DO ALL PANDAS KIDS HAVE TICS?

[Betsy]

I am new to this forum and so many of you have been very helpful and encouraging. Thank you! I just got off the phone with one of the doctors helping us with our little three year old. He thinks that she is just incredibly strong-willed and may have some OCD tendencies and is suggesting that we just meet with a Ped Psychiatrist and learn some parenting strategies. I still haven't heard back on her bloodwork and strep culture, so I don't know how that will go there. But do all PANDAS kids have tics? Looking back, can any parents here see signs of PANDAS before tics may have developed? She shows everything but tics and decreased motor skills. I would love to be wrong about this, but these are NOT normal fits to my eyes, and I've been with my little one every day at home since she was born. I KNOW her! She's having anxiety, OCD, fears of dying, fears of being in another room from me, fears of leaving home, trouble falling asleep, and such frustration, can't even let us dress her! Would welcome anyone's perspective. I know hindsight is always 20/20, so if you have any experiences before you realized PANDAS, and would not mind sharing, thank you. I am not too proud to be wrong, but if I'm going the right direction ealy, I want to be sure to keep pursuing.

[dcmom]

NO- all pandas kids do not have tics.

[thereishope]

My son never had tics. Buster once did a thread on this and many responded whether they had tics, OCD, both. I'm having problems with my computer and pulling up old threads. You can go to Buster's profile, pull up his topics and if you scan through them you will see it.

[Kayanne]

I agree with DCmom.

 

I thought my daughter had a mild coughing tic...but yesterday, she just said to me that she was coughing and breathing like that into her arm because she didn't want the "little boogies" to get out into the air....so I would say that was OCD and not a tic.....so my daughter had-obsessive thoughts without compulsions.

[matis_mom]

I am new to this forum and so many of you have been very helpful and encouraging. Thank you! I just got off the phone with one of the doctors helping us with our little three year old. He thinks that she is just incredibly strong-willed and may have some OCD tendencies and is suggesting that we just meet with a Ped Psychiatrist and learn some parenting strategies. I still haven't heard back on her bloodwork and strep culture, so I don't know how that will go there. But do all PANDAS kids have tics? Looking back, can any parents here see signs of PANDAS before tics may have developed? She shows everything but tics and decreased motor skills. I would love to be wrong about this, but these are NOT normal fits to my eyes, and I've been with my little one every day at home since she was born. I KNOW her! She's having anxiety, OCD, fears of dying, fears of being in another room from me, fears of leaving home, trouble falling asleep, and such frustration, can't even let us dress her! Would welcome anyone's perspective. I know hindsight is always 20/20, so if you have any experiences before you realized PANDAS, and would not mind sharing, thank you. I am not too proud to be wrong, but if I'm going the right direction ealy, I want to be sure to keep pursuing.

In hindsight, I now realize my son had tics, but I did not recognized them in the beginning (eye blinking, a little twitch of the neck, etc, nothing dramatic). Also, the OCD sort of crept up on us, it was not a sudden onset. There is a certain picture of the "typical PANDAS", but not everyone fits into that.

So, I would say, keep pursuing the PANDAS diagnosis, and if you are going to see a specialist, I would try a neurologist or a PANDAS expert before I see a psychiatrist. Start keeping a journal of behaviors, health (both her and other family members), anything else that may be worth noting. It seems the sooner you catch this the better off your child will be, so if your mother's instinct is telling there is something there, follow your nose

[thereishope]

I fixed my computer problem. Here's the thread...

 

http://www.latitudes.org/forums/index.php?...ic=5220&hl=

 

I should add my son's motor skills didn't appear to be affected either.

[familyof4]

My son does have tics but before they developed we had strange behavior for at least a month maybe more when he was 4. Huge tantrums over things that weren't tantrum worthy, fear or driving on the highway, strong aversions to things he normally loved to eat, not wanting to leave the house or participate in activities he previously had enjoyed. I tried to brush it off as a stage. I mentioned it to the doctors and the neurologist when we had him evaluated for the eye blink tic that developed and not one doctor said anything about it. Looking back I know it was connected to the PANDAS.

[Suzan]

Your dd sounds like my girls. I did not think they had PANDAS at first either. Neither have tics. Hang in there!

 

Susan

[FallingApart]

Hi there,

 

DD does not have tics. Also, when you say she doesn't have diminished motor skills, you may change your mind as time goes on. DD just turned 4 and when her PANDAS started she had just turned 3. Throughout this past year, I definitely watched her gain and lose moor skills. At this point she is very behind in all types of motor skills.

 

Keep looking for a ped or other specialty that will support you.

[momaine]

My dd didn't have tics until 3 years after developing ocd. Just figured out it was Pandas a couple months ago.

[Megs_Mom]

No tics - also initially thought we needed that for diagnosis. She had "spitting" - but it was really OCD - she was spitting "germs".

 

We did have handwriting & spelling issues, that have completely resolved.