Update on Nicholas-I lived on the other forum board

[abbe]

So since it would be impossible to tell my whole story again, well not impossible just difficult. My son who is 10 years old now came down with all his tic symptoms at his Halloween class party. For what ever reason and I can't go backwards . We ruled out Pandas because he never once had strep. However he did test for Mycoplasma but I didn't put him on antibiotics. We put him on Amoxicillan last week and it caused a super strange reaction on day 7. He had a weird anxiety attack, worrying, crying and then went to bed and woke up in a major state of confusion, big time. I was one step from taking him to the ER but spoke with Dr. Chung his Dr. and we decided to keep him in our room for the night and keep a close eye on him. He woke up like it never happened. So I don't know if it was an allergic reaction to the drug or it was the Herx. effect and he was detoxing. I guess I am just venting since we are taking him Friday to see Dr. Triffeleti and I am a little nervous about putting him on another antibiotic. Funny how worrying about tics is nothing like worrying about something that could be life threatening. Has anyone ever experienced a strange initial reaction on antibiotics???

 

 

 

thanks, have a nice day

 

Abbe

[nicklemama]

Yes. I would call it a herx. My Nicholas had an ear infection at age three. A few days after starting amoxi, he began to be very irritible and prone to tantrums. It was completely out of his character. I called his pedi and she told me to stop the amoxi, as he was having a rare side effect. She did not recommend other abx and told me the ear infection would clear on its own. I think this was a setting stage for what was to follow 2yrs later. He got over the ear infection and returned to his normal self for two years. I'd keep him on the amoxi until your appt w/ Dr T, unless you can clearly see a true allergic reaction or things get really bad.

[abbe]

Yes. I would call it a herx. My Nicholas had an ear infection at age three. A few days after starting amoxi, he began to be very irritible and prone to tantrums. It was completely out of his character. I called his pedi and she told me to stop the amoxi, as he was having a rare side effect. She did not recommend other abx and told me the ear infection would clear on its own. I think this was a setting stage for what was to follow 2yrs later. He got over the ear infection and returned to his normal self for two years. I'd keep him on the amoxi until your appt w/ Dr T, unless you can clearly see a true allergic reaction or things get really bad.

 

 

 

Thanks for your reply. I actually "chickened" out and took him off the next day. I feel its Mycoplasma with Nick but we will see...

 

abbe

[HT's Mom]

Yes. I would call it a herx. My Nicholas had an ear infection at age three. A few days after starting amoxi, he began to be very irritible and prone to tantrums. It was completely out of his character. I called his pedi and she told me to stop the amoxi, as he was having a rare side effect. She did not recommend other abx and told me the ear infection would clear on its own. I think this was a setting stage for what was to follow 2yrs later. He got over the ear infection and returned to his normal self for two years. I'd keep him on the amoxi until your appt w/ Dr T, unless you can clearly see a true allergic reaction or things get really bad.

 

 

 

Thanks for your reply. I actually "chickened" out and took him off the next day. I feel its Mycoplasma with Nick but we will see...

 

abbe

 

I just want to make sure you are clear that Mycoplasma is a known PANS infectious trigger. It is not just strep that can cause the syndrome. See the post about the new White Paper on PANS. Mycloplasma needs to be treated with antibiotics if your child is experiencing pans symptoms. I'm just posting this because you said "We ruled out Pandas because he never once had strep" and "it feels like Mycoplasma".

[nicklemama]

My DS has never once had strep either, that we know of. He was never tested for strep when he was actually sick. He's mycoP negative too. He still has PANS. I would also urge you to read the new "white paper" for the criteria for diagnosis.

[WorriedDADNMOM]

The only thing I would add to this is "never having strep" is almost impossible for kids. They are germ factory's with a super distribution highway. After reading all the stories and similarities--- I am of the belief that with our kiddos having an immune issue, strep goes undetected as can mycoplasma which was the case for our dd6 now 7 and dd 8. They both had amox for varios infection and strep. I believe both were never eradicated with the amox abx at 4-5 years old for ear infections or impetigo. Early on we all just assume the abx does the job. Then when all these issues start being evident in the form of tics, ocd, odd, adhd, twitching and chorea, it is hard to go back and figure it all out. I would wonder what you all think??? My main questions are which came first----chicken or the egg????

 

Strep caused the immune issue???? Immune issues then allowed subsequent infections (myco etc) to cause pandas and tics???? Vaccines caused immune issues thus the asymptomatic(untreated) or bad reaction to infections????

 

We have a phone consult with our Doc and we want to ask these questions. I am curious what the general belief or consensus is.

[MMC]

WorriedDADNMOM, I have all the same questions. I believe the underlying issue is a problem with the BBB in conjunction with anti-neuronal antibodies that are over produced by the immune system. We recently had a new work-up done by an immunologist just to review DS13's immune system. His immune system shows some low numbers, but he did mount a good response to the pneumovax vaccine they gave him, so it is working. The doc did not recommend anything other than getting him retested in 6 to 8 months to make sure his numbers were still good. I know vaccines are controversial, but we hesitantly allowed this...and he is now protected against various strains of pneumonia. He showed no side effects (as of yet)...and actually has shown some improvements since the vaccine back in early Nov...which may just be coincidence, not sure.

 

Anyway...I asked this doctor, who is a young, sharp immunologist at a major children's hospital in NC (not Duke) about the BBB. He said he has no way of testing the BBB, unless they were to do a spinal tap, and he did not encourage this. He had nothing to add as far as how the BBB plays into autoimmune diseases. I believe we have a long way to go in order to understand the BBB and how it relates to this type of disorder, and even more, how to treat it. There's not much out there that I have run across.

 

And I also wonder about DS13's strep. Is there some still hidden somewhere? Is it intracellular? How do we find it and kill it all? Because something is still causing tics, OCD, ADHD, brain fog, decreased math skills, etc. We did Lyme treatment for nine months and he was on various antibiotic cocktails...I was not sure if he had Lyme or not, but I wanted to throw the "works" at him in terms of antibiotics. It may have helped some, but he still has so many symptoms. Is still on 500 augmentin a day. He has had PANDAS for about 3 years now, strep definitely caused it in March 2009. His MycoP levels show past infections, but not current. He has had PEX once and this helped some, but symptoms came back after getting flue one month later. We are not opposed to doing PEX again, but that is a lot to go through, if relief is temporary. The BBB is still probably open and whateve bug is causing bad antibodies to slip into the basal ganglia and cause havoc. Hoping BBB will close as he gets older. Today's medicine does not know how to close or heal it. We may try homeopathic / naturopathic next to try and get some relief.

[tpotter]

Yes. I would call it a herx. My Nicholas had an ear infection at age three. A few days after starting amoxi, he began to be very irritible and prone to tantrums. It was completely out of his character. I called his pedi and she told me to stop the amoxi, as he was having a rare side effect. She did not recommend other abx and told me the ear infection would clear on its own. I think this was a setting stage for what was to follow 2yrs later. He got over the ear infection and returned to his normal self for two years. I'd keep him on the amoxi until your appt w/ Dr T, unless you can clearly see a true allergic reaction or things get really bad.

 

 

 

Thanks for your reply. I actually "chickened" out and took him off the next day. I feel its Mycoplasma with Nick but we will see...

 

abbe

 

 

Mycoplasma will definitely cause the symptoms you are describing. Furthermore, mycoP can be a co-infection of lyme. I was sick with mycoP for 3+ years, but never diagnosed until last year. It is very, very difficult to treat, and trust me...he will herx, especially if he's had it a long time. Azithromcyine is one of the primary drugs of choice for mycop, but there is a protocol that uses doxy and azith...both of which I am on. I definitely have herxed. It's been 1 1/2 years of treatment, and I am seeing a lyme specialist (LLMD) for the treatment protocol, because it involves using multiple abx simultaneously. Both my children were diagnosed with PANDAS, but now we know that there are several other infections as part of the whole package for them (I suspect their immune systems were so messed up between infection, immunizations, etc, that they just couldn't fight everything off. Personally, both are showing having been seriously exposed to mycoP (because of me, I'm sure), strep, lyme, bartonella,, viruses, etc.

 

But, I do think you need to be prepared for herxing. It's very tough, and if it's too strong of a herx, ask the dr to cut back, but unfortunately, herxing is a necessary evil. Many of us have found that detoxing really helps. We use bentonite clay and epsom salt baths in my house, other's use other products, but these help get the killed toxins out of the body. Just make certain that you space them sufficiently between taking other meds and supplements, or they will be washed out, too. Also, make sure you use plenty of good probiotics while on abx to protect the stomach.

 

Good luck.

[abbe]

Thank you, thank you thank you all

 

 

Just got back from Dr. T's. Exhausting day but very worthwhile. He is running a slew of bloodwork on my son and on my two older sons also. I will find out the results and then proceed forward. In the meantime he prescribed Zithro. since the bloodwork I did showed Mycoplasma past infection. I am hoping the antibiotics show me a good picture as to what is going on with him coupled with the blood work. I am aware of the clay, epson salts and use probiotics for my son. I also have introduced olive leaf.

 

 

Thanks again and I will post blood work results

 

 

abbe

[abbe]

My DS has never once had strep either, that we know of. He was never tested for strep when he was actually sick. He's mycoP negative too. He still has PANS. I would also urge you to read the new "white paper" for the criteria for diagnosis.

 

 

Where do I read the white paper?

 

abbe