looking for help for 7 year old son

[samz]

We are new to this forum and are desperately looking for any suggestions or guidance to help our son. 

Our son has always had sensory sensitiities, specifically to clothing. He's a great eater and has alsways been sweet, easy going with a great attention span. He is an angel at school and gets god grades. He has social and separation anxiety. 

One year ago, last December, he had a significant choking incident, that caused him to significantly restrict his diet to soft, safe foods. Shortly after this, he began having motor tics and then minor vocal tics. We saw the pediatrician and a pediatric neurologist in Boston, received a psych eval, saw a therapist who specialized in CBT, cognitive behavior therapy (who was so wonderful!). He was given a strep test after we repeatedly expressed concerns about PANDAS, which came back negative. He was put on sertraline. I noticed my son was fidgety, restless, and then complained about itchy skin. His teacher called me and we agreed that it was like he was crawling out of his skin. We cut out milk products and reduced sugar once his eating improved. We did not see tics over the spring, summer and fall. I was relieved to see that I got my son back to his old self. 

My son was weaned off the sertraline in October and finished the med in November. The tics came back in December again, just about the same time as last year. His pediatrician stated it is normal for tics to come back around the holidays and that we could try a placebo effect or some natural remedies (pediatrician and neurologist had no recommendations on anything natural that helps with tics). We started NAC supplement and magnesium but have not seen results yet. He was also placed back on sertraline. He is beginning to become restless and fidgety again. 

We are completely devastated to see these tics back and how it can bother him at times. We feel like we do not know where to turn and are tired of hearing that tics are common and often wax and wane. We feel that even though there probably is a genetic component that there is a definitely an environmental connection. I have purchased the Feingold diet today and am waiting for the foods list. Could anyone who has been through this offer some next steps for us? 

It is so helpful to have this forum! I purchased and read Natural Treatments for Tics and Tourettes, which is extremely helpful. Wondering how to go about food/allergy testing and who to see next? I feel like I am falling apart and struggling to keep it together. 

[Chemar]

Hi samz

Sorry to hear of your son's struggles.

I know nothing about sertraline so can't really comment re that effect, but thankful you have Sheila's book as a resource.

Hopefully she or someone with more info will be able to post to you soon, but I just wanted to let you know you are not alone and that there is always hope in finding solutions.

[Sheila]

Hi samz, I've read your report and really sympathize. You've undertaken a number of sensible approaches. I'm glad you all experienced several months without symptoms, but I know how upsetting it is when tics resurface. 

As I'm sure you have read, sertraline is a strong medication with a significant number or potential side effects.    As a policy, we never advise someone on whether to start or stop a prescribed medication, but it is always good to be informed when you make your decisions.  

I would suggest that your description "crawling out of his skin" can be a classic allergic response. Also the sensory sensitivities your child experiences can have a biological basis that could possibly be treated.  He might benefit from a comprehensive approach with the help of a  physician who could evaluate and treat nutritional imbalances,  chemical  and food sensitivities, and allergic responses.  Please let me know if you would like help in locating a doctor like this in MA, OK?

Hang in there, I'm sure you can find some relief for your little boy. 

 

 

 

 

 

[samz]

Thank you. I have joined FB groups, went to an allergist for skin testing (most common allergens negative), sertraline isn't working so we are weaning off. Shelia, thank you for reaching out and I would love help finding a doctor in MA that can help guide us! Thank you!

 

[Sheila]

Hi samz-- it is impossible to suggest a perfect match (just like trying to find a dentist everyone would like). But this doctor seems relatively close and has the type of approach that has been helpful for some with the  issues you are facing. You can check out the website and see what you think.  I hope you will keep us posted. Sheila 

http://www.francisholisticmedicalcenter.com/

[samz]

Update: Sheila, we have tried contacting the doctor you recomended, but after many, many tries to speak to a person and leaving an incredible amount of voice message, we have not been able to make an appointment or even receive a call back. Wondering is you could recommmend another doctor, preferably someone in Western MA, but we are willing to travel. 

My son's tics vary from day to day. In March he was diagnised with Kawasakis Disease and had a three month stay in the hospital, receiving IVIG treatment. Wondering if anyone on this site has had Kawasakis? He is doing well, no damage to his heart so far and is being monitored by a cardiologist. His tics continue as well as some behavioral issues (at home only) that come and go. We are desparately seeking out a doctor but we are not sure what kind of doctor to reach out to. Any recommendations would be appreciated!

[Sheila]

Hi Samz, I'm really sorry that doctor did not work out! How very frustrating. I will give this some thought. Are you willing to travel?  Sheila 

[samz]

Yes, we are willing to travel. Thank you!