advice please! don"t know where to go from here!

[mommynme]

looking for some advice/guidance! ok. i am just going to start typing here....my 6 year old daughter started heavy eye blinks last year around May. My husband and i thought it to be the chlorine in the pool since she just started swimming. we did eye drops to help. we would simply ask her to stop or to try and stop...no big deal. i really don't remember it being bad. i know i was not worried or anything. it went away after a few weeks maybe. well, around the same time this year the eye blinks came back. again, it was soon after she started swimming again. so, we thought it must be the chlorine! however, this time the eye blinks were worse...harder, more frequent. and then came the neck stretches, and nose scrunches. all much worse when she watched TV. i started researching. through researching, i realized i myself have tics. had them as long as i can remember. i thought of them a nervous habits, and i can pretty much control them so basically they went and are unnoticeable to others! so, i read and read and read, and then came the crying and depression. i didn't sleep or eat for days. my husband and i were constantly arguing because he thought i was just acting 'crazy' and doing more harm than good b/c the children could see something was wrong...i knew he was right about that part at least. so i tried my best to hide my worry! so, it led me to thinking this...

 

Pandas- well, she did have strep about a month before her tics started this summer. it was a bad case, she had antibiotics, and then a steroid shot. so, i am thinking this is a possibility! cried my eyes out to ped., and she just brushed off the idea of PANDAS b/c i myself have tics.

 

Yeast- well, she did have a pretty bad yeast infection out of nowhere about a month or two after tics started...so, could she have yeast problem??? i did do spit test, and she had stuff float to bottom, again, is this maybe a big part of problem????

 

Artificial stuff- ok, so during the summer i cut out artificial colorings, flavorings msg alot...i know i didn't cut out entirely b/c my husband was not going along with this. he said we should just let her be a kid...that he barely saw half the stuff i saw. however, even after halloween candy and more junk there was not an increase in tics...so i really don't think the junk has a big difference. although, i still do not let her have much of the 'junk'.

 

Bonnie's- ordered and started around september. i was up to about 6 a day. i do think they were helping. but after about 6 or 8 weeks a new tic started. she stretches her arm and kind of hits her side with it. it really isn't that noticeable but she does it alot, still does!! my husband found out how many pills she was taking and just freaked, saying that was too much for a little girl and she needed to stop...he even told me i was the one who needed pills!!! well, i have to agree on that one a little i really do know that right now the tics are 90% my problem...they really don't bother her! oh, i just don't want in a year or two for the tics to be out of control and think to myself, i just sat back and let this happen! if i can help now, why not??? so i backed down to 3 a day and started natural calm, along with B5(she grinds her teeth horrible during sleep), and added B6. right now we still have arm flapping thing, and throat clearing, but when she watches TV, her facial grimaces come back, along with neck stretching and some eye blinks....TV always makes it worse!!!!

 

so, i have in the back of my head, to just up bonnies supplements again until i reach 10 and see if there are any results????

 

some other things...her eyes always seem so glassy to me, and the inner corners of her eyes get real pink/red. she has a nightmare about once a week. she cries at the drop of a hat....oh, this one drives me crazy!! oh, she a bad sniffing tics, this one really drove me nuts- i actually yelled at her to stop! yes, i cried after wards for being such a horrible mother! anyways, i was praying for the hundredth time one day asking God for an answer...i actually was talking to Him out loud, and during my talk i used the phrase 'an apple a day', i know sounds crazy but i was just rambling away to Him. However, withing minutes after my prayer, i started searching on the computer, and came across a supplement i never heard of- quercetin, and it used the phrase an apple a day! well, i chose to take this as answer. well, her sniffing went away after 2 days of starting quercetin. sniffing came back a couple weeks later, so i added quercetin again...about 2/3 days later, sniffing went away again...but none of the other tics left, hmm! so, could she have allergy problems...maybe food sensitivities???

 

so, i have many possibilities, but no money to go to naturopathic doc, especially without my hubby's agreeing. which i am sure by reading you see he is not on board with any of this...he wants me to let her alone! but, he did however agree to let her go to allergy doc...

 

so, after reading this book, i would love suggestions on where to start!! should i take her to allergist since i have hubby's 'permission' on this one? i just hate to make her go through blood tests, but hey if it leads me triggers, then i am all aboard the allergy testing...but what tests do i ask for???

 

just really want to get on the right path, and not go down a hundred wrong ones...if that's possible!! hope my rambling wasn't too confusing, but i really needed to 'talk' to someone since my husband will not even listen to me once i mention tics...thanks for any help/advice/encouragement....would love to hear what worked for you!!!

 

Julie

[mommyfor4]

Hi Julie,

 

I'm so sorry you are in such a lonely, frustrated, confused place! Definately have been there myself! I will just ramble too and see if anything helps. The first thought that came to my head was maybe your husband will be more receptive to just a good, clean multi vitamin/mineral for kids. It might normalize it a bit for him. As far as allergy testing the conventional allergy testing might be useful but will not show intolerances/sensitivities. Some of the main offenders could be dairy, wheat, soy and as you said artificials. For us elimination diet also helped our family as a whole to eat more healthy....might help if you spin it that way to your husband....

Because you have had tics yourself it could be hereditary, not to deter looking into PANDAS just a thought. We currently have our son on a kids multi by Progressive, Vitamin D, and Natural Calm as well as regular epsom salt baths. Others use Omega 3's and probiotics but as of now our son is not on any due to reactive tics but if your child doesn't tic from them a great addition as well...plus again can be seen as just a usful health tool for all your kids!

Using the word "tic" for the first time and admitting that that is what your child is doing is extremely difficult to come to terms with. I myself cringe still when I hear any of my other kids do anything that even sounds like a tic! It feels like after 3 years I am almost okay with my son having Chronic Vocal Tics but the thought of starting again with another child scares me! Even with a supportive husband I find myself needing this forum for strength and advice (I am the researcher, worker, worrier etc. he doesn't fight me, but I am in the driver's seat...sometimes it's nice to let someone else drive!!!), You are definately in a place with people who understand and I hope that you soon will get that support from your husband as well. No matter what, remember that the tics don't change who your child is. They don't speak of you as a mother...or lessen your child's chances of becoming something amazing...they are a lesson in patience, perserverance and unconditional love and support Your attitude about them will be as important as what supplements you use or what triggers you eliminate. Cry when you need to cry, and then hug your child and look hard for the blessings... I made a list of blessings related to my son and weighed them against the tics and work involved and I felt humbled by who he is...and I get to be his mom!!!!!!

 

I pray you find support, guidance and comfort along the way.

 

Megan

[mommynme]

Megan,

 

thank you so much for your kind words and prayers. I think sometimes, if i just had my husband to talk to i might just be able to handle things a little better! Oh, i spend hours every day praying and reading and praying and reading and of course worrying ,and then telling myself not to worry! if i could only just figure out what we are dealing with then i could maybe take a step in an actual directions instead of just letting my mind spin and race! i hear alot on here about answered prayers, and i just hope i can hear what God is trying to tell me when He is ready for me to hear! anyways, thank you so much for taking the time to respond...it's nice just to have someone share their thoughts!

[Cj60]

Hi Julie,

Not that there aren't lots of hard spots in dealing with this, but I think you are at the hardest spot right now. I do remember the helpless spinning feeling; not knowing exactly how or where to begin. It sounds like you have begun, and you've gotten yourself to the best possible place (this forum), in my humble opinion, so I hope you can take some consolation in that.

 

I'd like to echo Megan's advice, that being that anyone in our shoes should start by looking at a few specific things as a starting point, and then branching out from there. And it sounds like you've started already. 1) diet (probably the hardest thing, at least at the beginning!); 2) a good magnesium supplement (lots of threads here about this); 3) a very good (not just good, but a very good) multivitamin with lots of horsepower (you'll know what I mean when you compare labels, and again there are valuable threads here for advice on this); 4) epsom salt baths! None of these things should freak out your husband too much (arggh! those darned husbands!), except maybe the diet thing, if he wants your daughter to have sweets and junk. Because if diet is to be an effective weapon against the tics, it has to be thorough, and long-term (or non-stop!), as one has not only to pay attention to everything that goes into their child, but be vigilant in watching what reactions take place afterward. As I was told pretty early on in my process of dealing with things, "there is no pill -- diet is the pill."

 

Which leads me to my final bit of "preaching:" guidance is crucial. We managed to find a practice where people listen and know how to think outside the box. It's a couple of hours away, but we manage. And our insurance covers the basics (we have had a couple of extra things tested, but it hasn't broken the bank). I'd have had a much tougher go of things if we hadn't had a little help from professionals who know what they are doing.

 

Hang in there. Rest assured that, even though it might seem hard to believe right now, your hard work will make a difference.

 

Chris

[devotedmom]

Hey Julie, I just wanted to add my two cents in case it could help you at all. As for the frustration you feel, I can definately see myself in that. I am usually the type that is cool and calm when it comes to my child. I'm her number one fan, supporter, etc....however, I have suprised myself in how difficult I'm finding all this. My daughter has tics for over a year, but I've only recently decided that it's important to figure out why. Seeing her tic can make me want to cry or scream or wish it away. It's just fear, fear, fear. I'm afraid for my child and how she'll be treated and I want only the best for her, like everyone. Fear can make you act a little whacky, but it's only because you love your child so much. With that being said, sometimes I've just got to give myself a little slap, pull on my big girl pants, and get it together.

As for your husband, I can't say that my husband is quite like that, but he definately takes a back seat when it comes to figuring all this out. He lets me do all the "leg work" and he just sort of says "it'll be fine" a lot. For the diet, what's helped me be able to make some changes is to research certain foods and then tell my husband some facts and ask his opinion. For instance, with dairy, I said "Did you know that humans are the only mammals that continue to intake dairy after infancy? Doesn't that seem strange?" or with MSG I said "Did you know they link MSG with all kinds of neurological disorders like Alzheimers?". Those real facts influence my husband a lot. I don't know if your husband would respond to something like that, but maybe it's worth a try.

I can't really say what's a good place to start, because I'm in the early days myself, but I just made a list of all the things that could offer help and I'm just slowly making my way through them. I make sure I give everything a fair shot. I figure all we've got is time so I can just keep trying and tweaking until I've managed to help.

I hope you have great success in your attempts....and remember, your husband may find it easier to deal with this by pretending it's not really happening or it's no big deal. That's fair, because we all deal differently. Sometimes one spouse has to step up when the other one can't right then. Good luck:)

[mar]

Julie

 

your story sounds exactly that same as my sons. The eye blinking that would last a couple of weeks and return the following year at the same time. His were in the fall though. And then last fall is when it all went insane. It turned to shoulder shrugs, mouth opening, eye blinking, lip licking, anger and everything all at the same time. I also noticed an increase during tv time. I thought that might be the cause. I went absolutely crazy and my husband thought I was nuts! Let me just tell you that I would have not figured anything out with out the allergy testing (skin prick) and blood test for food sensitivities). He came up with a lot of outdoor allergies and about 28 food sensitivities (some of these sensitivities were then confirmed with a skin prick allergy test). Anyway, I went through a year now with total elimination diet which also includes dyes, preservatives, msg and all the nasty things. It was horrible and hard ( I won't lie) lots of fighting between dear son and I. Husband thought I was insane and beleived I should be checked into a clinic and at times I thought the same. I would go into dear sons bed at night while he was sleeping and just cry and pray and would hear him grinding his teeth like crazy. I would hold him and hug him and pray for someone to help me help him. I did alot of crying and praying. Many times I did not want to get out of bed in the morning. I was pretty much a walking zombie filled with tears just trying to make a meal that he would hopefully like a little. All through this time dh though I was nuts and insane. Forgot to mention that dh has ticks. So I would make his ticks worst by talking about it and it got to the point that I could not even talk to him. In my head I thought that I can't help dear son, am making dh husband tic more. I thought I really was going nuts with sorrow and guilt. But hey 1 year later it payed off. The diet payed off. My son has been doing extremely well this fall. His tics are 95 percent bettter. I think that allergies had a lot to do with it. Keep fighting and stay strong. Don't let anyone tear you down. You have to keep fighting and doing what you feel is right. I also added a multivitamin and did salt baths in the beginnig. You will get through this one step at a time.

 

Mar

[Chemar]

Hi

 

I just wanted to mention that just because your daughter may have tics with a genetic component, that does not rule our PANDAS!!!!

 

Personally, I would suggest you consult with a PANDAS literate doctor to be sure.

 

Where strep may be a factor in all this, obviously, just as everyone has mentioned, there are other potential triggers to sleuth.

But please don't take the chance of untreated infection by not investigating PANDAS further.

[Cristo]

Did you do two kinds of allergy testing?

 

What foods have you taken out of his diet?

 

I find that tv, computer and video games are bad news. I have kept my son away from tv as much as possible, by playing board games and physical games like hockey, with him and talking to him. The DS is the worse! We went to a neurologist, who said that my son had pandas and tics, and said that children increase their tics when watching tv because they are relaxed. I believe that I read somewhere that screen time increases tics because it does something to the brain. The neurologist said that he believes that it is relaxing for them, so they tic more. I just don't do screen time as much as I can. Just to be fair, I don't watch tv, so that my son doesn't say that it isn't fair. We only turn on the tv in the morning see the weather channel and the time on tv just before school...

 

When I went out to a function and left ds with a family member who had him watch tv for the whole 3 hours, I found that ds wanted to shrug his shoulders more.

 

Just want to know what you found helps.

[Hope]

Julie,

You have definitely come to the right place. There is so much support and positive information here!

My son is now 11 and started with vocal tics around 8 years old. Eye blinking, touching objects, smelling fingers, itching nose, etc...followed. It all started with a medical crisis involving my husband. DS was anxious when daddy was hospitalized and the tics started. I believe they would have happened at some point but this was the trigger. Looking back I don't know how I got through it all. But I had no choice. As a mom we just have to keep doing and take care of our family the best we can. I like how Megan said that we are in the driver's seat! And, yes, it would be wonderful to have a chauffeur sometime!!!

 

We chose the holistic route. We found out a year ago that he is intolerant to wheat, casein (dairy), oats, potatoes, lettuce, apples, beef, chicken...you name it! It has been hard but almost a year later I can tell you that it is making a difference. Well, something is. He feels so much better! He used to have constant stomach and headaches. They are very infrequent now. The tics are hardly noticeable anymore. Not completely gone but certainly manageable. Someone meeting him for the first time would never know. Teachers have not had any concerns at all this year!

 

We also cut out all artificial everything. No colors, dyes, preservatives. We became involved in our local Community Supported Agriculture program and now coordinate a pick-up at our church. So all organic as much as possible! The CSA makes it affordable.

 

The doc we see is an MD and naturopath. He started ds on GABA and 5HTP. They seem to be making a huge difference! He tolerates them well and sleeps much better having 5HTP at night. We also do Natural Calm, Bs, Fish Oil, Zinc, Magnesium Taurate. I was nervous when we started fish oil as I read it can increase tics in some kids. I believe it had the opposite effect for us. Increased that to twice a day and seems to be helping!

 

I can't tell you what a different kid we have today. In fact, he is participating in the school geography bee this afternoon. He is the choice for 6th grade winner. We will see. I am just proud of him for doing his best and participating! Last year I was frozen with fear about him being in a public speaking contest at school. Just the fact that he had to get up in front of the whole school worried me. He got up there like he owned the place and won the darn contest!! My kid with vocal tics won a speaking contest! Amazing! He has shown me what a strong person he is! Funny since he is a tall, skinny kid. He doesn't look like the strong type but he has more strength than anyone I know. He doesn't let anything get in the way of what he wants to do. I have learned so much from him!!! This has been a rough journey but I am so glad I get to take it with him and watch him grow!!!

 

Hang in there. Keep coming back here. Take it slow and try one thing at a time so you can see what works and what doesn't. Find a good doctor. Trust God. He certainly has a plan for each of us.

 

I look forward to reading more about your wonderful daughter and your journey together!

Merry Christmas!

Hope

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