Kimflow
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Posts posted by Kimflow
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Yes, thank you for all of your input. I will still drive to see the LLMD this Wednesday. It is a long drive but I had pretty much decided I have to go. The LLMD is also familiar with PANDAS so it will be good to get his input on that too. maybe he will look at our antibiotic history, current regimen from the PANDAS doc. and say we are covering Lyme too.....wishful thinking, I know.
I have thought of doing the tonsillectomy first but Dr. L (our PANDAS doc) felt it would be optimal to get the IVIG and then while it is on board, get the tonsillectomy done....I guess within the 21 day half life.
Our PANDAS symptoms are not as bad but he is no where near baseline. I swear his breath smells like strep right now....and that is after 10 days of clindamycin. 10 more days of that to go and then on to Rifampin. There is no other antibiotic to try...we have been through them all.
Thank you again,
Kim
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LLM,
I know that the Low Oxalate folks use arginine to help with the urinary symptoms associated with high oxalates/urinary irritation/urgency.
What are your thoughts on this? My son has PANDAS... exacerbation with strep throat that was asymptomatic except for PANDAS symptoms. He is about 8 weeks into the diagnosis and now we have slight urinary dribbling. COnfusing as many of the other symtpoms are atleast easing up....The horrible syndenhams chorea has settled, the other symptoms have settled but now we developed this slight urinary dribbling. I know it could be worse so I am not complaining.
However, I was wondering whether you thought this was the antibodies just circulating to that part of the basal ganglia as I initially thought since urinary urgency is part of PANDAS (my son is dry through the night still thankfully) or is this just a symptom of total body inflammation....in the past with autism, major total body inflammation. I guess since he is still dry during the night, it is the PANDAS.
Thanks.
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Hi,
Our son recently diagnosed with PANDAS, Syndenham's chorea will be getting IVIG and tonsillectomy all within 3 weeks.
He has positive bands 41 and 66. Our PANDAS doc. not too worried about that.
But I heard at a support group, one father say that he did not want to do IVIG without treating suspected Lyme as it can cause horrible Herx after IVIG.
I have a LLMD appt. this Wed. ...should I keep it adn see hwat he thinks about the two bands?
My son has been on amox, keflex, augmentin, and now on clindamycin, zithromax. Would that be enough to have taken down some Lyme that could be present.
Thanks for any thoughts.
Kim
PS I read another thread on here where they said IVIG addressed autoimmune response to Lyme and they did not mention horrible herxing. What has been your experience?
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Sorry he is sick...I assume he is already on antibiotics for the PANDAS. Could that be why he cultures negative for strep? I don't know.
I am just now understanding how every sickness will be related to the PANDAS and the fear of exacerbation in one way or another.
Lucky that you have Dr. B. I hope you get some answers from others in the area.
Wish that he is feeling better soon. I think I am going to carry a PANDAS file of history/important research articles, etc. in my car...just in case.
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Hi, I posted update recently on my son. Doing this post to ask questions about first IVIG infusion. I believe it will be over 2 days in office of Dr. L. I hope that they infuse it slowly over 8 hours as my son is so sensitive.
I know to keep him hydrated, to ask for antinausea meds just in case.
They order sheet says Tylenol but I don't do tylenol due to glutathione depletion. I plan to ask if we can just use Ibuprofen to ward off headache/treat fever, etc. I hope to just premedicate with it ahead of time.
She also mentioned sometimes they premedicate with Benadryl maybe to just keep him calm for IV/infusion.....have you all done this?
We also get to keep heplock from first day....actually this is making me more nervous than anything else as to keep that in is going to be a challenge. He cannot stand a bandaid on after blood draw for more than 30 seconds. I can do this. I can do this. I will find a way to keep it in.
Thanks for any hints/reminders of what to do/ask for during a first time IVIG.
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For tonsillectomy???
Any hints on what to make sure to get done.
IV antibiotics during surgery? We are currently on Clindamycin. Then to go to Rifampin.
Dr. L also said try to do when IVIG on board. I read about 21 days half life. What do I do first? The IVIG is still waiting on insurance approval. It could be 7 more days. I see ENT tomorrow.
Or should I just get the tonsillectomy done and let the IVIG clean up. I think the best thing is get IVIG, then tonsillectomy withint 14 days of it.
Also, I am going to ask for deep nasal swab culture and sensitivity to rule out MARCoNs????
Should I ask for culture and sensitivity of tonsils too? I would think yes.
Finally, I need a simple article to take to ENT as I am not sure he will support tonsillectomy ....I hope to educate him on PANDAS. yes, I know it is not a guarantee that they will never get strep again....but it is reomoving a big reservoir.
I did watch the link to the doctor recently posted. maybe I can take that link along fo rhim to peruse on his free time.
Thanks Kim
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Hi,
Wanted to update you all on my son. We got in to see Dr. L. She had cancellation and we live close. We are 8-10 weeks into this journey.
Recap: marked escalation in anxiety/new OCD/verbal triggers of anxiety..........I read about PANDAS......took him to Dr. and said swab him.....positive rapid.
zpack, amoxicillin, keflex failures while still on the antibiotics......augmentin was next ....5 days worth but then we got into see Dr. L.
Her plan for our son based on history:
Clindamycin followed by Rifampin
IVIG asap
Tonsillectomy while IVIG on board
she also diagnosed his adventitious movements as syndenhams chorea
Currently, he has verbal triggers but is easily talked through it and moves on., his choreiform movements are variable, afraid of the dark but separation anxiety, OCD pinching of tops of his feet are gone on Clinda. One positive in all this is that we are seeing MORE language.
Thanks to all of you who talked me "down" when I was on the ledge initially when I couldn't find anyone to help us.
I will post separately on questions I have regarding IVIG and Tonsillectomy.
Thanks, Kim
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Julia Faith,
I tried to PM you but it says member can't accept new messages. Could you pm me with your email address? Thanks ,Kim
Sorry to butt in this thread.
Kim
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Kathryn,
I have only known we have been on the PANDAS train for 5 weeks now...but looking back, I know we have been riding it longer than that.
I think that the VSL3/Strep discussion if a heated debate.
I can only share with you this:
In Feb. my son was struggling. I could not figure out why all the anxiety and trigger words that he would usually just have one of were now suddenly ALL TRIGGERS ALL THE TIME plus even more. A few weeks before, I had pulled VSL 3 because I thought....maybe he doesn't need it and it is very expensive. When I saw his drop in language in Feb, I said I better add that back in as maybe drop in language is gut related. I noticed that it did seem to affect him negatively for the first time ever and he had been on VSL 3 for years without any obvious issues.
We then went on to later read about PANDAS and take my son in to do a rule out swab which came up positive and then the PANDAS diagnosis. Then I remembered the VSL 3 that I had restarted and how it seemed to have affected him and now I thought I realized why.
So I have pulled the goat yogurt and goat kefir (as I dont' know what strains are in the kefir for sure). Doesn't matter anyway because we have also found out that he is positive for blocking and binding CFA so no dairy of any kind at all, not even goat. I have other options for probiotics and since there seems to be some debate on the strep strains in probiotics and PANDAS, I am choosing to find other answers.
I am sure others will post their experiences and I will be anxious to read those. Everyone here is so wonderful at sharing what they have been through....we newcomers would have a much harder road without them.
Kim
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Linda,
What I have learned so far is that the Zithromax is better at immunomodulating PANDAS and not as good as the others (amox, augm, keflex, etc) for killing the strep. I certainly found that out when they prescribed a zpack for his strep throat and it did very little, if not NOTHING.
Kim
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Linda,
I too have seen that cycle.....day 7 everything is pretty good and then Day 8, it seems to start to fall apart. For us, we switched to different antibiotic twice to have it happen with both antibiotics. Next, we went on Augmentin and there was no honeymood period.
It has been suggested that the Augmentin was stronger the strep that is it killing is releasing toxins that might mimic original strep infection. I also read another discussion on here where someone said doctors will sometimes pulse dose to avoid the huge toxin release/upset child.
I also wonder now if it took the Amox and Keflex 8 days to really start knocking down the levels of bacteria and build up enough toxins. Seems awful coicindental that they "seemed" to fail at day 8 on two antibiotics.
But I am confused soo.......are you saying that you are on the same antibiotic ....each time??? If so, I dont' understand while starting another 10 day course with no break would give you another honeymoon period.
In addition, my doc prescribed zithromax 250 mg daily for immunomodulation of pandas symptoms and I think that is definitely helping him.
Kim
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Bigmighty and LLM,
Thanks to both of you for your replies. I guess I will have to go the route of stay on Augmentin and pray that the bad is just something I have to push through...meaning it is actually working. I can't imagine how it couldn't be.
I am also going to see if I can find some sort of reference that might confirm that when the strep dies, it might release the toxins or maybe even enough strep particles to reactivate the strep symptoms.
LLM, we tried many things over the years to remediate the autism. My son was always so sensitive to everything that was supposed to help him. In the end, you are right we enjoyed many good years of great health and slow steady progress as a results of immunomodulation and controlling inflammation. Now the PANDAS is just beating all the immunomodulation and antiinflammatory measures we had and continue to have in place.
Thanks
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Hi everyone,
Trying to figure out the puzzle......would any of you share your experiences of either honeymoon periods with initial start of antibiotics or the opposite.....actual worsening of symptoms at the start of antibiotics.
We have had both and although I tried to go out and pull weeds to distract myself from it, I can't stop thinking about what is going on.
We had positive responses to both Amoxicillin and Keflex but both stopped working around day 7 and symptoms returned. We finally have switched to Augmentin this time...875 mg po split in two doses. He is on Day 3 and he is getting worse. Augmentin is stronger than amox and keflex probably but it is doing nothing. His verbal triggers are increasing every day, his choreiform movements although different than when they first came are back and they had virtually disappeared on day 7 of keflex. I actually smiled with my husband in the kitchen on day 7 of keflex when he said how much my son had improved. The next day, the original behaviors started to inch back in.
I have NOT seen him stick his finger down his throat which was what we saw with the failure of initial zpack and cease working of day 7 of Amoxicillin(he had red throat). I will say that we have not yet returned to the worst symptoms such as his pinching of his tops of his feet remains gone.....I suppose the zithromycin 250 mg is immunomodulating the PANDAS some.
So what is going on......thought some more of you might have past experiences with honeymoon periods (where I should have stayed the course on the amox. and keflex) or escalating symptoms on start of Augmentin only to later see it was working.
Thanks for your patience. I am just beside myself to think of sending him back to school tomorrow. Autism and now add PANDAS. It was already hard enough on him to do his learning. But if I don't, we'll lose the best aide he has ever had.
Kim
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Fighting Mom,
I have not been on this path as long as you but one thing I do know in my 5 short weeks is the one thing that has really helped us has been the zithromax 250 mg daily. It is a sure fire immunomudulator for my son. The doctor said not to think of tapering until all of the PANDAS symptoms are gone for 4 weeks. I have a feeling we'll be on it a good while.
Also, interesting that you seem to be seeing a 2 week pattern and I have seen a 7 day pattern. The new antibotic does miracles for 7 days and then seems to act as if it is not working anymore...even while we are still on teh course.
We are now on Augmentin and no miracles this time. Augmentin is stronger than both of the previous antibiotics so if this isn't keeping strep down, nothing will. Therefore, there must be another reason to the 7 day cycle.
Staying on the Augmentin and seeing what happens. Praying too.
Kim
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Nancy,
I have decided that if Augmentin isn't going to take down the returning strep symptoms, not much will. Might be a case of where you just have to stay the course now. Another part of the puzzle. I will keep him on the Augmentin paying special attention to making sure I am faithful on keeping probitiotics in him.
Next, I am going to try and address the elevated IgE and histamine. Obviously some of the "symptoms" (which acutally are behaviors since there was no fever)are related to the strep....but how much might be related to the elevated histamine.
Also, another part of the puzzle I am trying to figure out is why does it seem that when the strep seems to be regaining strength, he also looks like he has horrible allergies. I guess all immune related.
Someone else on this board was trying to put the histamine piece with the strep and methylation.
So that is my plan....Continue Augmentin even if symptoms don't completely stay away as they did up until day 7 in two antibiotics, continue zithromycin and then see what the ketotifen orally does for reducing histamine. For now I chose the ketotifen to try rather than the singulair. I read that Ketotifen can address asthma, food allergies/leaky gut/ and also I read that it blocks TNF alpha. I have read that kids with autism (not PANDAS) are having success with it and I read that alot of kids have had trouble with the Singulair. So I hope a slow trial of Ketotifen is a good decision.
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Thanks guys. Good to know, I made the right choice. I split the dose. I have 30 days of it and a refill....I just hope I can get him past day 7 of this Augmentin without any return of symptoms.
Would any of you have any idea why we have been through two antibiotics, Amoxicillin and then Keflex and with both, they worked for 7 days and then day 8, while STILL TAKING THE DOSES, I would start to see the original symptoms creeping back in. Then we switch to new antibiotic.
So we have done zpack 5 days. Didn't address strep at all. Then Amoxicillin, stopped working Day 8. Then Keflex stopped working Day 8. I will say that the zithromax 250 mg seems to be immunomodulating well. I am thankful. We just haven't yet found the magic on killing the strep.
I assume that the strep keeps finding a way to beat the antibiotic..........could there be any other reason?
Thanks, Kim
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PS Mayzoo...
I have asked two different doctors along this path of strep throat cultures...to please order sensitivity. Both have told me that they don't do drug sensitivities on throat cultures. Could they not know? How else can I ask for it next time...I hope there isn't a next time, come to think of it. :-) Kim
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Mayzoo,
Thanks for sharing that message of hope. It is much appreciated.
Kim
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One practitioner ordered Augmentin 875 once a day.
Another practitioner said she usually doses it 450 mg twice a day. She worries about my son's GI discomfort.
Which way to go?
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Mayzoo,
I am going to give the Augmentin. It says Amox TR-K CL 875 mg. DC doc said give it one time a day. The part that makes me nervous is that the doc that prescribed stepped out of the room twice to consult/ask questions of the PA that I am to see end of May locally. That practitioner has experience in treating PANDAS and Lyme. She advised the dosing but did not actually see my son.
It seems more commonly dosed twice a day but I did find that high doses are bacteriacidal so maybe that is what she is going for .....he is only 50 pounds.
This is so nervewracking for me I suppose as I have already been fighting autism for 8 years....I guess I am a little worn out stress wise because I have fought autism like it was the first day of the battle every day for all those years already. Anyhow, I also never quit, so charge on.
Anyhow, I am going to give this and the zithromax.
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The bands were P41 and P66. I have to go research what this means.
The DC doc. deferred to NY doc who is experienced with PANDAS. Waiting on her reply.
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labs are back...lyme 2 bands only--- indeterminate, mycoplasma, babesia, bartonella all negative. has been exposed to PARVO but it is now possibly inactive.
No one can tell me what to do.....assistant in DC office says if you go to Augmentin, have to stop the zithromax but that has been the one thing that stopped the choreiform movements for the most part.
The Augmentin dose is 875 mg once a day. He is only 50 pounds. I have to worry about his kidneys or whatever detoxes antibiotics.
I will wait to see what DR. S says.....maybe she will have some wisdom for me. She was a kind soul.
DC office said maybe gut bugs growing causing verbal triggers. I say why would the return of symptoms be exactly the same pattern that we had prior to diagnosing strep throat.
I have no idea what to do. Finish the keflex and pray and keep taking the zithromax daily as it is the one thing that seems to be working. Maybe through the immunomodulation daily, the body will kick the rest of the strep.
Right now he is much better than he is at night....why would that be? Thanks for listeing to me ramble to sort this out. Need that crystal ball.
Kim
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all of those tests have been drawn. No results yet.
I am off to get augmentin prescription although ti scares me to death as in the past, augmentin was implicated in autism for causing ammonia to rise in the brain......my son already has autism already.
No email response yet from doc in NY.....I hope she is agreeable to the Augmentin. I am going to get it this morning to start it.
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Hi,
It is 239 am and all heck is breaking lose again.
strep throat 4 weeks ago that presented only with verbal triggers, sensory/motor defensiveness, etc.
they gave me z pack 5 days. Then they gave me amoxicillin 250 mg BID 10 days.
THings improved but day 8 based on return of verbal triggers, waking at night, I knew strep was back.
Saw specialist in New York. She gave me zithromycin daily 250 mg and was not going to prescribe additional strep antibiotics but looked at his throat and then prescrbied keflex.
Yesterrday much improvement. This morning day 8 of keflex, once again noted that he refused to wipe his own nose when I gave him kleenex. Also had a verbal trigger where he thinks I need to help him put his foot down. Went on to have good day at school.
Bedtime......many verbal triggers (foot down, there you go, sit down)....all while he was screaming in panic almost for me to repeat and do this for him. Finally got him to sleep. 130 am.....woke, scratching at outside of throat (usual sign of sore throat), needed nebulizer. (this is third time in 3 weeks he has needed a nebulizer out of hte blue). I gave him one but as he went back to sleep, had several more HELP ME< THERE YOU GO....verbal triggers screaming in panic. He is now back to sleep.
Is this the strep once again beating another antibiotic. I am so scared. We can't get past Day 9 without relapse.
I have Augmenting that another provider gave me the day before I went to Dr. Schulman in New York personally. I will email in the morning but thinkign I need to move on to Augmentin. I am so scared at setting up resistance. This will be our 4th antibiotic in that many weeks to try adn kill strep.
Just this afternoon, my husband said how he has improved so much. The choreiform movements have decreased on the daily zithromax. Now why is he having return of strep throat. This could not be that the strep are coming out of biofilm......I doubt it as he doesn't seem to have die off from the start of any of these antibiotics.
Please advise. This is a horrible rollercoaster.
Kim
St. John's wort contraindicated YES or NO in PANDAS
in PANS / PANDAS (Lyme included)
Posted
I read on a PANDAS blog...cannot remember which one....that St. John's wort is contraidicated for kids with PANDAS. What are your thoughts? Does everyone feel this way?
What do you all use then besides 5htp that is natural for anxiety?
Thanks.