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New and bummed out


Malke

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Hi,

 

After mommy-gut alarms for a couple months that I finally listened to, and after a lot of reading as well as support from on-line friends in other forums, I am almost 100% sure that dd (5 1/2 also with SPD relieved by changes in diet, yeast protocol, etc.) is a PANDAS kid.

 

I have so many questions I barely know where to start, but my biggest ones are:

 

a. How do I get our pediatrician to really take this seriously? I delivered a letter outlining the issue to her offices on Monday, but haven't heard back. I called the offices again today but she was out of the office on an emergency delivery. I made it clear that I was unashamedly begging for antibiotics so that we could catch this thing quickly. Whether the abx work or not we'll still have some kind of answer, right? Hopefully she'll call tomorrow morning.

 

b. I have a couple recommendations from our DAN in Greenwood, IN for doctors in the Indianapolis, IN area who are experienced with PANDAS -- would it be better to just start there (instead of waiting for our ped)? Or, is there anyone on this forum from Indy who might have a recommendation for someone in the Bloomington/Indy area?

 

c. Do you tell your kids' teachers about the PANDAS? If so, how do you explain it? I think it would be helpful for dd's teachers to know -- dd is often unexplainably angry and verbally agressive with other kids. They're pretty flexible and understanding, but how does this disorder play out in a social setting like school? Are there any specific supports that can be put in place?

 

I'm really scared. The SPD I could handle. The diet changes and the yeast protocols and everything I could handle. PANDAS seems so much more out of my control I'm just freaking out. After a year free of gluten, casein, soy, corn etc. I finally felt like I had the daughter who was supposed to be there in the first place. I was never 'why me' about the SPD. It just always seemed like something that had a solution and I just had to find it. Now I am totally in a 'why me' place, feeling sorry for myself and angry. Now that I know what's probably going on I am able to interact with my daughter without making things worse by overreacting, but I can barely focus on the rest of my life. If/when I hear back from her ped and when I get some abx started then I know I'll have something to focus on, but all this waiting around is driving me crazy.

 

Sorry for the long post but thanks for any help,

 

Malke

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In my experience (w/ our ped) its better just to go to someone who understands and will treat PANDAS. As for the SPD, you may find treatment of PANDAS relieves the SPD symptoms. My DS suddenly had SPD issues in kindergarten. He was diagnosed SPD-sensory seeking in summer 2010, at age 6.5 and we had him in occupational therapy. Once he got the PANDAS diagnosis and started on abx, the SPD went away.

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Malke ((hugs))

I almost didn't want to send you here, because I didn't want you to freak out.

Our Dr. gave us a month (and extra refills) for a prescription of Azithromycin (200 mg a day for 40 pound child) and instructed to give ibuprofen 2x a day, as well, and take copious, detailed notes.

It was then I saw a viable, real difference- even though, like your daughter, she fits the description, symptoms, to a 'T', or very close, right?

And, I've had her DAN! basically clinically diagnose it.

I still am holding out for the Cunningham/CAM test results (and now they are snowed in, in a state of emergency, big laugh on old impatient me)

So, I guess what I'm trying to say, you don't know yet.

According to my DAN!, the antibiotic trial/ibuprofen, is really the thing to 'see'

Push for the prescrition for these--- and let's see.

Here for you always, and thanks for being there for me, too, over the past couple years---

Sarah

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S&S---we are on 100 mg/day for 45 pound dd7---no help. Now I'm thinking dose is toooo low!

 

Might be too low! Oh, it hasn't made everything magic happy land- oh no. But there is a viable difference- social anxiety is reduced (school mentioned it to me) rages/episodes are much shorter duration, and I'd even say better cognition- however, how can I put this...things are not really 'okay'. No. They are not.

Can you see if you can get a couple of weeks of 200 mg?

And Malke, I wouldn't say anything to your school yet. I haven't said anything to Samantha's. But the teacher did pull me aside, about 3 weeks after being on Azith./ibuprofen, and actually said:

'Since coming back from Winter break, she seems more comfortable here. Laughing with other kids, acted out a bit in a skit in front of everyone...'

Wild, right?

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By the way Malke, I am quite freaked out and scared too. This has been a roller coaster ride, to say the least.

As soon as our CAM results come in, that is when I will let the school know- strep notices, maybe a 504 for school work if she gets in a big flair down the road...and honestly, I have been perparing myself and DH for a possible IVIG.

And, yes, reading here is serious business. Because it is a serious thing.

But, you are proactive, and strong. I know you. You can do this.

xxoo Sarah

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Malke - you are moving down the right path, even though it is scary because it is new territory. Really, PANDAS would help to explain so much and all you've learned about diet, Sensory Processing, and behavior in your child will be helpful to you as you move down the PANDAS path.

 

I would recommend calling the PANDAS doctor ASAP for an appointment and then telling the pediatrician that you have done this and asking the pediatrician if s/he would be willing to collaborate with the PANDAS doc. Then have the PANDAS doc respectfully send letters or reports to the pediatrician.

 

I would tell the school that your doctor is trying some new medications and it is important for the school to let you know how your child is doing each day for a couple of months. Perhaps you could have a trusted teacher fill out a simple behavior report each day. Something concrete that you can use as you try antibiotics and such to see if there is a difference. If you have a few days or a week before you start antibiotics that is even better - then you have a baseline to compare to.

 

In a month or so you can schedule a meeting with your child's teacher and sit down with the daily behavior reports and the list of medications and show them which medications seemed to make a difference (or you can show them differences when she gets sick). This will also help you to know if this is PANDAS.

 

Does your daughter work with an OT? it would be good to have at least one sensory behavior on the daily list (for example, if she often covers her ears with loud noises, you could have the teachers rate that).

 

Kids with PANDAS often have SPD during exacerbations. You can still use all you learned about SPD during those times. Also, I think you will find that once your child's infections are cleared, the diet will pay off big time, and real healing can take place. Eventually, you may not need the diet anymore.

 

Best wishes to you and please keep us posted on your progress!

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EAMom---Azith---100 mg/day. When we first filled it almost 2 months ago, my "gut" told me it was a very low dose. But since we are seeing a "pandas specialist" I swallowed that concern (well, choked it down). How long did your dd take the 250 mg?? WE don't have confirmed recent strep at all.......maybe started w/it years ago, but biggest hit was viral, then staph impetigo over summer.

 

S&S---we are on 100 mg/day for 45 pound dd7---no help. Now I'm thinking dose is toooo low!

 

Are you talking about Azith (or advil)? My dd took 250mg/day Azith. when she was 45 pounds.

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Hi and welcome,

 

regarding the school situation, yes, by all means, notify your school, either formally (in a 504 plan) or informally in a letter to his teachers and the principal. I wish I did this sooner. My son's crazy behaviors got him into trouble all the time, and it wasn't his fault- he couldn't help his actions, most of the time. Getting in trouble really caused a snowball effect. Also, my son had issues related to school work- another reason I wish I had done it sooner. He needed accomodations which, sadly, he did not get. You do not need to give lots of detail about the condition. When you meet, just give simple line by line requests for things you thing he might need. A letter from your childs doc will help, simply stating that accomodations are required at this time. Glad you found us!

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Malke,

As a mom who's been dealing with this for a couple of years, the first thing you need to do is take a breath. I completely understand that this moment, you're in "OMG what is happening - this is a nightmare" mode. We've all been there and we all go back there sometimes, even after we've been dealing with things for a long time. But as crazy as this disease is, you need to remember the survival chant. In the worst of times, silently tell yourself "my child does not have cancer, she does not have a permanent disability, she is very loved." Pandas can be overwhelming - but it isn't the worst that could happen and you will find help here. That's important to remember.

 

The second thing is that you need to realize that as helpful and supportive as this forum can be, it can also get a little nutty. In our quest to find missing pieces, we sometimes try things with alternative medicines, supplements, treatments, and share our ideas. Most of us have gotten to the point that we listen to some ideas and takes others with a grain of salt. At this stage of research and medical experience, definitive answers for our kids are not there yet. We know some things that seem to work but on a forum, you're not getting any child's complete story. Some kids have multiple things going on, some parents share more details than others. So it's impossible to say "do A and B will happen". So we brainstorm, sometimes we post things and then a week later our thinking evolves and we might feel differently. We're also our kids' case managers and often plod along with limited medical support. Finding a supportive, knowledgeable pediatrician is a rare thing and there are only a handful of "experts" - all of whom have their own twist on theories, protocols and bedside manners. As a newcomer, this can make it seem like we're all crazy and "out there." I sort-of kiddingly tell people I can measure how sick my own kids are by checking how often I come to the forum. If the posts strike me as frantic or out there, then I know my kids are doing well. When the posts strike a chord and I check in every hour, I know my kids are tanking.

 

That said, here's my take on your questions - some "locals" have probably contacted you with names of doctors who can help. The first step is finding someone who will support your effort to do a month long trial of antibiotics (often abbreviated as abx). Keep copious notes. Make a list of your top 5-7 symptoms and rate them every day. For example - Aggressiveness = 5 today, sensory issues = 3, need to control things = 7 etc. Personally, I find it easier to rate the previous day rather than the day I'm in - a little perspective helps sum up the whole day instead of reacting to a particular hour. Then chart the month of data. This will help your doctors see "objectively" what you see at home.

 

The second thing I would do is not only focus on learning about Pandas, but also about OCD and behavior therapies (cognitive behavior therapy and Exposure/Response therapy aka CBT and ERP) that can help you better manage things as you work your way through your medical journey. There are several posts on this topic and I'll see if I can find a few posts for you, with recommended reading and strategies. You can also use the "search" button on this forum and search "rages" "ERP" "SPD" "school"...As you learn about behavior therapies, you can work with your child's teacher and share what works and what seems to trigger negative behaviors. Most schools will want an official diagnosis before implementing anything as formal as a 504 plan or IEP. So for now, I'd probably just work with the classroom teacher. Formal accommodations beyond the SPD issues can follow after you've had some time to do an abx trial and work with a doctor. Try not to put too much on your plate at once.

 

Finally, as scared as you are, realize that if it is Pandas, you will get a handle on it in the same way you dealt with the diet and sensory issues. This isn't a death sentence. There are parents here who do get their kids well. My son is doing incredibly well after a very long battle and my daughter, who is just starting to show Pandas signs, has been able to get back to a good place quickly because we now have a supportive network of doctors. We'll do our best to help you get there too.

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Welcome. Being that you're in Indy, you could just drive to see Dr K who is outside Chicago. But, this leads me to ask the forum if Dr K is automatically going to IVIG for everyone now or if he will still try antibiotics and such first.

 

I found these doctors listed for IN, but these doctors are NOT specialists. They are just doctors someone found helpful.

Dipti Vyas, MD

South Meridian Pediatrics

Greenwood, Indiana

Office # 317-497-6120

 

Dr. Sharon Gilliland

Rainbow Pediatrics

Indianapolis, IN

317-255-7337

 

Dr. Chris Belcher, Pediatric Infectious Disease

Infectious Disease of Indiana

Indianapolis, IN

317-587-2300

 

 

 

Hi,

 

After mommy-gut alarms for a couple months that I finally listened to, and after a lot of reading as well as support from on-line friends in other forums, I am almost 100% sure that dd (5 1/2 also with SPD relieved by changes in diet, yeast protocol, etc.) is a PANDAS kid.

 

I have so many questions I barely know where to start, but my biggest ones are:

 

a. How do I get our pediatrician to really take this seriously? I delivered a letter outlining the issue to her offices on Monday, but haven't heard back. I called the offices again today but she was out of the office on an emergency delivery. I made it clear that I was unashamedly begging for antibiotics so that we could catch this thing quickly. Whether the abx work or not we'll still have some kind of answer, right? Hopefully she'll call tomorrow morning.

 

b. I have a couple recommendations from our DAN in Greenwood, IN for doctors in the Indianapolis, IN area who are experienced with PANDAS -- would it be better to just start there (instead of waiting for our ped)? Or, is there anyone on this forum from Indy who might have a recommendation for someone in the Bloomington/Indy area?

 

c. Do you tell your kids' teachers about the PANDAS? If so, how do you explain it? I think it would be helpful for dd's teachers to know -- dd is often unexplainably angry and verbally agressive with other kids. They're pretty flexible and understanding, but how does this disorder play out in a social setting like school? Are there any specific supports that can be put in place?

 

I'm really scared. The SPD I could handle. The diet changes and the yeast protocols and everything I could handle. PANDAS seems so much more out of my control I'm just freaking out. After a year free of gluten, casein, soy, corn etc. I finally felt like I had the daughter who was supposed to be there in the first place. I was never 'why me' about the SPD. It just always seemed like something that had a solution and I just had to find it. Now I am totally in a 'why me' place, feeling sorry for myself and angry. Now that I know what's probably going on I am able to interact with my daughter without making things worse by overreacting, but I can barely focus on the rest of my life. If/when I hear back from her ped and when I get some abx started then I know I'll have something to focus on, but all this waiting around is driving me crazy.

 

Sorry for the long post but thanks for any help,

 

Malke

Edited by Vickie
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