Sibling of Pandas brother showing symptons

[Rowens1214]

My 15 yr old has been diagnoised with Pandas. I have posted several times about him on this forum. My youngest son who is 7 has been kinda ticcish off and on for the last few months. He had throat clearing and hand snapping and a few very minor other things that no one noticed except me ( why does it seem just moms sees these things) anyway. around july 4th he got an URI and was put on zith . Within 10 days he had stopped doing all his tics. After 20+ days he would every once in a while clear his throat once or twice a day but nothing like before. Well Yesterday in the car he started doing an upper body jerk. He did it 5-6 times in a row. i Asked him what he was doing and he said " i dont know but i cant stop it" Well i got the sick sick feeling in my stomach and wanted to cry and throwup. When we got home i watched him like a hawk and he never did it again until i put him to bed. He was very restless and wanted to talk and did do the motion one time. My gut feeling says call the Dr. right away and get antiobiotics. His brother told me he did not think it was a tic. He said you just cant tic like he was doing in the car and then stop for hours like he did last night. I am trying not to panic but it not working.......

 

i really could use some advice. I dont think his Dr. is open on Fri. I do have a prescription for amox that his older brother did not finish ( was not working for him) just dont know what to do and my brain is going 100000 miles a min.

 

Robin

[matis_mom]

My 15 yr old has been diagnoised with Pandas. I have posted several times about him on this forum. My youngest son who is 7 has been kinda ticcish off and on for the last few months. He had throat clearing and hand snapping and a few very minor other things that no one noticed except me ( why does it seem just moms sees these things) anyway. around july 4th he got an URI and was put on zith . Within 10 days he had stopped doing all his tics. After 20+ days he would every once in a while clear his throat once or twice a day but nothing like before. Well Yesterday in the car he started doing an upper body jerk. He did it 5-6 times in a row. i Asked him what he was doing and he said " i dont know but i cant stop it" Well i got the sick sick feeling in my stomach and wanted to cry and throwup. When we got home i watched him like a hawk and he never did it again until i put him to bed. He was very restless and wanted to talk and did do the motion one time. My gut feeling says call the Dr. right away and get antiobiotics. His brother told me he did not think it was a tic. He said you just cant tic like he was doing in the car and then stop for hours like he did last night. I am trying not to panic but it not working.......

 

i really could use some advice. I dont think his Dr. is open on Fri. I do have a prescription for amox that his older brother did not finish ( was not working for him) just dont know what to do and my brain is going 100000 miles a min.

 

Robin

Hi Robin,

So sorry to hear your news! If you pediatrician is not open try getting him to an urgent care facility. You could just start the amoxicillin now but then the risk is by the time you take him in he will not test positive and then it will be hard to get him a prescription.

And if you can get all family members tested too, just to make sure.

To me the fact that the tics went away while on antibiotics is a very strong red flag.

Let us know how it goes.

 

Isabel

[Rowens1214]

Isabel, thanks for your reply. the thing is everytime i get him tested for strep it is neg. His older brother was the same way. He would have symptons (sore throat etc but strep was neg) my little one does not show any signs of a sore throat etc he is just ticcing. I did give his Dr. a call just to see if she was open and she is in today. so I am going to take him and get a strep test done and hope we can get som abx for the weekend. Do you know of any children with PANDAS who just present with tics and not the ocd. My son has always wet the bed at night but no ocd, fears, sep anxiety etc.

thanks again.

[LNN]

Isabel, thanks for your reply. the thing is everytime i get him tested for strep it is neg. His older brother was the same way. He would have symptons (sore throat etc but strep was neg) my little one does not show any signs of a sore throat etc he is just ticcing. I did give his Dr. a call just to see if she was open and she is in today. so I am going to take him and get a strep test done and hope we can get som abx for the weekend. Do you know of any children with PANDAS who just present with tics and not the ocd. My son has always wet the bed at night but no ocd, fears, sep anxiety etc.

thanks again.

 

My son struggled with tics a great deal. At the start and end of an episode, he absolutely would tic for a burst of time and then be quiet for hours. It was only in the middle of episodes that the tics would be all day. And we too had an upper body, complex motor tic. We had to revert to sippy cups because if he held a glass in his hand, the whole kitchen would be showered in milk the first time he picked up the glass to take a drink. The jerk was that severe. Looked like he was being electrocuted.

 

In his first full blown episode, he had some OCD, but the tics were so dominant, it was easy to overlook the OCD. Even now, without tics in the mix, he has OCD I don't find out about until an episode starts to wane. Then as he feels stronger and can resist the OCD, he wants to brag and will tell me about all sorts of things where he told OCD "no" - things I never suspected were a problem, even with my paranoid watchful eye.

 

Best of luck at the doctor's. If it doesn't pan out, it might be time to consider a visit to one of the Pandas specialists.I would tell you not to freak, but those on the forum who know me personally would bombard me with private emails, laughing that I of all people suggest to someone that they not panic. I am queen of panic. So I won't be a hypocrit. I'll just tell you I know how you feel and will keep you in my thoughts.

[Rowens1214]

After i wrote that he does not show ocd symptons i began to think about some things that could be OCD. my older son only has the intrusive thoughts and some minor sensory issues so i have not been looking for other things. MY little one constantly holds onto his genitals i am constantly telling him to get his hands out of his pant. could this be OCD? He also spits everytime he goes out the front door and usually when we get out of the car. i guess this could be OCD symptons. they dont seem to bother him and i am really trying not to see things that are not there!! He has never had sep anxiety or fears that iknow of. oh its just does not seem to end in my house. thanks so much for replying. its helps so to know you all are out there and i am not alone in this.

 

Robin

[matis_mom]

Isabel, thanks for your reply. the thing is everytime i get him tested for strep it is neg. His older brother was the same way. He would have symptons (sore throat etc but strep was neg) my little one does not show any signs of a sore throat etc he is just ticcing. I did give his Dr. a call just to see if she was open and she is in today. so I am going to take him and get a strep test done and hope we can get som abx for the weekend. Do you know of any children with PANDAS who just present with tics and not the ocd. My son has always wet the bed at night but no ocd, fears, sep anxiety etc.

thanks again.

Well, in that case, I hope your doctor is sympathetic and will give you abxs! About the tic thing, in the beginning, years ago, before we even knew about PANDAS, my son had an eye-blinking tic that would come and go. Only years later did he develop (or we noticed) the OCD. The bedwetting thing is so typical, it's just another thing to support the possibility it is PANDAS. But look on the bright side, if it is, you are catching early

[LNN]

MY little one constantly holds onto his genitals i am constantly telling him to get his hands out of his pant. could this be OCD?

My son does this too, but honestly, I don't think it's OCD. In our case, it's just a boy having his favorite toy close by

 

He also spits everytime he goes out the front door and usually when we get out of the car. i guess this could be OCD symptons.

Now this may be OCD. Several parents can tell you stories of spitting due to fear of germs or a "not right" feeling in their mouths. Lots of OCD is a "normal" behavior taken to an extreme due to an abnormal fear or thought. Which is what makes it so hard to detect and to fight. So whether your son's spitting is OCD depends on "why" he's doing it.

[airial95]

I went through this a while ago where I thought my 4 year old daughter was exhibiting PANDAS behavior as well...and it came right after a bout of strep in my PANDAS son. And of course, we're all paranoid about seeing things in our other children!

 

Our experience is a bit different because our son presents primarily with the OCD, and only has one small, not very noticiable facial grimace tic. But here's what we did.

 

She started showing many of the same OCD characteristics as my son, ritualistic behaviors around mealtimes and bedtime,sinificant seperation anxiety at night, etc... I was freaked and ready to take her into the pediatrician the next day. My husband (who never seems to see these things until they're slapping him in the face either) became my voice of reason and suggested that we make a list of symptoms we're seeing in her, and track them for a few days (similar to how we track our sons symptoms)before we run off like lunatics to the doctor. I reluctantly agreed, although I did talk to the Dr. and ask about the possibility w/o my hubby knowing.

 

Hubby's suspicion was that she was doing it for attention at home, and because she was getting ready to start in a new classroom for Pre-K which was making her nervous. His suspicion was based on some of the ritualistic behavior she was showing was identical (down to the phrases said) as her brother...so he felt she was copying for attention.

 

I was NOT convinced...but after about 10 days of recorded observation, with even my husband paying attention, we came to the conclusion that (unfortunately) my husband was right...all of these behaviors were only seen at home, and particularly when mommy was around. At school - no tics, no rituals, no OCD or ODD behaviors AT ALL. And when mommy had to go to a meeting - she was freaking out with seperation anxiety - I hadn't even left the neighborhood yet when hubby called and said she was already fine, and she was fine the rest of the day. I swore she was using the bathroom constantly, but when we started writing it down, it was no more than normal. Since we stopped giving her attention for these things (and mommy stopped freaking out at every turn asking her questions) - everything has stopped.

 

Tics and OCD behaviors are two very different things to be mimicked, but by tracking for a few days we were able to see objetively (without my paranoia playing into it) what was really happening.

 

Now that I've shared my story - I'm also the first one to tell you though, if you think something is wrong - you know your kid best and do what you feel is right (which is why I talked to the doc behind my hubby's back! )

[Worried_Dad]

We've been agonizing over the same thing. Now that our oldest (14) is finally winning his battle against PANDAS, our middle son (10) is exhibiting some symptoms. They're mild but unmistakable: a slight vocal tic (kind of a chirp), heightened anxiety, some OCD-like contamination issues.

 

At first we thought these were learned behaviors, and that he was copying his older brother to get some parental attention. (He's our middle child and has been short-changed over the past few years, despite our best efforts to give him quality time.) Now I'm not so sure. I've noticed the vocal tic emerging when he's totally engrossed in something (a show, a video game) and is oblivious to the rest of the world around him. And he's suffering from enuresis: not something anyone would be likely to fake or be able to control.

 

Can't tell you how big a lump has formed in my throat when we've observed these mild symptoms emerging. We just did a blood draw for him and sent the serum to Dr. Cunningham's lab for analysis. If it comes back in the normal range, awesome - maybe our fears are unfounded. If not... well, at least we'll be on the alert then.

 

I have so much sympathy and admiration for the parents on this forum who have multiple PANDAS kids. Don't know how you do it... or how we'll manage if it comes to pass. Hope your youngest's symptoms resolve quickly, Robin!

[LNN]

Worried Dad,

I'm so sorry to hear about this. You know how we're hoping to follow in your footsteps. But I am hoping this doesn't repeat itself in your house. We have a younger child as well, and only want our lives to parallel in good ways!

 

At least now you are a seasoned warrior with at least one victory under your belts. You can skip the horrible quest for doctors and know so much more now (is Igenex in DS10s future?). Please keep me posted. It's your story that gives me the most hope.

 

Laura

[Stephanie2]

I'm very sorry to say but this sounds very suspicious. And I do think it is possible to have a few tics in the car and then not do it for several hours. I witness this all the time with my 5yo. I don't have much advice for you except that I can tell you from experience that the second time around is a little easier (as with all things) b/c you have the doc lined up, you have already done the research. It took me a long time to accept my second son's dx of pandas and I regret that b/c he went a long time (10 months) untreated and if I had caught it sooner, maybe it wouldnt' have exploded to the level it is at now. Don't mean to scare you, I really don't, just want to give you heads up that you should deal with it sooner than later, you may be able to stop the inflammation in it's tracks. Maybe give a high-dose abx and a steroid burst. Don't forget probiotics...

 

BTW, someone mentioned holding the groin. This is definitely a tic. It is listed as a tic, our pediatrician saw him do it and confirmed it is a tic-varient, and my son did this on and off for about 5 months. It did not stop until 4 weeks post IVIG. Grandparnets/teachers were constantly telling him to get his hands out of his pants and I would jump all over them saying "you need to ignore that, it's a tic and you will make it worse". Strangers would stare at him at the store, etc. Not one of the easier tics to explain to ppl!!

Edited August 20, 2010 by Stephanie2

[Rowens1214]

thanks for all the replys. i am trying so hard not to be paranoid. but after dealing with my older sons symptons for 8 years i just cant let it go. I have a great Dr. but she seems to stuck on the fact the my older sons titers were in the normal range. She finally came around to the PANDAS ideas when his CAM came back at 151. We have an appt. at 2:30 today so I will let you all know how it goes. I just hate talking about everything in front of my youngest son. I dont want to scare him or have him think he is not normal. school starts in 3 days and really need him to have peace with going and feeling o.k. My oldest has struggled with school every year since 1st. He starts 10th in a few days and is already saying he is not going. I need just a little more stress!!!

 

robin

[Megs_Mom]

After i wrote that he does not show ocd symptons i began to think about some things that could be OCD. my older son only has the intrusive thoughts and some minor sensory issues so i have not been looking for other things. MY little one constantly holds onto his genitals i am constantly telling him to get his hands out of his pant. could this be OCD? He also spits everytime he goes out the front door and usually when we get out of the car. i guess this could be OCD symptons. they dont seem to bother him and i am really trying not to see things that are not there!! He has never had sep anxiety or fears that iknow of. oh its just does not seem to end in my house. thanks so much for replying. its helps so to know you all are out there and i am not alone in this.

 

Robin

 

Certainly the spitting could be OCD - my daughter had this in an extreme way - she was spitting germs. However, it could just be a "little boy" who likes to spit & hold onto his best friends . So when I start to get a little panicky - I like to try a behavorial plan to see if I can change the behavior - or if it creates a ton of anxiety and therefore gives me a clue that it might be OCD - or even an involuntary tic. You probably know how to do this, but basically sit down with your son, and ask him about the spitting pretty casually. Then offer to have an ice cream party (with your family) the next night, if he can remember not to spit before and after being in car. Then remind him each time right before it would normally happen. (If you are really martha-stewarty , you can make ice cream cards & hand them to him before each expected time & write "no spit" on each one, just to make it more fun). Another way to do this is to casually offer him a piece of gum right before getting into car, with agreement of no spitting while you have gum.

 

For the genital issue (we have not had that one!!! No boys....), you might try habit reversal - give him something to do with his hands instead of what he is doing. Something that will use both hands. So you might start with a throwing a small soft ball at him and then moving to playing catch for a minute. Or handing him some silly putty & showing him how to use it to copy things. etc, etc If it is OCD, then he will not be distracted, or will evidence anxiety about being interrupted. If a habit, he should move on easily. With habit reversal therapy , you break the habit for very short periods of time at first, and then move up to longer periods, until you reclaim most of the day. For little kids, keeping it off the word "no" or "don't do that" and instead giving them a positive action to do instead, usually works pretty well - although it is a lot of work for mom!

 

Good luck - I am in complete agreement - mom's intuition is usually best. For me, at least, if I can rule out a few things kind of easily, sometimes that helps you see what is urgent quite clearly.

[dcmom]

Hi everyone-

 

I am sure all of you are tired of my story by now

 

We have two dd's- the younger one diagnosed with pandas within about 4 weeks- because she had overnight, debilitating ocd onset. Fast forward about 9 mos and her sister was also diagnosed with pandas, after onset at the same time as sister, but much milder- however a little more insidious- she functioned fairly well for those 9 months. About two months into diagnosis, she spiraled down thanks to H1N1.

 

Sigh.

 

So I will say, you are not being too paranoid. I think Meg's mom's ideas are awesome. OCD is definately accompanied by lots of emotions (panic, distress, fear, anger,etc)- a child's habit is not. However, when we were going through this- the mommy's intuition is the key, I think. It might be normal for a kid to develop a habit- but to develop a few things around the same time, while having a sibling with pandas is too much coincidence. I wish we had pursued my older one's symptoms (instead of thinking it was stress and tween issues) aggressively- maybe we wouldn't have had to go the pex route.

 

Regarding the cunningham test- please remember that is just a portion of the diagnosis. My older one had her numbers done, about 5 to 6 months after her mild onset (still showing symptoms- somewhat improved on their own)- her Cam Kinase was only 109. This normal range # threw us off of pandas for three months- while she still suffered with symptoms. Finally, after reading Dr K's adolescent onset variation to my dh (who thought I was crazy at first) we both knew she had pandas. Thankfully our doctor pursued pandas w/o lots of classic stuff- although a few months later dd did have a dramatic spiral into pretty severe pandas- needing a rushed pex procedure.

 

We just saw our doctor, who told me she puts more stock in cunningham's anti neural antibodies than the cam kinase. DD's antineurals were fairly high.

 

I hate to sound doom and gloom- but I wish I had someone to say to me- I think your other dd has pandas. It was harder to see- even though I thought I knew so much about the disease. It was and still is extremely painful that both of my beautiful girls have to suffer like this. My wish for all of you is that these are flukes, and habits. There is no silver lining- although I do hope and think, that the fact my girls share this disorder does and will make them closer.

[mom md]

Our second son, age 6 has also been disgnosed with PANDAS. His symptoms really started last year. He had some shirty chewing and BIG mood swings. His older brother was really sick so I thought he was having "middle child" issues and trying to get attention. He had strep skin infection in the spring of last year which totally freaked me out because my other son had PANDAS. That fall he got H1N1 and developed pneumonia within 24 hours. Very scary. He went back to school after the holiday and his teacher said he was "jumpy". I knew what she was implying because she knew our story and had my 9 yr old in kindergarden when his issues started, but mentally I could not go there. Things got worse but I was still in denial. In April we saw a new neurologist for my 9 year old and she specially asked about his siblings. She said it was not uncommon to see siblings infected. Within a month from that appoitment I could not deny what I was seeing anymore, He had major rages, sleep disturbances, inability to look you in the eye, unfocused, and could not sit still. I checked his titers and his ASO was 400 and his antiDNase B 980, his CamKinase II was 179. Bingo. We started him on azith and within 4-5 days most of his symptoms are gone. We see the neurologist in 3 weeks and will see what she says. I would like to try steroids first if needed. I have a third child too that is four, She stutters a little but only occasionally. I am upset, but I feel so blessed to have caught his early.