New here and overwhelmed

[Sarah_B]

Hi! My name is Sarah and I have five children. I am here because my son, who is three years old, starting having tics out of nowhere about a month ago. I should backtrack a little to where I think that I started noticing something was "wrong" though. In June we started noticing severe tantrums, and some OCD type behaviors. Not anything about being dirty, but having to have things in a certain order. We went on vacation and these tantrums increased to amazing heights, with two or three a day. They lasted for an hour and there was no getting through to him. I think that he had a hard time because his three older sisters stayed home, and he was just with one sister (his twin). Things got somewhat better when we got home. The tantrums went down to once or twice a week and I was able to find out what some of his triggers were.

 

About a month ago, I started to notice that he would blink a lot. I knew it was a tic, as my oldest daughter also had blinking at the same age. Hers went away, although she does have a quiet vocal humming tic at age 11. I then noticed a couple of weeks ago that what I thought was just him licking his lips, was in fact another tic. He also shakes his head like he is getting his hair out of his face (which is what I orginally thought he was doing) was in fact a tic. He also does two different face grimaces that are very different from each other.

 

These tics came on very quickly. I would even say out of nowhere. They are severe, and non stop. Stress makes them much worse. His OCD behaviors are worse as well, as are the tantrums. I think that the tantrums are a direct result of the OCD tendancies being denied by me. He can't do something exactly like he wants and this causes a tantrum of severe frustration.

 

I am scared and overwhelmed. I have an appointment on Monday to start the process of getting him into a pediatric neurologist.

 

In the meantime, I feel like I need direction. Please, does anyone have any words of advice?

 

Things that were a big change five weeks ago would be:

The big girls all went back to school.

I stopped nursing him (a huge source of comfort).

We are starting to move him into his own bed after he falls asleep.

I have been busier with my job (midwife) and have had a crazy schedule.

 

I know that these are huge changes. His sister is handling them just fine. What can I do for him? How can I help him?

 

He has not recently had strep. He was born at home and has never had a shot. He has been on antibiotics once for two days before discovering he was allergic. Other then that, he has only had Tylenol.

[Cj60]

Hi Sarah,

 

Sorry to hear your son and you are having to go through this.

 

From a year or so of being on this board with a son who has some tic issues, and reading posts and advice for children who have had symptoms similar to those of your son, I'd recommend that you also post on the PANDAS/PITAND board. There may be some realationship between his suddenly different behavior and some sort of infection (strep or other).

 

Was he or someone close to him sick with strep recently?

 

Others will also likely suggest that you keep Lyme on your radar.

 

I'd recommend that any visit to a dr. should involve good discussions of these two possibilities. If the possibilities are not taken seriously, look for a dr. who will take them seriously.

 

Good luck,

Chris

[nicklemama]

I would invite you to come over to the PANDAS/PITAND board and explore the symptoms of your DS. The sudden onset, the ocd and tantrums and tics sound very similar to PANDAS. In fact, while I'm no doctor, I'd guess its very likely your son has PANDAS.

[Chemar]

Hi and welcome

where I am not in any way suggesting that your son does not have PANDAS, I did note your comment about no recent strep infections, and also know that we have numerous people represented here who have had dramatic onset of OCD and behaviors and tics who are *not* PANDAS....my own son is one.

 

 

So where I would absolutely recommend you looking further into PANDAS, especially as I assume the no *recent* strep means he may well have had strep in the past?.....

I would also suggest you do look into the many other factors that can bring about these symptoms....

 

Here on the TS/tics board we talk a lot about the effect of genetics, diet, nutritional deficiencies, allergies (food and environmental), toxin exposure etc

 

Whether or not your child has an infection induced illness like PANDAS, PITAND or Lyme, it is still very worthwhile investigating these other parameters, as these situations are not mutually exclusive and often determine the best route of treatment

 

I would suggest you just start reading here and on the other boards, keep notes on what you learn and also a journal on your child, observing what seems to "trigger" his symptoms etc

Most importantly, try to find an open minded doctor who can guide you through the maze.

 

Do take a look at the Helpful Threads pinned to the top of the board as well as there is much to be gleaned from them

here is the one from this forum

http://www.latitudes...?showtopic=2459