Daughter might have PANDAS or PITAND. Please Advise

[Betsy]

Hello all. I am thankful to find this site. I stayed up late last night and have been online off and on all day today, because I think my three year old may have PANDAS or PITAND. That looks so plain and simple in black type, but I'm so concerned. She had a horrible three week episode this past summer that we attributed to Singulair, but she recently got her first real cold since then, along with an ear infection, and did a round of Amoxicillin. The behaviors came back! We thought she was having a reaction to the Amoxicillin or to Benadryl or to the dye in the antibiotic, but after reading so many of your stories, I think she must have PANDAS! It's like reading about my own life on this forum and the other sites I've seen that describe episodes. Down to the way her pupils look, and the anxiety she's having!

 

We have not confirmed a strep infection; she's never even had a sore throat... What do I do? What tests does my pediatrician need to run? Do I need to see a neurologist, psychiatrist (would rather not), do we all need to get tested for strep? I have recurrent sore throats but haven't tested positive for strep throat since I was little; could I be the carrier? (Mommy guilt, always has to be our fault we think...) I have an infant, will he be prone to this too? So many questions, so many fears, where should I start? We're going to have to live from one cold to the next, one childhood illness to the next? Help! Such a beautiful, verbal, sweet, polite little three year old! Standing beside me in a princess "wedding dress" asking me who will be her prince charming, having a good moment, as I write this. Truly a gem! Want to protect her from everything... Oh, God!

[Kayanne]

Betsy,

 

So sorry your going through this, but you did find the right place. Go to the top of the forum, and click on helpful threads, and read as much of that as you can...I think you will find many of your questions answered there....if not, do not hesitate to post your question.

 

What part of the country are you from? Based on that many on this forum can give you reccomendations for doctors.

 

Get every one in the house swabbed for strep...step one in getting this under control is getting the infection under contol.

 

Is she done taking the amoxicillian? Did you notice her behaviors improve while on the antibiotic? What types of behaviors?

 

Strep can be in the mddle ear too, but the only way to test it is if your daughter's drum perforates from the pressure...this doesn't happen often (but it did twice to me--go figure!)

 

Best of luck (hugs)

~Karen

[earnestfamily7]

Hello all. I am thankful to find this site. I stayed up late last night and have been online off and on all day today, because I think my three year old may have PANDAS or PITAND. That looks so plain and simple in black type, but I'm so concerned. She had a horrible three week episode this past summer that we attributed to Singulair, but she recently got her first real cold since then, along with an ear infection, and did a round of Amoxicillin. The behaviors came back! We thought she was having a reaction to the Amoxicillin or to Benadryl or to the dye in the antibiotic, but after reading so many of your stories, I think she must have PANDAS! It's like reading about my own life on this forum and the other sites I've seen that describe episodes. Down to the way her pupils look, and the anxiety she's having!

 

We have not confirmed a strep infection; she's never even had a sore throat... What do I do? What tests does my pediatrician need to run? Do I need to see a neurologist, psychiatrist (would rather not), do we all need to get tested for strep? I have recurrent sore throats but haven't tested positive for strep throat since I was little; could I be the carrier? (Mommy guilt, always has to be our fault we think...) I have an infant, will he be prone to this too? So many questions, so many fears, where should I start? We're going to have to live from one cold to the next, one childhood illness to the next? Help! Such a beautiful, verbal, sweet, polite little three year old! Standing beside me in a princess "wedding dress" asking me who will be her prince charming, having a good moment, as I write this. Truly a gem! Want to protect her from everything... Oh, God!

I am so sorry that you are going through this mess... but am glad that you found this site. I recently found it too and it has been a wealth of information. It is also a great place to ask questions. there are so many helpful and knowledgeable people who will try to help. I am by no means an expert. I can tell you that it is important to get a doctor on your side. Try your pediatrician 1st.... give her/him printouts of the information that you find... you will likely be refered to someone for additional test but keep you ped on your side... they can at the very least get you the antibiotics you need to fight this... it tok me a while to win mine over... but she has come to see the med. works... right now I am tying to convince her and our infectious disease dr to change the antibiotic...

 

if it i were in your shoes i owuld take her in for a strep test and blood work... my son never had a sore throat either but tested positive for strep after someone told us to go in.... I called the dr and basically lied to the receptionist to get in and then gave the story to dr... you will need to know exactly what to ask for if you ped. is not familiar with PANDAS and most are not... I will try to look for the blood lab links that were forwarded to me when I asked just last week...

 

if anyone else reads this and has the links and knows how to link please provide them (I am sure I can figure it out but it wont be until all 5 are asleep that I have time to actually read and research .

 

You found the right place... go with your gut instincts.... that is what has brought me this far as there are many doubting drs out there... find one that will work with you.... my ped is working with us in part but not entirely - she relies on me to give her the information and then we take itty bitty baby steps... but atleast it is step... in the meantime I continue to seek specialist... we communicate with Dr K via email and he will do a phone consult with you (he is in Chicago)

 

In any event, know that you are not alone - I hope your daughter is well soon

Steph

[thereishope]

Welcome.

 

I have heard others say their PANDAS child had a bad reaction to Singulair. If she is still taking that, I would suggest changing to something else.

 

Take her for a strep test ASAP. If the rapid comes back negative, make sure they culture it. Also try to get something stronger than amoxicillan. Most kids see the most success on Zithromax and Augmentin. My PANDAS son did not have classic strep symtpoms, yet he wil have strep. No sore throat, no fever, nothing. Since then, I've found out none of my kids get symtpoms when they have strep. Also, get everyone else tested too, including adults.

 

Am I correct in thinking she is not on any antibiotic right now? What are her PANDAS symptoms (OCD, tics, other behvaior changes)?

 

Please take her for a strep test in the morning.

[mama2alex]

Betsy,

 

Welcome - I'm glad you found this forum. I'm sorry to hear about your daughter, but you are in the right place and will get the answers you need. We first thought our son was having a reaction to medications as well. He had pneumonia at the time and was already on a high dose of Amoxicillan plus asthma medications. It can be tricky to figure out, but it sounds like you are on the right track. I agree you should get a throat culture asap. I've also read about kids on this forum who've been found to have vaginal strep, anal strep, strep on the skin and in the gut. I've also read it can also go intracellular, so if the culture's negative, don't give up. Next step would be to get blood tests for ASO and Anti-Dnase B titers. These MAY be elevated after a recent strep infection, but if they're not elevated it doesn't mean she hasn't had strep.

 

Has she had frequent infections? A number of these kids have some sort of immune deficiency, so you may want to work with an immunologist to check into this.

 

The most important step, from a long-term perspective, is to find a doctor in your area who knows how to treat PANDAS. For that, you should look for recommendations on this forum. Also Beth Maloney, who wrote "Saving Sammy" has a list of doctors recommended by parents all over the country. If you can't find a doctor in your area here, you might email her at info@savingsammy.org and request a current copy of the list.

[Betsy]

Okay, so my pediatrician seems willing to work with us on all of this. I'm planning on taking my daughter in this afternoon for the strep test, will make sure they culture it. I guess he'll know how to test for strep in vagina, anus, skin, and how would you check gut? She has ALWAYS had very soft bowels. Right now she does have some redness on her hands and her buttox cheeks. I'm not sure he's going to know how to check that really. Any advice there? He's never dealt with anything like this, gonna try to find a doctor in Houston that may have seen more. Still working with original pedi in the meantime, so we'll get him to check for ASO and ANTI-Dnase B? Will he know what that is? I'll get our baby swabbed for strep too, but I guess my husband and I will have to go to our own PCP...

 

She's not on ANYTHING now, hasn't taken Singulair since summer. Her behaviors began two days after starting the Amoxicillin and Benadryl this time when she had her first ear infection in almost two years. Only other infections would be pink eye, and a bladder infection, but she got tubes when younger because of fluid staying even in between ear infections. Her behaviors are difficult to explain. She's such a little extravert that that's still trumping for her most of the time out in public and with friends, so she seems pretty normal to my friends. But she'll crash SO hard with us, husband and I have to force her together into her carseat to go home, or she'll pull me around the house begging to go back somewhere. She'll scream, cry, act so anxious, be confused about what she wants because nothing makes her feel better, throw huge fits about clothes (has worn basically two outfits for the last week), refuses to wash hands, bedtime is so rough, I almost can't manage her alone. And this is not her! She's strong-willed for sure, but sweet, polite, and responsive to parenting generally. She also is now concerned with tidiness, my sleeves being even, what I'm wearing, making sure baby doesn't crawl toward her toys, etc, chewing on her hair some, repeating some things more than average. She's always been pretty bossy, but now, she gets much more upset if you don't do something she had a certain way in her mind. Her pupils are often dialated. The behaviors are not all the time, she's doing some happy solo-play right now. But it's under there all day every day right now, and you never know when it's going to rear it's ugly head. I just want to make sure that we do everything necessary this time. We didn't get any tests, or blood numbers, or documentation this past summer. Just took her off Singulair and rode out the storm. I'm hunkered down for another week or two like this, but don't want to miss the opportunity to learn whatever we need to while still in the episode. Especially if she may have an active infection that we still don't know about. And she just started preschool, ugh. Thanks again for any tips and encouragement.

[thereishope]

Someone did mention on here once that the fluid in an ear infection could be strep. Is it leaking? If so, I think they said they can test it otherwise the doc can't tell which bacteria caused the ear infection.

 

I believe strep in the gut is diagnosed through a sample of ...oh shoot I can't think of the nice way to put it sine I refer to it as poo poo with my 3 yr old. That "Mommy brain" controls me sometimes.

 

Have him look at the rash on her bottom too. Strep can be on the skin.

 

Finally, don't let them talk you out of swabbing the baby. Sometimes docs pull "babies can't get strep". They can and there are people on this forum that can attest to the fact that they DO get strep.

[Betsy]

So, probably an obvious question and concern, but isn't it potentially dangerous to be on an antibiotic continually? What if I get my little one on Zithromax or Augmentin or whatever and then she has a horrible staph infection? My husband is just hearing me tell what I am reading on here and he's so worried about that. He doesn't have time to do as much research as I do, and I'm probably not doing the very best job explaining all of this, alot to take in! What can I tell him about the preventative use of antibiotics?