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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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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.

 

 

 

Well, this just supports what's been going on with my daughter - sometimes a positive strep culture with flares and sometimes nothing more than a cold or virus that will set things off. So not all PANDAS children are limited to just being triggered by strep - it's the other stuff that's harder to deal with because the antibiotics don't work on them. Pat

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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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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.

 

 

Yes, this is a familiar pattern -- though tic is minimal with our dd OCD showed up with each "cold" this past fall-winter -- now on antibiotics and no such out break for 3 months.

 

Good luck with the upcoming appointments. I would just encourage you to keep doing exactly as you are, looking until you find someone who can assist in a meaningful, ongoing way. It is easier said than done, but keeping a thick skin and persevering on all sides is tantamount to finding help.

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HI,

Just my 2 cents here...

if any child has an infection...WHY are our highly trained pediatric physicians giving vaccine and booster shots when they are recently symptomatic ..and

why not just wait until infection is cleared!!! :)

Your child had a very obvious infection, sore neck, fever and lethargy......steps to meningitis...hello.........

Your pedi gives him a chickenpox booster...?????

 

Please read and and remember ..you are the Mom and need to be educated about symptoms, and advocate for your child...tell dr to wait till child is well again.............check it out at ...

http://www.emedicinehealth.com/meningitis_...en/page3_em.htm

 

His immune system is on overdrive, hopefully he will balance out and be well again soon.

 

Hope for fast healing for your son!

C.

 

 

 

 

 

 

 

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.

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Lisa,

 

I can only read your post and shake my head sadly. Please, Please, Please find a different pediatrician. The chances of you changing his mind are slim. That isn't your issue to resolve anyway. I am so glad you already have appointments with other physicians. Just don't get your hopes up to high. Sometimes you get lucky and find a "believer", but not always. You really need a good primary care physician that is supportive and on board with his diagnosis. He obviously has auto-immune, illness induced issues. My guess is PANDAS. Thank goodness you are looking else where for help. Good luck!

 

Dedee

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Your child's initial symptoms on Jan 19th (swollen lymph nodes, fatigue, fever, sore neck ) sound a lot like what my daughter went through around New years. Our pediatrician diagnosed it as tonsillitis and, of course, strep culture was positive. When thinks were no better with the Augmentin on New Years Day, we saw a covering physician who said Mono. and the Epstein Barr panel was positive for this virus.

 

THe other odd similarity, my daughter ended up with the rash too-a rxn. to the augmentin (penicillin) and Epstein Barr. In fact, the doctor who saw the rash on Jan. 7th couldn't believe they hadn't stopped the penicillin type ABX and changed to a different class of drugs b/c it is a possibility for this reaction. Allison's rash was "goosebump like" all over her body, but highly concentrated on her hands, torso, legs, & feet. The rash took several weeks to completely clear. The rash never itched her, it just looked terrible. We knew this wasn't a reaction to the penicillin itself, as she had been on it many times before and has since then.

 

Just curious if your child's rash was similiar-I've been wondering about the Epstein Barr connection to all of this? Could it be possible that this was te virus he had that went undiagnosed? My daughter was clearly Mono, as she lasi on the couch with fatigue for at least 4-5 days straight, with a huge swollen neck. She has never gotten sick with the strep (only behavioral symptoms) so it was clear we were dealing with something different.

 

Amy

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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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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?

 

 

A pediatric rheumatologist was very helpful for us. Even though they did not give my child the steroid burst and IVIg...they did agree with Dr. K's plan that it was probably the best option for treatment of her specific condition, given the history and tests that had been done. They said that they might have done it if we would have lived closer so that they could monitor her.

 

http://en.wikipedia.org/wiki/Rheumatology

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An immunologist might also be worth trying.

 

Great point..... I completely agree. This would have been our next visit if we hadn't seen dramatic results with the steroid burst and IVIg. We had gotten a referral for an immunologist as well. We still might end up looking into this avenue at some point.

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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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I just wanted to comment on a possible cause of the rash. When you have mono and take Amoxicillin (and penicillin) you can break out in a full body rash. When I was 11 I had mono but we did not know it until I was put on Amoxicillin for an ear infection and broke out in an all over body rash. When my mother brought me back to the pediatrician and he saw the rash and knew I was on Amoxicillin, he immediately suspected I could have mono. He tested me and it was positive for mono. Maybe this is what happened with your child? If the doctor knew your child had mono they should have known to not use Amoxicillin or penicillin.

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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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