Lisa1971
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I also posted this in the other Saving Sammy thread...
Good news...sort of...
My only cousin is a camera man for the Today Show...so after reading this I gave him a call...he said...basically...this story had to have personally touched someone on staff for it to be made into a segment...that's how the show works...I told him about my son...about all of us...about how there are still a number of you fighting to get help for your children...how this illness is very real...
He is going to speak with the producers and find out as much background as he can about the segment...he will also try and speak to whomever will listen to hopefully let them know this is a "story" that should be explored...so hopefully...this will not end for us here...hopefully this will be just the beginning...
In speaking with him, it turns out his son who is about 5 or 6 has been dealing with intermittent tic issues which have had them all baffled...sound familiar...not saying it is PANDAS related...as I have not spoken enough with him to find out (he was heading on set to do the Colbert Report but promised he would call me later tonight)
anyway....he is an emmy-nominated camera man...with a lot of contacts and a deep desire to produce something worthwhile...I come from a very small family that does not live close, does not speak often, but are always there for each other in times of crisis...and will do whatever it takes to help...he is very interested in doing what he can to help...especially if it turns out that the coincidence of me coming on here today to see what is going on, finding out about the Saving Sammy book, then finding out she will be on the show tomorrow...somehow ends up helping his son as well...
I will keep everyone posted...and please keep your finger crossed...
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Good news...sort of...
My only cousin is a camera man for the Today Show...so after reading this I gave him a call...he said...basically...this story had to have personally touched someone on staff for it to be made into a segment...that's how the show works...I told him about my son...about all of us...about how there are still a number of you fighting to get help for your children...how this illness is very real...
He is going to speak with the producers and find out as much background as he can about the segment...he will also try and speak to whomever will listen to hopefully let them know this is a "story" that should be explored...so hopefully...this will not end for us here...hopefully this will be just the beginning...
In speaking with him, it turns out his son who is about 5 or 6 has been dealing with intermittent tic issues which have had them all baffled...sound familiar...not saying it is PANDAS related...as I have not spoken enough with him to find out (he was heading on set to do the Colbert Report but promised he would call me later tonight)
anyway....he is an emmy-nominated camera man...with a lot of contacts and a deep desire to produce something worthwhile...I come from a very small family that does not live close, does not speak often, but are always there for each other in times of crisis...and will do whatever it takes to help...he is very interested in doing what he can to help...especially if it turns out that the coincidence of me coming on here today to see what is going on, finding out about the Saving Sammy book, then finding out she will be on the show tomorrow...somehow ends up helping his son as well...
I will keep everyone posted...and please keep your finger crossed...
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Day 4 and seeing a reduction is a very very good thing...it is not uncommon to see a 'saw-toothed' recovery...we did...one day good, one day bad...for us by week 6...tics were gone completely...and have since remained gone...we were lucky and he went back 100% to where he was "before"...but, this is not always the case...for some a 'reduction' is as good as it gets...
My thoughts and prayers are with you and your family that your son flies through 'reduction' and gets back to 'normal'...
--Lisa
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Thanks everyone...the past few months being our first "experience" I am just so thankful for this reprieive....
and just wanted to add...about 3 days ago Alex told me he no longer counts his steps or feel things need to be even...(the obsessive step counting was my very first indication that something was not right...but I had chalked it up to inherited OCD behavior (in my family not having some neurotic behavior would be abnormal) ...but the tics were what pushed us over the edge...again, I had noticed this behavior was gone a while back...but having him notice it really put my mind at ease...I feel he may be in a position now to alert me if things start to go in the wrong direction again...as opposed to me having to be so vigilant and keep constant monitoring...wondering if a weird move or behavior is the start of another episode...
So, to be able to sit here now and know that both his mental and physical symptoms are gone makes me hopeful...I wish I could say I believe they are gone for good...but I've resigned myself that we will most likely be going through all of this again at some point...at least now, though, we have a wonderful neurologist...and I have this amazing support system right here...it was all of your stories and advice that saved us...I never would have pushed for a strep test otherwise...and for that I thank all of you from the bottom of my heart.
You are all always in my thoughts and prayers
--Lisa
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The antibiotics will not prevent anything viral...like a cold...but hopefully will prevent any secondary bacterial infection from developing...
And, it is not uncommon that a virus exaserbates the PANDAS symptoms...and sets the whole recovery back to ground zero...it happened with us...
I hope she is doing better by now...
--Lisa
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From all of the research I have done, one of the distinguishing factors of PANDAS is a "sudden onset" of tics when a strep infection is involved...it was what caused my psychologist to unequivocally rule out OCD, ADD, and Tourettes, with my son...as HE could tell her the exact day they began...she said, disorders like ODC and Tourettes develop gradually over time and the kids are normally not "aware" of when then started...
It took 6 weeks on the antibiotics for the tics to completely disappear. and during that time it was a saw-toothed recovery, and then they were just gone...
Hope this helps...and good luck...
--Lisa
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Since Alex is 8 we have been very open with him about what has been going on...he recognized his tics, we called them 'figits', if other kids asked about them he simply told them they were a "habbit he couldn't break", and he always maintained he felt he "had" to do the movement involved...his fixation on being and doing things even "even". And luckily for us, he was never embarrassed by them...
As of around May 20th, after 6 weeks of prophalactic antibiotics and about 14 weeks after initial onset...his tics disappeared completely...
Today, we were driving in the car and he asked for a piece of gum...then a few minutes later exclaims..."Mommy...my tics are gone!!!!" I'm not sure if it was motivated by shock, relief, maybe a little of both...but he was very excited about it...
I laughed, and told him, I knew that...they have been gone for a while now...but I was curious and asked him what suddenly made him realize it...he said he didn't feel like he "had" to do something ( that normally would be related to the gum chewing...)
So needless to say, today...has been the best day since Feb 13th....
--Lisa
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I'm sorry you are having to go through this...hopefully your case will be like mine and there will be light at the end of your tunnel...
My Dr told me the point of the antibiotics is to clear out any present strep infection and prevent any regrowth...since they believe the infection triggers the auto-immune reaction.... The tics are a symptom of the inflamed Basal Ganglia, caused by the auto-immune response to the strep bacteria...so in a perfect world...antiboitics prevent the bacteria, which prevent the auto-immune response, the brain does not become inflamed which in turn prevents the tics...but from what I understand (and please someone correct me if I am wrong) Only IVIG or Plasma Exchage treatment actually addresses the auto-immune component of PANDAS...basically resetting the system so a strep infection will ultimately not cause the antbodies to attack the brain in the first place...the antibiotics do not make PANDAS go away...they merely keeps it at bay...my son is responding to the antibiotics, some other children are not as lucky...
My son's tics decreased drastically after his first 10 day round of antibiotics, then came back with a vengeance when he got a bad cold which turned into a sinus infection, then decreased again after second 10 day round....but they did not go away completely until he was on Omnicef for 6 weeks prophalactically. (and it was an up and down recovery...one day good, the next not so much...during this time)
I still do not know exactly why they went away...could be ten days at a clip was not enough to really clear the bacteria and the longer round really got in there and took care of it...could be it just took that long for the tics to dissipate and the antibiotics had nothing to do with it...but....since being on the antibiotics he has been exposed to strep and had a viral sore throat/low grade fever without one tic...he is completely back to the kid he was before this began in February...so I will keep him on the antibiotics as long as the dr wants...we re-evaluate in August and may pull him off in November as a test...at present time The Dr, nor I feel a need for more aggressive treatment...but that could change...we are lucky and Alex is on the low end of the spectrum...
Has your son had comprehensive bloodwork done? This is a good place to start...to rule out other causes...I allowed Alex to have an MRI also, only because we have good insurance which would cover it...but, the Dr even said it was just another "rule out" test...it wouldn't confirm or deny PANDAS, just rule out a larger tumor or something along those lines...also his tonsils were never an issue so we did not need to address them...
Good luck.
--Lisa
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Yes, we also tested for Lyme, also negative.
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Welcome
My son Also is on the mild side of the spectrum...it took us about 6 weeks on antibiotics...Cefdinir 125 mg broken up 2x per day...but the tics are completely gone...not a wiggle or twitch...and he has been exposed to strep while on the Rx without incident...so there it hope...
See if you can get your ped to refer you to a neurologist also...not all recognize PANDAS, we just got lucky...
Hang in there...and good luck
--Lisa
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Hi Alex,
My son Alex has been on Cefdinir (Omnicef) prophalactically for about 6 weeks now with tremendous results...he's on 1/2 tsp 2x per day as he was diagnosed with PANDAS but on the very low end of the spectrum. It took about 3 weeks but his tics have pretty much completely disappeared...once in a while I see something (finger wiggle or elbow bump)...but it is really really really rare in the past two weeks...
Our pediactric neurologist is keeping him on this until August at which time we will switch to something else simply to stave off any resistance issues...
Hope this helps
-Lisa
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We had our second visit with the Neurologist today and got all of Alex's blood test and MRI results...all came back negative for any catastrophic illnesses...
He has been on Omnicef for 4 weeks and this week the tics have practically dissapeared...last week we were still a little saw-toothed...this week even I am having a hard time detecting tics...not even finger wiggles....
The Neuro said he thinks this is definitely PANDAS on a very low end of the spectrum or some other variation of it...as he firmly believes the initial strep infection was the trigger...and wants to keep Alex on the antibiotic until the fall...then we will re-evaluate...depending if anything crops up...our next appointment is at the end of August...
Alex was also exposed to strep last week, his friend who he plays with everyday got it last weekend...and no change in Alex's behavior at all...yesterday he developed a sore throat with small red blisters and no change in behavior (the doctor looked at it today and said it appeared viral) ...we are keeping him on the Omnicef for now...and may switch him to Azith in the fall for resistance reasons...
So for now...all is good...
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Susan,
I live in Matthews and found Dr. James Nelson of Presbyterian Pediatric Neurology is also very PANDAS knowledgeable, we have our second visit with him tomorrow...they have an office on 4th Street in Charlotte if that is closer to you...I use the Matthews office, and there is another one in Salisbury.
--Lisa
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Yesterday my son was able to meet with the Neurologist for the first time...I was apprehensive and expecting to hit the same walls as with my Ped...and I was so glad to be wrong...
Not only does he acknowledge PANDAS he completely understands the frustration surrounding its controversy as a diagnosis and lack of any real cure.
He was soft spoken and not at all arrogant and he told me everything I already had learned from here and other research...we talked like grown ups and he took the time to bring in his laptop and watch the videos I brought with me while we were still there and saw my minute by minute documentaion as helpful not obsessive. When I told him the Ped was ignoring all of this he told me not to worry about the ped...that he was going to take it from here and provide everything Alex and I will need...including triage is necessary and emergency visits if an uncontrollable episode should arise...
He immediately started Alex on a 4 month cycle of Omnicef...and ordered a slew of bloodwork...to eliminate some things and test for others including the ASO and DNASE...he is also sending a sample to a special lab in Florida he said has the capability to test specifically for something PANDAS related...and for the enzyme in the blood that would make IVIG a possible treatment for him down the road.
He has not concluded PANDAS definitely at this point obviously he needs to review the bloodwork...and ordered an MRI which he said will probably not show anything conclusive but is a good starting point to see if there is any abnormalalities. He did say there could be other things causing the same symptoms and he was going to investigate all of them. And he set up a follow up appointment for 4 weeks from now...
He also said...of all the supplements to give ...the Omega 3 is the most important and beneficial...he also said that cognitive behavioral therapy was also a crucial treatment in this also...he mentioned some meds to control the tics but only suggested those in cases where the tics were becoming painful physcially or emotionally to the child as he said they don't cure anything...just mask the symptom...luckily Alex isn't bothered by them at this point.
His name is James E. Nelson and he is part of Presbyterian Pediatric Neurology...they have offices in Charlotte, Matthews (where I went) and Salisbury. There are a few doctors in the practice.
I think I'm still in shock...but I feel vindicated and finally like I have a direction...so aside for the 10 vials of blood drawn from my kid...yesterday was a very good day...
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We also fit the phenotype here...OCD runs in my family...my mother was the incessent germaphobe and hand washer...I am a highly organized perfectionist with a freakishly good memory. I learned to use my OCDish behaviors to my advantage in work and now running my business...my mother is much closer to disorder status than I am...but I also learned coping mechanisms to keep mine in check...autoimmune disease is also in my family...my mother and brother both are diagnosed with reumatoid arthritis...I don't show any symptoms so have not been tested...doesn't mean I won't get it eventually...but my son is the first person in my family to display tics...his OCDishness...is symmetry.
My son is also very good at mathematics...he refuses to show his work and does it all in his head...even adding three digit numbers... (he's 8)...I have a degree in English and although I am very good at advanced mathematical concepts...I will add or subtract simple numbers incorrectly...when his tics were at their worst...I did notice he was making silly mistakes in his arithmatic...
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Thanks...again...all the info is priceless...
Well Alex is back on antibiotics again...his cold went away but the cough was getting worse and the tics remained steady...not too bad...but steady...doctor thinks he has a sinus infection and put him on Cedinir (omnicef) for another 10 days...he said too soon for another amoxi Rx...but I looked this one up and it's prescribed for strep also in case that's what's hiding up in the sinus'...so it's all good.
Seasonal allergies still in check
eczema still in check
Cold gone
and he said his lungs were clear and cough should clear up as the sinus infection goes away... said to really wash out his sinus' frequently...between that and the antibiotics we should be able to clear him up quickly...
I will keep you posted if this helps...we were down to just a few finger wiggles before the cold...I am keeping my fingers crossed we get back there again...
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The gland issue went completely away two days after being on motrin (5 days before the well visit)...when I had called the doctor about it, they said there was a mild virus going around causing the exact same symptoms in other kids...they said if it didn't improve in a couple of days or got suddenly worse...to bring him in...he improved...I would never have allowed a booster had I thought for a minute he was sick...aside from the eczema he was presenting completely healthy on that exam...the pediatrician may not be a good listener or have the best rapport speaking to parents...but he is not a complete idiot...on this visit, we spoke about my concern regarding the elaborate counting I had just noticed and decided to monitor him further before jumping in with a psychologist...it was not interferring with his life...and in my family NOT having some kind of OCD behaviors would be abnormal...
The gland still could have been that virus...or it could have been our only tell for strep...I will never know for sure...just as I will never know for sure how long he actively had strep before the culture...right now I'm not quite sure which is worse...having a child present with strep symptoms but test negative on culture or having a kid test positive on culture without ever showing a symptoms...knowing what I know now...I have to assume...eczema flare up means strep...increase tics means strep...but seeing what I just saw...that too is clearly is not the case all the time, since both of those a week ago meant he was incubating a cold...but I have to err on the side of caution and keep dragging him in for strep tests, which is not helping his stress level, which in turn is not helping the tics...I have to balance out being an advocate and carefully not cross that line into being hysterical...
Over the past few weeks his tics have increased for these reasons...
-emotional stress (homework he thinks is too hard, going to doctors, getting the actual strep test, getting in trouble for something)
-awareness of them (when he hears me talking about it to my husband or doctor, or when a friend notices and asks him about it)
-sickness incubating
-overstimulation
-too much sugar
The tics are his ONLY abnormal behavior...so I have to be big time detective...as in our world...unsymptomatic strep and a packet of FUN DIP cause the same reaction these days...too many strep tests with negative results will only hurt my case...and blood tests at this stage will be moot since he did test positive on the first test...no one is disputing he had strep...we just can't seem to agree on what caused the tics...
I see a pattern...the doctor sees a unrelated symptoms...I'm a mother with a BA in English...he has a doctorate in medicine...it would be easier to be angry if I didn't understand his perspective...but angry won't help anyone, not me and certainly not my son...I need my energy to help him in more productive ways...
Thanks again for all of your continued advice and support...
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Dedee...Sadly, I know I will not change his mind... he did say to me he does recognize PANDAS as a viable illness he just doesn't know enough about it to say if this is it...but...he also didn't seem interested enough to learn...which annoyed me...but...if he does get diagnosed I will give him one more shot to become interested otherwise I'll switch...
and I agree and am not hopeful the neurologist will be any help...I just want to establish the connection...since they are impossible to get appointments with.
Basically, since the psychologist is on board I'm going to use her as much as possible...although she can only help him manage the behavior...she is doing a world of good for my mental sanity...having the doctor who specialized in crazy tell you you are NOT crazy...goes a long way...she used to use my pediatrician for her daughter and said he was a bit closed off...and suggested another one in the same practice she now uses...one of the female doctors who is a bit more open to motherly intuition...
AmySLP...the rash came on pretty sudden 7-8 days into the RX...and looked like small red pimples...some looked like they had little white heads...they did not itch him...but since he was pumped up with antihistamines for the seasonal allergies and lubed up with Eucerin for the eczema this doesn't surprise me...it started on his torso and face then spread out to his arms and hands and finally legs and feet...it got worse keeping him on the antibiotics for the remaining two days but, literally cleared up in one day being off the anti-biotics...so it really points to amoxi-rash...but who knows anymore...the doctor said the rash blanched when touched...so I'm assuming a strep based rash and/or allergic reaction to RX rash doesn't...
Now, here is my next question...is there a type of doctor deals specifically with auto-immune aspect of PANDAS?
Oh...and aside from the Omega 3 supplements...are there any other supplements that any of you are useing and finding helpful?
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Alex hasn't been diagnosed as anything yet...mainly because my Ped. thinks I'm a nut...so I'm still trying to get my ducks in a row...Psychologist next week, neurologist April 13th, Here's the time line:
Jan 19th--Gland pops out on neck, sore neck (not throat), feverish, lethargic...(called ped, said to treat with motrin) goes away in a day or so.
Jan 21st-- notice elaborate counting of steps...everything must be even.
Jan 24th--eczema flares up, more emotional than normal...cries easily.
Jan 26th--Well Visit, given Chicken Pox booster, using Eucerin for eczema.
Feb 11th--Seasonal allergies flare up. Notice incessent finger wiggling for first time...very figity.
Feb 12th--Complex tics at breakfast table, involving fingers, arms and elbows. Interfering with eating. Full body tics by the time he got home from school. Test positive for strep...NO STREP SYMPTOMS other than tics...and gland issue weeks prior. Put on 10 day Amoxicillan, and zyrtec for allergies.
Feb 15th--drastic decrease in tics. eczema under control. allergies under control.
Feb 19th--breaks out in full body rash...back to Ped....diagnoses as Amoxi Rash...continue meds.
Feb 21st--Rash gets worse, tics increase.
Feb 22nd-23rd--tics decrease steadily. Down to finger wiggles and foot stomps only. First day off meds. Rash dissapates.
Feb 26th--Tics almost gone...made it through a dinner without any finger wiggles.
Feb 27th-Mar 1st--Alternating days, one day hardly any tics, the next day they are more present but still steadily decreasing. Worse at night, hardly evident in morning.
Mar 2nd-4th--Tics increasing again...becoming more complex again. New tic...tongue taps against teeth.
Mar 5--Full blown full body tics again..back to Pediatrician...48hr strep culture negative.
Mar 6-10-Tics continue to increase.
Mar 11th--Bad cold finally emerges...tics high.
Mar 12-14--Tics decrease as cold subsides.
Mar 15-19--Tics steadily decreasing again, down to mainly finger wiggles, slight elbow bumps, tongue and teeth thing.
Is this pattern familiar to any of you? Aside from being a bit overly sensitive...there have not been any other emotional issues. And aside from the tics, which appear OCD in nature, he has not had any other weird issues. OCD behaviors run in my family...but not a single person has ever had tics like this.
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My son does the hand movements...although he is not confirmed PANDAS yet...it was the constant finger wiggles that made me really notice something was not right...
his movements are symetrical... and usually simultaneosly on both hands, even when all his other tics subsided, the finger wiggles were still there...
in the past week his tics have increased again...we went for another strep test but it came back negative...still waiting to see the neurologist.
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There is another rash called "guttate psoriasis" that will come on suddenly and is triggered by strep...
I found out about this by accident, when I was researching rashes as my son just had one last week...7 days into his Rx.
Alex's rash as a result of taking Amoxicillan...apparently Amox can cause a rash as a normal side-effect...it went away one day after the cycle of meds was over.
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Being a newbie to all of this, and just starting to hit my head into the brick walls that all of you have been bludgeoning yourself on for years...I guess I'm just baffled at the sheer irony of it all...when did being a parent, a concerned persistent, parent... become a bad thing...I'm fairly certain that a parent can be put in jail for failing to get treatment for their sick child. We have sick children, and yet we are being forced to perform gymnastics to try and get them treated for their symptoms and illness...and being made to feel like we are the ones who are crazy in the process.
A doctor has an ethical obligation to treat their patients symptoms...that is their basic ethical obligation...when exactly did it become acceptable to only perform up to the minimum requirements? When did it become okay for them to simply dismiss something because they had never seen it before? When did it become okay for them to not follow through on all the evidence right in front of them...our children are not stealth in their symptoms...our kids are not subtle in their behaviors...our kids have a big red button pushed when exposed to or develop strep that sends them off the charts into neurological disorder status' overnight. I sincerely, do not understand...Strep is allowed to cause other things...but just not this?
So, until someone can connect the dots who actually has the power to put this in the "Big Book of Real Things Wrong with People" our children continue to suffer?...my child is not even remotely at the end of the continuum as most of yours, and it was enough for me to become concerned...enough for me to want answers...enough for me to see that on Wednesday my son was normal and on Thursday he was a completely different child. How does a child sit still one day and then uncontrollably tic all over the place the next? And why doesn't my doctor want to find out? Why do I have to resign myself for an uphill battle to get my son treated?
Contrary to what "those people" think... I do not want my child to have PANDAS. Being labled with a disorder/disease/medical condition is the last thing I think any of us really want for our kids...we are not looking for a fancy name, we are not looking for a quick cure...we are looking for answers...we want to know exactly why this happened, how it can be prevented, how it can be stopped, and what exactly we need to do to make it better for our children...we want our kids to be taken and treated seriously. Because, I'm sorry what is going on with all of them right now...is no joke.
I am most certainly not desperate...I am terrified. This is my child...and my job is to do everything in my power to help him...and fortunate for him, my OCD tendencies will not allow me to only do the minimum.
Sorry about the rant...and my heart truly goes out to all of you and your children. And I thank all of you for the support and kindness you have shown me these past couple of weeks.
--Lisa
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Still making progress...tics almost non existent in morning and more prevelent in afternoon and peak in evening...hand tics only now...
I met with the psychologist this morning who is very interested in Alex...I videotaped him yesterday afternoon just talking but displaying obvious hand tics throughout the conversation I put them on a disc with videos of him in September and Christmas showing no hand tics at all, one was him just hanging out and singing a song keeping his hands still and one was of him playing uno with my husband...using his hands normally...and another was of him just talking and keeping his hands normal...I was glad i found these little video blurbs because it reaffirmed to me that he really had no tics prior to all of this...and she was glad to get them to look at as well.
the pyschologist also has history with my pediatrician and said she knows him to be a oppinionated and not a good listener...she uses the same practice but a different doctor now, whom she said may be better for us going forward...so that is good to know...
She is very open to communicating with the pediatrican and neurologist going forward, so at least I have one cog in the wheel in place...and she also recommened another neurologist if the one I get doesn't work out...she is going to call me on Monday to set up Alex's first appointment with her. She said if nothing else, at least she can give him the tools to control the tics...she said from what I am describing she feels they are OCD related, not ADD or Tourettes...but obviously will know more when she meets him.
And the best news is she also handles grown-ups too...so after I get this under control...I can schedule an appointment for myself to decompress. But she made very clear that I was asking all the right questions, I wasn't crazy...and the pediatrician handled the situation badly. So, I feel a lot better now.
I also spoke with his teacher today and let her in on the situation...she said she hadn't even noticed the tics, so that's good... she said she would keep an extra eye out for me, and also let me know immediately if anyone else gets strep for the remainder of the school year.
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Colleen...
Because it was so long ago I don't remember the specifics about the strep symptoms...I do remember though, that he did not have a sore throat...most likely what happened is, he had a fever and glassy eyes and was very blah (this is how I usually tell he is actually sick as opposed to having an allergy attack)...I remember being surprised it was strep...there weren't any behavioral changes...his eczema could also have been present...it usually is...his eczema is sort of always there...tiny flesh colored bumps that feel like dry rough patches, near his ankles and wrists...they never get red and scaly...but if he scratches them a lot they will bleed leaving tiny brown scabs...he has had this since he was an infant and it has never progressed...because of it he only showers twice a week, and when he was younger once a week, unless he was really filthy after a baseball game or riding his ATV ect...we have a swimming pool so I try an keep him moisturized during the summer as much as possible...I think the really thick sunblock I use also helps with this...as he does not have any more breakouts during the summer than any other time...it always seems to bother him around an allergy flare up or other sickness...cold, flu...now strep...
Eczema is a weakness for him so it makes sense if it is strep related, flaring up when his body is compromised...but whether it is a symptom for strep...that's a tough one, but I can pretend it is and use it as such. I'm going to say I believe the gland was a symptom and had I had him tested when that popped out I may have been able to avoid all of this, but who knows...
I'm not getting my hopes up that the neurologist will be any more cooperative than the pediatrician was...but...if I get my foot in the door and my son is a patient...and this happens again...I can then just make the call and have him seen---mid-episode...as opposed to now when the tics are basically gone...but logicaly I'm hoping that if the neurologist sees him without tics...then if this happens again...sees the drastic onset...she will be interested enough to explore it...make a call to the pediatrician and psychologist and all work together in harmony...if not...I guess I will be the one treating from all the different angles.
If the neurologist is on board then I will see if there is another pediatrician she recommends, if not, then I will be the annoying mother who brings he kid for a strep test at the first sign of illness...and will ask his teacher to let me know the minute she finds out another child in the class has strep...
As for now, I'm going to just finish up the Amox, continue the Zyrtec long term, continue the Omega 3, continue the skin lotions, and look into a more natural/herbal anti-inflammatory as I'm not comfortable giving him motrin long term. as well as a possible herbal alternative to the prophalactic anti-biotic use...since it doesn't look like my pediatrician is going to extend my Rx...(obvioulsy this will not take the place of antibiotics when needed, but maybe it can help keep the immune system in balance) I'm going to throw what I can at it...and get loud when I need to...and monitor him closely, using what I have to go on...first sign of something gland or eczema related and we are in for a strep test...
Back to square one...literally
in PANS / PANDAS (Lyme included)
Posted
After months symptm free, last week Alex starting ticking again...he had had a swollen gland a week prior that had gone away with a increase of antibiotics and motrin at the suggestion of our neurologist...then woke up one morning with a fever, glassy eyes, headache, runny nose...brought him to the pediatrician to find it was strep...
obviously this means he has grown a resistance to the prophalactic Omnicef...Pediatrician gave him 10 days of Cleocin which is not penicillian based...we are on day 6 with drastic reduction in tics...
Now here's the BAD news...my neurologist is moving in two weeks...to Nebraska...I'm in NC...and the other neurologist in the practice will not take my son's case because she 'does NOT treat PANDAS'...and my ped is only cooperating at this point because I had a neurologist make an actual diagnosis who is handling most of his care...I am waiting on a phone call back for a possible referral to another neurologist in the area who DOES treat PANDAS...but the nurse did not sound hopeful...I have a new Rx for Azith to carry us through June...but what if he develops a resisitance to that in the meantime...and then after June...then what?
How exactly does a neurologist NOT take a case from her partner...when she knows my son in smack in the middle of another episode...as she had to help us out last week when my Dr. was out of town...I was told today that was a one time thing...
I don't know right now if I want to scream or cry...