Fixit Posted September 13, 2010 Author Report Share Posted September 13, 2010 Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper. Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts Link to comment Share on other sites More sharing options...
Betty04 Posted September 13, 2010 Report Share Posted September 13, 2010 Fixit- I hope the consult offers some relief. I am not sure this is helpful but my dan doc told me that if vancomycin is helpful then you never want to just stop it bc you will likely relapse. Vancomycin needs to be slowly tapered off - my doc tapers the full treatment dose slowly down over several months. Hope today get better! Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper. Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts Link to comment Share on other sites More sharing options...
PhillyPA Posted September 13, 2010 Report Share Posted September 13, 2010 I just tried to go through my files quickly and I can't find what I am looking for but I will give you the recap...when my son first got sick, I was thinking mycoplasma. I found an expert in London. I can't remember his name. He wrote several journal articles about neuropsychiatric disorders and mycoplasma and mycoplasma encephalitis. I believe he was a pediatric psychiatrists. I e-mailed him and by gosh he e-mailed me back. He said that he has dealt with several cases. All of them resolved on there own within 22-26 months. Completely back to normal, with no treatment, but it took time. He said 1-2 years. My son tested negative for mycoplasma. I have read so many research papers from people all over the world. After I read them, I search for their e-mail addresses. I always find them. I e-mail them questions and I am so surprised that 100% of the people who wrote research articles e-mailed me back. Same with authors of books - 100% e-mailed me back. If I found a doctor, that was a much lower response rate. Maybe 75% would e-mail me back. I did this all when I was searching for answers as to what happened to my son. I don't do this anymore since we finally have our answers. So, I recommend you do a search for mycoplasma pneumonia, mycoplasma encephalitis, mycoplasma neuropsychiatric disorders etc. Read some articles. If you find any that fit your child's symptoms, e-mail the researcher and tell him/ her your story. He or she might have some insight for you. When you search for an e-mail address it may take time. You will have to really dig. Finding conferences the researcher attended or cited within another research article. Dig, dig, dig! Link to comment Share on other sites More sharing options...
P_Mom Posted September 13, 2010 Report Share Posted September 13, 2010 Fixit....a spike that bad in a PANDAS kid.....well..school is in...strep is around......there are strains of strep known to be resistant to Zith. Zith SHOULD handle the myco.....if I were you...I would try a different antibiotic, like a regular dose (or higher) of Augmentin or Keflex. Hope he starts to settle....I know how it feels.....I was a mess when my kid was grunting LOUDLY with a babbling low "voice" and hiss added on to it. Link to comment Share on other sites More sharing options...
Worried_Dad Posted September 13, 2010 Report Share Posted September 13, 2010 Ditto. A doc prescribed valium to help our son sleep, since he'd been having a terrible time at night. The valium made him hyper and he ended up pulling an all-nighter whenever we used it. All the benzos (valium, klonopin, especially ativan) were disastrous for our son. Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper. Link to comment Share on other sites More sharing options...
Fixit Posted September 13, 2010 Author Report Share Posted September 13, 2010 Back from ent.... i can't win...i put encephalitis on paper work..and they are pushing for letter of clearance from Doc L specifically or Doc b and they were maybe ok with letter from pedia... So i've been in touch with doc b's office for last week or better still waiting on letter..he is out all week. called doc l..she is out and there is a letter she started but didn't sign.. have a phone call into ped...who is panda friendly not expert... Good news is that i was told that pex is on ds chart...so that is good...will it clear myco p???? i still want tonsils out...and need to talk with some myco expert.... i feel like if it were strep...in ds' case it would clear more efficiently with his prior experiences AAARRRRGGGHHHHHH Yes this surge has me in a tizzy... it's the jumping that makes me go back to mycop...it;s in the legs..and the fact that 2 weeks prior to this increase in symptoms..his myco level went up ??? but yes...he is exposed at school all the time to junk as i was typing ..just made appit with local doc and maybe have him print letter right there philly pa..that is good stuff...can you possibly pm me with some leads Link to comment Share on other sites More sharing options...
dcmom Posted September 13, 2010 Report Share Posted September 13, 2010 Fixit- I am so sad for your child, reading all of your posts. Hang in there, things will get better- I know you are working SO hard. I am sure this is your plan- but just a reminder... get the T&A prior to PEX maybe try either Clindamycin or zithromax plus rifampin (some on here have had luck with these) to try to clear infection prior to T&A. REALLY try to get IV antibiotics during t&a, and i would consider having a steroid burst in the cabinet for after (if you have had good luck with this before). From our experience- an episode does not just go away on its own when infection is cleared. We really think in most cases we have cleared the girls of infection- but certain episodes needed steroids to clear up- my older dd had an episode that two steroid bursts and antibiotics did not clear up- but pex did. I am not sure if I am in the minority in thinking this way- but for my kids, sometimes once this autoimmune process kicks in- we need intervention to help clear it up . Link to comment Share on other sites More sharing options...
Fixit Posted September 13, 2010 Author Report Share Posted September 13, 2010 Fixit- I am so sad for your child, reading all of your posts. Hang in there, things will get better- I know you are working SO hard. I am sure this is your plan- but just a reminder... get the T&A prior to PEX maybe try either Clindamycin or zithromax plus rifampin (some on here have had luck with these) to try to clear infection prior to T&A. REALLY try to get IV antibiotics during t&a, and i would consider having a steroid burst in the cabinet for after (if you have had good luck with this before). From our experience- an episode does not just go away on its own when infection is cleared. We really think in most cases we have cleared the girls of infection- but certain episodes needed steroids to clear up- my older dd had an episode that two steroid bursts and antibiotics did not clear up- but pex did. I am not sure if I am in the minority in thinking this way- but for my kids, sometimes once this autoimmune process kicks in- we need intervention to help clear it up . just got back from ped..he didnt' want to give letter of clearance till blood work came back..(the work they need for the surgery?) i insisted..please just give me the letter and let them decide if the blood work looks bad...i didn't want to have to chace he once the labs came back...so he gave it to me and i just faxed it... they said they received it..let;s see what tomorrow brings.... did culture ...she did say he throat looked red/raw??? could that just be from screaming maybe it's just post nasal/allergies DC that maybe makes me feel better...the thing is we got to 90% ish with the taper....but didn't hold... so will pex get me to the 100%..if i get there i feell like i can keep him from strep as no positive strep in 2+ years... i feel like its circluating mp...if there is such a thing... like why did the turkish patients relapse... is it autoimmune and unless you keep the system surpresseed....would they have held if at the first sign of relapse they did a taper??? and they weren't on any abx ..... but what would the right abx and dose be if they were going after myco p not strep...would it be different.?? so dc ...sorry i don't remember..was myco p one of your childs triggers too? and how long has it been since pex for you guys Link to comment Share on other sites More sharing options...
Fixit Posted September 13, 2010 Author Report Share Posted September 13, 2010 Fixit- I hope the consult offers some relief. I am not sure this is helpful but my dan doc told me that if vancomycin is helpful then you never want to just stop it bc you will likely relapse. Vancomycin needs to be slowly tapered off - my doc tapers the full treatment dose slowly down over several months. Hope today get better! Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper. Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts do you have more info on how your doc tapers vanco..??? it just seems weird how it has worked 3 times already... But i am getting gun shy as i don't want there to be a resistance... the dose in front of me is 125 mg 3x a day for 2 weeks... how would that be adjusted to a taper.... even though i think my heart is going to pond through my chest.... i can't in my mind start it as (double knock, knock)when we have the T&A on friday, if i need a steroid i will end up in the cycle for needing vanco AGAIN!! Link to comment Share on other sites More sharing options...
Stephanie2 Posted September 14, 2010 Report Share Posted September 14, 2010 I just had a thought. As you may remember, ds2 battled impetigo from this past Jan through end of July. The last time it flared was after a steroid taper. I asked Scott, WHY DID IT COME BACK AGAIN!!!??? And he said that maybe the taper suppressed the immune system so much that it allowed his body to relapse with the impetigo. So there we were doing ANOTHER round of augmentin. I think we finally kicked it, but will it come back next time with do a steroid? Could myco p be opportunistic like that? Waiting for the body's defenses to be down? Does it work like that? Do we all have it in us at all times? Link to comment Share on other sites More sharing options...
Fixit Posted September 14, 2010 Author Report Share Posted September 14, 2010 I just had a thought. As you may remember, ds2 battled impetigo from this past Jan through end of July. The last time it flared was after a steroid taper. I asked Scott, WHY DID IT COME BACK AGAIN!!!??? And he said that maybe the taper suppressed the immune system so much that it allowed his body to relapse with the impetigo. So there we were doing ANOTHER round of augmentin. I think we finally kicked it, but will it come back next time with do a steroid? Could myco p be opportunistic like that? Waiting for the body's defenses to be down? Does it work like that? Do we all have it in us at all times? that is a great question? that is why i feel like myco might be back..the marked rise in igg 2 weeks prior to this onset..and its 42-7 days post.....and even at draw i was wondering if i was seeing something peeking out around the corner.. did draw again today so we will see if its still going..i hope its not labcorp..then we are back to different increments again...shite..just thought of that... Creations still hasn't sent sample kits...getting tired of calling for follow up stuff...this is a 50hr a week job don't want to cut them off as they test more readily for stuff and i like that... the ped today gave me sample thing to check for c-diff..i don';t know how reliable their system is?? ds is acting a little goofy ..is that yeast..that might follow through with some of my thoughts.. Link to comment Share on other sites More sharing options...
Betty04 Posted September 14, 2010 Report Share Posted September 14, 2010 Fixit- I hope the consult offers some relief. I am not sure this is helpful but my dan doc told me that if vancomycin is helpful then you never want to just stop it bc you will likely relapse. Vancomycin needs to be slowly tapered off - my doc tapers the full treatment dose slowly down over several months. Hope today get better! Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper. Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts do you have more info on how your doc tapers vanco..??? it just seems weird how it has worked 3 times already... But i am getting gun shy as i don't want there to be a resistance... the dose in front of me is 125 mg 3x a day for 2 weeks... how would that be adjusted to a taper.... even though i think my heart is going to pond through my chest.... i can't in my mind start it as (double knock, knock)when we have the T&A on friday, if i need a steroid i will end up in the cycle for needing vanco AGAIN!! Link to comment Share on other sites More sharing options...
Betty04 Posted September 14, 2010 Report Share Posted September 14, 2010 Fixit, First let me say that we are first starting down the vancomycin road to treat my son's gut. His tics have skyrocketed since we began. He also had a horrible anal rash that my doc said was the strep coming out. My doc says he will probably be worse for about 2 weeks. My son just started the Vancomycin last week so we are on the treatment dose. The plan is to stay at a treatment dose for one month and then taper by 25mg per week until he is entirely off. We have a consult next week so I will have more details then and gladly share if you want. Just wanted to mention that my son is 5 and weighs 40 lbs and is on 250 mg twice daily. Your dose seems low in comparison? I hope things get better soon. For what it's worth, my son has a T & A before his third birthday and I am so glad we did it! Take care. Link to comment Share on other sites More sharing options...
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