle in his bedroom and he knew) over and over. He cannot fall asleep until middle of the night and wake up at 5:00 to 6:00 am. Not sure if Biaxin did something negatively to him. But Rifampin (on 600mg) has been very helpful for him. 1. He seemed frozen for 10 seconds during piano playing or speech therapy and no response when I called him. Is it kind of seizure symptom? 2. He seemed better when was taking Rifampin combo with Azithromycin but LLND mentioned that antibiotics need to be changed every three months. My DH asked me to STOP all antibiotics immediately because he thinks these “drugs” caused his son “having illusion”. He said “He is now turning from a autistic patient into a mental patient. I suspect he is now having imaginations in his mind which trigger his recent behavior. This kind of behavior is showing him to have mental problem…” He concerned if my DS will have more aggressive behaviors when he grow up. I knew it is because of the infection and it needs to take time to be treated. But I don’t know how to persuade my stubborn husband that the boy needs to continue the treatment. 3. Can anyone share what will happen if take all antibiotics off when the infection is still there? I’m very miserable and feel hopeless. Any advices/sharing will be appreciated! Edited June 11, 2018 by xh1688 Link to comment Share on other sites More sharing options...
MaryAngela Posted June 13, 2018 Report Share Posted June 13, 2018 I am so sorry you are going through a crisis period. Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle. Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx. That summer my DS developed a yeast infection, and his symptoms escalated. He was out of his mind...hallucinations, new tics, aggression. For the past two years we have treated him for yeast. We use Gutpro, Saccharomyces Boulardii, and Candicid Forte. We have also tried rx yeast treatments (Nystatin). Had a scary experience with Diflucan, though. Currently my DS is not on abx. When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off. He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months. Sanda967 1 Link to comment Share on other sites More sharing options...
bobh Posted June 13, 2018 Report Share Posted June 13, 2018 Very sorry about the terrible difficulties. I would second the idea that a yeast infection could be at least partly responsible for new symptoms when on abx. However, I would be very cautious about adding probiotics. Even though abx harms good gut bacteria, lots of kids have been made worse by probiotics. Whatever you do, try as best as you can, to make one change at a time - so you can be more sure of what makes him better or worse. There are some people that have improved by stopping all meds and supplements at once. They won't know what was causing the problem, but it is a strategy that has worked in rare cases. Link to comment Share on other sites More sharing options...
bws1565 Posted June 13, 2018 Report Share Posted June 13, 2018 Others have provided some responses, but I would like to offer some input on the freeze while playing piano. Freezing while doing something can be classified as absence seizures. While usually pediatric in nature and outgrown, there is a similar symptom from Bartonella. So if your son is diagnosed with bartonella, this might be something triggered by that. Sanda967 1 Link to comment Share on other sites More sharing options...
bobh Posted June 14, 2018 Report Share Posted June 14, 2018 Our son also had brief "absence seizures" at the beginning. We eventually tested for lyme, bart, babesia and others, but only ever found ehrlichiosis (another tick-borne infection). Sanda967 1 Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now