Jump to content
ACN Latitudes Forums

June 10th 2012 our lives changed! LOST!


Recommended Posts

My name is Mary, on June 10th my 5yr old daughter began this crazy eye rolling. It was so fast and constant. The way I explain it is that it looks like she would have no muscles and she was bobbing her head all over causing her eyes to roll side to side and up and down. Later that night she only got worse with a blank stare, and crying. Took her to the ER, all they did was a cat scan, that came back fine, and told me it was a tic. Only this was much, much more than just a tic. Next day was even worse with eye rolling, excessive hyperness, straight faced (just mean looking), and very moody. As evening came some of the things she was saying didnt make much sense, and the severity of the eye rolling was back. I tooke her to a different hopsital, and there she began to forget normal everyday things, such as her teachers name, that she was going to be 6yrs old in five days, and the way i had taught her to wash her hands. It was like my little girl was not there. We were transported to a Childrens Hospital, and there for four days. They did many tests on her, and she had a STREP INFECTION. It was then that the neurologist and another doctor began to tell me about this PANDAS. They sent us home, and put her on 10 days of abx (Cefdinir 250mg). It is now a month and a half later, and it has been nothing but a rollercoaster. Riley now has the worst tantrums/rages that I have ever seen, and they last for hours. We just expierienced the depression part of this two nights ago from 2:30am till 7:00am. The many other symptoms she has is crazy mood swings, sensitive hearing, spitting, sceaming, blank stare, clingyness, very, very babyish, eye rolling, episodes of worrying about everything, daily episodes of babyish talk, and extreme loss of appetite. She had seven days after the abx that it was like nothing had ever happened. Then two Thursdays ago it was completly down hill from then on. I have done research, upon research, and I truly believe she needs to be on that abx for a lot longer than 10 days because she is only getting worse as everyday passes by. Our neurologist dosent want to put her back on abx, nor does our family doctor. So what do I do? It is rediculious, she needs to be being cared for by an experienced doc now, and who knows how long this is going to take to find someone to help us! I also have two other children, and it has taken everything out of me to keep or house and family together. As a mom I feel so lost in everything I do. Even normal everyday routine things just dont seem rite. It is killing me inside watching her change from day to day, and I feel so helpless, and like there is no doctors that want to help, or listen to me. I would greatly appreciate any info, advice, or at this point anything from someone else that is going through the same thing so I can hopefully end this feeling of completely being ALONE!

Link to comment
Share on other sites

Hi, I am sorry to hear about your daughter. My daughter was 4 when it hit us last October. It took us longer to diagnos, because her rapid andculture were negative and her titers were not elevated. What I am trying to say, strep is not the only culprit for PANS flare- ups.

Have you gotten her rechecked for a strep infection? I would have you pedi or neurologist do a rapid and culture. ALso run an ASO or DnaseB titer on her. Also there are other things that can cause it. I would check her for Mycoplasma, Lyme, and other tick borne diseases. Even a sinus infection or a virus could trigger it. Has she had any vaccinations recently? They can also trigger PANS. Also, I would have the household checked for strep. It could be in the house even if nobody is symptomatic.

As you know, it is a controversial diagnosis. Many do not believe in it. And some who do, don't know how to treat it.

At the top of the forum, you can find a thread of doctors who may help, listed by state. There are really only 5 "specialists"; one in NJ, MD, FL, CT and Chicago. They all treat PANS, in different ways.

If you pedi will not check her, try bringing her to a CVS clinic or something for a sinus, strep check...

Also, you can try Ibuprofen, to try to reduce inflammation. Many people have seen relief from that. try a Childrens Advil.

 

Others will chime in with advice. Let me know if you have any more questions.

Link to comment
Share on other sites

There are more than 5 specialists, but these are some of the well known ones. There are docs that can and will help. Tell me what part of the country you are in. Our son had an acute episode just before his 4th birthday with many of the same symptoms. He had already been dx w/PANDAS, so we knew what was happening and got him to Children's Hosp. of Phila. immediately for treatment. You kiddo needs longer term antibiotics. Hang in there and know that you are not alone. You are welcome to PM me. Kath

Link to comment
Share on other sites

i think others will chime in who are much more knowledgable than me. . . but are you aware of the research study currently underway at NIMH?

 

http://www.clinicaltrials.gov/ct2/show/NCT01281969?term=Pediatric+Autoimmune+Neuropsychiatric+Disorders+Associated+with+Streptococcal+Infections+%28PANDAS%29+Research+Study+for+Children&rank=1

 

if definitlely sounds to me that you should contact them asap. good luck!

Link to comment
Share on other sites

Mary,

 

I get goosebumps reading your post. Our world too "refell" apart in March of this year. It first fell apart when he was diagnosed with autism.

 

Your analogy of this being a rollercoaster...you hit the nail on the head. Just prepare yourself for it as this will be the way it is. Just accept that when you are in the valley, you will go up again and when you are on the peak, enjoy it as you may very well see another valley.

 

Now, when I was in your position with pediatricians who didn't know how to treat PANDAS, here is what I did:

 

Read this forum every day to begin to educate yourself so that you can then educate the doctors that you may have to go through until you get to a PANDAS specialist.

 

Immediately get on a wait list for one of the top 5 PANDAS doctors. If you can find their names, PM me and I'll give them to you. Maybe get on two of their wait lists and get on cancellation lists. You'll go to whatever one you can get into first. You can always add another top PANDAS doc later

 

Next, post on this forum what state you are in and ask for members to suggest name of good pediatrician/MD who are aware that many PANDAS cases require more than 10 days antibiotics.

 

Consider taking her back to pediatrian or maybe even an urgent care doc who is new to the situation and have her reswabbed. As for rapid and regular throat culture and ask for sensitivity. When I was struggling to find help, I ended up taking him back to be reswabbed base on return of symptoms..the urgent care thought I was crazy but when the swab came back positive, he suddenly took notice that I knew what I was talking about. So another option is to take her to doc to get her reswabbed again. Keep looking as long as it takes to find a doctor who will help. I ended up driving 5 hours to another PANDAS doc in New York before I could get in to see Dr. L. Every doctor I saw gave me one additional thing in my arsenal to fight the PANDAS.

 

And yes, the NIH study may be good option for you ...someone posted a link I think. The key is you need help NOW.

 

I hope some of that helps. I can tell you just as they told me when I first posted here....you are going to find help for your daughter and your family.

Link to comment
Share on other sites

There is the NIMH study, I don't know if they are still taking patients but if you are desperate that might be worth a call. Also another abx study going on with dr. Murphy in Florida. Also be sure to check out a list of drs on this site and also Beth Maloney has a list on her site. We used one of the drs listed on this site although not one of the "top five" as most of them don't accept insurance. It is definitely a roller coaster but things will get better. I also agree with what others have said about going to an urgent care in the meantime. Tell them what you have learned. Sometimes they are more willing to write scripts than pediatricians. Just until you get in to a specialist, these ideas might be helpful. And I second the ibeuprofin suggestion.

Good luck.

Link to comment
Share on other sites

There are more than 5 specialists, but these are some of the well known ones. There are docs that can and will help. Tell me what part of the country you are in. Our son had an acute episode just before his 4th birthday with many of the same symptoms. He had already been dx w/PANDAS, so we knew what was happening and got him to Children's Hosp. of Phila. immediately for treatment. You kiddo needs longer term antibiotics. Hang in there and know that you are not alone. You are welcome to PM me. Kath

 

 

I know you had good luck with CHOP, but overall, it is not the place to go, as most of the docs there believe that our kiddos have conversion disorder (I know your doc didn't, but she's the only one, and she has not been able to help everyone (I am not putting her down. I know she is an excellent doc and really cares, but that is not the typical at CHOP.) OK, that being said, let's get back to helping this wonderful mom.

 

First of all, I'm very glad you found our forum, and I'm also very, very glad that your hospital found the strep, and accepted the PANS/PANDAS dx from the start. I know it's hard to believe, but you are definitely one step ahead of many of us from the start. I think the previous responses, though are excellent. Definitely check out the link at the beginning of this forum, and also PM beeskneesmommy...she'll have some good names for you. I definitely agree that there may be more triggering this than just strep, as the immune system has been compromised, so it can cause many different illnesses/immunizations to affect her nervous system. Personally, I think you should pick a doc who is open to the fact that there may be more than one illness going on.

 

I'm also PMing you.

Link to comment
Share on other sites

everyone had good advice

-definitely call about the NIMH study!

-take videos (to show docs later)

-get your dd's re-throat cultured

 

Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics.

 

Also, even if all throat cultures are neg, many pandas kids find long term abs to be helpful. Maybe strep is "hiding out" in non-throat locations (sinuses, vaginal, skin, perianal). My PANDAS dd had vaginal strep (in addition to strep in her throat, and her sister having strep in her throat).

 

This article may be good to show your doctors (advocates using 3-6 weeks worth of abs initially, which is better than 10 days at least!). http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS(1).pdf

 

Lastly, there are other reasons why antibiotics are helpful (in addition to treating obvious active infections and preventing future strep infections). Many PANDAS kids are on long term antibiotics for YEARS (until the age of 18 or up).

 

Per Dr. Murphy (PANDAS specialist in Fl.)--there are other reasons why abs can help:

-"my child is addicted to augmentin" could be due to 1) decreased infections 2) immune modulating role of antibiotics 3) there are trial of clavulate for depression/anxiety 4)glutamate transporter (down arrow)

Link to comment
Share on other sites

 

 

Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics.

 

 

[/i]

 

It is important to identify all household carriers by blood test (ASO and DNASE B) not throat swab. Dr B also tests household for mycop IgG/IgM.

Link to comment
Share on other sites

 

 

Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics.

 

 

[/i]

 

It is important to identify all household carriers by blood test (ASO and DNASE B) not throat swab. Dr B also tests household for mycop IgG/IgM.

Perhaps both? My daughter is considered a carrier, with consistent positive swabs, but no elevated titers.

Link to comment
Share on other sites

 

 

Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics.

 

 

[/i]

 

It is important to identify all household carriers by blood test (ASO and DNASE B) not throat swab. Dr B also tests household for mycop IgG/IgM.

Perhaps both? My daughter is considered a carrier, with consistent positive swabs, but no elevated titers.

So true!! Both!

Link to comment
Share on other sites

Mary,

 

All the advice above is good. You have one advantage which is that you have a neurologist dx of PANDAS. The neurologist needs to learn to do more than just dx; he should treat. In any case, with this diagnosis you might try calling every pediatric practice within your area saying your child has been dx'ed with PANDAS at the Children's Hospital and ask if they have a pediatrician who is able to treat the disorder. I did this back in 2000 for my son with my own dx off the internet. (The seminal paper wasn't written until 1998 so knowledge was very low within the medical community.) I called seven pediatric practices and one (only one) got back with one doctor who was willing to take a look. He made his own calls to doctors he trusted and put my son on long term antibiotics. I agree with putting your name in with one of the 5 PANDAS specialists, but it may take a while for an appointment. In the meantime, it is a real blessing to have a pediatrician in your corner. Mine helped in getting my son to the NIH, where he was officially dx'ed although rejected for the study as he was too chronic by then.

Link to comment
Share on other sites

 

 

Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics.

 

 

[/i]

 

It is important to identify all household carriers by blood test (ASO and DNASE B) not throat swab. Dr B also tests household for mycop IgG/IgM.

Perhaps both? My daughter is considered a carrier, with consistent positive swabs, but no elevated titers.

 

we've never bothered to blood test our non-pandas carrier (younger dd). She was positive on throat swab several times in preschool/kindergarten. She didn't have symptoms, and would clear after Azith (we re-cultured)...but that is a good question now, if we should get titers to see what they are doing.

 

Our PANDAS dd (like pegs dd) never had elevated titers (despite positive cultures/severe OCD/PANDAS) and she might also be considered a carrier (since she didn't clear on her own, and after initial fever).

 

ASO/dnase can also be confusing...there is a study where carriers had falling titers, even though they continued to culture positive.

 

Of course, rising titers (with no positive swabs) would be suspcious...and make you think there is infection somewhere...so I can see them being useful in that situation.

 

Also, it seems (via an informal survey here) that girls are much more likely to not even get elevated strep titers in the first place. I don't think this has ever been looked into in a "real study". Here's the thread: http://www.latitudes.org/forums/index.php?showtopic=9495

Edited by EAMom
Link to comment
Share on other sites

I am so sorry for what you are going through. I know your family is suffering right now and it is difficult to know where to turn. You have gotten some good advice here. In my opinion the most immmediate need is antibiotics and an appointment with a specialist. Your daughter absolutely needs long term antibiotics (minimum of 3 months). You may be able to get a script from a phone consult before you could get in for an actual visit. Perhaps Dr. T? But whatever you have to do, you must get her on antibiotics. I think the suggestion for the study in Florida is a wonderful idea. Since this is a new event and you saw an initial response to antibiotics, she should be a great candidate. If you need the phone number for the Rothman Center just send me a PM. They do a great job with PANDAS kids. Just keep reading and educating yourself with all the studies out there. This is a tough road but you are up for it. It will get easier.....be kind to yourself and don't expect too much. It's ok to let some things go for a while till you get through this difficult time. You are on the right track and you are taking the important first steps.....Keep up the good work.....

 

Dedee

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...