New and heartbroken , can anyone talk to me?

[Sunflower78]

Hello all.

 

I have a beautiful soon to be 5 year old boy. He has always been perfectly healthy.  Breastfed till 26 months, fed all organic. We use green cleaning products and body products. No soda ever, no corn syrup, no artificial dyes etc. 

I postponed his mmr and chicken pox vaccine as long as I could. Finally gave him mmr in March and pox in April. Then I ran titers. Had to revax in June for school. 

He started blinking eyes 3 weeks ago, followed by constant sniffling without a cold, then humming and sometimes teeth grinding.  It happens when he turns over in his sleep also sometimes. He doesn't seem bothered at all and keeps playing and being happy. But, he is different. 

I am devastated.  I feel that one thing I did ruined his life. How can I live with this. I haven't slept in 3 days and can't eat. The guilt is killing me.

Pediatrician said no way it was vaccines and might be tourettes. Is tourettes diagnosed this quick???We have neurology referral. 

We had a pretty exciting but stressful summer, travelling,  with time changes and flights and daily activities. 

My question is. Anyone had a baby with multiple tics like mine and it was transient and went away?

I bought lavender essential oil and Epsom salt for baths, multivitamins,  made elderberry syrup, magnesium gummies and fish oil for kids.

I feel helpless and cry all the time.

 

 

Edited August 9, 2019 by Sunflower78

[Sheila]

Hi Sunflower78--welcome to the Forums. You sound like a wonderful mom and all the efforts you have made to stay green, breastfeed and eat clean have no doubt helped your son. 

Please don't assume it was the vaccines or that you did anything wrong. Many, MANY kids have symptoms just like your boy. Sometimes they go away on their own, sometimes it takes extra steps to find the cause and then go from there. You are right that there is no way this could be considered Tourette's (Geez!). 

I apologize that I am out of town and have to get off the computer but will check in soon. Don't despair, there are lots of things that can be done to help your son. Others on the Forum can help also.

Best wishes, Sheila 

 

 

 

[Chemar]

Hi Sunflower78

So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many things we learned here made such a difference in helping to manage his tics.

I do think your pediatrician may be way too quick to say Tourettes! Unfortunately many mainstream physicians really are not keeping up with so much info that is around about other possible tic triggers.

I am at work so I can only do a quick reply now, but I would greatly encourage you to just start reading up on as much info here as possible and also on the main ACN/Latitudes website https://latitudes.org/

Sheila's books and articles have been a tremendous help to so many as well!

 

[Sunflower78]

Thank you both for your kind words. This feels so lonely. 

We have a neuro appointment on 15th, but who knows what they tell us. It seems nobody really knows much about tics and first advice is wait and watch. Sigh.

I am taking him to the zoo today to try and forget for a while.

I bought the book already!

[evemac]

Sunflower78,

YOU ARE NOT ALONE! There is a community of support who can and will listen and understand what you're going through, direct you to resources, tell you what has worked for them (elimination of gluten for us for sure), and give you hope.  That was about the same time my son's tics started, and it has been a long, fascinating journey.  If this is any comfort, he is presently a thriving 15 year old who plays football, is the deepest thinker I've ever met, kind and empathetic to others, and a most marvelous human being.  As far as the guilt goes, that is tough, but  I try to remember that we are all complex creatures who have genetically inherited strengths, talents and qualities that can make life a little more challenging.  And that is true for all of us, whether it manifests as something extrinsically or not.

Hang in there.  We understand.

Eve

 

 

[Chemar]

Sunflower, there is info re vaccines and tics on the Latitudes homepage, but it's primarily related to the thimerosal containing vaccines 

https://latitudes.org/vaccine-research-thimerosal-tics/

I hope things are a bit better there. Have you seen the neurologist yet? Hopefully they will be an open minded one, which sadly is the exception not the norm. But there are some really clued up excellent ones, so I hope that will be your experience!  🙂

[Sunflower78]

Yes, all the info I could find is on thimerosal.  I always declined flu shots . He never had one.

He had a good day today, fishing and playing. 

I'm still a mess, but at least I sleep better now.

Our neuro appointment is on Thursday.  I agree, from what I read on here, many neurologists are not so good and push meds right away. I made appointments with 3 different pedi neuros at 3 different places.( husband thinks overkill, but at least I feel like I am doing all I can to find the best one).

I will let you guys know, what he says. 

Thank you so much for checking on us!!!

❤

[Cristo-Krista]

Sunflower...When are your appointments w the neurologists?  I feel like there needs to be a mix of alternative medicine, eastern and western medicine to help with our kids      But w people who are well versed in this topic. Diet, oils, chiro, testing etc I too feel helpless  

Chemar...thanks for the info on thimersol. We passed on the vaccines so far.  If wants to work or volunteer in a certain work setting, they make the volunteers and workers get vaccinated.  In some settings or careers it’s mandatory.  There are so many places that demand vaccines.  He is now questioning things and believing that vaccines are fine.  So as they become adults they make diff decisions.  I will inform him about the info you shared. 

[Sunflower78]

Soo. I don't know what to think. I guess it was positive.
The doctor we saw is a director of movement disorders at neurology department of National Children's hospital in DC and has 41 years of experience.  I guess he's seen it all.
He did neuro exam, said my baby is perfectly healthy. Said his tics are a 2 out of 10. He sees this every day all day. Said the next few weeks will be most interesting  as they could start winding down and taper off. Said he didn't have a crystal ball and every child is different.  But 15 percent of kids have tics. Said transient can definitely be both vocal and motor. Also mentioned they could go away and then rear it's ugly head in puberty. But at the end said 80 percent of kids with tics do not have them at age 18, which should be encouraging. 
I have a blood order for chemistry,  cbc, thyroid and some other stuff.

He said wait and watch approach is a way to go and would not medicate my baby( good) unless tics are very bothersome to HIM

Said magnesium supplements are a good idea.

[Cristo-Krista]

Hi sunflower 

Magnesium supplements   Did he say what kind of magnesium? There are so many types it seems  

I think that certain things bring out tics in some ppl. In your son I agree w your thoughts that it could have been the vaccines that brought them out.  In my son it was antbiotics that brought them out.  I know because every time he had them he had tics then two weeks later they mostly subsided to the point of not being noticeable.  Every time on abx.  The stupid thing is that I gave abx again double the duration and the last time and suddenly after the dose and injury there were sudden explosive tics.  Non stop.  They never went away.  Never.  Not in over one year now.  He holds them when we go to specialists but otherwise they are non stop.  I’m devastated.  

Ive done so much reading.  I’m just exhausted.  I know that Antibiotics brought out tics in him.  Abx also caused his face to look puffy and he had pallor.  I’ve asked around.  Abx doesnr help w ts or tics generally. Other people find abx helps w pandas or pans.  Others say if someone has mycoplasma or Lyme or COinfections (pans) then the antibiotics should help but if they get symptoms like this then it means that they are herding and the bugs are killed off and the dead stuff circulates around and csuses problems.  Cytokines or something. I don’t know. 

But bottom line when something (vaccines, abx, msg) brings out tics in a child ...it means something.  It doesn’t bring them out in everyone.  Some people.  I don’t know why though. When a parent notices a sudden change then that must mean something. Right ?

[Cristo-Krista]

I meant herxing ...not herding 

some ppl say that kids need to detox their liver or kidneys if they are herxing from the thing that caused the tics.  I don’t know 

[Sunflower78]

Yes, I agree. I need to look into detox

[Cristo-Krista]

Keep me posted what you learn 

[Sunflower78]

I'm sorry my answer was so short. I was trying to put my baby to sleep.

I can't believe antibiotics gave your baby tics! Isn't it a horrible feeling, we both thought we were doing something right by our kids and it possibly hurt them.

There is a lot of speculation on gut health tic connection out there,  it's worth looking into.

 

I just want my boy to be back to his self😭😭😭

[mert]

Hi, 

Sorry for long answer

My advice is first sticking with science, which unfortunetly does leave a lot to be answered on this topic at the moment. I fully understand and have seen the same exact behavior of accusing vaccines/antibiotics or other stuff. That is very unlikely to take you anywhere. There is no proof that links vaccines and antibiotics to TS/TICS. 

TS/Tics are quite different then most other illnesses and assessing them are quite difficult, which leads most scientific papers having contradicting and confusing information. Here is a very brief and quick summary of what I learnt so far after reading more then 1000 pages , closely following all research and observing all the cases nearby. (I will include a link to a very recent research that will also shed some light) 

1. TS is not much different then having only motor tics (I am not the only one thinking this way) . Some tics that are categorized as vocal tics are not true vocal tics. 

2. Tics are very common, some go unnoticed and some reduce to unrecognizable level quickly and got forgotten 

3. It's very likely that there is no such thing as transient tics. Almost all tics stay for longer then a year. This one year mark put on the diagnosis criteria is arbitrary and is based on scientific evidence. (see the paper below) 

4. On significant amount of the cases , tics will get a lot better in 12 months of onset. However presence of anxiety disorder correlates with worse outcome on tics severity decreasing. 

5. Tics usually don't come alone and come with OCD/ADHD/Anxiety disorder. After reading several research reports, I think not having a comorbid issue is suggests the best outcome. Having Anxiety Disorder has the most negative impact on tic severity. So if your child also exhibits these comorbid issue , you need to focus on them too. 

6. Multiple tics are very very common, it's quite normal that number of tics to increase and some of the tics be replaced with others. 

To sum up, this is most probably going to be a journey. Your first focus should be reducing anxiety over the child as much as possible and watching for symptoms of stress. Keep a diary. It's very probable that tic severity will be down very significantly in 12 months. We had the exact same issues (I think I've seen and still seeing , almost every tic in the book  and had sometimes 5-6 different tics at the same period) and after 18 months, severity is very significantly lower (still waxing and waning) and I hope it will keep on getting better (though some people comment puberty can make things bit worse for a few years..) 

Some people are able to determine links between tic severity and some external factors like allergy or certain types of food intolerance, environmental factors etc... I did my best and I could not be able to positively relate the severity of tics to anything other then anxiety and sleep. So I am focused on better sleep and keeping anxiety and stress to bare minimum. My child has allergic rhinitis (confirmed by a specialist) but I could not able to link tic severity to allergy severity positively, but I took all the precautions to decrease allergens around (remove carpets, hepa filters every where , anti-allergic stuff etc..) 

Please read the latest research on the topic , do not bothered much with words like TS. Unfortunately, despite the high frequency of tics in population this is still uncharted territory. 

https://www.nature.com/articles/s41598-019-40133-4/email/correspondent/c1

 

BTW : I am trying to reach out to EMTICS research reports with no success at the moment. If anyone knows a link I'd appreciate. That is the only large enough study that can shed light to some of the outstanding questions. (though I got some doubts) 

 

best regards

Mertol