Help! I feel so alone! 6 yr ADHD daughter developing disturbing verbal/behavioural ticks!

[FloridaMom1073]

Hello everyone. My name is Kat. I'm a single mom. This is the first forum I've ever participated on since I was pregnant. I came her because I'm tired of staying up crying at night and wondering why this is happening to us and why my daughter seems to be getting worse to the point of soon I wont want to go anywhere in public with her! At 3 yrs old my daughter was diagnosed with combined type ADHD. She has been on  medicine since then too. Some people who dont know her will say "Oh thats too young" but my daughter's hyperactivity level was literally off the charts. So, 3 yrs later we are here and I've been trying to tell her doctor I feel shes on the spectrum for autism, high functioning, but he wont listen to me. (In the process of switching doctors, by the way. Within the past week Ava (my daughter) has started just out of the blue displaying some mild Tourettes-like behavior. Shes began clearing her throat, grunting, sniffing and repeating the words "This", "That", and the letter "I" over and over again randomly. She also says some non-sensical words that make no sense. I've noticed she does it a lot more at the end of the day when shes tired and read to go to bed. She also mumbles "I" constantly in her sleep when she tosses and turns. Whats most upsetting is shes developed this weird fixation on sniffing body parts! She seems unable to control herself from sniffing my *arm*. At first I thought she only had this obsession with me, now I know its not only for me. When we went out of town she started sniffing her cousins arms. Its embarrassing and people look at me and it makes me feel bad. The sniffing of body parts combined with her blurting out random words and the grunting is extremely hard on me. Especially since the tourettes-like behavior just started two weeks ago. I dont understand the reason behind this! Nothing has changed in our household, there have been no changes in her life, so I dont get why this is happening. Sometimes I cry at night because I just want her to be ok and to act like every other child. I also feel guilty for feeling THAT way!! I did a little research online and the websites all say most kids grow out of these ticks, and sometimes they outgrow some only to develop others. I dont know what to do, I dont know any other moms going through this, and the ticks are EXTREMELY upsetting. Especially when she is lying there at night trying to go to sleep and I can tell its even bothering her, because its hard for her to relax and fall asleep with the constant moaning, grunting and words. Does anyone have any suggestions????

[FarmerBeth]

Is your daughter currently on a stimulant medication for ADHD?  It is possible for her not to have reacted from it this way in the past and to have developed a sensitivity later on.  Stimulant medication can cause Tourette's type tics in some people, so your pediatrician will need to rule this out.  My son used to be on Straterra rather than a stimulant medication for this reason.

My son (who is newly diagnosed on the spectrum at age 11) has both repetitive tics and has had transient Tourette's type tics.  He had the worst tics at around age 7 (his included throat clearing and grunting, shoulder shrugging and sniffing) and they started at about age 6, although he had repetitive tics from age 2.  What you read is right about transient tics being common for that age, most do come and go and change over time, and the majority of kids will outgrow them by age 12.  There's a major brain rewiring around that age (this is according to both DS's neuropediatrician and the psychiatrist).  Apparently, after that age people usually mentally verbalize stresses rather than having them come out as tics.

Tics can also be caused by strep type infections.  Google PANDAs and you can see about that.

I suggest you get her seen by a developmental pediatrician or a neuro-pediatrician.  You'll need a lot of medical issues ruled out. 

The only thing that helped us through intense periods with tics was finding replacement things to do that were less distressful, like a toy to fidget with or pat.  It also helps to avoid things that may initiate a tic.  For example, when we were having issues with throat clearing and grunting, we found that if he started out stuffed up, it would initiate the tic but then it would keep going rather than petering out like it would for most people.  So we avoided milk since the feeling of it going down seemed to proceed throat clearing that later became a tic.  Also, avoid telling her to stop the tic (unless it's the repetitive type like nail biting or skin picking, I've been told those are OK for gentle redirection) because it will just intensify the need later.

I think it's really important to remember that just because tics are visible doesn't mean they are more harmful than other less visible problems kids can have.  I can remember feeling like a terrible mom because somehow I had this kid with tics that wouldn't go away.  But honestly, they mostly only bothered him when they bothered other people.  Take whatever time you need for you so that you can stay centered and not accidentally have her worry for you.

[HarperRose]

Beth really had a lot of good advice. I don't have any to add, I just wanted to offer a hug. 

[Emmeline II]

Originally Posted by FloridaMom1073 

I dont understand the reason behind this! Nothing has changed in our household, there have been no changes in her life, so I dont get why this is happening. Sometimes I cry at night because I just want her to be ok and to act like every other child. I also feel guilty for feeling THAT way!! I did a little research online and the websites all say most kids grow out of these ticks, and sometimes they outgrow some only to develop others. I dont know what to do, I dont know any other moms going through this, and the ticks are EXTREMELY upsetting. Especially when she is lying there at night trying to go to sleep and I can tell its even bothering her, because its hard for her to relax and fall asleep with the constant moaning, grunting and words. Does anyone have any suggestions????

The median age of onset for Tourette's is 7yo so it is possible that she has Touretts's and it just "turned on." Either way I'd visit the Dr. because if it is Tourette's then she may need to come of stimulant medication and if it is the medication itself causing the issue you may have to switch if it is interfering with her sleep.  My ds has ADHD/Asperger's and his worst tics occurred between 6.5 and 7yo; he had tics prior to starting medication. Now his tics really aren't obvious except when he is tired.

Neuroscience for Kids - Tourette Syndrome

Tourette Syndrome Fact Sheet: National Institute of Neurological ..

[melissa17s]

My initial thought... could medication be causing issues?  I think Farmer Beth's insight is good.  I was wondering, if you have your dd in counseling for the adhd or have considered it?  Maybe you could do some family counseling or even go with out your dd. I found talking to my ds' psychologist helped me gain perspective on how to cope with some of his issues related to adhd.    

[EarthRootsStarSoul]

Originally Posted by melissa17s 

My initial thought... could medication be causing issues?  I think Farmer Beth's insight is good.  I was wondering, if you have your dd in counseling for the adhd or have considered it?  Maybe you could do some family counseling or even go with out your dd. I found talking to my ds' psychologist helped me gain perspective on how to cope with some of his issues related to adhd.    

That's what I thought too.  The child should have a comprehensive new review of her development.  She's growing up; the changes between age three and six are enormous.  At this point, she may need a different diagnosis, different medication, and different treatment plan. 

[FloridaMom1073]

Wow, thanks to everyone for your outpouring of support and helpful information! Especially FarmerBeth, I really appreciate your advice and it makes sense. We are actually planning to move to another city next week, so I'm going to be switching her doctor anyway. I'm defintely going to ask for a referral to a neuro-pediatrician! My current doctor does nothing but sits behind his desk, asks me if I have any questions or concerns, and when I do he tells me "Oh dont worry about that, it'll go away." So, in a way this move and swtiching doctors will be good. I will explain to the new doctor everything I've said here and hope that I can get her re-evaluated and get on the right track. Also, if it is her meds causing the tics then maybe we can get her on something different. She is currently on concerta, rispiridone and chlonidine. I have also decided, since reading more on this, that instead of getting angry or frustrated with her I just have to let her alone and not try to make her stop. It's difficult because Im worried we will be out in public one day and she will just start grabbing onto my arm and sniffing it...or worse, try to sniff a stranger! Maybe having a doll sprayed with perfume will help? I will keep trying. Again, thanks again to everyone and i'll be back soon with updates!

Kat

[HarperRose]

I hope your new move will be beneficial for you both, Kat.

If it's any consolation, my 2 kids on the autism spectrum never sniffed me, but my one child *not* on the spectrum sniffs me constantly. I just let it go. If he sniffs a stranger, I suppose I'll deal with it then. ;) You could just just laugh it off, if she does it, and say, "Kids! They're too much!" and not worry. :) Maybe you'll get lucky and she'll sniff someone whose kid already sniffs them. lol

Big hugs! You're doing so awesome with her. :)

[FarmerBeth]

Good luck!  Give us an update after you see the new doctor, I'll be thinking of you.  I don't know about your daughter, but I found public tics somewhat subdued compared to at home tics, and I've met others with similar experiences.  Try not to let your fear of potential embarrassment stop you from going out as much as you would normally.

[Emmeline II]

Originally Posted by FloridaMom1073  I have also decided, since reading more on this, that instead of getting angry or frustrated with her I just have to let her alone and not try to make her stop. It's difficult because Im worried we will be out in public one day and she will just start grabbing onto my arm and sniffing it...or worse, try to sniff a stranger! Maybe having a doll sprayed with perfume will help? I will keep trying. Again, thanks again to everyone and i'll be back soon with updates!

Maybe a pocket size book that you put scratch and sniff stickers in? If she is walking with you she could hold on to your arm like she is just being affectionate and stiff.

We did try to work on "alternatives" for tics that were bothering him or were causing him social problems in school. Ds had a sniffing tic that stuck around awhile and we worked on making the movement more natural like leaning on his hand on his desk or (if he was standing) holding his chin/cheek like he was studying a painting, instead of obviously sniffing his finger tips. Last year he had a "squatting" tic that was getting a lot of negative attention--he even did it on stage during the spelling bee and was laughed at; I don't remember exactly what we suggested but he did have a bathroom in his classroom so I might have suggested he use that in class or that he squat down like he was tying his shoes (instead of looking like he was getting on a horse). Last summer he had one with his nose that was bothering him (watching his nostrils flare which was causing eye strain) and his ST suggested massaging his nose in a downward motion and it went away a couple of weeks later.

There are some tics that ds' cycles through regularly and others that just appear once or rarely.

[fiddlefern]

My ds1 (Asperger's) developed a tic when he was 5 that lasted a few months.  At first it _really_ freaked me out.  Then I talked with a friend of mine who has a disability and works advocating for people with disabilities.   He pointed out that the behavior (ds1 said "uhhhh.....uhhhhhh.....uhhhhh" when he was tired or bored) appeared to be soothing to my son.  My friend said that he sucked his thumb as a child and even into adulthood and even still occassionally.  And he said, there's so much in life that's stressful, can't we allow people to sooth themselves, at any age?  After that I was able to really calmed down about the whole thing and decided that I could give ds1 the space to have his "tic."  It ended after a few months.  Having had this experience helped when my second (who is neurotypical) started what I considered to be much MORE annoying tics and obsessions last year (when he was 4).  He cleared his throat constantly, whether he had a cold or not.  This was followed by an obsession with us smelling his feet.    Like, asking us over and over and over even when we said no.  Thankfully, he's done with that behavior now.

It sounds like you've already decided not to try and make her stop.  I think that's great.  For me, that was half the battle- allowing them to have their tics.  With your kiddo it sounds like there may be a lot more going on, and I think it's awesome that you are following up and asking good questions and helping her.  It's so hard to strike that balance between action and acceptance, at least for me.

[sydsmama]

So sorry you are going through this right now. I highly recommend having her tested for strep to rule out PANDAS. My daughter was diagnosed with this last year after she very suddenly started very similar behavior to what you described. She had no typical physical symptoms of strep, but tested positive with a high count. Interestingly, at that time we were in the process of a life changing situation as well. I've often wondered how much that possibly contributed to her little body developing an autoimmune reaction.

Anyway, it's a simple swab test and 4-5 day wait to rule out something that can definitely be treated. Totally worth it.

Hugs to you and your little sweetie....