How do you get through the day listening to the vocal tics?

[tlkinser]

Hi all,

I am feeling like the worst parent ever because I can hardly stand to be in the same room (house, really) with my son. He has a LOUD grunt/yell/bark type noise that he makes every 5-10 seconds, sometimes more (like back to back, every single second). If he's not making that noise, he's squeaking (this happens every second, kind of coincides with his breathing) and he shakes his head or bangs things on his head. It is constant. He licks things, he acts more immature now than he did when he was three, he has a terrible temper, he cries over nothing, he is so hard to be around. This has been going on for the past 3 months, with a day or two here or there being slightly better but NEVER tic-free. There was a decrease in frequency a few days last week when we gave him some Benadryl, but that's not working anymore.

 

He starts school tomorrow and I don't even know if I can send him. I am just so sad and so frustrated. I just want the noises to stop- I don't even care if he blinks or shakes his head. I want SO much to believe that I can help him without medication, but I am about at the end of my rope with listening to yelling tic. I miss my little boy that had control over himself. Ever since spring, it's like we're living with a different child- the tics, the behavior, the temper... it's crazy. My husband and I are sick with worry. How do you get through the very bad days without losing your mind? And how do you hold onto the hope that there is an answer for your child without resorting to medication. I don't know how much more we can take.

 

Thank you and God bless all of you who are willing to help our children,

tlk

[itsme]

Hello, I don't know your history (what you tried) but have you ever tried Bontech Supplements. They work well for me and my son. Also, we are on a very strict diet.

[tlkinser]

Hello, I don't know your history (what you tried) but have you ever tried Bontech Supplements. They work well for me and my son. Also, we are on a very strict diet.

 

Hi,

We have not tried the Bontech Supps. We have eliminated all artifical colors, done Feingold (strictly for 3 weeks and now not as strict with it, but adhere to the basics), eliminated dairy for 2 weeks, eliminated eggs, eat nearly 100% organic, added a multi-vitamin, add Kids Calm, use Epsom salt in the bath... I have not seen anything make it better or make it worse. I have kept a detailed journal for the past 3 weeks with everything that he eats and his behaviors throughout the day. We have not found anything that stands out as a trigger. Food in general makes him tic. Just sitting down to eat causes him to start shaking his head and making kissing noises, grunting, squeaking, etc. He can hardly control himself- food is everywhere, he's messy, he spills- almost worse than when he was a toddler. (He's 5 now).

 

I know that we are early in our journey compared to others here and there's so much more to do, but it is so discouraging to work so hard on controlling his diet (he is very unhappy about the restrictions), and still have days like today where he is ticcing vocally non-stop.

 

He has been dx with PANDAS, but now that his titres are normal, the neurologist changed the dx to TS. They have offered us medication. We did the scratch test with an allergist and it showed a reaction to dust mites, mold and a slight reaction to eggs so we have pulled those (eggs) from his diet. We are meeting with an environmental dr on Thurs- hopefully she will be the one to guide us in the right direction.

 

Thank you for your post. I will go to the website and look into the supplements. I am just hesitant to add anything else to his system that he may not need. I have heard good things about them so maybe they will help my son as well.

 

Thanks again,

tlk

[ad_ccl]

tlkinser,

 

So sorry for what you are dealing with. I know how hard it is to deal with the once a second vocal sounds. It is totally normal to feel like you just need to get away from it - and you should give yourself some breaks.

If he was diagnosed with PANDAS does that mean antibiotics made a difference at one point? Why is he not on antibiotics now??? I am sure you have read a lot about azith here. While my sons titers remain elevated my doctor feels that in the end that the titers are not as important as treating the symptoms that are being seen. Your son does not sound like he is doing well right now - will your doctor let you try antibiotics again to see if it will make a difference. (sorry if you have already posted - I have been away most of the summer an not in tune with who is who)