Looking for Insight

[Sarotchka]

Hi . This is my second post.  I'm not sure if I should just add to my first thread or start a new one so if this is inappropriate, please let me know.

I am having a hard time emotionally with my 9-year old son's tics (facial--a mix of eye widening and mouth circling for about three weeks now).  I think in general, they have diminished, but when I see them, my insides are just wrenched and I have a hard time not showing my discomfort/worry.  He has no other symptoms--eating, focusing, sleeping, socializing fine. Luckily, we will be seeing a pediatric neurologist next week.

Here's what we have so far:

• The pedi did the following blood tests:  CBC-- normal; Lyme-neg; Magnesium--low range of normal; ASO titer--normal.
• I have started him on Magzkids magnesium supplements (two in the morning/ two at night) and Renzo's Bright & Brainy B6 (one in the morning). 
• I have reduced screen time to one hour max a day, reduced sugar and tried to cut out artificial colorants and preservatives.

Of course, though, I have a whole raft of questions and it seems like this board is one of the better places for answers.

1) Given the blood results and my son's (lack of other) symptoms, how concerned do I have to be about inquiring into PANS/ PANDAS?

2) Could low Magnesium cause my son's facial tics?

3) What other modifications or suggestions do you have? What should I pursue with the neurologist?

4) How do you relieve your own stress?  (I feel so selfish because I think this is affecting me more than him, but I can't seem to help it).

I really really appreciate all your support.  I know my son's symptoms are minimal compared to many, and yet this is so very hard.

Best,

Sarah

[Chemar]

Hi Sarotchka

I just wanted to let you know I doubt there is a parent here who has not experienced the heart wrenching you are experiencing. It is one of the hardest things to feel helpless when we see something is wrong with our child.

If I can encourage you...my son was just 10 when his tics, OCD etc exploded with such severity that it was causing him injury, followed by him being put on a medication that made things so much worse that he ended up in hospital. However, things did improve even though yes, it was a long and hard road to walk with him, especially to control my own fears and stresses and just let him BE. But he is almost 30 now, and a wonderful young man who faces life head on, filled with great compassion for others who struggle in any way.

To try to answer your questions

It's always possible that there might be a PANS connection, but if his bloodwork and symptoms don't match, likely not. However you might also want to ask on the PANS forum to see what the more experienced parents suggest.

Yes, low magnesium can play a part in tics. We noticed a remarkable improvement when we began supplementing my son's magnesium, along with the Epsom baths. Do note that magnesium oxide (found most frequently in supplements) is near to useless as it is very poorly absorbed.

As far as your own stress goes....phew! As In mentioned above, we all know how hard that is to control. But we also know it is very important for a child with tics not to feel like they are constantly under a microscope as it definitely makes it worse for them when we are focused on their tics. It takes a lot of self control, and sometimes you just need to go for a walk or do something just for you to be able to decompress. I am a person who believes in the power of prayer, so for me that was a major "go to"! Also being able to talk to others who understood, even though their situations might not have been exactly the same. I was part of a Mom's group for kids with special needs and that really helped me a lot.

Here is something written by my friend Lara that helped me put things into perspective. I hope it helps a bit for you too. ♥

Quote

Just want to share something with you all, please.
Sometimes I find it hard to express myself on some of the threads. I hear you but I don't always know how to get across how I feel.

People with TS tic. It's OK!

Sometimes some tics can be self-injurious or problematic, that cannot be denied. Some tics interfere with all manner of things, like reading, writing, walking, breathing, talking etc. etc. etc., (yes, I know) but the majority of the time they are JUST tics.

I don't even notice people's tics much anymore. I know this might sound most peculiar to some people, but I also find tics of people I know very well, quite endearing.

People tic when they are relaxed. People tic when they are stressed. People tic when they're driving. People need to feel they can tic freely and not feel as if they're being watched, or being studied. It feels good to let it out. People tic 'cause they gotta tic!!!

My son sure has bothersome ones but they are only bothersome to ME when they are dangerous or are causing him grief for some reason or another. I think the most grief he faces is from people who don't seem to just see him as _him_ anymore. They see his constant ticcing and it's as if they negate the existence of his 'self'.

Every single day I am reminded how comfortable home is for my children. That's because school, for example, causes so much build up of unreleased energy. Kids and staff at school, despite education, still don't see past the tics. They don't see past how much my children have changed tic-wise since they were in Year 1. They don't look!!!

I'm not denying that tics can be of concern. I'm not denying that tics can be a right pain. I'm not denying that tics can really affect some people's quality of life. I'm not living in some unrealistic place where I deny the concerns and the pain these _can_ and do present. Believe me, please, I know. However, I think we need to understand in our own minds, that there are many more things that can cause more distress to a person than tics.

We need to start with ourselves. Start at the source. Change the way people view TS from here. I truly empathize with you all who are struggling with this in your young children. I have struggled, still do struggle, and will struggle in the future with some issues. I think the greatest thing we can all do though, is to look BEYOND the tics. Hey, maybe the rest of the world might get the same idea!

Your children's tics are just part of the tapestry of who they are and who they will become... just a tiny part.

 

[Sarotchka]

Thank you, Chemar for the kind words.  It's so meaningful to know that there are others who get it and want to support each other.

 

Much gratitude.

Sarah

[Chemar]

You are very welcome Sarah. I know it doesn't solve the very real issues you are dealing with, but it certainly helped me have support from other parents who understood.

I also wanted to point you to our "Useful Threads" pinned at the top of the forum, as you had mentioned wanting to gather some info when you see the neurologist. You may find some helpful ideas there. Our personal experience with conventional docs was sadly only prescriptions, and that really didn't benefit my son in the long run. It wasn't till I found ACN/Latitudes and started a different type of approach that we saw relief and improvement.

 

 

 Also do be sure to check  the excellent resources on the main website here

http://www.latitudes.org