Don't know where to start

[mommynme]

I am completely overwhelmed! My 6 year old daughter has started with "tics" a couple weeks ago. I myself have tics, but nothing really noticeable to others and I do not have them all the time...mostly tic-free. I can not stop praying and crying when I see my little girl doing these odd things. eye blinking, neck stretching, sometimes sniffing. My ped told me to just ignore and see what happens. she did have strep a couple weeks ago also. our ped. said she doubted PANDAS b/c i myself have tics once in a while(mine happen when i am stressed like now). I am a basket case. I can not get off the computer....constantly searching for something to help her. I do not want this to get any worse. I have looked at our insurance to see what doctors are covered. i can go to an allergist or pediatric neurologist, no homepathic (sp??). which should i do? after much reading i feel like i need to have her tested for allergies, metals, leaky gut, etc? please, please any advice is welcome!! really need advice on what to do!! i already am giving her Kids Calm and epsom baths, but i don't really notice and it has been about 2 1/2 weeks already! which doctor and specific tests???? thanks for any help!!

[Karen Campo]

Hi- I know exactly how you feel. I too have had tics all my life and it wasn't until my son was diagnosed that i realized I must have TS or TSOCD. My son is now 8 and my 6 year old daughter started having tics about 2 months ago, as well as my 3 year old. I would say that my children, and probably yours as well, have genetic tic disorders. It is a tough thing to swallow and very upsetting but you have to try your hardest (although it is not easy) to fight through the sorrow and try to implement some changes in your household. i would first clean up their diets. Try to go organic and eliminate all artificial stuff from their diets, as best you can. My son thinks it is punishment so we can only clean up his diet so much. I give my kids 1 tsp of Twin Lab B complex (liquid) every day. It tastes real bad but I force them to drink it-- and now they pretty much take it willingly. I feel the b-complex helps with the stress which helps alleviate stress tics. I also give them Carlson's Fish Oil - 1/2 teaspon in the morning. My son seems to tic more when I give him magnesium- but I just started my daughter again on Natural Calm Magnesium-- more for her anxiety issues-- but I am not sure how this will benefit her. I also try to give my son Bach Rescue Remedy before a situation which I feel may trigger a tic-- soccer game, etc . . . I tried the CBT route and found it triggered more tics in my son -- as did habit reversal. he was 6/7 at the time and in no position to habit reverse multiple different tics. I could see it working if you have just a few tics and if you are older. If there is no anxiety or stress, I would skip any kid of psychologist-- as it is not a psychological issue-- but purely a "feeling", as you know. I would pursue the allergy testing, just to see if there are any known allergies. I am currently doing that for my daughter, and will purse for my son (he hates docs so I feel triggering tics by taking him). As for the neurologist, I think based on your history it seems clear she has genetic tics. Unless your going to medicate her right away, there is probably not much a neuro can tell you-- but go if you want a definitive diagnosis or a letter for your schoool district. The one thing to keep reminding yourself (which is not easy!) is that the tics do wax and wane and if you can sit tight, the tics will probably pass soon. Remember, though, that they will probably resurface. It is not an easy thing to swallow and I too struggle with it every day but having tics myself, as you do, we at least know what they are going through and can help them more because of our first hand experience with the same problem they are going through. I tell my children that they have the same "habits" that I had and that I gave it to them to try make them feel that they are not different in any way. lastly, I do find that the tics go away when we change our routine, i.e., go away for a few days. Try a quick trip-- it may help the first cycle pass. Good luck. Karen

[Chemar]

Hi

try not to worry as often childhood tics resolve on their own

 

here are some helpful threads, including ones for tests

http://www.latitudes.org/forums/index.php?showtopic=2459

 

and here are the helpful threads on our PANDAS forum too

http://www.latitudes.org/forums/index.php?showtopic=3928

[sf_mom]

I would rule out a possible infection based trigger. Please have the following test done.

 

- CBC Panel

- ASO (strep titers)

- Anti-DNase-B (strep titers)

- Iggs and Subclasses

- Mycoplasma

- Lyme

 

Your pediatrician can most likely help with the top three (if he/she does not find a new Dr.) and an immunologist or Lyme literate Dr. can help with the bottom three. I would also check yourself for strep... Please see the PANDAS/Pitands section of this forum and refer to helpful threads at top of page. With the sudden on-set and recent strep illness it is very likely there is a 'bacteria' that is being passed back and forth among family members. There is also a list of Dr.'s experienced in PANDAS listed under that section. Please also post your questions there for help.

 

My son who is now 6 had a sudden on-set one year and three days ago after a series of vaccinations and strep throat. He is fully recovered and a much different child. Do not give up on the idea of PANDAS/Pitands for your child even though you have mild tics.

Edited June 27, 2010 by SF Mom

[tpotter]

I agree with SFMom. I would definitely do the blood tests, and have everyone in the family checked for strep, as well (blood tests...not just throat swabs. Strep can hide out in plenty of places besides the throat.) Who's to say that your tics also weren't started with an infectious agent?

[faith]

mommynme,

hello,

first thing I am going to say is that there is a very good chance that this will not get as bad as you probably fear right now. I am in the same shoes as you, I have minor tics and know that I had a few as a child, despite my mother not really remembering this. my son is now 11 and I have been thru more than seven years of tics coming and going, some rough times, yes, but never as frightful as I once feared, fear of the unknown is the worst....

 

that said, I agree with the others, look into all you can, you're already having a great start poking around the net, but please don't get so crazy that you will try anything without doing thorogh research on how it could affect your child and the side effects, etc.. I would certainly look at alergies and sensitivities and you will be able to get a handle on things that possibley trigger your childs tics to increase, I don't necessarily believe that it or anything per se is the actual 'cause', but certainly these things can exacerbate things and by eliminating them, the tics can be managed to a better level.

 

try the natural means first and see the docs you can,...if you feel you want to check out the PANDAS connection and if strep has triggered exacerbation, by all means to a trial of abx if possible. but I dont' think it is the total answer, and i don't think parents should get so wound up and convinced that abx is the fix...I have searched this out myself, and if antibiotics don't cut it, I think continued usage can cause further problems, i.e. candida/yeast...so please search into all this with caution. I believe that those predisposed to tics may certainly be exacerbated by strep or viaral illness, but again, I am not completely convinced it is the total issue.

 

If you decide to try any supplements, those come with caution too, as some may cause increase for reasons unknowsn, such as fish oil, some kids just don't seem to do well on it, so it is all trial and error. Try to come up with a dietary and supplement plan and stick to it and see how it goes, but I would try things one or two at a time. If you can see a DAn doc, they can be very helpful, hopefully find one that is an allergest or immunologist as well, as the visit witll be covered by insurance if you go in as a allergy patient.

 

Faith

[mama2alex]

Hi Mommynme,

 

I'm sorry you are having to deal with this! Your pediatrician can't really rule out PANDAS based only on the fact that you have tics too. It's a complicated clinical diagnosis, so I'd say if you're pediatrician said this, they don't really know much about PANDAS. I'm not sure where you live, but here's a link to a list of doctor's who have helped kids with PANDAS - it's organized by state. You can also ask questions about PANDAS on the PANDAS/PITAND forum here.

 

http://www.latitudes.org/forums/index.php?showtopic=6428

 

The best doctor in the country is Dr. K in Chicago (contact info is on the list) - you can set up a phone consult with him by emailing him your daughter's history.