My 7 yr old daughter diagnosed with PANDAS.....

[MrPGAPro]

My daughter has been diagnosed with PANDAS (last Thursday...3 hour consultation with Dr. John P. Williams www.mainlinefamily.com)

 

She had a strep throat infection around Easter this year, and she had steadily began minor OCD issues (fertilizer contamination, germs in her mouth, etc..) about 4 weeks ago, with thhem increasing daily. My wife did some research on these issues and discovered PANDAS.

 

My daughter has ALWAYS been the "careful" type (like her mother)...but the issues had started to be over the top, with a huge "meltdown" (tears, everything is dirty, etc...)

 

My wife contacted CHOP..(Childrens Hospital of Philadelphia) and they pointed us to Dr. Williams. It was a "miracle" that we were able to get an appointment the next day!

 

He immediately started her on Penicillin (3 doses a day)...and it has been nothing short of a miracle, they way she has been acting (OCD issues are 90% gone, and the 10% remaining are minor, they may last 1 minute with minimal intensity).

 

My wife and I are still very "skeptical and hopeful" about her miraculous progress.

 

Just thought I would share a positive story with everyone.

 

I do notice that we are "over" sensitive to her behavior (good or bad)...guess thats normal.

[Kayanne]

I'm sorry that you are here, but Welcome. It is the best source of information about PANDAS. Another awesome source is www.pandasnetwork.org

 

I am SO HAPPY to hear that someone from CHOP has helped your daughter. My experience (and some others) has been pretty negative.

 

How long will Dr. Williams keep your daughter on Penicillin? Can you tell us your daughter's weight, and what dose the Dr. prescribed?

 

Being overly sensitive to our Childrens' behavior is normal for a PANDAS parent...However, it is important to keep a close watch...some things (like temper tantrums, inflexibility, and crying) that on their own could be considered normal...are very common PANDAS symptoms.

 

I am so happy that she is responding well to the antibiotics, but if you begin to see a slip back, or a plateau, I would consult with Dr. Williams about a different antibiotic. Penicillin and Amoxicilin don't really have a great track record with PANDAS. Most of the parents on this forum use zithromax or augmentin.

 

You might even consider adding in prednisone after about a month, to help speed her recovery out of this PANDAS episode.

 

Here is an article that explains why pen and amox don't work so well against strep:

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

~Karen

[thereishope]

Welcome. It's great to hear you are already seeing improvement! Make sure to test all family members for strep as well, even if they do not have any symptoms. Did the doctor say whether he will continue her on a prophylactic antibiotic once he believes the infection is under control? Also, with penicillin, I have heard a few times where it worked at first then after about 2 weeks, then they see backsliding. If this occurs, then I strongly suggest you ask for a switch in meds to either Augmentin or Zithromax. You can try the penicillin for now, but if it all comes exploding back,she probably needs a different antibiotic and don't wait to long for the switch. Hopefully, that will not happen.

 

Best of luck and hopes and prayers for a continued recovery.

Edited June 9, 2010 by Vickie

[MrPGAPro]

My daughter is 47lbs, she was up to 50lbs., but had lost weight. She wasn't eating very well. She is eating like a "horse" now, telling us the Dr. said she needs to gain some weight.

 

He prescribed 6ml in AM, 6ml lunch time and 7ml before bed for a month.

Edited June 9, 2010 by MrPGAPro

[saidie10]

Welcome. It's great to hear you are already seeing improvement! Make sure to test all family members for strep as well, even if they do not have any symptoms. Did the doctor say whether he will continue her on a prohylactic antibiotic once he believes the infection is under control? Also, with penicillin, I have heard a few times where it worked at first then after about 2 weeks, then they see backsliding. If this occurs, then I strongly suggest you ask for a switch in meds to either Augmentin or Zithromax. You can try the penicillin for now, but if it all comes exploding back,she probably needs a different antibiotic and don't wait to long for the switch. Hopefully, that will not happen.

 

Best of luck and hopes and prayers for a continued recovery.

 

Great news for your little one and your family. Hopefully she will continue to improve! Take the advise the others have given though as they know a lot about this stuff! You have come to the right place for support!

[Kayanne]

My daughter also lost a 3-5 lbs each time...so many kids deal with this.

 

So if your liquid pen concentration is 250mg/5ml...then 6ml is 300mg, and 7ml is 350mg. That is a good dose...just above the 250mg treatment dose for kids.

 

Do you know how long the doctor is keeping her on this?

 

Best of Luck!

[Phasmid]

Wow! Fantastic story. In kids that are caught very early, it is amazing how fast the turnaround is once antibiotics are started. Wish it was so fast for more chronic cases. My son was caught early and responded very quickly. However, one year later we are dealing with residual issues, but not life altering like some of the folks you'll read about here in this forum. Ours are minor in comparison. One recommendation is to make sure your child stays on long enough to prevent relapsing, as subsequent episodes can be more difficult, from what I read in this forum.

[MrPGAPro]

Is to think that the penicillin can "cure" this being unrealistic?

 

I have heard from many people that diagnosing and treating this early is very important for my childs long term outlook. The Doctor was very "impressed" that we acted on this so quickly.

 

He will have her on the antibiotics for 30 days...

 

Also, my daughter knows she is not feeling well, and was very excited to go to the Dr. and take medicine to help her feel better....

Edited June 9, 2010 by MrPGAPro

[Fixit]

yes you can have complete remission....we used to..i hope that is the case for you!!!

if i could go back...i think i would(but as i write this..i realize i couldn' have found a doc to back me up)

would be to keep him on a propholactic dose indefiniely...

and at one point they discussed taking out his tonsils...i think maybe i should have gone for it

[MrPGAPro]

The 1st day on the Penicillin she said to us "Wow. Mommy no fighting and crying today....the medicine must be working!"

[Fixit]

ps ..please remember to give probiotics...as now i believe we have gut issues that may be complicating things.....

[smartyjones]

 

 

 

Edited June 9, 2010 by smartyjones

[MrPGAPro]

Her symptoms were minor OCD, with more frequent "blow ups" , no tics, a little spacey, school work was still good, coordination good, gymnastics class good, just not being herself.

 

I do think the power of the mind is amazing!!

 

I contribute alot of her sucess to her "believing" she is getting better with the medicine and her understanding that the there are reasons she does not feel well...maybe Im a little over the top with this...but?

 

Also, last friday walking the dog, I got on my knees in tears and prayed to God to help my little girl..

[P_Mom]

MrPGAPro...I sent you a personal message....check your messages.

 

I believe, atleast I know my husband and I have several times (and continue to do so) that almost all of us have gotten down on our knees in tears and prayed.

[Phasmid]

My son also notices when he feels "better"

 

He has told me "Mom, aren't I listening a lot better lately? Bless his heart.

 

Regarding the probiotics...

 

"Reseeding" the gut as you treat with an antibiotic is EXTREMELY important. I don't agree 100% with the use of a very high potency formulation for several reasons that I won't post here. But you do need to give something; look for a blend having some form of Bifidobacterium , or Lactobacillus bifidus bacterium, as these are what are found in highest numbers NORMALLY in a healthy person's gut. As "prebiotics," raw vegetables and fruits are very important too, in order to support the recolonization of good bacteria.