New here - seeking answers for 12yo with PANDAS?

[nicamom]

In September of 2011, we started the nightmare it seems most of you have also experienced.

 

My 12yo daughter started having severe rages. Prior to each rage, she would tell us she didn't feel well, then she would rage (violent outburst) for 1-2 hours before finally falling asleep and not remembering most of what happened. She also exhibited increased anxiety when she wasn't raging. She had two of these episodes in September and we went to the ped. She basically told us to take her to the hospital if it happened again. What happened to our child? This was NOT her!

 

October 2011:

• 
   
  
• Another rage lasted several hours. We took her to the ER (had to hold her down in the car because she was trying to jump out).
  
• They gave her benedryl and sent us home and a psych consult for the next day. (!!!)
  
• She ended up running away. We found her and she was admitted to the local psych hospital for 5 days, then 5 days outpatient.
  
• They said mood disorder, perhaps bipolar and started zoloft.
   
  

 

November/December 2011:

• 
   
  
• Added Abilify in November. No change. Another rage occurred over Thanksgiving.
  
• Just after Thanksgiving, she got bronchitis and started antiobiotics. After two weeks, she was still sick so they did another round of antibiotics (she ended up being on antibiotics the whole month of December). Interestingly enough, Thanksgiving was the last time she officially raged. However, the underlying anger and anxiety persisted.
  
• Christmas 2011: Started Lamictal.
   
  

 

January 2012:

• 
   
  
• Continued to titrate up on Lamictal. No more rages, but persistent anxiety and anger.
  
• Asked (again) for an EEG because my sister has epilepsy. Finally got EEG and... it was abnormal in temporal lobe region. Saw ped neurologist (Dr. Shafrir in Baltimore) who said it could be temporal lobe epilepsy, but wasn't sure.
  
• Neurologist requested blood work: Anti-DNase B Strep Antibodies = 386, negative for Lyme
  
• Dr. Shafrir suggested a PANDAS diagnosis but said the case is too complex for him and suggested another psych doctor!! Very frustrating!!!
  
• Therapist adds ADD to list of potential diagnosis.
  
• Started weaning off zoloft
   
  

 

February 2012:

 

• 
   
  
• Finally hit "therapeutic level" of Lamictal (150mg) and anger literally disappeared. Huge answer to prayer!
  
• Residual symptoms include obsessing about nominal stuff, anxiety, memory issues, brain fog
  
• Finished zoloft
   
  

 

March 2012:

 

• 
   
  
• Psych talked us into restarting the zoloft (higher dose) to try and abate residual symptoms
   
  

 

April 2012:

 

• 
   
  
• No change in residual symptoms with higher dose of zoloft
  
• Got strep over Easter
  
• 10 days of antibiotics finished 4/17
  
• 4/25 - therapist tells us again that ADD symptoms are high and need to be treated
  
• 4/26 - showing signs of Strep AGAIN!
  

 

RELEVANT? HISTORY:

• 
   
  
• Unexplained seizures at age 2. Normal EEG at that time.
  
• Vomiting every day for 30 days at age 4. Tests revealed high levels of inflammation in gut (sed rate of 101). Treated with powerful anti-inflammatories for 3 months to resolve symptoms. Saw rheumatologist who found no additional issues.
  
• Six cases of strep between 2nd and 3rd grades
  
• Saw significant increase in anxiety level starting in third grade
  

 

So now what??? Anyone have any good suggestions for doctors near us that could help? Does this match any of your kids' stories? Could longer term antibiotics help?

 

Wendy

[smartyjones]

not to bash -- only to caution -- if you go to Johns Hopkins, please be very sure you are fully aware of the PANDAS history with JHMU and the key players there -- there is info on this forum if you do a search

 

 

[dcmom]

wendy-

 

I am sorry you are experiencing this

 

I have two daughters, 11 and 8, with pandas. They had sudden onset 3 yrs ago with strep.

 

You are lucky to be in Baltimore. The best pandas doc is in Bethesda, MD. Make an appt today- she is usually booked out for months. Her name is Dr Elizabeth Latimer. She is a neurologist. She has treated both of my girls. She is a very kind and compassionate doctor.

 

For persistent strep- I would try clindamycin.

 

Until you can get to Dr Latimer, I would keep her on antibiotics (if possible) and try dosing her with advil. I would try dosing her at the max dose for five days, and then maybe once per day for a couple of weeks- if this helps. Advil helps my kids- but it didn't help when they were at their worst.

 

We found it very helpful to have a therapist as well.

 

Good luck.

[PowPow]

ditto on what dcmom said about Dr L.

She sees three of my kids who have PANDAS/PANS. I am not exaggerating to say that she has saved the life on at least one of them. not exaggerating one bit.

The other two she has saved from mental anguish and tics, but they were not at the most severest point, at least not for very long. She is a great doc. Call today and it may not be until late summer or fall but tell them you live close and will be there in a heartbeat for a cancellation. And yes, Baltimore is "close" to Bethesda in the PANDAS sense of geography. I thought I was traveling far to see her from the far off rural VA suburbs. HA-- I think the first day I was in her office there was someone from Indiana.

Try the advil and get abx if you can! Did anyone address that high ASO in Jan? Can you get abx for that - or get a throat culture or titers redrawn now? Of course, strep is not the end-all be-all of this anyways..

 

best wishes!

[nicamom]

Thanks! The tricky part is that we are going overseas for a year starting in July... I did call Dr. Latimer's office and they said they were booking for end of August. I did put us on the cancellation list.

 

In the meantime, I faxed all this information to our existing p-doc, as she is very interested in PANDAS (even though she hasn't personally treating a child with it before) and willing to at least consider it.

 

No, she has not been on antibiotics since December, and the blood draw was in January.

 

I looked at some of the other symptoms and lo and behold... this all started with us going to the ped twice in August/early September because she was repeatedly wetting herself during the day. They took cultures but couldn't find any reason for it... Also, I wrote in my journal back in November that I noticed her handwriting had become atrocious. Weird! Are those really symptoms?

 

We've been told to avoid stuff like advil because it causes upset stomachs in kids who are on anti-seizure meds. They told us to stick with Tylenol, but that doesn't have the same anti-inflammatory properties obviously. I may try it anyway and see how she does. I'm hoping for some antibiotics from the p-doc. If not, I will take her to the ped and try that route.

 

So frustrating!

[bulldog24]

So sorry for your battle!

 

I can only write a brief message on my phone, but your child might qualify for the NIH ivig study. Its for kids from 4-12

 

If she qualifies, it will not cost you anything. My son has been going and has done terrific.

[bulldog24]

Also I would get a copy of the lyme test. Sometimes there are indicators even if the whole test is read as neg

[nicklemama]

Go see Dr Latimer. She's the expert in your area. As for the lamictal, it does indeed cut down/out the rages. That was our experience w/ my son. Don't be fooled. Its still PANDAS.

[PowPow]

can't speak for advil and seizure meds but I am trying this right now for my flaring 7 year old & it really seems to help. Can you try it, maybe give a prilosec way before the advil?

The study is a great idea, too. You might be able to.fit that in before july.

Where are you going overseas? You might be able to find a pandas connection there? Our little latitudes forum is going international lately!!

[1tiredmama]

Welcome to the forum, Wendy! I took my son to see Dr. Shafrir in February. He said my son was a "complicated" case and asked if I'd ever ruled out PANDAS. We made an appt with Dr. L. in Bethesda (3 months out.) We see her in three weeks.

 

I'd like to ask you some questions. It is late, and I'll be driving my kids to Baltimore to see their pdoc tomorrow (after work,) so I need to get some sleep. I will send you a private message tomorrow.

Edited April 27, 2012 by 1tiredmama

[tpotter]

Ditto on PowPow and DCMom. My DS16 has had the same kinds of rages (only no warning first, and we had to escape with our lives at times...literally) Same abnormal eegs (7 of them in the frontotemporal lobes). DS16 is now on Lamictal, and it helps tremendously, but he's also on another one as well. He's been sick for 8 years, and was only diagnosed 4 years ago. 3 separate neurologists have agreed that the seizures are probably related to his PANDAS, including Dr. L. I would call for that appointment today.

 

One word of caution, though, make sure you leave her office with a followup appointment...at most 1 month apart from the first. You may not be able to get hold of her in the meantime, and you are going to want to know that you have followups coming. Also, make sure you have a pediatrician/family practice (whatever you use) who will followup, and hopefully be willing to "coordinate" care. They're hard to find, but even if you have one who "gets it", and doesn't fight you, and will at least run blood tests to determine if strep or any host of other infections may have come back, you are doing well.

 

Also, again, about JHU. I know it's tempting to try them, but other than one doctor over there who actually helped write the white paper (and he's more of a researcher than a clinician), for the most part, JHU does not believe PANDAS exists. Same goes for CHOP (there's one, but she's limited as to what she can do, because she doesn't have much if any support from the hospital as a whole (btw...I'm not bashing, just stating a fact.)

 

Dr. L. is not the only PANDAS doc, but she's the closest, and really knows what she's doing. Also, since you are dealing with seizure-like activity (remember, Lamictal can help with both seizures and as a mood stabilizer), I would recommend at least starting with a neurologist, and Dr. L. fits that bill.

 

I would also suggest that you keep an open mind to the possibility of more than one infection-type (not just strep,) as many of us are finding that because of the immunity issues with this disorder, our children have been exposed to, and are suffering from more than one infection (even when it doesn't appear that way.) PM me if you want more information.

[nicamom]

Wow - here and I have felt SO ALONE, but you all seem to know exactly what I've been going through! I wish I had found you sooner, when I spent so many days in a row sobbing and begging God for a miracle.

 

In January of 2011 (well before any of this started) we started praying about spending a year in Nicaragua, working with my father-in-law's mission project there. Once November rolled around, it looked like there'd be no chance of that dream becoming a reality. But then, when the Lamictal kicked in in February, it felt like we got our miracle and we continued our plans.

 

We leave for Nicaragua on July 24. The girls will go to school there and they are both super excited about it. Interestingly enough, I can get antibiotics there without a prescription, so I could perhaps dose her myself if I can figure out the best course of action. We are meeting with the pediatrician today. I really hoped we'd get in to see Dr. L before we leave, but I guess that will take another miracle, we'll see if they get a cancellation between now and then.

 

1tiredmama - I'd love to chat when you get a chance!

 

Thanks again - it is so great to feel like others understand what we're going through...

[dcmom]

nicamom-

 

You are not alone!

 

I would HATE to see you go to NIcaragua without a plan of action

 

If you cannot get into Dr L- I would suggest that you take a trip up to NJ to see Dr Trifiletti. Let him do some bloodwork to screen for any other issues- he is a neurologist, super smart, and really gets pandas.

 

If you can get antibiotics and maybe prednisone in Nicaragua without prescription (and are relatively sure it is safe- I have no idea if there are issues there) then IMHO you are set - just talk with doc to figure out what dosages you might take, etc.

[nicamom]

Can I just tell you how lucky I feel to have the pediatrician we have?! She met with us tonight, reviewed all the stuff I printed out for her (from Dr. T) and agreed to a plan:

 

1) Test all members of the family to see if any of us are carriers.

2) If anyone is a carrier, treat that carrier and then treat DD12 with a full-strength course of antibiotics, followed by a 2-month prophylactic trial.

3) If no one is a carrier, treat DD12 with a 2-month prophylactic trial.

 

If the trial helps the residual symptoms she's been experiencing, we can continue it in Nicaragua. If not, then we can reevaluate, but at least we will have tried something under a doctor's supervision before going to Nica.

 

SO happy to have a plan!

[T_Mom]

I am so sorry you have had to find this forum, but at the same time I am glad that you did--

We are in MD and have seen doctors at JHU (in the past), -- before we found a doctor willing and ABLE to treat PANS / PANDAS -- Dr L in Bethesda.

I would be happy to speak with you at anytime on the phone, just pm me.

 

I applaud your persistence in working with the doctor you are seeing, however--we have all found that if and when a return episode comes back, and it gets worse, that this is NOTHING to wait around on and leaving treatment until "later" can make your life, well, unbearable might be a very weak term to use (not to mention robbing your child of a childhood.) --sorry if I sound like I have regrets, I do. I was scared of IVIG for much, much too long and my children suffered because of it--

 

If I were you, I would have your doctor call Dr L to see what blood tests to do, and what antibiotic she then recommends. Full strength Amoxicillan for a 30 DAY period has helped some, other children have been helped with a 30 day trial of Azithromycin, others with Augmentin XR (extended release.)

Both of my girls have been on antibiotics continually for the past 2 years, full strength.

 

A 10 day trial will typically do little to nothing.

 

Dr. K in Chicago (www.webpediatrics.com) typically recommends a one week steroid burst to "test" if it is PANDAS.

 

Dr L also makes use of steroids to bring symptoms under control.

 

IF your child responds well to steroids that is thought to be a clue--likewise with antibiotics...but DON'T stop there--

 

many of us did, and within 3 to 6 months our children, when exposed to even strep in others (ie., they don't get it themselves!) their OCD/ticcing flairs and the cascade of behaviors etc. starts up again.

 

Dr L will not leave you hanging, she would provide a thorough review and medications as needed --Please, consider calling her office again as your case is really an urgent need given that you are leaving for a year.

Edited April 29, 2012 by T.Mom