Son's pandas story

[norcalmom]

I had to write this up to submit for cunningham's test, so thought I would use it to post as my son's story. He is currently 11, this all started jsut before his 10th bday.

 

Family history – no known RF.

Rheumatoid arthritis on mothers side – maternal grandmother, and cousin on mothers side. cousin has acute pediatric onset RA.

Other family history – immune related – mother (me) lichen planus.

Austin – GERD/Reflux for approx first year.

Pneumonia at age 6

 

Mother: my rapid strep was positive, but culture negative. I may do again. Father and sibling (sister 13 years) negative-These taken in October.

ASO titer was normal and that the Anti-DNase B titer was 60 taken in September.

 

Onset:

Feb/ March 2009 – first symptoms, extreme irritability. Disgust at hearing parents chew, swallow (even saliva) , eat. Within 2-4 weeks, nightmares, bed wetting, obsession with death, sever tic, daytime frequent urination. We didn't know about the urination - it wasn't every 5 minutes like some people we've read about, but it was bad enought the teacher started to tell him he needed to wait to go because he ws disturbing the class too often asking ot be excused. We just thought that was some of his typical antics at the time. Took to doctor for tic (did realize other behaviors were symptoms of anything). Tic is severe – head tic, and facial grimace. Head tic causing pain. He was not ticcing during class, but would go crazy outside, also at home he would have periods of it, mainly when going form one activitiy to another or walking around. Once engaged it would stop. Basesball season was painful to watch, he did it constantly - until the split second he was about to hit, pitch or field the ball, I though he was going to get hurt. Took to neurologist when tic was not getting better he said probably transient tic related to stress. (no known stress factors in his life however). Also, had “growing pains” in feet (possibly knees as well) around his time.

 

By mid July almost all symptoms were gone, this happended slowly, but I thought the docs were right. Tansient tic. Eating together issue and irritability persisted, but better. No ticcing – at the time, that was our biggest concern.

 

In mid August, tic returns, along with sleeping issues-can’t fall asleep, waking up due to night mares, as well as waking earlier than usual, obsession with death, bed wetting, and separation anxiety. This is following week long “croupy” cough. Throat culture negative. All symptoms appear within several days of each other.

 

Early September – add in new symptoms – looking directly into the sun (in a tic-like manner), stomach clenching, eye blinking (but head tic seems to be lessening). Took to Dr Margo Thienemann in Palo Alto CA. Diagnosed Pandas. Started 500mg Azithromycin for 10 days, decrease to 250 on-going. Within 5 days symptoms greatly improved. Not gone, but 70?% better. Looking into sun – gone. Head Tic takes longer, but disappears as well.

Also in early sept – took to another doctor, full allergy panel, lead, mercury, several other tests. Red cell and hemocrit on low side of normal (4.49, 37.8)

Zinc low out of range at 8.6, Magnesium also low (but in normal range at 4.8) all else normal.

 

Just before Thanksgiving –mild tic, mood, separation issues, all resolved in a few days. I started him on prednisone burst, but on 3rd day he got a cold so had to stop. Upped the Azithromycin to 500mg/day added some Advil. Tics etc only lasted 5-7 days. Mild compared to other two exacerbations. Wondering if the onset of the old caused it.

 

November – 2 days of head tics, not constant just at home in the morning – two days before leaving for sleepover science camp. He was fine at camp(teachers own child has epilepsy and he was watching Austin like a hawk!) , and no tics when he returned. That probably was stress realted.

 

Things had been going very well – tics basically gone (maybe a few days where he would have a few head tics, I remember about 5 days of a minor vocal tic, but mild) No looking into the sun since September, mood and eating together still an issue, but we could take a ride in the car without him having him kick my seat because he could hear me “gulping” my saliva. Separation anxiety improved (TOTALLY gone actually – disappeared early February). Overall, greatly improved.

 

Then, Late March starts looking into the sun again. Irritability and irrational behavior. A couple nights of bed wetting. Swallowing noises unbearable to him. I was fighting a cold – and he got a cold two weeks into this exacerbation (when we were on vacation in Hawaii). Increased Azith, and added some Advil a few of the bad days (and the day we had to ride on plane together – had to get him a seat away from me because of my “swallowing noises”).

Doesn’t look into sun in HI although he wants to – says it hurts . No thoughts of death or separation anxiety this time, mild insomnia. The looking in to the sun tic is mild – and if it were a head tic I wouldn’t be that concerned about it because he doesn’t do it often enough to cause pain..but these are his eyes. We make him wear dark glasses, hat, and try to make him stay int he shade, but there isn't any at school or on the baseball field.

 

I would call his exacerbations mild compared to the initial two before we started the Azith, however is it ever mild to look directly at the sun?

And the swallowing issue has never completely gone away. It gets better, I even bit an apple in front of him once and he didn’t notice , but never disappears. Same with irritability. We don’t eat in the same room any more (haven’t since August). When we eat out, we have to go to loud busy places and we can really only get away with that when he is doing really well.

 

Saw gastroenterologist because of some diarrhea, and wanted to rule out celiac. No celiac, but came up low IGG (704).

 

Saw immunologist and have lab order (which we will do when we do the Cam Kinase blood draw) for

IgG, IgM,IgA, (IGP) g

IgG subclasses

Humoral Immunity panel

Pneumococcal IgG aB (PNAB 12 ) g

Haemophilus Influenza b AB (HAET) G

T & B cells

Lymphocyte mirogen screen (LMS) GRN X2

 

thats where were are right now. Hope this helps someone else. I searched everywhere trying to find "looking into the sun tic" when that started. Maybe somone will see this and their child's odd behavior and know they aren't alone. I also didn't know that "disgust" can be a type of OCD. Sometimes its a precursor to a behavior that alleviates the feeling of disgust (like washing hands). Initally we thought that he was sensitive to noises, and the first exacerbation that might have been true, he was soooo irritable about everything. But then we found that the only thing that REALLY bothered him was his parents chewing and swallowing - he's fine with other people. What may have started with teasing at the table with his older sister about manners, chewing w/mouth closed, talking and eating, typical sibling preteen bickering, and turned into obsession. Then again, initially we though he just needed a hair cut so he would stop jerking his head around - he told us he was getting his hair out of his eyes when his head tic started. It was pretty obvious after a couple days that was not the case!

 

Thinking about IVIG. Hopefully Cuningham test will give us something more conclusive to go on.

[kimballot]

Thank you so much for posting this. I learned a great deal.

 

I've never heard of a sunlight tic - but it sounds scary as a parent. Have you talked to an opthalmologist about this? I am curious as to how dangerous it actually is (I really do not know). I know lots of kids with developmental disabiities or visual limitations tend to be drawn to the sun, so I can imagine that it is pretty powerful source of stimulation. I wonder if there is a safer way for your son to fulfill that need if it is really bad for his eyes.

 

Hopefully you will get some answers soon with the cunningham test and get some direction with treatment. Please keep us posted.

[thereishope]

Thank you for sharing. Did you get treated for strep even though the culture came back negative? I'd trust the rapid. if that rapid came back +, I don't even see the reason why they cultured it.

 

You're going to think I'm crazy for asking this, but how was his vitamin D levels when he started the "looking at the sun" tic? Could his body have been telling him something?

Edited April 27, 2010 by Vickie

[colleenrn]

I was also wondering if you were treated for strep b/c of the positive rapid test? I hope so b/c a positive rapid is positive strep no matter what the culture comes back as. Sometimes the nurse swabs two swabs at the same time and the culture swab just may not have been a good sample. If you were not treated I would do that asap so you are not a source of exposure. It also doesn't matter if your strep titers were normal, that sometimes happens. Have you had everyone in the house cultured (72 hour culture). If not, I would do that also.

Colleen

[norcalmom]

I am going to get cultured again - the rapid strep culture was for me - to rule out my being a carrier. The line was very faint, but doc said that is usually the case in carriers. I did start on the antibiotics, but when hearing the culture came back negative, the doc said the culture is far more reliable, so stopped. The rapid strep does have a false positive of 2% (depending on what rapid test used and what site you check). There are a couple other things that live in throats of certain individuals that react with rapid strep test – but don’t grow in culture-because they aren’t strep.

 

Vitamin D levels were slightly low at 25ng/mL - test results say that suggests insufficiency(between 20 and 30), but not deficiency (less than 20). He now takes a multi with vit D, didn't before. That’s a really good catch – didn’t think of that. I may add the D3 drops to see if makes a difference. Seems like this is THE vitamin right now, and we are all low on it…I came up slightly low on my annual exam.

 

That is interesting about kids with developmental disabilities being drawn to the sun. I didn’t know that. He also flaps his hands sometimes– he does it A LOT when he is in exacerbation, constant if not engaged in an activity. I know that is common with autistic kids, he’s not. Said his first words before 6 months, had short sentences at 12 months. Very social, picky about who he hangs out with, but generally social even in exacerbations.

 

We are currently also in the middle of having him evaluated for giftedness and any other disabilities (twice exceptional). Maybe it’s just the pandas, but if this is how his brain is working right now, we need to do whatever we can to make him more successful in school, so we decided to have him evaluated before middle school. I’ve been putting that off for years. I didn’t want to put a number or label or a number on him, and I wasn’t’ going to medicate him for mild ADD so I didn’t see the point. I was preparing to do it last winter, after his 4th grade teach said to me “I’d be astounded if he was not very gifted, but I feel there is still something getting in the way of his learning, but I don't know what it is”. I was looking for the right person to evaluate him, when all the pandas stuff broke loose.

 

He’s always exhibited signs of ADD as well as giftedness (many of them are the same signs!) but he seems to walk the line with the ADD – pays attention just enough to get by. Disrupts the class just enough to entertain himself but not get sent to the principal’s office. In retrospect it seems like every fall the teachers rave about him and how bright he is, and then come the winter conference we get feedback that he isn’t focused (but they don’t think its ADD, or ADHD) , talks to others, blurts out answers (when paying attention).Last year we thought the fact that he was frequently asking to go to the bathroom as part of that behavior, until I read it was a pandas symptom. He rushes through tests – missing lots of details, forgets to turn in work, doesn’t thoroughly read instructions…etc. Handwriting horrible, but it’s always been pretty bad. One thing I did notice with his handwriting last year was that it looked like he’d often go over a letter that he already wrote correctly underneath. He still does this a little bit – maybe a couple times in a sentence, where as last spring it was probably two letters per word.

 

Each year we’d think he’s just going through a phase, or that he was reacting because his dad had been traveling so much and his routine/emotional state was disturbed because of that. Maybe he was getting exposed to strep and reacting, and it was getting worse every year. That’s what I think now. I’m glad he got a tic – it was such a physical in the face thing you couldn’t make a excuse for, and it made me realize that the mood, bedwetting, and phobias were happening at the same time. I’m convinced that if it happened again it would fit the “sudden, severe, onset” characterization.

 

He’s had a couple other phobias in the past– out of the blue in 3rd grade – water – he’s swim in it but didn’t want go on a trip where the car would go over a bridge, or plane over water, or god forbid a boat. And dogs. But there are sooo many kids afraid of dogs, and his fear went away when we got a dog. The water thing was a little weird, but it wasn’t too the point where we couldn’t get him in the car or plane, just quirky and annoying.

 

I don’t give this much credence, but Dr K’s site has that “phenotype” of pandas kids – very early language development, a mother who is mathematical or computer savvy, and mother may exhibits OCD herself. I don’t have an “OCD bone” in my body, but I did major in computer science and mathematics. So I’m reading all about the pandas symptoms and seeing my son, and then I read about the language development and mother’s spatial skills. What are the chances of that? I’m thinking it’s a little self selecting – because most parents that find Dr K (especially a few years ago) must be bright and technically competent, and could possibly be that we in Silicon Valley area had a bad strain of strep so there is a large group of us computer geek moms. Still spooky.

 

Haven't taken him to opthamologist yet. Its on the list. He's really sick of doctors. I don't think it is hurting his eyes right now , it is such a breif glimpse. I've done it myself to check it out - it happens the most at sunset -this is when baseball games are played - when he is in the field and sun is in line of sight. I'm jsut afraid someday he'll do it longer, or start another compulsion like cutting himself.

[AmberM]

Your story was very helpful to me, thanks for sharing. We're just starting out on our pandas journey and it really is great to find stories as detailed as yours. My daughter has autism and we've been doing biomed for the last year and a half for some of her problems. One thing I was going to mention is that most DAN! dr's feel that the reference ranges for vitamin d are pretty outdated and a score in the 20's should be considered pretty low. When we first started, my daughter was 12mos. old and had a vit. d level of 29. After supplementing with 3000iu's daily for a year and a half, it's only up to 48 so it has taken quite a while to get there. We are hoping to get it up closer to 70 or 80. The recommendation we follow is 1000iu's for every 25lbs of body weight.

 

My levels were at 33, 3 mos ago and I've been able to raise it to 55. So if your son doesn't have any gut issues or absorption issues it could rise quickly, but it would still take a lot to get him in the toxic range. We check every 3mos. just to keep an eye on things. Oh, and we live in Southern California and my daughter runs around the backyard in a diaper all day!

 

Thanks again for sharing all your info. As a child, I used to stare at the sun all the time......I didn't know it was weird. But my eyes are pretty healthy despite the abuse I put them through.

-Amber

[norcalmom]

Thanks for that info Amber. And for telling me about your eyes! I am definatley going to up his Vit D now. Are you supplementing with D3 only?

[AmberM]

My daughter is on a whole slew of supplements because of her deficiencies and gut issues. We're sort of on a break from most of it.....trying to work out some problems she is having with constipation. Anyway, she is on calcium, magnesium, and vit. d3 right now. I don't give the cal/mag because of the d3 though. She is dairy free and needs the calcium because of one of the meds she takes. I really like the Pure Encapsulations brand of d3 but Carlson's d drops are good too and probably easier to find. I don't know if that was helpful at all. Also, try to find drops that are measured in 1000iu's per drop......it makes it so much easier!

-Amber

 

Thanks for that info Amber. And for telling me about your eyes! I am definatley going to up his Vit D now. Are you supplementing with D3 only?

[norcalmom]

Thanks - yes - it is always helpful when I dont' have to spend lots of money searching for the right supplement, or one my son will take that is dosed properly! So sorry to hear about your daughters gut issues. I was concerned about that with my son, he'd had some diarrhea including some bright green(I'm talking flouecent - it was bizarre) diarrhea, which is what sent me to the gastroenterologist. It was a surprise his IGG came back low, leading us to the next step. I also had him on a GF diet for a while trying to rule out celiacs, that was tough. I have to say I felt better after 4 weeks with no gluten (my son didn't really change).