You mean we're not alone?

[poetmom]

What a relief to read through all your posts and see my thoughts and emotions reflected, that I can continue to tell myself I'm not crazy, and should continue to ignore all the people who say, even after a medical diagnosis, I'm making excuses for bad behavior, I'm reading too much into normal "weird little kid stuff," I'm making a mountain out of a molehill, the doctors are full of nonsense or (my favorite) my kid just needs better discipline.

 

So here's our story whole long story so far:

 

In Dec of 2006 my ds was a 2yo who could write most letters, recognize the word "Mommy" or his own name, sang constantly making up his own songs and memorizing the words to new songs with impressive speed, danced everywhere we went even putting on choreographed shows for the line at Wal-Mart, loved to be read to, loved to color, told jokes, used 5-syllable words appropriately, and spoke so clearly he stopped doctors and teachers in public who'd want to know "just how old is that child?" He was completely potty-trained. We were living in Atlanta, GA at the time.

In early Feb of 2007 his father took a new job and moved to TX while me and the kids stayed to sell the house. In late Feb 2007 I took all three kids on a trip to New Mexico where we all returned home sick. Overnight, my son changed. Suddenly, he was angry all the time. He didn't want to color anymore. He wouldn't let me sing or read to him anymore. He didn't want people to look at him in public and would angrily spit "don't look at me!". Until that point his father had been a stay-at-home dad from his birth so it made sense he would be acting out against the sudden change. I didn't think much about the fact that he'd started lining up all his dinosaurs in rows...

In mid-March he turned 3 and a two weeks later, at my wit's end trying to deal with his moods and feeling like a failure unable to take care of the kids without their dad, we moved to TX. Since it wasn't the plan, we were all crammed into Dad's tiny little apartment until the GA house sold and we bought one in TX. With both of us working (and ok, because I needed a break from him and hoped it'd be a distraction) I put him in preschool. Let's just say separation anxiety was of universal proportions. Though it broke my heart, I kept telling myself he'll get used to it, this will become routine, he's back with Daddy now, I'll go crazy otherwise, and this is going to fix everything he's feeling about all the upheaval in his life. Oddly, once he got over me abandoning him at school every morning, the teachers told me he acted fine...which only served to reinforce the idea this was all something I was doing wrong...

By mid April, however, my son was lining up dinosaurs, lining up cars, had confiscated my dishtowels and would fold and unfold, fold and unfold, fold and unfold them into infinitum in perfectly neat little squares - he'd lay them out in neat rows across the floor, then collect each to fold it again. It was the ONLY game he wanted to play with me - "Mommy, do you want to fold towels with me?" But I folded them wrong and he'd be furious. He hated getting anything gooey on his hands. Or crumbling on his hands. He couldn't stand to have "gross stuff" on his hands...

In late April, he quit sleeping. He was only getting about 2-3 hours sleep a night, usually in the early hours of the morning when exhaustion overcame him. Of course, I figured his horrible moods and tantrums were much attributed to sleep deprivation. Having had a diverse diet, he became very picky about what he'd eat.

Then he started to stutter - what I later realized was some kind of verbal tic - but rather that a normal stutter, it was like a stroke victim who couldn't get out a complete thought. Instead of, "Mommy, do you want to fold towels?" it was, "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." It drove me nuts because I was used to a highly articulate, very clear speaker and I thought he was just rushing. I'd tell him to Stop! Think about what you want to say! THEN ask me. Oh...if I could only take back so many times I was frustrated and angry with him not realizing he was as frustrated with himself!

Then, the end of April, he got an ear infection. The new pediatrician put him on penicillin and with in a few days WHAM! marked improvement. Of course, I didn't put two and two together. He went off the normal course of antibiotics and soon enough reverted back. I just thought we'd had a couple good weeks... But then he got another ear infection... by the time the third ear infection and course of antibiotics rolled around it was clear something was horribly, horribly wrong and that whatever it was antibiotics seemed to be bizarrely helping his behavior. (Never having heard of PANDAS I had no idea why.) Complicating the whole thing were a series of ear infections (9 that year), constant stomach aches, shockingly colorless bowel movements (anyone else seen this? it went away as suddenly as the rest of many symptoms did without diet change!), and a consistent low-grade fever...fever of 99-100 for two weeks straight, none for a few days, then back again. This particular symptom had his eventual pediatrician test him for leukemia early on just to be sure right away.

I took what was once a loving, outgoing, interactive child to one pediatrician after the other in my quest to find a new pediatrician - one that would not tell me "he's just a shy kid" when I wanted to scream "No, he's not. He's not MY kid!!" By now my ds wouldn't speak to anyone he didn't know. He would huddle behind me looking at the ground. He was starting to develop sensory issues - didn't want to be hugged or held. He wanted to sleep next to you, but didn't want you to touch him. He couldn't stand to have his hair touched anymore. He developed a terror of water. He couldn't stand to wear pants because the waistbands were "too loose!" or "too tight!" and would throw a fit wearing them out of the house and strip them off the moment we returned home. He couldn't stand the ceiling fan being on because the of air on his skin (i discovered one night as the culprit to a three hour nerve-wracking tantrum). He developed a sudden, piercing, ear-drum shattering screech that nearly caused several traffic accidents and sometimes seem to startle even him! He would flap his arms weirdly. He started holding things a certain way - scarves, barbie dolls, keychains - so they would drape over the backs of his hands because he liked the feel on the back of his hand and would incessently "pet" the scarf. He spent the entire reception at my brother's wedding folding the cloth napkins. He was having daytime and nighttime accidents. Oddly, at school, they continued to tell me he played and talked. They said he was "shy". My (did I mention now "EX")-husband took to telling me I was a bad mother, although my other two children were fine aside from their struggle to deal with a brother seemingly gone mad. (In fact, at one point during the divorce my confidence took a real blow when my ex claimed, despite by then two doctors agreeing it was PANDAS, there was nothing wrong with our ds and that I "broke him.")

Finally, at my wit's end, I called our pediatrician in Atlanta and told him everything and asked, "Am I crazy or does this sound to you like something's wrong." Folks, he called it. From 1000 miles away he said, "That is not the child I've known since birth and you have a big problem. I can't diagnose him from Atlanta, but if he were still in my care the first thing I'd look at is PANDAS. You need to find a pediatrician and not stop looking for one until one listens to you. I recommend you consider a pediatric neurologist." Finally, I'm not crazy!!

 

So...I quit taking my son to the doctor and starting interviewing pediatricians without him. If they looked at me like I was crazy, he never even saw them. The one we have now listened to me quietly for a long time and then said, "I wish I could tell you something better, but it sounds like you have a problem. I'd like to see him. Without seeing him, based only on what you've told me it sounds like he might actually have PANDAS or fit somewhere on the autism spectrum. I'd like to go ahead and schedule you immediately to see an infectious disease specialist. Please bring your son to me as soon as possible. How about tomorrow?" At the first appointment, without question, since I had reported a marked difference on antibiotics (one had no effect, only the penicillins did!), because even with his help getting an appt it was going to be 6 weeks to get into the infectious disease specialist, this pediatrician put the child on penicillin indefinitely saying, "It can't hurt. Let's give it a shot." After six weeks of penicillin (that lasted a little over a year) his new pediatrician, walked into the exam room, took one shocked look at my cheerful son who immediately greeted him with a smile and started animately explaining how we'd been writing the whole alphabet on the exam table paper, said stunned, "This isn't the same child." I replied, "THIS is my child. This is what I kept trying to explain to everyone."

 

Now here's the part that really scared me. After everything I'd experienced with him, before the final diagnosis but after finally getting confirmation I wasn't a nutty, horrible mother, after finally feeling like I was moving in the right direction, I went to his preschool and told them, "Look, something's wrong and here's what they think it is..." And they responded, "We had a meeting and were going to approach you when you came to pick him up today. We think he might be autistic." I was stunned. The whole time they had assured me he was shy, but seemed fine. They were concerned because suddenly he wasn't interacting with other children anymore. They said they'd been watching him and he didn't talk to any of the kids. He wouldn't make eye contact with them anymore. He had taken to sitting at a table for hours staring into space. If you approached him, touched him, and he turned to you (no eye contact), only then would he respond. It was all I could do not to break down and cry right there.

 

The infectious disease specialist examined him, did some tests, etc.etc.etc. and determined he did have PANDAS saying, "Many parents of autistic kids come in looking for answers and thinking PANDAS when it's not, but your child fits the classic description of PANDAS more perfectly than any child I've ever seen." Great. Well, at least it was finally an answer.

 

He spent a year and a half on penicillin. He still has symptoms but we are mostly under control. I am holding my breath for what I am led to believe can only be an inevitable repeated episode. When he is ill, his remaining symptoms worsen, but he hasn't had strep again... All in all, I can happily say he can sometimes be "annoying" to some people for the most part people wouldn't currently think there was any serious issue, that he just needs "discipline." He does need structure. He does NOT deal well with change. He is reading simple first-reader books and proud of himself. He plays!! With other children!!!! In fact, until the past few days when he developed a cold, wet the bed, started refusing to wear pants, and played insomnia boy again (yes, I'm holding my breath), he has now been "normal" for so long that I have the strange sensation I imagined the whole thing and he doesn't REALLY have PANDAS. I should be grateful, but it has its own unsettling effect... I do hope this offers some one out there hope, because at one point before I realized there was actually something wrong I would find myself so stressed I was subconciously making excuses to be away from him and would see him in a rage and wonder if this was the child I was one day going to visit in jail for having committed murder...

 

He starts Kindergarten on Monday. I considered homeschooling him (my 16yo ds has been homeschooled the past four years for academic reasons) but I would like to see him in a structured, highly social environment. I was terrified to take him yesterday to meet his teacher. Nearly cried tears of joy when he hugged this complete stranger at her request! THREE TIMES! My heart jumped for joy when he started playing with another little boy while I talked to other parents. Needless to say, I'm a little tentative about this whole thing. The school nurse, prinicipal and teacher are very interested in PANDAS and already showing support and willingness to work as a team. I meet with them Wednesday afternoon to explain in detail what they should watch for as my daytime eyes and ears, what they can expect during an episode, what needs to be dealt with but are most definitely NOT discipline issues. His preschool teachers were wonderful, but watched this evolve with me so had an entirely different and better understanding of the whole thing. He also wasn't expected to sit quietly and do academic work.

 

I read with interest the thread with links to SchoolNurseNews. Any other suggestions anyone might have for talking to teachers, dealing with episodes/symptoms in a classroom, and KEEPING YOUR CHILD HEALTHY (besides a bubble), I am all ears and forever grateful....

 

Wow - that was a long story, huh? If you made it all the way to the end here, thanks for listening. No one ever seems to really get it.

 

Robin

Mother to ds(16), ds(5), dd(3)

Aunt to (my half-sister lives with us now) to ds(13), ds(7) and ds(7)

[Megs_Mom]

Hi Robin, major hugs to you! I am at work, but look forward to reading this later. I just wanted to say hi & welcome. Also, that if your son had 9 ear infections in a year, you may need to take him to an immunologist to test for CVID or selective Igg deficiency - both of which seem to go along with PANDAS. Here is a quick link that you may want to read: http://www.primaryimmune.org/publications/...s/book_pats.htm. Read chapter 2 on CVID, and chapter 10, IgG subclass deficiency. We are just starting to test our daughter for these as well.

 

Don't feel crazy, we are all right here with you. If this is "not your child" then you need to help him find his way back! Best Susan (Meg's Mom)

 

What a relief to read through all your posts and see my thoughts and emotions reflected, that I can continue to tell myself I'm not crazy, and should continue to ignore all the people who say, even after a medical diagnosis, I'm making excuses for bad behavior, I'm reading too much into normal "weird little kid stuff," I'm making a mountain out of a molehill, the doctors are full of nonsense or (my favorite) my kid just needs better discipline.

 

But then he got another ear infection... by the time the third ear infection and course of antibiotics rolled around it was clear something was horribly, horribly wrong and that whatever it was antibiotics seemed to be bizarrely helping his behavior. (Never having heard of PANDAS I had no idea why.) Complicating the whole thing were a series of ear infections (9 that year), constant stomach aches, shockingly colorless bowel movements (anyone else seen this? it went away as suddenly as the rest of many symptoms did without diet change!), and a consistent low-grade fever...fever of 99-100 for two weeks straight, none for a few days, then back again. This particular symptom had his eventual pediatrician test him for leukemia early on just to be sure right away.

[poetmom]

Hi Susan,

Oddly enough, no one ever mentioned Igg deficiency until I got to talking with my own general practioner about having had CHRONIC strep as a child (anyone surprised here??) only to become a carrier in my early twenties and until I had my mostly mutilated by that point tonsils removed... She suggested Igg and I agreed only thinking of Collin. She also thought it was worth looking at me first before taking blood from him. Mine was normal, but I'm still thinking about it for him anyway. I did not it actually does go along with PANDAS, but makes a whole lot of sense so you may have just tipped the scales on that decision.

Once he got on the penicillin twice daily, he only had one more ear infection early on and now...nothing. I had already seen and ENT and only had to schedule the date to put in tubes when *poof* the infections quit.

I will be interested to hear how those tests turn out for Meg.

Thanks and very good to meet you.

Hugs back,

Robin

 

 

Hi Robin, major hugs to you! I am at work, but look forward to reading this later. I just wanted to say hi & welcome. Also, that if your son had 9 ear infections in a year, you may need to take him to an immunologist to test for CVID or selective Igg deficiency - both of which seem to go along with PANDAS. Here is a quick link that you may want to read: http://www.primaryimmune.org/publications/...s/book_pats.htm. Read chapter 2 on CVID, and chapter 10, IgG subclass deficiency. We are just starting to test our daughter for these as well.

 

Don't feel crazy, we are all right here with you. If this is "not your child" then you need to help him find his way back! Best Susan (Meg's Mom)

[ShaesMom]

Welcome Robin,

 

It sounds like you have had quite a journey. You are very lucky that you were able to find a doctor who believes in Pandas and is treating your son. My dd7 started second grade on Wednesday and it sounds like you've already read my post stating I was scared to death to send her. So far so good this week. I hear she even raised her hand and volunteered on the first day. If you haven't done so, I would ask about getting a 504 plan in place for your son. this will allow you to pull him out of school if there is an outbreak of strep or the flu for an extended period of time.

 

I agree with Meg's Mom. Find an Immunologist and have a complete immunological workup done. If your son has had that many ear infections he clearly has something else going on besides the Pandas. My dd had all the blood work done in June and was dx'd with an immune deficiency called selective antibody deficiency a form of CVID (common variable immune deficiency). Since that time, nine other kids have had this bloodwork done and all nine have come back being deficient in one way or another. We are fortunate that our Immuno Doc has started her on monthly IVIG therapy.

 

In addition to the chapters she recommends, I would also recommend chapter 1 for the basic overview. You should also checkout the Prevnar website and click on the dancing Pneumo guy. This will take you to an animated video and explain what the pneumococcal titers tests and the Prevnar vaccine relates to. You will also want to go to www.jmfworld.com and click on the link to find an expert in your area. If nothing is listed call the Immune Deficiency Foundation at 800-296-4433.

 

You will want to request the following tests:

 

IGG & IGG subclasses

IGM

IGA

Pneumococcal titers

Diptheria Titers

Tetanus Titers

 

 

Good luck!

 

Sam

[thereishope]

Wow. Your story has a lot of simillarities to my son. From the separation anxiety and then being okay when you left to the " "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." . Which I NEVER realized might be a tic. I always thought he was "ticless" (if that's a word). What enlightenment. I so happy you shared that part.

 

I look forward to hearing from you more. Welcome to the "club".

[thereishope]

Your story has a lot of simillarities to my son. From the separation anxiety and then being okay when you left to the " "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." . Which I NEVER realized might be a tic. I always thought he was "ticless" (if that's a word). What enlightenment. I so happy you shared that part.

 

I look forward to hearing from you more. Welcome to the "club".

[Suzan]

Hi! I had to skim (sorry but I'll have more time later) but your story sounds SO MUCH like ours in regards to sensory issues. My oldest daughter went from a loving child to not wanting to be touched, freaking out with the fan air, flapping hands, the list goes on.....The lining up toys reminded me of these pictures that I just have to try to post. This was when things were bad but not always so bad and of course no one would get it that I was starting to think there was a problem. I mean, what kind of kid is obsessed like this with snow globes? And this is only a small part of what was going on. I don't know if these links will work to my snapfish account... I remember this day so much, I love her so much and it breaks my heart to see these pictures knowing now what I know.

 

http://images1.snapfish.com/232323232%7Ffp...C56%3A%3Anu0mrj

 

http://images1.snapfish.com/232323232%7Ffp...%3C56%3A6nu0mrj

 

Also, I wrote this story years before I knew anything about PANDAS and we were just on the sensory path. It's interesting for me to read this through the PANDAS lense. http://www.sensory-processing-disorder.com...PD-Journey.html

 

I must be nutty tonight for digging all this up, but your story was really bringing up a lot for me. Thanks and welcome!

 

Susan

[poetmom]

Suzan,

 

I didn't get a chance yet to read the story on your link but will do so tomorrow. I was able to see the pics and and WOW - I had to show those pics of your dd to my 16yo son and we agreed the one of her asleep next to the snowglobes ... we both have that EXACT image of my son in our heads asleep amid stacks of neatly folded dishtowels!

 

Thanks for sharing.

 

Robin

 

Hi! I had to skim (sorry but I'll have more time later) but your story sounds SO MUCH like ours in regards to sensory issues. My oldest daughter went from a loving child to not wanting to be touched, freaking out with the fan air, flapping hands, the list goes on.....The lining up toys reminded me of these pictures that I just have to try to post. This was when things were bad but not always so bad and of course no one would get it that I was starting to think there was a problem. I mean, what kind of kid is obsessed like this with snow globes? And this is only a small part of what was going on. I don't know if these links will work to my snapfish account... I remember this day so much, I love her so much and it breaks my heart to see these pictures knowing now what I know.

 

http://images1.snapfish.com/232323232%7Ffp...C56%3A%3Anu0mrj

 

http://images1.snapfish.com/232323232%7Ffp...%3C56%3A6nu0mrj

 

Also, I wrote this story years before I knew anything about PANDAS and we were just on the sensory path. It's interesting for me to read this through the PANDAS lense. http://www.sensory-processing-disorder.com...PD-Journey.html

 

I must be nutty tonight for digging all this up, but your story was really bringing up a lot for me. Thanks and welcome!

 

Susan

[poetmom]

Hi Sam,

 

Great info included here and I'll make time over the weekend to read further as suggested - thanks so much.

We have a follow-up appt on Sept 16th and I will definitely ask all about this. I see not all insurances cover these tests, but as I just had an Igg test myself and haven't heard a denial from my plan, maybe our luck will hold... keeping fingers crossed!

 

Thanks,

Robin

[poetmom]

Vickie,

 

It's surprising to me to hear anyone finds similaries with this story... it's been so hard to explain to people so I'm relieved to have found a "club" though I'm sorry there are members to begin with!

 

It took me a long time to realize this was a tic. It drove me crazy - it was frustrating trying to talk to him and then he'd get so mad not being able to say what he wanted and with me getting frustrated...poor kid wouldn't talk to me at all sometimes because he was so frustrated. :-(

Oh...hindsight, you know.

 

Thanks for the warm welcome!

 

Robin

 

Wow. Your story has a lot of simillarities to my son. From the separation anxiety and then being okay when you left to the " "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." . Which I NEVER realized might be a tic. I always thought he was "ticless" (if that's a word). What enlightenment. I so happy you shared that part.

 

I look forward to hearing from you more. Welcome to the "club".

[thereishope]

The avoidance of touch happened with my son too. That's one of the things that prompted a sensory profile on him. He esp hated having his head touched. If you touched his head, he'd scream that his hair needed to be flat and would slap his head over and over to get it just right. The thing is he had a buzz cut. There was no way his hair could get messed up. Now I see it was the need for that "just right" feeling. When my in laws would visit, they just wouldn't understand not to pat him on the head, or take it personally that he wouldn't hug them. It always annoyed me. They enter the room, try to hug him, then let out a heavy sigh when he shrugged away. I hated that sigh! But those are the same people who called him Monk. So, that sums it up for you.

[dcmom]

Thank you for your post, Vickie! My daughter is doing well right now, but she still has hair issues. If I touch her head, or hair, she gets mad and has to shake it around and rub it to fix it. This is new for her. Forget brushing it- she freaks out- I now only do that on bath night. At her worst, she would go to the market in her pjs (yes, sometimes with a stain on the front), hair not brushed, and very short tempered. (Good thing I am a confident mom- because this was humbling).

 

It is so great to be able to connect and share with other parents going through the same stuff!

 

BTW, a couple of weeks ago, I told my dd that I knew another mom who had a daughter with pandas, and that she had the same issue with wiping after urinating. I could see the interest and almost joy in her eyes when she knew she was not alone....

[ShaesMom]

WOW-My dd throws a fit every time we try to brush her hair as well. I never even considered it might be a Pandas thing. Needless to say, the only time her hair is combed is after a shower and even that takes some wrestling.

[pixiesmommy]

SOO much of this hits home!! The crawling out of the room b/c you don't want to wake them, the frequent night wakings due to light sleeping, etc. The spinning, the liking to hang upside down, the picky eating, on and on and on...

 

What is the wiping thing? My DD won't wipe after urinating no matter what and I wonder if that is a SID thing or a PANDAS thing or just a thing!?

[dcmom]

Pixiesmommy

 

One of my daughters major issues during her initial pandas episode were urinary. She started with having to go frequently and/or never able to get a dry feeling when wiping. This got worse, until she would sit on the potty and wipe for 40 minutes after urinating. This eventually led her to avoid urinating at all expense, including many accidents. She eventually wanted me to wipe her (for some reason this relieved her from having to struggle to get dry), I would wipe, and she would yell that I don't do a good job, but then she could get on with her day. She is much better now, but still has me wipe her if I am available.

 

Public bathrooms are very difficult to her, although she is doing better with that as well.

 

I know at least one other pandas girl that had almost the exact issue. I also saw a write up in a pandas study that many of the kids had "excessive toileting issues".