pandas in a three year old

[fuelforall]

My three year old with sligtly high strep titers (203) has been acting very strangely. At bedtime, he won't settle down. He giggles like a crazy boy, no apparent reason, may run around and start throwing things, refuses to settle down. Then he screams he wants Mommy. Then he screams he wants Daddy (daddy is sitting there in front of him)

He has always had questionable neurological issues- he has poor balance which we think may have been related to hearing issues but he never saw anything in front of him below waist level for the longest time. Sometimes he will growl and not use words. Or he will just lie on his back and squirm. Tantrums are one thing, odd behavior another.

 

So... what the heck? Is he being a terrible three? Should I relax? What kind of test should I do? He is very smart so... I don't know what that means in the scheme of things.

 

Michael

[coco]

Michael - did you also do the DNASE? Have you had him on antibiotics?

[thereishope]

Do you have your 3 year old on antibiotics right now? That giggling like crazy...I've read some on here say they experienced that with yeast overgrowth.

 

As for age appropriateness, all I can do it relay it compared to my kids. I have a 3 year old girl. She is clingy with Mommy (has been since the day she was born) and she has a hard time settling down sometimes but none of the other things you mentioned.

Edited April 8, 2010 by Vickie

[sf_mom]

Our almost three year old twins had some odd behaviors and given our situation (exposure to RF and Kawasaki's) we tested them. BOTH have PANDAS range Cam Kinase, both have immune deficiencies, both have low white blood count, both have high lymphocytes, strep pneumo antibody titers deficiencies, etc. They are both on antibiotics, taking high dose probiotics, b-12, bentonite clay, fish oil and are not allowed in community settings with other children. We have had one unexplained illness in Dec. and one cold about a week ago (they share almost every illness). ALL the concerning behaviors are resolving, rashes, mood and skin coloring. We are hopeful they will not need more aggressive treatment but are watching them closely.

 

TEST, TEST, TEST..... Dr. K was not comfortable treating them with IVIG at this time. Last rage in our twin boy happened when our older son was exposed to strep throat at school.

 

-Wendy

 

 

 

My three year old with sligtly high strep titers (203) has been acting very strangely. At bedtime, he won't settle down. He giggles like a crazy boy, no apparent reason, may run around and start throwing things, refuses to settle down. Then he screams he wants Mommy. Then he screams he wants Daddy (daddy is sitting there in front of him)

He has always had questionable neurological issues- he has poor balance which we think may have been related to hearing issues but he never saw anything in front of him below waist level for the longest time. Sometimes he will growl and not use words. Or he will just lie on his back and squirm. Tantrums are one thing, odd behavior another.

 

So... what the heck? Is he being a terrible three? Should I relax? What kind of test should I do? He is very smart so... I don't know what that means in the scheme of things.

 

Michael

[airial95]

Trust your gut - ifyou think something is wrong - it probably is. You know your child better than anyone else.

 

Our 2 1/2 yr old had some of the same behaviors - the unexplained giddyness, what we call the defiant indecisiveness (like the screaming for Daddy when he's there, but then not wanting Daddy, but Mommy, but really wanting Daddy - maddening!) He aslo severely regressed verbally as well - but we were so focused on the violence of his rages at first it went unnoticed.

 

He's been on abx for over 2 months now and things have improved significantly - we're not there yet, but it's much much better. Hang in there!

[tylermom]

Wendy, you said that your twins were exposed to kawaski....my kids have been exposed to this 3 years ago and are around my nephew that had it all the time. in fact my nephew just had his aso titers checked last week due to a rash and his titers were 600 so he is now on abx for 10 days. my nephew does not have any tics, ocd or bad behavior but both my boys do. could my boys PANDAS like symptoms be caused from my nephew having kawasaki 3 years ago and them not being treated with abx? i've been posting on this board for about 3 weeks now since my 4 year old ds's counselor suggested PANDAS could be causing all these problems. my ds has not had a strep throat infection that we know if since he was 4 months old. but like i've posted on here before my dd and oldest ds have had tons of strep infections along with my dh. my problem i'm having now is trying to find a dr. that believes in PANDAS and with my insurance i have to be referred by my kids pediatrician. our pedi doesn't believe in it so he's not going to refer us. the pedi says that if they were treated for strep at the time that they had it that they should be fine and the tics, ocd and bad behaviors are caused from the tourette's and not the PANDAS. i can't afford to go to Dr. K because he does not take my insurance and even if he did my pedi would not refer us. so now i'm on the hunt for a pedi that's in my network that will test my kids for all of this.

 

jennifer

[sf_mom]

I believe Kawasaki's could cause PANDAS symptoms similar to auto-immune aspect of RF. BUT, I'm not a Dr. and just a mother who has had some very sick children. It is very possible your children had undiagnosed Kawasaki's or a resilient strain of strep associated with Kawasaki's/RF. The link is very strong in our case history.

 

Could you afford to consult with Dr. K (I think he is $500 now)...... Once you have a consultation, he is always happy to speak with your treating Dr. and guide them with a recommended treatment.

 

-Wendy

 

Wendy, you said that your twins were exposed to kawaski....my kids have been exposed to this 3 years ago and are around my nephew that had it all the time. in fact my nephew just had his aso titers checked last week due to a rash and his titers were 600 so he is now on abx for 10 days. my nephew does not have any tics, ocd or bad behavior but both my boys do. could my boys PANDAS like symptoms be caused from my nephew having kawasaki 3 years ago and them not being treated with abx? i've been posting on this board for about 3 weeks now since my 4 year old ds's counselor suggested PANDAS could be causing all these problems. my ds has not had a strep throat infection that we know if since he was 4 months old. but like i've posted on here before my dd and oldest ds have had tons of strep infections along with my dh. my problem i'm having now is trying to find a dr. that believes in PANDAS and with my insurance i have to be referred by my kids pediatrician. our pedi doesn't believe in it so he's not going to refer us. the pedi says that if they were treated for strep at the time that they had it that they should be fine and the tics, ocd and bad behaviors are caused from the tourette's and not the PANDAS. i can't afford to go to Dr. K because he does not take my insurance and even if he did my pedi would not refer us. so now i'm on the hunt for a pedi that's in my network that will test my kids for all of this.

 

jennifer

[simplygina]

My three year old with sligtly high strep titers (203) has been acting very strangely. At bedtime, he won't settle down. He giggles like a crazy boy, no apparent reason, may run around and start throwing things, refuses to settle down. Then he screams he wants Mommy. Then he screams he wants Daddy (daddy is sitting there in front of him)

He has always had questionable neurological issues- he has poor balance which we think may have been related to hearing issues but he never saw anything in front of him below waist level for the longest time. Sometimes he will growl and not use words. Or he will just lie on his back and squirm. Tantrums are one thing, odd behavior another.

 

So... what the heck? Is he being a terrible three? Should I relax? What kind of test should I do? He is very smart so... I don't know what that means in the scheme of things.

 

Michael

 

He sounds a lot like my DS was at 3. The growling progressed to scratching at one point. We did something we said we would NEVER do and started driving him around at nap time or at bedtime because we couldn't get him to settle down in his bed and we were both so worn out by the battles.

 

Don't let whether or not he's intelligent color things. Smart kids seem to fall under the radar just because they are smart. I can't say it is PANDAS, but it could be. At 3 my son didn't have OCD or tics. He was just difficult and defiant and sensitive and just a little off.

 

I'd do a phone consult with Dr. T. or Dr. K first to see what they think. A trial of abx to see if it helps is where most of us start. The Cunningham test will also give you info. If his Cam Kinase II levels are in the PANDAS range you'll know it is more than a "phase".

[dut]

Hi - I can't offer any answers as we are in the same position but I thought I'd give you our history.

 

Our dd6 has a PAND(AS?) dx. She had her 1st recognised episode 2 yrs ago. Our ds2 is a possible PANDAS. Our dd is symptomless out of episodes. In epsiodes she has tics, OCD, some chorieform movements, sensory issues, sleep problems, tantrums, regression in fine motor control, defiance and is combative and very emotional. She is a calssic sudden onset kid.

 

During her 1st episode our son, then 7 months old, had an overnight onset of bad seperation anxiety. Prior to that he was sleeping like an average 7 month old with 1 or 2 wakes per night. His sleep deteriorated from then on. An ear infection at 18 months brought even more wakings and increasing "behaviours". Low frustration tolerance, wilful, very active. All the usual toddler stuff just to the extreme. With each illness, his behaviour worsens and slowly gets better again but long, long after the illness itself has resolved. His baseline is always extreme toddler behaviour tho'

 

In addition I have seen some soft OCD signs with word and sentence repeating, needing to switch lights on and a few more. He also gets more sensory problems when not well but they are always there.

 

We did the Cunningham test on both kids. Dd6 had a CaMK of 165% with normal anti neuronals when not in an epsiode and symptom free. Ds2 had a CaMK of 151% and raised anti-lysogangliosides. On the back of that we did a steroid burst (30mg per day for 5 days, he weighs 35lbs). We saw immediate improvement in sleep, from 8+ wakings a night to none in 5 days and some minor improvements in behaviour. The improvments decreased slowly once the steroid was stopped and all improvement was gone 4-5 weeks following the burst.

 

He is on proph abx until we can figure out what is going on. Even with the Cunningham scores I'm not convinced he has PANDAS but I feel fairly sure because of the comparisons I can make between him and his sister. But more than anything his behaviour just doesn't feel right. I think if your gut is telling you something is wrong, then it is.. good luck.

[fuelforall]

Hm well, here is my game plan.

 

Ds3 is getting tonsils out Tuesday. I will let him heal, get the abx and retest titers in a month or so after and possibly do the Cunningham test. It is disturbing that ds3 is adopted from a foreign country. so it's not in my family genes, if you know what I mean. He does have sensory issues and some OCD tendencies, I think. But it just seems so early to evaluate OCD tendencies.

 

I will be watching him closely. He conked out last night without trouble but there are still lingering issues.

[sf_mom]

FYI: My twins are only 1/2 biologically related to their older PANDAS brother. Also all our children attended a playdate in 2007 where one child had RF (active strep phase), another had active strep and now ALL FIVE CHILDREN have PANDAS symptoms, 4 have elevated Cam Kinase..... we are awaiting results on the last child but his Anti-DNAse is elevated!!!!! In our situation I strongly believe it was the strain of strep, age and state of immune system at time of exposure. My neice's were also visiting in between when my children got sick in 2007 and they have had no reported strep throat since then.

 

DS1: Cam Kinase 127 (blood draw 11 days post steroid burst)

DS2: Cam Kinase 148

DD: Cam Kinase 157

Friend #1: Cam Kinase 147

Friend #2: Anti-DNAse-B 400's, no known strep since playdate... awaiting Cam Kinase

Niece #1: ASO 280, Anti-DNAse-B 340

Niece #2: ASO 473, Anti-DNAse-B 480

Husband: ASO 283, Anti-DNAse-B 680

 

-Wendy

Edited April 9, 2010 by SF Mom

[thereishope]

May I ask what ethnicity you DS3 is?In an old thread, it was surprising the high number of people that were Eastern Europe and I believe British decent.

 

However, it has been said on here before that strain can have something to do with PANDAS surfacing as well in some kids. That the strain preys on the young.

 

Hm well, here is my game plan.

 

Ds3 is getting tonsils out Tuesday. I will let him heal, get the abx and retest titers in a month or so after and possibly do the Cunningham test. It is disturbing that ds3 is adopted from a foreign country. so it's not in my family genes, if you know what I mean. He does have sensory issues and some OCD tendencies, I think. But it just seems so early to evaluate OCD tendencies.

 

I will be watching him closely. He conked out last night without trouble but there are still lingering issues.

[EAMom]

You could also see if there is any improvement on advil (give 3-4x a day for 2-3 days)....certainly not definitive, but it would be interesting if you see an improvement in beh.

 

Also, will they culture the tonsils?

Edited April 9, 2010 by EAMom

[fuelforall]

Guatemalan.

[fuelforall]

Advil for a three year old?

How much? Children's ibuprofen of course?

He's 38 pounds. Help!