Please help, sudden onset of tics in a 5 year old girl

[ssonheim]

Hi! My daughter had strep throat the day before halloween and finished a 10 day course of antibiotics (penicillin?). She only had a high fever and vomiting, never a sore throat. We went to the pediatrician within 48 hours of the high fever. She became sick with a virus and some form of wet cough bronchitis the week before Thanksgiving. She had a lingering runny nose, so we thought. By mid december we noticed that she was sniffing with every breath through one nostril. Never when she slept. she would twist her nose sideways to get a breath. I figured it was allergies but did read that it could be a tic. Ignored it.

 

By early January it was still there (and driving me crazy) so I tried magnesium. I also tried distracting her and noticed that it would go away when she was concentrating. We replaced her pillow and treated with zyrtec but the magnesium seemed to make it disappear. Well the pillow was apparently too big. Because as her sniffing phased out, she started rolling her shoulders/neck. She told me it "felt good to do it" (same response as the sniffs. ) I switched to a smaller pillow and the rolling the shoulders went away. Then the hard blinking started. We assumed allergies (and got a work up with a pediatric optometrist). The zyrtec and benadryl made it disappear within 5 days. We had 3 glorious tic free days. Then she started up the hard blinking again. She blinks reallly hard- like she is squeezing them shut. I noticed a tiny teensy stye on one eye but it is since disappeared. She wakes up every morning without tics but they increase (starting after an hour or so) to every 5 seconds. Before bedtime it's practically every second. That's been for the last 6 days. I have been using natural calm since early January. Cut out wheat and gluten and didnt see any results. Supplementing with B vitamins, D, taurine, etc and I am seeing no results.

 

Basically she's like the princess and the pea, if something is uncomfortable, she turns it into a tic. This has never happened before December!

 

I took her to the pediatrician yesterday. She had thrown up at school. No fever. She has a tiny cold and tends to throw up when the post nasal drip fills her stomach I guess, thats what he told us.

 

He said it couldnt be PANDAS as she took antibiotics. We didn't miss any doses. We did have a complete throat culture (lab culture) a few weeks ago. It was negative. He said she was just letting stress go and the sooner I ignored it the sooner it would go away. She hasnt had behavior changes. Maybe subtle ones, but nothing really big- I mean, she's always been a Type A personality.

 

Schoolwork is going well and she loves her school and teacher. She's in half day K.

 

Would you pursue PANDAS with this one? I hate seeing her blink all day so hard. Some of the squeezes last a whole second. She says it "feels good"- she can stop for a minute or two and then it returns.

I am trying ibuprofen this morning and it is going pretty well. Too soon to tell though.

 

I really need some advice. Does this disappear? Since we don't have behavior/schoolwork issues, is this just a normal tic? Pediatrician said 25% of kids get them, its just a stress relief thing.

[ssonheim]

I wanted to add that when shes concentrating, when shes playing, when she's happy as a child can be, there is no pattern to the tic. It doesn't seem to disappear with concentration or relaxation. It just increases in frequency as the day goes on. By 11 AM it's every 5 seconds without any breaks.

 

Also, We may have been allergic to our Christmas tree too (possible mold) which is when this all started with the sniffing. I was down with bronchitis for the month of December. It's hard to say exactly when it was genuine stuffy nose vs. tic. We removed the christmas tree and I got better (I was on a z pack too). I'm just so confused and don't know if I should pursue PANDAS because there have been no behavior changes. Clearly I'm not going to get anywhere with my pediatrician. But money is tight and I can't really see specialists out of pocket that don't take insurance unless we start getting really severe. It doesn't seem to bother her.

 

And the tics started again (11 AM) every 20 seconds. UGH!!!

Edited February 3, 2016 by ssonheim

[Chemar]

Hi

I am just bumping your introductory posts up so others can see and respond.

[ssonheim]

Thanks for bumping! I noticed about 1/3-1/2 fewer tics yesterday. They did not persist all day long. She stayed home from school with me and I did 2 doses of ibuprofen, 7 hours apart. So, it could be the ibuprofen (but I did give it to her last weekend and saw no improvement), relaxing at home (she was home all last weekend and we didnt see improvement) or just a natural waning.

 

Can anyone shed light if ticcing all day every day is ever "normal" for a five year old? My pediatrician seems to think so. From everything I have been able to read in the last month, it seems like kids tic in periods where they are stressed or bored but barely do it otherwise. Not just a gradual increase from waking up to nighttime.

 

Handwriting is good, possibly better than a few months ago. She's quite an artist and draws beautifully for her age. Movement is normal.

 

Could this be PANDAS? Or is this normal five year old behavior? Or just the beginning of transient tic/ tourettes? Both my husband and I and my son all pick our nails, scabs but never have had tics. I used to pick the foam at my carseat as an infant apparently. Obviously I have a lot of anxiety. However, tics do not run in our family as far as we know. Nothing in our immediate family or first cousins for sure.

 

I am just absolutely lost and I don't know whether to just closely watch her and hope it disappears? I guess my concern is the frequency of the tic falling into "normal" parameters?

Edited February 4, 2016 by ssonheim

[ssonheim]

P.S. we are in Tampa. So we could see Dr. Friedmeyer (in network) Dr. Berger or Dr. Murphy. Murphy is really $$$ and I don't know if I am overreacting. I'd love to see if Dr Berger could fix it holistically but I am skeptical. Dr. Friedmeyer sounds like a good place to start. Of course my husband is Not on board. He's worried but thinks it will disappear on it's own.

[Mom23boys]

It could be PANDAS and I certainly would not rule it out. It is suspect that these tics came on abruptly after infection. A short course of antibiotics is not enough to rule it out. Dr. Latimer says at least a month for the first episode, and penicillin is not always effective. I would go with your gut. If it is PANDAS and you catch it early it is often an easy and cheap fix. If you wait, it often becomes much more difficult as the inflammation becomes worse and harder to treat.

 

Is Dr. Friedmeyer PANDAS friendly? I would start with him. In the meantime look over www.pandasppn.org. It is a website written by doctors and researchers (the top ones in the country like Swedo Latimer et al) to educate doctors about PANDAS, and contains information on diagnosis, treatments and the latest research. It has a flow chart for diagnosis and treatment (and it says try an antibiotic for two weeks and if not better try a different one for another two weeks if I remember right).

 

Azithromycin and Augmentin XR are effective for these kids, as is omnicef. I had an infectious disease doctor tell me if we get strep to ask for omnicef - very little resistance to that one.

 

If you get an antibiotic, Dr. Latimer recommends florastor (we like the CVS generic no flavor for little ones that can't swallow pills). You can take the same time as antibiotic and it is great at preventing stomach issues.

[Mom23boys]

And just FYI I have two kids with PANDAS. One without. We do have a family history of autoimmune strep (Syndeham's chorea, scarlet fever, strep glomerunephritis, etc.) in our family but no tics. My kids have tics as their primary symptom and it was the presenting symptom for both of them. Oldest was confirmed with blood tests and positive Cunningham panel. We didn't do that with our youngest because he has the exact same presentation. Dr. Latimer confirmed him just based on clinical presentation.

 

If the doctor is in network, my thought is it won't hurt to see him and to try a month or longer of antibiotic. We never gave our kids antibiotics and frankly that is probably why they ended up in this mess . If she gets better, then you have your answer. Transient childhood tics are also common, although less so in girls, so that is also a possibility.

[ssonheim]

Hi! Thanks so much for the reply! I did have scarlet fever at age 10, after a negative strep test and my mom was really angry about it because she was convinced I had strep and the doctor said I didnt and it didnt show and then I got scarlet fever- in a very dramatic way on my 10th birthday. I woke up and couldnt move my neck it was so stiff and my mom panicked and called 911. I had to wear a neck brace for a few days.

 

I appreciate your input. Friedmeyer is pandas friendly and I searched here and it seems like he is well respected. I also ordered the natural treatments book from amazon.

 

I think you are probably right. I hate giving antibiotics, especially if this will just go away. So hard to tell but not bad to seek a second opinion.

 

She has been more fearful lately, concerned about ghosts and thunderstorms. I wouldnt say it's super present, just kind of normal 5 year old stuff...

 

She does have her first loose tooth, since the symptoms started appearing as well.

 

This is all extremely confusing.

[Mom23boys]

My husband is a doctor and very anti antibiotic. We very rarely took our kids to the doctor except for check ups. When I took my boys to Dr. Latimer she said "typical doctors kids". I think frankly the reason they have this is because they had an undiagnosed strep infection. My sister is also a doctor and when I expressed concern about the antibiotics she said give a good probiotic. She has a child who has fallen off the cliff (and is now well after plasma exchange and several years of IVIG) so I am sure she would say if 3 months of antibiotics would fix it, count yourself lucky,

 

I just wouldn't ignore it. The simple fact is the longer it goes undiagnosed, the harder it is to treat. She is very young with very mild symptoms. My niece was very similar to your daughter. As my sister's 3rd child with PANDAS (first very severe, second milder) she took her immediately to Dr. Latimer who gave her several months of antibiotics and 30 days of steroids. She has not had a problem since. Every once in a while she has a tic and my sister gives her 5 days of steroids and they go away. She was 6 when she developed tics and she is almost 10 now.

 

The history of scarlet fever is very interesting. They are doing a study right now at the NIH on the genetic predisposition to pandas. The thought is that it runs through the maternal side of the family, which is certainly true in our family.

[ssonheim]

Thanks so much for your input! It's all very interesting to read about this. Especially the maternal link to Pandas. I don't think I had Pandas as a child, just scarlet fever. I dont have OCD and I only developed anxiety after her birth, with a health scare at the hospital (only me, she was fine.) She was breastfed for 14 months. Really healthy and normal except she seems to get quite ill all the time, whereas other kids seem to get over it in a day or two.

 

She's not ASD, so it seems like it would be very strange for her to have such a persistent tic? She was talking very early, forming sentences and is high IQ, and one of the best students in her class. She has some Aspie symptoms but the early language would rule that out. My son is 14 and never had any of these symptoms.

 

Im going to get a second opinion w/ Friedmeyer next week. My husband was on board with that. Money is tight and we don't have thousands to throw at Murphy and Berger (out of network, don't accept insurance) unless it is a true emergency. I hope it doesn't come to this but I am curious of taking a natural approach and having someone specifically tell me what to do as opposed to guessing!

 

I really hope antibiotics will help her!

[Wombat140]

I don't think it's true that early language rules out Asperger's syndrome. I have a diagnosis of AS (albeit fairly high-functioning) and I wasn't late learning to talk, in fact rather early, forming sentences and everything. (High IQ also).

 

Anyway, I hope the antibiotics do do the trick for your daughter, it sounds like it's well worth trying, especially since PANDAS is apparently much easier to treat if you catch it (if it is it) this early.

[ssonheim]

Very interesting! thank you for sharing! I hope things get better

[Mom23boys]

Not sure why you think she has to have ASD to have a tic? They are not related at all. Transient tic disorder is very common in children (as many as 1 in four boys have it). Chronic tic disorder is also very common in children, but less so. Not related to autism or asbergers at all.

 

In fact, my oldest who still has tics which started at 7 (he is now 15) is highly gifted and no autistic symptoms at all. He has a very high IQ, knew the alphabet at 18 months, taught himself to read before he was 3, etc. . . We believed the transient tic diagnosis for years, and then believed the chronic childhood tic diagnosis. We waited too late for treatment because he had no other issues, was flourishing socially and academically and was a perfectly normal child behaviorally and and academically. Basically the dream kid with mild tics. When he hit puberty, he started a facial grimace which was harder to hide than the eye blinking and they got worse. Still totally functional (he is an actor and continues to get the lead in the play, etc.), but that is when we decided to see Dr. Latimer. He has been on multiple antibiotics, had a tonsillectomy, a 8 week steroid burst and no improvement. Having said that, he is where most kids are when they are back to 98 percent . . . just an annoyance but will become a social issue at some point (not yet - great friends!!!).

 

My 10 year old started at 7 also. When we took my oldest to Latimer we took him too. At the time he was forceful blinking, a soft sigh and pursing his lips. Multiple times a day. The blinking might go on for a minute or two but then stay away for an hour, etc. After tonsillectomy he is 80 percent improved and on azith all tics are totally gone. We are starting a steroid burst in hopes to keep them gone when we go off the azith. Much easier to fix . . .

[ssonheim]

I was thinking tics were ASD related because it looks a bit like stimming? I don't really know. Has anyone had a child that does it all day every day- basically 9 AM til 7 PM with no more than 20 seconds between tics? They increase to every 5-10 seconds by the end of the day It's just so awful to watch. Should I be concerned about that frequency? I guess that concerns me more than the tic itself.

I just requested an appointment with Dr. Friedmeyer. I am hoping he can run some tests to say for sure.

Edited February 4, 2016 by ssonheim

[Mom23boys]

I don't know much about autism or "stimming" but shoulder rolling, forceful blinking and sniffing are all very classic and common tics. We have had the sniffing and blinking in both boys. . .

 

I am glad you are following up if only for peace of mind!!! I think we need to listen to our parental instincts and you have something telling you that this is not right . . .

 

I just wish I had followed up earlier with my oldest. We were talking about that yesterday . . . I have a lot of regret there.