First Episode for 5 yr old son

[dschneider]

I hope to have a follow-up appt with dr this week. Any input appreciated.

 

Nov 10th: Son had H1N1 vaccination, nasal mist, live bacteria

Nov 11th: Son spent day playing with his friend. Friend was diagnosed with strep following day.

Nov 20th: Sudden onset of facial tics. Some shrugging of shoulders.

Nov 20th: Trip to ER. Diagnosis was a childhood tic. Basically told to ignore, but to follow up w/pediatrician the following week.

Nov 24th: Pediatrician visit. Young dr we had not seen before. Not much information except to keep an eye on him and possibly see neurologist.

Nov 25th-Dec 3rd: Tics stayed about the same

Dec 3rd: Low grade fever

Dec 4th: Low grade fever, no tics. Complained of sore throat. I looked in his throat that evening and noticed red "pin-prick" spots. Thought I would take him to walk-in clinic

the next day (Saturday)

Dec 5th: Fever subsided, no complaints about throat. No tics

Dec 6th: Decided to go to clinic to have throat and ears checked before sending him to school the next morning. Throat and ears looked good per examination.

Dec 7th: Went to school. Tics began again.

Dec 8th: Tics increased in frequency and continued to increase.

Dec 15th: I saw picture of strep throat online (looked like red "pin prick" spots I had noticed in his throat on Dec 4th.) I called and made dr appt for next day with the pediatric dr

I prefer to see at office we go to. I went armed with research (At this point I had spent many, many hrs online). Much of my research from this site.

Dec 16th: Son tests very high for strep per the "quick" test done in office. Dr was prepared to start him on antibiotic either way.

Dec 16th: Son starts 10 days of Augmentin.

Dec 19th: Noticeable improvement in tics.

Dec 21st: I am not noticing full fledged tic (eyes roll upward, face stretches), a few eyebrow raises or half of an eye roll. Most often while eating...as if chewing stimulates the tic.

Dec 25th: Still improving. Less ticcing while eating

Dec 27th: Noticed a spell of "half" ticcing this morning. Improved through the day.

 

I can't say son has developed OCD symptoms, but tics were obvious, sudden and frequent. He is now on 2nd round of Augmentin. 10 day dose did not last 10 days. Seems to last about 8 days. I am making a follow up appt for this week. Should I insist/request to continue him on Augmentin? Until symptoms are completely gone? I don't know why, but today did not seem as good as prior days. Maybe my imagination, but I am keeping a diary, and will see how next few days go. If symptoms seem to be worsening would you ask for stronger doseage of Augmentin? Add Zith? Try Keflex? I, of course, want to be as pro-active as possible. Suggestions appreciated.

[T_Mom]

Dear Dschneider--I am so sorry you have had to find this forum, but hopefully the experience of others will be of help--

You obviously have read and have a handle on the abx possibilities. www.pandasnetwork.org is a wealth of info. in case you have not seen it--

 

Where do you live? Are you able to see a doctor that will prescribe abx for an ongoing trial? If the effects of abx have been positive I think it is vitally important to document, document, document as clearly as possible to help you determine the course of action. Beth Mahoney documented within every few hours of the day at one point--if you can do that and see if there is a trend it may help your decisions as to how to treat--

 

Dr. K (on his website www.webpediatrics.com) noted that if caught early enough his belief is that abx may be sufficient. All the best as you chart the course through this time--

[thereishope]

Welcome. If a child has PANDAS, the ideal is to keep them on antibiotics...period.

 

First, the antibiotics are used to erradicate the infection so healing can begin. Then the child stays on antibiotics to hopefully prevent another infection from occuring. Like when a child has rheumatic fever.

 

When I watched my child heal, I would have good days and bad days. Some of the bad days or setbacks as I called them would last up to 3 days before I would see recovery mode again. He would have times of plateauing as well. Bumps in the road are expected.

 

If your child was steadily improving, then you see dramatic setbacks that aren't going away, then a different antibiotic is something to consider.

 

My son had OCD (along with many other things), but no tics. So it's understandable how you can have the vice versa.

 

If your child can take Ibuprofen, many have seen that may help ease your child's PANDAS symptoms as well. Like a band aid.

[dschneider]

Dear Dschneider--I am so sorry you have had to find this forum, but hopefully the experience of others will be of help--

You obviously have read and have a handle on the abx possibilities. www.pandasnetwork.org is a wealth of info. in case you have not seen it--

 

Where do you live? Are you able to see a doctor that will prescribe abx for an ongoing trial? If the effects of abx have been positive I think it is vitally important to document, document, document as clearly as possible to help you determine the course of action. Beth Mahoney documented within every few hours of the day at one point--if you can do that and see if there is a trend it may help your decisions as to how to treat--

 

Dr. K (on his website www.webpediatrics.com) noted that if caught early enough his belief is that abx may be sufficient. All the best as you chart the course through this time--

 

T.Mom,

 

I had bookmarked his site, and per your post, went back and read Dr. K's site. I actually emailed him and his response was as follows:

 

"Generally two rounds of antibiotics should be sufficient and hopefully make him COMEPLETELY asymptomatic if this is indeed PANDAS and if this is his FIRST episode.

Sincere regards,

dr. K"

 

My son has a follow-up appt with pediatrician on Wednesday. I have not noticed any tic symptoms today...his best day since onset. Needless to say I continue to watch him like a hawk and will continue to document.

 

I live in Tampa, FL and, per this site have found the name of a Dr. Tanya Murphy who I will contact immediately if pediatrician and I are not seeing eye to eye on treatment.

 

I am grateful to have found this site. It is a wealth of information...

[T_Mom]

So glad you posted that note from Dr K.

 

Of course it goes without saying there is difficulty in that most of us may never have an accurate handle on just what/when the first "episode" was; or what behaviors constituted the first exacerbation. Regardless, antibiotics given when exacerbations show up has been key in our case. We did this about four times in response to BEHAVIORS which included OCD and mild tics, accompanying "illness" issues (sinus, temps., colds.) Finally just put our older d on full strength and left her on it--and gradually, over time she cleared.

 

If you want to read the personal history of various people (which has been very helpful to us) you can click on their name, and then go to the small options box on the left (located under their name)-- pull down the window and select to view ALL of their posts--) They should all show up.

 

I think back to times when the girls were young and showing "OCD" episodes which I dismissed as stages of normal development, so we are not certain just when the original episode was--

[dschneider]

Had follow-up appt last on Wednesday. Dr. did rapid strep test and he was negative. Tomorrow morning will be his last dose of antibiotic. He is 85-90% improved on the antibiotic, so I am nervous about the last dose. However, I am in the process of making an appointment to see Dr. Tanya Murphy and if he begins to tic after we stop the Augmentin, the pediatrician will keep him on the abx until we have appt with Dr. Murphy.

 

The pediatrician is wonderful although she may think I am over-reacting a bit. She thinks his symptoms will subside in a few weeks. That would be wonderful, of course, but in the event they do not, I am doing everything possible to be proactive. I keep reading this board, going backwards in posts, and everything else I can find. Sometimes I tell myself to stop looking for information. I don't want to make symptoms where there are none. Until this episode he was easily one of the healthiest, least likely children to get sick.

 

One day at a time. Trying to be knowledgeable...