Onset

[Lynn777]

Hi Everyone!

 

I'm sure this has probably been discussed here before, but for those of you that have children with Tics/TS + comorbidies, when did the comorbidies start? At the same time as the tics, whithin weeks, months, years of the tic onset? Also, did you notice anything that wasn't "typical" about your child (baby/toddler/youngster) before the onset? Maybe not even at the time, but in retrospect?

 

As usual, I'm trying disect things, which is what us TS mom's seem to spend an awful lot of time doing and I'm just curious of other's experiences.

 

Thanks,

Lynn

[mommyfor4]

Hi Everyone!

 

I'm sure this has probably been discussed here before, but for those of you that have children with Tics/TS + comorbidies, when did the comorbidies start? At the same time as the tics, whithin weeks, months, years of the tic onset? Also, did you notice anything that wasn't "typical" about your child (baby/toddler/youngster) before the onset? Maybe not even at the time, but in retrospect?

 

As usual, I'm trying disect things, which is what us TS mom's seem to spend an awful lot of time doing and I'm just curious of other's experiences.

 

Thanks,

Lynn

 

Hey Lynn,

 

Our son was a very quick learner, sitting, crawling, walking very early. His speech was very advanced as well but he was very reactive to learning new skills and would practice them to the point of frustration until mastering them and then moving on quickly to the next skill. He also was not a good sleeper and was easily overstimulated, although in all other areas a very easygoing baby. Even in toddler years he was very tactile, sensitive to tags etc. and needing to rub skin, especially mine or my mother's. He ALWAYS reacted to immunizations with fever or strange things like Roseola, Hand Foot and Mouth, or night time issues. Later he started into night terrors and if sick would have superhigh fevers sometimes hallucinating and sweating. He was always prone to extreme bronchial coughing often to the point of vomiting. We suspected milk intolerance early on due to constipation. We didn't see tics until around Kindergarten age and they peaked at grade 1 after we had moved and his third sister was born, he had also started having strange anxieties for example swimming and needles. By that time we saw his grades dropping and realized he was reversing letters and numbers and a child who had been an easy learner was struggling with reading. This was when we realized we had something BIG going on here. And that began our search for food sensitivities etc and realizing that his dad also has a Tic Disorder. He had never known what it was until our son started showing similar tics. Can't think of much more right now but great question, I too am curious.

 

Look forward to seeing others responses.

 

Megan

[Lynn777]

Thanks Megan,

 

Right now my son mainly just has tics, his therapist keeps telling me to stop worrying about something that might never happen (i.e. comorbidies). Some days I swear if one more person tells me to stop worrying I'm going to punch them .

 

Anyway, there was nothing unusual about my son as a baby or toddler (until the tics that is). Other then he had a slight speech delay.

 

I'm just always so curious about other peoples "stories". How things progressed or didn't progress.

 

The night terrors with your DS must have been very scary, then hallucinating on top of it. I'm sure as a mom I cab somewhat imagine how you felt, but how did he handle all of that?

 

How old is he now?

 

~Lynn

[Chemar]

Hi Lynn

 

it really is hard to determine which came first for my son as looking back, he likely had tics from a very young age. He also had what we now know as tourettic OCD when younger. In fact, we got the OCD dx before the TS one, and he was dx with ADD, CAPD and sensory issues in preK. The TS dx came when he was 10, and had a very dramatic exacerbation of tics, depression, anxiety, OCD etc, similar to that described by many of the PANDAS parents. He did not appear to have PANDAS tho, but likely was PITAND, with the backdrop of the inherited TS .

 

I had an older son so was able to compare development and definitely, my son with TS had more issues right from birth.

 

lol now don't punch me but I agree...stay vigilant... but stop worrying

[Lynn777]

See, I learned something! Cheri, I never knew your son was diagnosed with some of those issues before the dramatic onset. So, when your DS was younger did you do any alternative treatments or did you only start once he was 10?

 

Honestly, how did you cope with all of that? Really, what brought you threw all of this? PLEASE share your wisdom...

 

Sometimes I wonder if I'm just weak, my son has not shown signs of those other issues (yet) and even still there are days I just want to leave and check myself into a clinic somewhere. At the very least heartbreak hotel, if in fact it was a real place!

 

LOL! I would never punch you, there are way too many people that need you around, but that therapist or one of my family members are in danger of a good pop one of these days

 

Vigilant, I'm sooooooooooo trying!

[mommyfor4]

Thanks Megan,

 

Right now my son mainly just has tics, his therapist keeps telling me to stop worrying about something that might never happen (i.e. comorbidies). Some days I swear if one more person tells me to stop worrying I'm going to punch them .

 

Anyway, there was nothing unusual about my son as a baby or toddler (until the tics that is). Other then he had a slight speech delay.

 

I'm just always so curious about other peoples "stories". How things progressed or didn't progress.

 

The night terrors with your DS must have been very scary, then hallucinating on top of it. I'm sure as a mom I cab somewhat imagine how you felt, but how did he handle all of that?

 

How old is he now?

 

~Lynn

 

He is 9 now and has not had night terrors or hallucinating fevers in a few years but yes they were pretty scary! He handled them fine because he generally didn't remember having them, but my husband and I at times were pretty freaked out. He was our first baby! It is a horrible helpless experience to see your child in so much fear and not be able to calm them, because they're asleep! It took many sleepless night of soothing talk and nightlights. The fevers were even more scary, very high and him scrambling away from me because he's seeing something else... They were common with most colds he picked up. Thank God that stage is gone!!!!!!

 

I empathize with your fight not to punch friends and others...I remember thinking if one more person told me they understood or to stop worrying I was going to lose it...that's when I started posting here! My friends and family owe you all a HUGE thankyou

Each step forward helps and everytime someone posts sometihing and I know that they DO REALLY GET IT because they also LIVE WITH IT lifts me up. So don't pop someone, come vent to us

 

Megan

[Chemar]

See, I learned something! Cheri, I never knew your son was diagnosed with some of those issues before the dramatic onset. So, when your DS was younger did you do any alternative treatments or did you only start once he was 10?

 

Yes, we had been using many alternative things as it was clear something was not right with my son. He was already seeing a naturopath and homeopath, but we had not yet formulated any fixed plan as were mainly doing various testing. He was on some homeopathic drops and pillules. His exacerbation happened just bf Christmas 1999, shortly after his 10th b'day.

 

We were very against getting medications when the TS/OCD dx came in early 2000, as we have always been holistic in our health perspective, but sadly, when things were eventually so very severe for my son after more exacerbations, the combo of the school, the neurologist, psychologist and psychiatrist scared and bullied me and dh, and persuaded my then 11yo that it was the only way he could have any quality of life so the year of the medication nightmare began.....ugh, I still struggle to think back on that year

 

I thankfully found a copy of Latitudes magazine at a friend's house in late 2001, when my son was in severe withdrawal from the meds, even tho under physician care. I learned from there about Bonnie's plan for her child (long before she had Bontech supps) and I found her then yahoo page with her supplement list. Took it to our naturopath and the rest is history...things kept getting better even tho we still have had the ups and downs that living with neuro and autoimmune illness brings. The Crohn's threw us a curveball (symptoms began in 2004 but correct dx only in 2006) Son has always had digestive probs tho, since infanthood, and one of his early dx from the naturopath was "leaky gut syndrome" and candida overgrowth, along with Epstein Barr virus.

 

 

 

Honestly, how did you cope with all of that? Really, what brought you threw all of this? PLEASE share your wisdom...

 

 

 

quote in my signature says it all: "When Life brings you to your knees...you're in a good position to pray!"

 

honestly, God alone knows the mess I really was inside. I was totally terrified and felt hopeless for my son's future. Only one thing got me through that time. Prayer. I know I found that Latitudes magazine as an answer to prayer that day. I had been begging God to show me the way to help my son.....and I was finding it in those pages.......I eventually joined the forum to share the success we were seeing as a way to "pay it forward", and that is why I am still here

[ilovedogs]

When my ds was 6 he started with anxiety issues. Being afraid of movie theaters, making a lot of fearful statements about getting trapped in buildings or elevators, etc. He also went through severe separation anxiety for years. I had him in therapy when he was 8 and the therapist told me he probably has GAD(generalized anxiety disorder), but then the tics started the day he turned 9 and then we had some episodes of severe OCD(intrusive thoughts) and also bedwetting(which we still struggle with periodically here). So, I think I noticed that ds was 'different' by the time he was 5 or 6, but the tics didn't start until a few years later. He's 12 now, by the way.

 

Bonnie