Possible PANDAS? please help!

[porkchop]

My son (9yrs old and special needs..undiagnosed at this time as reason for delays)has been sick since May 21, 2010. He got his chicken pox booster on 4/30/10 and exactly 21 days later had a high fever of 103. He has not been right since the fever in May. His teacher would call me everyday and tell me he was asleep at school, was eating paper and was acting as if he just didnt know who he was or where he was. She was completely astonished at this behavior that suddenly happened. This went on for 2 weeks and then suddenly he awoke one morning and was completely back to "normal for him". I thought my God I dont know what was wrong but I dont ever want to experience that again! Then exactly 2 weeks later he slipped back into the behaviors, I was devasted. I took him to several DRs and even the ER 3 times only to be told he must have a virus several times. I swithched Pediatricians and discovered he had mono, thought that was the problem, nope he got sick again 12 days later this time he had strep(I think he had this from day 1 in May), he was treated with amoxacillin for 10 days. The new ped told me he thought it was PANDAS, but if it was that the antibiotics would have cleared it up. It didnt! My son has been having these symptoms for 4 months now and they happen every 12 to 14 days like clockwork. I have taken him to a lyme dr. and it has been ruled out. We have had MRI, bloodwork, more bloodwork and they tell me that nothing is wrong. His symptoms are as follows:

 

He lays in bed pretty much all day long, wont get dressed

He pupils seem to be dialated

He has frequent urination

He walks in circles around the house, pacing, often on his tip toes and hands flapping

Doesnt seem to remember anything that happens during the 12 days he is like this

No fever or any other sign of illness

Does not like to leave the house

He will nap and when he wakes up he seems like he is back to himself for like 2 mins and then he goes right back into it

towards the end of the 12 days he has very repetative words like he will say poppop over and over and over again at least 100x a day(he is severe speech delay and only has very limited laguage so he can only say maybe 50 words anyway)is this a vocal tic?

He doesnt seem to have any OCD or TIC issues and def no raging or angry behavior

 

 

He just lays in bed and looks awful. Bags under his eyes, cries at the simplest things. Wants me to lay down w/ him all day long, he can not go to school. His teachers and grandparents and other family agree something is def wrong with him. My mom wants to call mytery diagnosis. I have him and his brother who is also special needs, and this is just devasting to our life. We certainly didnt have it easy to begin with, but with this happening, this has just made it soo hard for us. My question is does pandas cycle? This happens every 10 to 12 days like clockwork! Dr.s dont understand because they are new dr. and he came to them like this so they havent seen what my "normal TJ is" and they tell me he has autism....he DOES NOT have autism. THese behaviors started after the fever! I saw a post by ashquinn on page 26 about her child, and when I was reading it I had to check to make sure that I didnt write that post myself because it sounds EXACTLY like what is happening to us. Is "ashquinn" still on the posts? I would like to know if she ever found out what was going on with her child. Because the symptoms she described are identical to my childs. Im sorry this is so long, but I am desperate for help. I want my child back. I am crying out for help from doctors and getting nowhere. Please any advice would be greatly appreciated.

[marylandmom]

Has he been on ANY antibiotics?

Where do you live?

[peglem]

Welcome! Your post really touched a chord with me- so, many doctors considering me crazy for "being in denial" about my child's autism. I still hate going to see new docs or specialists. Its so scary when you KNOW something's going on and you can't get docs to investigate.

Where do you live? Maybe somebody can suggest a doctor or 2 for you. Frankly, it sounds to me like your child is suffering from some infection related disorder. Does your son come back to himself w/o medical interventions during these cycles?

[KaraM]

Hi,

 

So sorry to hear what you and your son are going through. You will find a lot of support here.

First and foremost, if it is PANDAS, 10 days of abx is not enough. The first time by daughter went on abx, she did not start responding until day 11. Then, after the 14 day dose ended, a week later she relapsed. She is now on propylactic abx since March - is about 95% better.Please take a look at the "helpful threads" section at the top of this forum and find the FAQ post. Or, alternatively, go to www.pandasresourcenetwork.org and look at the one there. It is a great way to look at questions and answers about how PANDAS is diagnosed, treated, etc. You may find that your child is showing OCD like symptoms or tic/Tourette like symptoms. The repetitive speech certainly sounds like it could fit in that category. The urinary issues are a PANDAS symptom.

 

Your son's case sounds complicated. I think you really need to go to a doctor that knows what s/he is talking about. Your pediatrician, while at least aware of it, is clearly not knowledgeable. Where in the country are you located. Furthermore, it could be your son'sreaction to something other than strep that is causing the symptoms. A PANDAS/PITAND literate doctor will test for these other things.

 

Have you heard of the Cunningham test. If you can swing $400, it may be worth doing. The FAQ talks about it more.

 

I have to sign off, now. But I wanted to respond with some initial info and support. Hang in there.

 

Kara

[EAMom]

Some thoughts:

 

--Here's the link to the FAQ thread http://www.latitudes.org/forums/index.php?showtopic=6266

 

--I would start by getting current throat cultures on everyone in the household.

 

--Here's an article on amoxcillin failure in strep throat http://www.entrepreneur.com/tradejournals/article/169459644.html

 

--I don't know if ashquinn is checking the posts, but you can always private msg. her...so maybe she'll get an e-mail alert.

 

--I don't have any insight on the 10-12 day cycles.

 

--During one of dd's exacerbations, she started repeating words, and we were told that was a type of tic. I don't know if it is the case for your son.

 

---

We have had MRI, bloodwork, more bloodwork and they tell me that nothing is wrong.

It drives me bananas when docs say stuff like this. Obviously something is WRONG, but they just can't find the problem on their tests.

 

--Many of his symptoms do sound PANDAS/pitand-like (even without obvious tics/ocd).

 

--ditto the recommendation to tell us where you live!

[porkchop]

Thanks for all the responses. We live on the eastern shore of Maryland. I have heard about Dr. Latimer, but she doesnt take insurance and I was told it was a $580 charge for the 1st appointment. Thats an awful lot of money to come up with right now, especially being that it may not even be pandas. He does come out of these episodes on the 12th day w/o any intervention, but I am worried it could be causing brain damage everytime he goes into it. It is so weird how it cycles exactly 10 to 12 days and it lasts the same. I def think there is some kind of infection or bacteria causing it, but WHAT?!! This is so horrible to watch him turn into this child who looks like he is dying every other week! He just lays in bed and has no interest in anything. The dialated pupils really scare me though. They are suppose to be doing an EEG but they said it takes about 6 weeks to schedule that because he has to be sedated. Why cant they sedate him and do that in the ER? If he came in w/ obvious head trauma they would do then, so why not now. Just because he has no physical signs of illness they dont consider him ill. I just wish someone would find something wrong so they can just fix it. We are going to University of Maryland on the 28th of October, but that is just to see genetics. I will tell them whats been going on but Im not sure they can help with this situation.

We are heading to Virginia this morning for another appt. with Dr. Gubb to see if there is any reason to still suspect lyme, but from what I could interpret on the blood results that was ruled out. Western blot was negative twice, all the co-infections were negative. The only thing that was concern was that his absolute lymphocyctes were really low. From what I understand that just means he has been fighting an infection recently(dr. says from the mono).

[KaraM]

What about a phone consult with her - would that be cheaper. I think I heard she does them and if I remember correctly it was a couple of hundred. I also heard there is one type of insurance she takes (that for military families). Don't know if any of this is true.

 

How far would it be to travel to NJ to see Dr. Trifiletti? I understand he also does phone consults.

[KaraM]

I copied this from Hierge's post about his visit with Dr. L

 

"I found out yesterday that Dr. Latimer actually takes ONE insurance company and for military families like mine, we lucked out. She's part of Tricare. I'm not sure if other companies will cover her hefty initial consult fee and subsequent visits, but I'd definitely try. "

[kimballot]

Well... I don't know if this is PANDAS or not, but it certainly sounds like a medical illness. I sent you a PM with some ideas. I hope you can get help soon.

 

I agree with Maryland Mom who asked if your son has been on ANY antibiotics. Also, has he been on any allergy treatments or anything else that could contribute to the cycle? I hope you are keeping a journal with all the meds given each day and the behaviors to help sort this out.

 

Finally, be careful about docs telling you bloodwork is "fine". My pediatrician told me the same thing, but I got copies of the bloodwork and brought it to other docs anyways. The the PANDAS docs(2 of them) found signs of current strep, old mycoplasma, and mild immune deficiency, and even the ENT found mild immune deficiency when I handed them the workup that the Pediatrician said was "fine". They treated my son's infection and he is a different boy today!

 

Wishing you all the best as you find treatment for your son. Keep us posted on his progress and what you learn along the way! Thanks!

[EAMom]

Dr. Latimer is a wonderful pediatric neurologist...so even if it's not PANDAS I expect that she would be able to give you some insights on what is going on. In that respect, I would say a visit to her would be worthwhile, even if you have to pay out of pocket.

[EAMom]

Dr.s dont understand because they are new dr. and he came to them like this so they havent seen what my "normal TJ is" and they tell me he has autism....he DOES NOT have autism. THese behaviors started after the fever!

 

You also might be interested in these Autism 1 broadcasts on PANDAS (I've only listened to Dr. K's so far myself, I didn't realize the others were there!)

 

http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

[Tenacity]

So sorry for your troubles. Hope this forum will be of some help to you.

 

A few thoughts:

 

The chicken pox vaccine is known to have triggered PANDAS exacerbations in some children. It's not inconceivable that your son had a preexisting, but undiagnosed, autoimmune condition, which flared up after he received the vaccination. Or maybe the fever was related to a new infection that had nothing to do with the vaccination.

 

Either way, you know something serious suddenly changed in your child, so you need to trust your insticts and keep looking for help. It's harder to get doctors to listen to you and study your child's case with fresh eyes, when some preexisting diagnosis or health issue may compromise their objectivity and serve as an easy excuse for them to be dismissive. Don't let the irresponsibly dismissive doctors prevent you from going on to find the doctors who may really be able to help.

 

Especially since you are not too far away, I strongly recommend you try to get your child in to see Dr. L. She has genuine expertise in neuroimmunology, and might be able to arrive at the right diagnosis -- or at least to take you some steps in the right direction. As costly as the consultation might be, if it led to a better understanding of what's going on, it could save you bundles of money, not to mention loads of grief, down the road. Although an upfront payment is required, I believe her office will send a claim in to your insurance company, so you may receive partial reimbursement.

 

One meeting with a genuine expert is more valuable than a bunch of meetings with a bunch of doctors who are simply overmatched by the complexity of the case.

 

Don't give up! Good luck!

 

Tenacity

[porkchop]

I read in the pandas threads that kids have bedtime rituals. Does that mean they have to have these in order to have pandas? My son does have issues about how the pillows have to be, and he wants his blanket over him just right, and he always have to have me lay on a certain side of him and in a certain way. This goes on all day long because all he wants to do is lay in bed and look out the window. As far as nightime issues, he doesnt seem to have any nightmares, he cant tell me what he dreams about anyway. He is normally a really sound sleeper, but when he has these episodes, he is a very light sleeper, waking up at seval times during the night at the slightest sound or movement. I took him to the dr. on Thursday because of a stuffy/runny nose and while waiting to be seen he did something that I have never seen before. He went around to every chair in the waiting room and sat down and stood up 2x and then did the same thing in every single chair...very weird! He is in his 12 day "episode", and should be back to normal on Monday, HOPEFULLY. It just sounds/looks so much like pandas to me. But I just dont understand the cycling of the symptoms every 12 days.

[KaraM]

I read in the pandas threads that kids have bedtime rituals. Does that mean they have to have these in order to have pandas?

 

No - not every child has every symptom. So for example, my dd8 has OCD, emotional swings, and ADHD like behavior. She doesn't have the tics, the urinary issues, the handwriting deterioration.

 

My son does have issues about how the pillows have to be, and he wants his blanket over him just right, and he always have to have me lay on a certain side of him and in a certain way. This goes on all day long because all he wants to do is lay in bed and look out the window.

 

he did something that I have never seen before. He went around to every chair in the waiting room and sat down and stood up 2x and then did the same thing in every single chair...very weird!

 

These behaviors definitely sound OCDish to me - a primary symptom of PANDAS.

 

It will be interesting to see what happens MOnday. Keep us posted.

 

Kara

Edited October 2, 2010 by KaraM

[peglem]

PANDAS does not require a bedtime ritual. Most PANDAS kids do have rituals, due to OCD, and many share similar rituals, but it is the OCD itself that is a symptom, not the way it is manifested. The 12 day cycle is puzzling, but I think it is a valuable clue in the hands of the right physician.