Lisa1971
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Posts posted by Lisa1971
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THANK YOU!!!!!!....all of you just made me feel so much better...
I just got back from a school event and found strep is rampant in his class right now...
His first Neuro appt with the new practice in not until the end of September (his old one moved to nebraska) , but they said if I need to push it up to have the pediatrician call...EXCEPT...I just found out our insurance is changing plans and won't know the details until this afternoon....if the new insurance won't cover the new doctor I will have to go private insurance with the same carrier...but then a wait period...and then there's the pre-existing condition exclusion which I think still in in effect for a few months...
SO before I go pushing up an appointment (or move to nebraska
)...I figured I would check with all of you...If this is common....I feel comfortable waiting it out and bumping up his prophylactic dose as his last neuro had me do once before...
His end of grade tests are in 10 days so this couldn't have come at a worse time...
oh...and yes...he can take ibuprofen...what dosage do you recommend? He is 9 about 57lbs...
thanks again,
--Lisa
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Hi everyone...it's been a while...but I have a quick question...
Alex's tics never really went away completely after gettting strep in September (he was completely symptom free all summer)....he is on 125mg Azith daily...
two weeks ago he came to me as said he started 'counting' again...his steps and movements.....this broke my heart as he hasn't "counted" since June 09...
off to the doctor last Wednesday and rapid and 48 hr cultures of strep A & B negative...(which puts me back on the 'crazy mother' train again...)
his seasonal allergies are full swing being controlled by Zyrtec
The teacher just told me today that the child who sits next to him was out Tuesday with strep...
So, my question...can simple exposure trigger an exaserbation coupled by a hightened immune response to the allergies?
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We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...
We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try.
Lisa, who are you going to see there, do you know?
Susan
Susan,
I was hedging toward Dr. Corbier...only because he is the only one I have received some feedback on...but I guess in the end it will depend on whomever can see my son before June when the current course of azith runs out...and we need our next course of action...if it took 7 weeks for them to send me the paperwork to fill out...I am not hopeful on getting an appointment anytime soon...
--Lisa
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We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...
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For us the recover is literally one day good, one day bad...two weeks into this round of antibiotics Alex could not get through his timed basic subtraction problems (he's in third grade and an honors student) and was very wiggly...the next day his tics were much less pronounced and he sped through the same problems with time to spare...the next day...couldn't get through them again...now 7 weeks in...we are one day wiggly, the next day hardly any, the next day wiggly again...(math is not an issue)
when I say wiggly...his major tics are finger wiggles and shoulder shrugs...he will cycle through random others...sniffing, throat clearing, ect...but the finger wiggles and shoulder shrugs are his constants...
last episode all tics were gone completely about 6 weeks into the antibiotics...this time seems to be taking a bit longer...which I have heard is common...but we are definitely seeing improvement...
Best of luck with your son's recovery...
--Lisa
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I just read something that said that people with autoimmune conditions should not get the chickenpox vaccine...
what a huge coincidence that some of our kids may have unknowingly had strep when they got the vaccine or shortly after receiving it...and now strep...triggers an autoimmune response. By comparison Alex was old to present...8 years...I've been trying to figure out why, now...he'd had strep before, he'd had his first dose of the vaccine before...but this time he had them...together....while his seasonal allergies were raging...it's got to be connected...
http://www.wisegeek.com/what-is-the-chicken-pox-vaccine.htm
did any of your peds ask about or seem concerned about any autoimmune conditions in your family history before administering the vaccine...mine didn't.
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My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).
It puzzles me that docs seem to think "treating the symptoms" (as if that actually works) but ignoring the underlying auto-immune problem is an acceptable way to treat PANDAS. I just don't get it.
If you had any other disease.....for example a treatable yet cancerous brain tumor in a child, that was causing, for example, seizures...would a doc say, "I just want to treat the symptoms, let's leave the tumor alone, no radiation or surgery for your child...we'll just try to control the seizures with these pills--??" You would think he was crazy...yet docs do this to PANDAS kids all the time!!
Here's my word of the day...."OPTIONAL"...as apparently when it comes to PANDAS the medical community has decided...it is optional whether or not to believe it exists, optional whether or not to treat a patient with it, optional as to what the best course of treatment is, optional as to whether or not to treat the underlying cause, optional as to what the underlying cause actual is, optional as to whether insurance will cover said treatments.....and apparently when it comes to their hippocratic oath...and doing what is in the best interest of the patient...turning their back on a sick child...is also an option...
sorry...I've had my fill of ignorant doctors and incompetent administrators for the week...
--Lisa
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Where in NC are you? I can send you some names in the Charlotte area.
She is in Charlotte too - it's Dr. Nelson that is leaving for Nebraska. We took Meg's prescription out to May before he left, but we may also have issues locally - we'll see. If she has a immune deficiency, I think we'll be ok, but if not, our network has broken down a little. We are on the hunt again now. My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).
He refered us to NorthEast in Concord & I will try to get an appt there. I called ahead & the front would only tell me that they treat each case specifically, and that they usually start with supplements. So, I'm going to go interview them, but I am not confident as to whether this will be a solution for us or not. I may also just start looking for pediatricians and see if they will consult with Latimer and at least be the antibiotic/steriod side of the puzzle, as that is our main treatment at this point.
I remember, Claire, that you also mentioned Dr. James Lee? Would you recommend him at this point? Thanks - Susan
Dr Nelson recommended NorthEast to us too...waiting on the referral paperwork to go through...I was told by Tina, Dr. Nelson's nurse that his partner Dr. Wallace does not treat PANDAS period...she flat out refused to take Alex's case...we have an Rx of Azith to last us through June (which is when we had previously decided to test taking him off them completely)...my pediatrician is still being a jerk about the whole thing so we are now on the hunt for a new one of those also...
On a positive note...Alex's latest episode seems to be on the decline...and never progressed past shoulder and hand wiggles...
I am wondering, though...if Dr. Nelson is going to be replaced...and if so if we can get lucky enough they get another PANDAS neuro...all my doctors are in the Presbyterian network...and Northeast is CMC...which is slowing down the process....luckily both are covered by my insurance...
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Hi Kathy, been meaning to get back to you. Will send a note but wanted to post here re Chicken Pox. My boys were fine on their 5th birthday checkup. Gave them the Chicken Pox vacination at that time. 5 weeks later they started showing symptoms of PANDAS. No other sign of strep infection. I was schocked when their ASO's were high. I will forever believe there was a connection between the Chicken Pox vacine and the boys PANDAS. Even our pediatrician (who has argued with me regrading vacinations in general for the last 5 years) admitted that it was very possible that there was a connection. Perhaps it was a weakend immune system due to the shot or perhaps it was the combination of the live vacine and a mild strep that worked together to cause this nightmare. All I can say is that my kids are done having any more vacines!
Kari
The same exact thing happend to my son...8 year old checkup he was fine, gave him the chickenpox booster...and a few weeks later full blown PANDAS (first episode)...tested positive for strep for which he had no symptoms and could have had for upwards of 8 weeks prior. He was also in the middle of an allergy attack at the time of the +strep culture...
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Wondering if anyone thinks that their child has had this virus? The sore throat, and pink eye symptoms were what originally caught my attention, but one of the hallmark symptoms of one strain looks like blisters on the palms, soles of feet and mouth. This article mentions Hemorrhagic conjunctivitis, but other articles just say pink eye. Some reseach by M Cunningham titled "Cytotoxic and viral neutralizing antibodies crossreact with streptococcal M protein, enteroviruses, and human cardiac myosin" originally led me to this. http://www.pnas.org/content/89/4/1320.abstract
excerpt from that abstract
The development of autoimmunity in certain instances is related to infectious agents. In this report, cytotoxic monoclonal antibodies (mAbs) that recognize epitopes on both enteroviruses and the bacterium Streptococcus pyogenes are described. Murine anti-streptococcal mAbs that were crossreactive with streptococcal M protein, human cardiac myosin, and other alpha-helical coiled-coil molecules were found to neutralize coxsackieviruses B3 and B4 or poliovirus type 1.http://kidshealth.org/parent/infections/ba.../coxsackie.html
In most cases, coxsackieviruses cause mild flu-like symptoms and go away without treatment. But in some cases, they can lead to more serious infections.
Signs and Symptoms
Coxsackievirus can produce a wide variety of symptoms. About half of all kids infected with coxsackievirus have no symptoms. Others suddenly develop high fever, headache, and muscle aches, and some also develop a sore throat, abdominal discomfort, or nausea. A child with a coxsackievirus infection may simply feel hot but have no other symptoms. In most kids, the fever lasts about 3 days, then disappears.
Coxsackieviruses can also cause several different symptoms that affect different body parts, including:
Hand, foot, and mouth disease, a type of coxsackievirus syndrome, causes painful red blisters in the throat and on the tongue, gums, hard palate, inside of the cheeks, and the palms of hands and soles of the feet.
Herpangina, an infection of the throat which causes red-ringed blisters and ulcers on the tonsils and soft palate, the fleshy back portion of the roof of the mouth.
Hemorrhagic conjunctivitis, an infection that affects the whites of the eyes. Hemorrhagic conjunctivitis usually begins as eye pain, followed quickly by red, watery eyes with swelling, light sensitivity, and blurred vision.
Alex had coxsakievirus in kindergarten...two years prior to any PANDAS symptoms...he was also exposed to Hand, foot and mouth 2x in pre-school, but never developed it...
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Me too!!!!
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it seems from what I've read on here, each child is different...and each episode is different...
we are in our second strep episode and it is much less severe than the first...
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both times with Alex we saw a drastic reduction in tics on the third day of antibiotics for the actual treatment of strep.
it took 6 weeks on steady prophylactic antibiotics (low dose 125mg per day Omnicef) before the tics completely disappeared and it was a saw-toothed recovery.
we are in the middle of another 'episode' and tomorrow we finish up our 'strep' antibiotic (clindamycin) and Wednesday start a new prophylactic...we are in the saw-toothed phase now. But this 'episode' was much milder than the first so we are keeping our fingers crossed the recovery may be shorter. We are also switching to Azith as the prophylactic...which apparently works differently than the penicillans....
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Alex is also on zyrtec...no issues...but I am noticing it is not really helping during spring and fall and he still has a bad flare up...I notice some of you use it with Flonase...I am going to ask the ped about this today...as his strep is seeming to occur during allergy flare ups...maybe if we can stop the flare ups...
*** Now...the neurologist said not to use decongesants like Dimetapp or any med with the "D" in it...like claritin-D....which contain pseudophedrine...he said for some reason it increases tic activity ...
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We had the pale skin and dark circles also...but both strep infections came in conjuction with a seasonal allergy attack...the dark circles are normal for him when the allergies are present...and that was his tell when he ate something he was allergic to that was going to cause him to throw up...all of a sudden he would get very pale and his under his eyes would get dark...and I would go running for a bowl...
Anyway...if you are concerned about a sinus infection...nasal washes would be a good thing...they will get in there and clean out those sinuses...
Keeping you and your family in our thoughts..
--Lisa
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Lisa, I am so sorry. Ironically, we too have recently had an increase in tics. Our son had 2 separate sore throats that both tested neg for strep, but tics came on soon after. He was on 10 days of abx, and they subsided while on abx, then now have begun to return. I pray so much that your Alex is able to get the strep out of his body soon and that you will find a good neurologist who respects you and the diagnosis. I am so saddened to hear about what you're going through. You will get through this. Remember that we are always here in the forum for you. I hope you have good news soon. How is Alex taking it all? Is he aware of the flare up?
LMAMA
Thank you so much for the kind words...this being our second go round...and "knowing" what is going on...as well as knowing all of you are here...makes a world of difference...
Alex is aware he is 'wiggling' again...we talked about it and I explained everything as to why it happens, 'some kids get strep and get a really bad sore throat...but when you get strep, you get these wiggles', I explained the difference between the two doctors he goes to...one for the 'strep' and one for the 'wiggles'...and told him all he needs to to is just needs to tell me if the 'counting' or 'even' stuff starts happening again...he's a really smart kid and I felt him knowing would thwart any anxiety, I'll carry the anxiety...he needs to just be a kid...and luckily...he is still unphased...when he's alone and home I notice he will relax and his fingers wiggles are more pronounced...and when he's around a lot of people...like when I drop him off at school...he will try and control it more...which is good...he's using the tools the psychologist gave him...we had to walk a fine line...awareness vs. self-consciousness...I don't want his to be ashamed...but he needs to be prepared to respond if and when someone 'notices'...so far so good...
we go back to the ped this afternoon for the strep recheck...
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Hi, we see the doc at Northeast Neurology and also Dr. O'Connor. Northeast is great but SUPER busy and hard to get appt's. I highly recommend Dr. O'Connor at this point in our progress.
HUGS! I know Dr. Nelson is helping a lot here. That is not good news!
Susan
Thanks Susan...good to know you use them...can you PM me Dr. O'Connor's phone number and info...I will definitely go down that route also...
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we moved to NC 6 years ago...and Alex received the majortiy of his vaccines on Long Island..except for the 4-6 year of OPV/IPV, MMR, and DTP/DTaP...and his last Varivax booster he received this past Feb...I have his entire record in front of me prior to the last chicken pox booster...and he never received Prevnar...it seems he received Hib at 2 months, 4 months, and 6 months...
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Lisa-
Yes, the Omnicef dose was really low, so it is very possible, and I think probable, that he was exposed to strep and b/c the dose was so low it was not enough to protect him. The 1/2 tsp. of Zith only 3x/week is also really low. You may want to see about increasing it. If the antibiotic dose is too low, it is almost as if they are not on it at all.
Colleen
I wonder if staying on a really low dose is just asking for a resistant strain (that might have been killed off by a treatment strength dose) to come along and set up shop??? Just conjecturing.
I've been thinking that myself...however..we were pretty sure it was working for a time...he was exposed to but did not develop strep during the summer and also had a mild cold/virus...both without any flare up of tics at all...the strep this time, developed during a brutal allergy flare up (despite being on zyrtec)...during the summer he does not suffer from allergies...his very first strep 'episode' was also during a brutal seasonal allergy flare up...wonder if this plays a part...if late winter/early spring and fall are going to be times to watch out for due to his overactive/compromised immune system...I'm going to write this all down to discuss with the dr maybe give him a 'reason' to up the dosage at least for now...thanks this is all very helpful...
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Hey Colleen,
For the Cleo--1 1/2 tsp (7.5 ml) 2x per day for ten days, (bottle says 75mg/5ml)...so is that 225mg per day? and yes the plan is to start the Azith once this is finished...that Rx is not ready yet...all the nurse told me over the phone was 2.5ml Mon-Wed-Friday....I'll know more when I get it I didn't realize there were different strengths...thank you, that is really good to know...it may be temporary anyway as the new neurologist will hopefully have his/her own game plan...
he was on 1/2 tsp of Omnicef 2x per day everyday since April...(bottle says 125mg/5ml) so basically 125mg per day...right? and we doubled this for 5 days when the gland popped out, it went down in two days and tics decreased...a week or so later tics increased he broke out in a fever and he tested positive for strep...
Prophylacticly...on the low dose of Omnicef tics completely dissapeared in 6 weeks (and didn't come back until a day or so before the gland)...so I guess his logic was keep him on the lowest dose possible...it would be wonderful if he is not resistant to it...this episode is so much less intense than the first one...no counting, no even behaviors, minor shoulder shrugs, constant finger wiggles...already seeing the day by day saw-toothed recovery pattern...and less in morning, more by nighttime...
I agree, it does seem low and especially only 3 days per week... would have been nice if he wasn't moving and/or taking new appointments so we could have discussed it...but he did extent the Rx until June like I asked...at our last appt. in August we decided to pull him off in April...so I'm happy with that at least...
I have a call in to his nurse again and we retest the strep on Monday at the Pediatrician...
Thanks again...you have been very very helpful...
--Lisa
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Thanks again...and great news...I just got off the phone and both doctors at Northeast Pediatric Neurology treat PANDAS...I am having the paperwork started immediately...
Meg's Mom...Dr. Nelson is our doctor...and the one who is moving...
EAMom...you are probably right, it is a very low dose...we did a very low dose of Omnicef...since comparably he is very mild case...Alex is 53lbs. and about 51 inches tall.
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Lisa, what labs are you talking about, reg. strep titers or the Cunningham tests (CaM kinase ll)?
I don't remember which ones specifically...but will have them in my hands soon enough and will let you know...I just remember his comments...the strep titers came up elevated...but he did have a confirmed positive strep culture 8 weeks prior...that was what convinced him it was PANDAS despite the other test results...in hindsight I should have paid more attention to the labs...but i had a doc, diagnosis...and a course of treatment, so I didn't.
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Thanks everyone...
memom...you hit it on the head...and thanks, just knowing there are others on this board who just 'get it'...is worth its weight in gold...I felt better once I put the words out there...tomorrow I start the calls...
EAmom...2.5 ml Monday, Wednesday, and Friday...I'm guessing split into two doses per day...haven't picked it up yet...
my neurologist office called me back...and told me to give Northeast Pediatric Neurology a try...they are in Concord, NC about 45 minutes from me...apparently one of his other PANDAS patients had mentioned to him that there was a doc there that "treated for PANDAS"....they are releasing and sending me copies of Alex's entire file and labs...so I have it in my possession on my hunt and can present to the neurologist once I find one...the nurse did say if this practice turns into a dead end to call them back...and my doc is not leaving until Nov 20th so at least he will be around long enough for this episode to hopefully play out...
Unfortunately...here in the charlotte area...I was the one to find the Neurologist who believed...oops I mean "treats" PANDAS....and I recommended him to a few others on here...
But for now...I have meds...and I have all of you...so I've got all I need ...thanks for the shoulder...
--Lisa
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We are in the middle of a 10 day of Clyndomycin now...seems to be working but too soon to really tell...just make sure your son drinks plenty of water with it...8oz with each dose...it is a pretty strong antibiotic.
I don't have any advice on the IV...but Alex's bloodwork originally came back pretty low too...but our neurologist said he wasn't going to just go by the lab results...he was looking at the whole picture...OCD symptoms and tics following strep infection...meant PANDAS or some subset...his labs just meant he was at the low end of the spectrum...he just got strep again...and is ticking like a madman after months being symptom free...
Good luck
--Lisa
)...I figured I would check with all of you...
Can 'exposure' trigger symptoms?
in PANS / PANDAS (Lyme included)
Posted
Excellent....Thank you...
...with bumping up the Azith...does it matter 1x per day... or split the 250mg 2x per day?....morning or night? he gets it 1x per day now, at night.