Advice for first appointment with pediatrician

[Sarotchka]

About two weeks ago my 9 year old son started exhibiting facial tics. He widens/scrunched his eyes and twists his mouth, generally doing the two actions together. These actions were happening really frequently in a series.  We were on vacation in Vietnam with no internet or phone service at the time. By the time I was able to contact his pedi, the tics had deminished considerably.

Pedi put him on amoxicillin 400mg x 3 daily. For the first 7 days, all was calmish. The last two days the tics are again exacerbated. We have also been dealing with interrupted routine, extreme heat and humidity, jetlag, diet  change etc etc etc. I should also mention that my son snorts repeatedly and has for months. We thought it was allergies but now I'm leaning toward this also being a tic.

Everything else is good. No attention problems, OCD, fatigue, eating changes.

Tomorrow we see the pedi.

1. What questions should I ask?

2. What diagnostics should I request?

3. Yes, I am entirely freaked out watching my son tic. Any advice or consolation is greatly welcomed.

I greatly appreciate your support.

Sarah

[Sheila]

Hi Sarah, Welcome to the forums.  I know it is hard to watch your boy tic, and hopefully it will resolve very soon. It is such a feeling of being out of control as a parent. But you sound like the kind of mom who will be able to find answers.

It sounds like you have a lot going on related to the travel. Where do you live?  In addition to whatever your pediatrician wants to do , you could ask for a referral to an allergist. 

As for what to request or questions, lot depends on the mindset of your pediatrician. Some take the approach that tics come and go, and it has been a short time (aside from the snorting) and "they will probably go away on their own."  Others, and this is the  small minority, will help you explore other approaches.

Had the doctor done a strep test? Let us know what next step is recommended re: the antibiotic.

Try to get on a strict diet right away, avoiding sugars and artificial additives. Reduce screen time, keep the house cool since heat may aggravate him (?) and make sure he is not exposed to perfumes, other scented products or cleaners. Those are just common sense things, in general, for tics. You mentioned a lot of change was taking place.

After you see the pediatrician, let us know what else came up during the appointment, OK? 

Please write back and let us know how things are for your boy this morning. We care and know what it is like to feel helpless as you watch your child tic, but be assured that there are answers to be found and you can get a handle on this. Hang in there and please write back! Sheila

 

 

[Sarotchka]

Thanks so much for your quick and thoughtful reply. We live just north of nyc. Jake has had basic allergy testing and is allergic to dust mites. We try to keep the house, especially his room, dusted, washed and vacuumed regularly.  I just ordered a HEPA filter.

Summer is such a difficult time to get diet under control. Jake is supposed to go visit his grandparents in two days and it is hard to limit the spoilage, especially since we won't be there. 

Something interesting is that we are a soda free family except on trips. Jake had a bunch of orange fanta at the beginning of our trip just when the tics began. I will definitely request that the grandparents keep his diet as healthy and unprocessed as possible.

What do you think of the ten days of amoxicillin? Do you think that that is sufficient to rule out a bacterial infection? Is it something I should pursue further?

I really appreciate your help.

Sarah

[evemac]

Hi Sarah,

 

I agree with everything that Sheila stated in her post.  Certain foods in my son's diet, particularly gluten, really seemed (still seems at the age of 14) to trigger his tics.  The cleaner the diet, the better! Reduction of stress, plenty of sleep, and for our son, making sure he doesn't go too long without eating all seem to help him maintain homeostasis and  have less ticcing.

At the first sign at some unusual hand twisting at unusual times, I brought my 4 year old into our pediatrician who stated that he was fine.  I was pretty firm in asking for a pediatric neurologist appointment even though there didn't seem to be a cause for alarm on the doctor's part .  I am happy that we did, and even though my son is no longer on meds,  his neurologist is a huge part of his life and a person who just really gets him and what it's like to grow up with TS. Also, if you have the resources to see a homeopathic doctor who can do more in depth testing (if you can find one who is also an MD), that is also beneficial.  This was helpful as we could see where he had mineral deficits and also which foods he has sensitivities towards and to avoid them.  You can also do this with an elimination diet if this is not an option for you. Other avenues we have pursued over the years are chiropractic care, occupational therapy, and biofeedback.  I think to some degree, these all helped our son.

Know you are not alone in this journey.  We all understand the initial stages as you manage this with you son.  

Eve

Edited July 20, 2018 by evemac
wrong word

[Sarotchka]

Thanks for your support. Had the pedi visit today. They gave him a physical, looked at a video I took, took bloods to test for Lyme and referred us to a pediatric neurologist.  That appt will be on August first. At least we know that he is in no immediate danger. The pedi encouraged us to continue with our summer plans, so Jake will be spending a week with the grandparents. It will be good for him to have some time just being loved and occupied instead of me stalking him all the time to check his tics!

[mert]

Hi Sarotchka ;

Been there, so I understand how frustrated you are. Just beware that he is at an age where he would be more self conscious and your behaviour can directly elevate the levels of anxiety. 

From reading million lines of inconsistent research papers and forums what I've learnt is : 

1- Rule out the PANDAS option. Looks like your pedi is aware of it so he gave antibiotics right away, it would be good to take a look at anti titers. On most cases one round of amexilin should have a positive result though not permanent but there are several number of cases where a significantly more complex treatment is needed. However most of the time PANDAS cases worsen quickly and tics will not be the most important problem. (I know there are some tic only pandas cases, but they are very rare) 

2- Focus on being normal and not worrying him more. He would sense stalking, believe me. My 4 year old senses easily. If you feel that he is worried just tell him that it's quite normal and they will probably go away soon. 

3- Given the age and described severity decrease, there is very good chance that they will go away soon. 

4- A cleaner diet doesn't harm. It also gives you something to focus on. 

5- I and probably my 4 year old also has allergy to dust. I take necessary precautions (atleas tsome of'em) , 

- mite barrier at pillows 

- dehumidifier with heap filter

- air purifier with heap filter 

Those seem to help me and her a  lot. Not sure relation to tics as there is no way to do an A/B test but since I've taken those cautions tics severity has gone down a lot. Not %100 sure they are related. 

best regards

Mertol