Advice Please

[Lynn777]

Hi Everyone,

 

I have been off the ACN boards for a while and when I was on, more often then not, I was on the TS forum. However, I have posted here in the past & I have read a lot regarding PANDAS/PITAND so that I’d know what to look for in my son if he presented with more symptoms.

 

I won’t go into my long drawn out story (which I have posted here before), but the basics are…

 

My son had a few episodes of tics in August of 2009 & again in February of 2010, but then on April 18th 2010 he had a major onset of tics, OCD & separation anxiety. We immediately had a CBC, thyroid test & allergy tests. Everything came back normal except he had high intolerance to Gluten/Dairy. We put him on a strict diet, started supplements & cognitive behavioral therapy. After a few months, the OCD & separation anxiety all but went away & he was pretty much back to himself. I also think we have managed the tics, but they are still there & exacerbate at times. He does not have any other issues, no anger, sleep disorders or deterioration at school. We saw a neurologist at CHOP & she diagnosed him as having a tic disorder & said no further treatment was necessary. So I ruled out PANDAS.

 

Fast forward to this year, he had a constant coughing tic for over two months, then he was diagnosed with strep & an upper respiratory infection, he was put on amoxicillin and within 3 days the cough tic & all his other tics vanished. In addition, his personality became more vibrant (like I said, he’s a great kid, but there was something different about him). Anyway, the tics did slowly return after he went off the antibiotics, but remained very mild. Then a few weeks ago we noticed the tics were increasing & he seemed lethargic, a few days later he was complaining of a sore throat & he had a fever. I took him to the doctor & he tested positive for strep. He was put on amoxicillin again and the same exact thing happened -- within 3 days the tics vanished & we saw the perky personality.

 

So, it got me thinking about PANDAS/PITAND. Anyway, I emailed our full story to Dr. K & his response was “your son DOES NOT have TS. You need to get him a work-up for PANDAS.” I was sort of speechless, it seemed so matter-of-fact! The problem now is, I don’t know where to go from here. I am very confused & I’ll be honest and say currently he is nowhere near bad enough that I would consider doing something like IVIG, but there definitely seems to be some connection with the antibiotics.

 

I found a few past posts that Dr. K almost always pushes IVIG, so should I even bother with a phone consult? If you have any specific experience/advice feel free to PM me.

 

I guess I’m stuck because his symptoms are mild, so I don’t want to treat him for something he doesn’t have, but on the other hand what if we are just catching it early & then I don’t treat him for something he does have & it gets worse?

 

What do you all think?

 

P.S. I live in the suburbs of Philadelphia if anyone happens to know any good doctor’s in that area. My pediatrician said he doesn’t understand why there would be any connection with antibiotics reducing his tics!

[Dedee]

My son did the very same thing about 5 years ago. I thought I was going crazy because you could time it almost to the hour. Every time we stopped antibiotics it took 24 hours to start seeing tics and OCD, and by 48 hours all symptoms were back full force. Same thing when we started the antibiotics back, we saw improvement at 24 hours and by 48 hours all symptoms were gone. Of course, back then most of the doctors thought we were crazy. We had to travel 8 hours to see Dr. Murphy to get confirmation that "of course you aren't crazy, we see that all the time in PANDAS kids." My son has been on low dose antibiotics since then and continues to have that sunny disposition that you describe.

 

You need to go to a PANDAS specialist. If your son's symptoms don't warrant IVIG, you shouldn't do it. You are his mother and you know him better than anyone. It does sound to me like you think he needs something though. A doctor who specializes in PANDAS will give you the answers you are looking for. For my son, daily antibiotics were the answer along with a few supplements. Our daughter however, is more severe and we are very impatiently waiting approval from insurance to move forward with IVIG.

 

Your son deserves to live the best life he can. It sounds like he has a Mother who wants that for him and is willing to fight for it. You are going with your Motherly instincts. That will lead you in the right direction.

 

Dedee

Edited May 12, 2011 by Dedee

[tpotter]

I also live in the Philly area. There's, unfortunately no one in this area. I would suggest Dr. L,, though. She's in MD (approximately 2 1/2 - 3 hours from here. She does not push IVIG or PEX, but, being a neurologist can definitely rule in or out PANDAS, and knows how to treat it (and not always with IVIG or PEX). PM me if you need her information. She told me the other day that she is taking new patients again.

[eljomom]

Lynn777--Just want to say I am so there with you! Only thing with us is that I think we "missed strep" for over 2 years, therefore untreated, so the abx don't eliminate tics. She still has some tics, hair rubbing, but ocd is milder as is separation anxiety and writing is better. I have the exact fears though...will this get worse if I do nothing, will it get worse if I do more, what's enough, what's too little, what's too much?

 

I am interested in what test you had to find out about intolerance to Gluten/Dairy? I have not gone this route, but am considering it. Just still not sure what test to do.

 

Dedee....what supps are you using for your son?

Thanks!

[AmySLP]

This is similiar to our daughter-mostly tics and movements, but after months of strep. That was 2 yrs ago. We see Dr. B in CT, and have seen Dr. L as well. Both prescribe and recommend prophylaxis ABX and won't even talk about IVIG, if not necessary. FIrst course for milder cases, is definitely just ABX.

[Dedee]

The supplements my son takes are high dose fish oil, magnesium, 5-HTP, buffered Vit C 2,000mg daily, multi vitamin, vitamin D3, and probiotics. We are looking into CoQ-10. Some are using that now with neuropsych issues.

[Lynn777]

Thank you all so much, I really appreciate your comments, understanding & advice!

 

I am going to pursue having DS tested further. I am not going to continue with Dr. K at this time because of the IVIG push.

 

I went ahead and spoke to Dr. T on the phone today (I received some PM's about him - both positive & negative), but he is close to me in NJ & I liked him on the phone. Also, he didn't push anything on me other then he recommended blood tests, he seemed conservative & for now that's what I'm looking for. So, I think I'm going to start there & if he doesn't work out I will pursue Dr. L in MD.

 

It's amazing that both doctor's feel strongly we are dealing with PANDAS & I really didn't think my son fit the criteria. I guess we'll see what the blood tests reveal...

 

Eljomom: We too are on lots of supplements. We had the IgG blood test & we were given a full report portfolio on DS's results. It was very well done. I know the results are controversial, but we have seen improvements taking DS off gluten. I will tell you this, we started him at 80% gluten free, which is what the doctor recommended, but we had to go 100% to really see results. Let me know if you'd like any additional information. The diet was hard in the beginning, I almost quit like 5 times, but now it's like second nature.

[cidermill]

Thank you all so much, I really appreciate your comments, understanding & advice!

 

I am going to pursue having DS tested further. I am not going to continue with Dr. K at this time because of the IVIG push.

 

I went ahead and spoke to Dr. T on the phone today (I received some PM's about him - both positive & negative), but he is close to me in NJ & I liked him on the phone. Also, he didn't push anything on me other then he recommended blood tests, he seemed conservative & for now that's what I'm looking for. So, I think I'm going to start there & if he doesn't work out I will pursue Dr. L in MD.

 

It's amazing that both doctor's feel strongly we are dealing with PANDAS & I really didn't think my son fit the criteria. I guess we'll see what the blood tests reveal...

 

Eljomom: We too are on lots of supplements. We had the IgG blood test & we were given a full report portfolio on DS's results. It was very well done. I know the results are controversial, but we have seen improvements taking DS off gluten. I will tell you this, we started him at 80% gluten free, which is what the doctor recommended, but we had to go 100% to really see results. Let me know if you'd like any additional information. The diet was hard in the beginning, I almost quit like 5 times, but now it's like second nature.

 

 

Hi Lynn,

 

Can you share with me the name/contact info of Dr. T in NJ? I'm in Hunterdon County and I'm exploring the idea of PANDAS. I wonder if it runs in families? My nephew has been ticcing for years and just now they tried antibiotics and it completely took his tics away. To my knowledge my daughter has never tested positive for strep, so I"m going to look into allergy testing as well, but I just wonder if she could have had it? Does strep always present with painful, hurts-to-swallow throat or can it be mild?

 

Thanks!

Christy

[Lynn777]

Hi Christy,

 

I can PM you Dr. T's contact info. I am afraid I am not the best person to answer your questions, since I am so new to this myself. However, I do know you can have PANDAS without a painful strep infection. Also, I told Dr. T that I had chronic strep from the time I was 6 - 16 & he said he hears that a lot. So that would lead me to believe there can be a family connection. Although, I do not have tics.

 

In fact I had strep throat when I gave birth to DS, but I was on painkillers & didn't even realize it until they wore off.

 

Best of luck to you!

[nicklemama]

Christy- You do not need a confirmed case of strep to get a PANDAS diagnosis. My son has never had a documented case of strep, nor have we suspected him of having strep. He has had ear infections that we believe somehow led to PANDAS, coupled w/ being given the FluMist. I believe the strep part of PANDAS kept my son from being diagnosed for a year.

 

He was diagnosed by Dr T last fall and it was confirmed again by Dr K this spring.

[cidermill]

Thank you ladies. You are such a wonderful resource. This board is incredible. The "not ever having a raging strep throat diagnosis" for either child had me wondering, but they seem to fit each and every other criteria. The newest one I'm noticing and wondering about are processing delays. My 8-yr-old daughters teacher called me today wondering about processing delays with math facts. I can see the same thing in my son. They didn't used to have these. My daughter started exhibiting tics last May, and then they went away a few months later only to resurface last week after a super stressful incident. I'm wondering...How far ahead does Dr. T book out and any idea if he accepts Aetna insurance?