Pediatrician stopped our antibiotics!

[airial95]

Our 2 year old son was diagnosed with possible PANDAS a few weeks ago and started on Azithrimycin. We noticed an improvement almost immediately (I posted about it previously). He finished his thrid course of abx on Monday night and almost immediately his syptoms began to escalate again - starting with the breakfast issues and the fatigue is back too.

 

We called the ped to renew the abx and he wouldn't over the phone, wants to see him again this afternoon to reassess. We were really pleased with the progress he was making and are going to ask the ped to keep him on the abx a little longer (especially since we were notified by day care today that both my son AND daughters class now has a confirmed case of strep!)

 

I'm hoping he'll agree, but if anyone has any advice, suggestions on questions or things I should bring up I'm all ears!!

 

Thanks!

Sandra

[earnestfamily7]

Hi - I am sorry to hear that you are having some backsliding upon stopping the abx... Even though my ped knows about PANDAS and the recommendation for long term antibiotic - I still have trouble getting them (it took us 3 1/2 years!!! for my son and I still dont think he is on the right one but we are moving in the right direction).... In any event there is a lot of information on the FACTS pages that I would present to her - give her anything that you can print on the need and success of long term use in PANDAS children.... I would give you the links but I haven't figured out how to do it yet.... The personal argument that I give is that I would rather risk long term antibiotics than brain inflammation.... at the very least it gets the Drs attention.... Also be sure to give the information on how PANDAS kids react to others wit Strep even if they do not have it themselves.... If your ped is willing to listen and discuss this go armed with as much information as you can.... Good Luck!

Steph

[thereishope]

Is your ped the one who mentioned the PANDAS dx? I ask since that may make it easier to convince him to continue. You can throw the phrase " PANDAS is like RF of the brain. Prophylactic abx are used for Rheumatic Fever".

 

 

The exposure to strep you child had can also be contributing to an upswing in behaviors. Double whammy...going off abx and exposure.

[thereishope]

If your ped says he'll give abx depending on results of a strep test, remind him that there is a possibility of a false neagative and you cannot get the "true results" of a strep test until 3 weeks after finishing abx.

[airial95]

He is the one who initially presented the PANDAS diagnosis, so I'm hopeful that he just wants to see him and make sure that there's nothing else going on, no ill effects from the abx so far.

 

But I've always been a glass half empty kind of person - preparing for the worst and hoping for the best. I guess it's the old girl scout in me!

 

Thanks for the help!

[airial95]

Thanks again for all of your help and support! He started up the azithromycin again, just wanted to see him before he renewed to get a more detailed look at how his behavior had changed and also to make sure that the extended abx weren't having any negative side effects. He also said that with PANDAS it's not unusual for him to have to be on abx for an extended period of time until all of the symptoms are abated.

 

He gave us a rx for another 2 courses and wants to do a quick follow up again then just to make sure the little guys not having any negative side effects. (Since I know he'll want to see him again, I'll make the appt ahead of time so he doesn't lapse off the abx!)

 

He also suggested that we think about seeing a psychologist with him for BCT. He's not pushing the issue, said we'd discuss it further after we see where this course of abx leads us, but that my husband and I should start thinking about it. He just seems so young (only 2) - could this really be helpful?

 

It took about 2 days back on the abx for us to see improvement again, but it's there (I got to pour his milk for him this morning! Baby steps right?)

 

When he's on the abx though, he really takes a huge step backwards on the potty training. He was almost 100% there, and when he's on the abx there's lots of accidents, and forgetting. The Dr. says that it's to be expected because of the "frequent urination" aspect of PANDAS. Has anyone else seen this in their young PANDAS child?

[colleenrn]

Sandra,

The backsliding with potty training occurs in my 3 year old and is sometimes the first symptom I see.

 

A super quick history on my family: 4 kids, ages 13, 9, 7, and 3. The oldest 3 have been on Zithromax since October 2008 (so for 16 months) ,but my youngest I have not put on prophylactic antibiotics just yet- that is where we are headed. He has been on 20 days of Zithromax, probably about 6 -8 times over the past year. When he is not on Zith and gets exposed to strep or has strep, he immediately starts having accidents. I never really saw that in my other kids. I would tend to think it is not b/c he is ON antibiotics that your child is backsliding with potty training, but that it is just a PANDAS symptoms that will get better while on antibiotics. It is really hard in the young children to terase out what is "normal" 2 and 3 year old behavior and what is PANDAS.

Colleen

[smartyjones]

I would tend to think it is not b/c he is ON antibiotics that your child is backsliding with potty training, but that it is just a PANDAS symptoms that will get better while on antibiotics. It is really hard in the young children to terase out what is "normal" 2 and 3 year old behavior and what is PANDAS.

Colleen

 

 

my son presented with extreme symptoms last fall - sept/oct 08. a little over a full year prior, we had done potty training in 1/2 day that worked like a charm with my older. not this one - he developed an intense phobia of the potty. he held it as long as he could each day for about 2 weeks. during that time, he threw up. i took him in to be seen, the dr thought his throat looked like strep, rapid and culture were neg. he continued with this phobia for over 2 years until i treated it like a phobia with systematic desensitization. still now, he does things with potty delay - usually worse if he's seeming to be in exacerbation.

 

early on in posting here, someone told me they had never heard of a pandas story without some kind of potty issue or trouble.

[airial95]

Our pottie problems went the other way. He would go to the pottie every 20-30 minutes or so, on his own (without being reminded) and would pee, just a bit. We originally thought it was just the thrill of the excitement (our pottie dances were quite the extravaganza), but this went on even after we ended all of the crazy positive reinforcement.

 

Until we started him on the abx and saw the backslide (which is more normal 2 yr old behavior like getting so focused on playing that he has an accident - prior to abx that NEVER happened). When I mentioned it to the ped. he indicated that in older kids, frequent urination - usually in small amounts - almost obsessing about having empty bowls and bladder isn't uncommon for PANDAS. We're not sweating it too much on the potty thing. I'd rather have accidents and no meltdowns than the potty trained alternative. Besides, he just turned 2 at the end of Oct!

 

But it is very hard to tell the difference between PANDAS and typical 2-year old behavior. If we hadn't seen the dramatic difference when he started the abx, we would've continued to think we had the most "terrible twos" in history!

[thereishope]

CBT for a 2 year old? Maybe someone else has done CBT with someone that young can chime in, but the psychologist didn't even attempt CBT with my then 5 year old because after one appt she saw it wasn't right for him. My son did well with ERP therapy I pretty much did on my own with him. What you can do is call the children's hospital, they'll ask for why you want an appt and they willl match him up with a therapist who is used to working with childrne that young. It could be a few months wait time. With my son's psychoogist, I actaully met alone with her every month to give feedback and get advice. it worked well for us. It doesn't hurt to see a pscyhologist and see what they say, but I am being honest...CBT might be too hard for a 2 year old. But , then, every child is different.

 

Meg's mom did a whole thread devoted to OCD books. I only read one book when I was trying to ovecome my son's OCD. "Freeing your Child from OCD". I learned a lot from it.