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[Guest Guest_MMAZZ]

Hi Allison;

 

If you are looking for a good multi with no atrifical stuff, Animal Parade is great. It is made from food not chemicals and it contains minerals and vitamins. The dosage is two a day and I break it up..1 in the AM the other late afternoon. They taste great and the only complaint that I have from my son is that he can only take two a day.

 

I hope all is well. Things appear to be ok here. We still have the eye blink thing, but it is a great improvement from just a few short months ago. My best to you and yours,

 

Marie

[ad_ccl]

Hi Everyone,

 

Things continue to go well here tic wise. It has been very encouraging for us to see our son clearly sick with a cold and fever and have only a very minimal increase in tics and no problems with emotions or behaviour. We have come a long way over the last 8 months. Amazing it has been that long since this all started. The other night I read through this whole thread and it was a good reminder of how far we have come and all that I have learned from the wonderful people who visit this forum. I realize the thread is getting quite long but do hope that it could be helpful for someone down the road to read our story and success without having to jump threads too much.

 

I do have a question...as I mentioned the other day my son is starting to rebel against the vitamins, we tried switching to liquid and he continues to rebel. It may have been timely that some threads were bumped and I came across other threads which talked about trying not to make our kids feel they are being punished. I am starting to feel like my son feels he is being punished. He is starting to eat so much better, and was wondering if anyone had any suggestions as to which vitamins are MOST important so that maybe I could edit the one's I am giving.

 

Currently he is on EFA (8 a day)

Zinc (2 a day)

Magnesium ( 2 a day)

B complex ( 1 a day)

Calcium liquid ( 2 a day)

Multivitamin (2 a day)

Vit C chewy bears ( 4 a day)

Probiotics ( 2 a day)

Antibiotic (1 a day)

 

He likes the current multi and Vit C and is fine with the liquid antibiotic and calcium.

 

He has been on the 8 EFA for about 3 months, so I wondered about reducing it to a lesser amount.

Marie, I did look for the Animal Parade multi but the place I shop had not heard of it, I will have to check if it is available in Canada.

 

Since he is eating much better I wonder if just a really good multi might be enough?? I feel it is worth trying as he is doing well right now and if things deteriorated I am sure he would be willing to revisit the vitamins.

 

Any suggestions would be appreciated.

[Dara]

Hi Everyone,

 

I've been out of the picture for awhile and have missed corresponding with you all. I'm so inconsisent. I go weeks where I write and read everyday and then weeks where I don't write at all. I do try to read often, but for me time is such an issue. During the day I'm so busy with both of my boys, that I hardly ever have time to get on the computer. I usually save the computer for the evening, but by that time I'm physically and mentally exhausted.

 

Update. Karl's tics have been very managable over the last couple of weeks. As most of you remember, February and March were horrible. The head nodding, coughing, nose scrunching, humming, and lip sucking were at their worst. I was in quite a state to say the least. They seemed to ease up a bit during these last couple of weeks. The head nodding and lip sucking have pretty much gone away (though I do notice them once in a while). The humming is still there, but it doesn't seem as bad as it was (maybe I'm just more used to it now). I've seen some eye rolling once in a while, but all in all we're pretty good. I think god knows I need a break from all of this once in awhile.

 

As all of you have mentioned, I think allergies definately have a direct correlation to Karl's tics. He currently takes sublingual drops for the inhalent allergies, but I wonder how much they help. My husband (also named Karl) has terrible allergies this time of year. We've also been dealing with colds on and off. Karl's mood was so bad yesterday, that I thought for sure he was coming down with something. My younger son Graham (3 1/2) has had a runny nose and a fever on and off since Sunday. Karl seemed to be in a better mood today, so maybe he was just tired and not adjusted to the time change.

 

As I stated in a previous post, we're heading to the Pfeiffer outreach clinic in Annapolis, MD May 10th (thanks to information that Claire sent me) and will be seeing a new DAN doctor on May 28th. Once we've done these final two things, I think I'll feel like we've covered all of our bases. I'll keep everyone posted on these two visits.

 

As for TV. I feel so proud to say that there is still NO TV watching in our house. I don't know how long we've gone without it? The boys still think all of our TV's are broken and they don't even ask for them. I was never was able to determine if the TV was a trigger for Karl's tics. Even so, I don't mind if they watch it at friends houses, it just won't be on in mine. Having no TV has been great for my boys. They play together all the time and now love to help me out in the kitchen.

 

After almost losing it a month ago (my mind that is), I started seeing a psychologist to help with my stress and anxiety. I feel so much better since I've been going (4 weeks). He's given me some great information on depression vs. anxiety and has given me some good tools to help deal with stress. Finally after dealing with our situation for a year, I've come to a conclusion: I have the MOST fantastic son (tics or no tics)! For so many months, I've been worrying, thinking, and watching his every move. I've spent more time looking in the rear view mirror than you can imagine. I've spent time over eating and time starving myself. I've spent time arguing with my husband and being resentful. Looking back over the last couple of months I've felt nothing but fear and despair. I thought at one point, I had a permanant frown on my face. I feel bad for the time I've lost with my son and family, but I know that I was only acting and feeling this way because I was scared and didn't know how to deal with our situation. Today, I feel so much more confident. I'm trying to stop feeling sorry for my son and instead look at all the great things he does and can do. Today, his pre-school class put on a puppet show. I had a lot of anxiety thinking that he was going to be up in front of all the parents and they'd notice his tics. Yes, he did get up in front of all the parents, in fact he had a small part where he read a portion of the script. Low and behold, he did great!!!! Yes he ticced a bit, but he didn't care and neither did I. I was so proud of him. I said to my husband tonight that I feel like we've accomplished so much over the last year and we're still on a journey. Of course I still get that 'sick' feeling when I see a new tic or when one of the old ones come back, but not to the degree that I had. Having all of you to talk to has been the most important part of my journey. Thank-you so much.

 

Hugs to all.

 

Dara

[kim]

This thread has been so helpful. I was so glad to hear from you Dara. It's nice to be in a place where you can see past the scarey thing and just enjoy your sons. I felt the same way about the tics, when ever my sons were having them and were in the spot light for something. I found as long as they choose to be there, they were fine. However my youngest is quite shy about some things and walking up to get a certificate for the honor roll, in a quite gym with parents present, seems to undo him and will bring on shoulder shrug tic. At first he tried to tell me his clothes just felt funny, too sloppy on that side which may be what he is feeling, still looks like a tic to me. I'm grateful he does'nt have learning difficulties, and I feel ashamed when I sit there hoping he does'nt tic. Also, Little League has started again, and last Sun night he started with a virus? achy back, neck, little sore throat etc. and he started to tic. Now, I feel pretty confident the virus brought it on but we will see in the days ahead. Anyway, parents watching little league games really scrutinize the kids out there, and I hope the head nod passes. It probably botheres me more than him though. It's a pretty gentle head nod at least, doesn't seem to hurt him. I bought him chocolate almond milk last night. He hated it, but he won't touch a nut to save his life. One of the few sources of protein he gets is from peanut butter though, so go figure. I will try goat's milk now (thanks Alison) Also, I bought a new EFA last night, flax and borage combo (thanks Cheri)) for oldest son. His mood was wonderful tonight. He took the first two today. I hope maybe some of the irritating hyper type actions will be better with this than the fish oil. Wishful thinking? For now I'll just say "positive thinking. Alison, my oldest gets so sick of me saying did you take your vit. at lunch today?

"That syrup has corn products", No you can only have Juicy Juice etc. I'm sure they do feel like they're being punished. I think that may even be part of the reason oldest has been so annoying, he's worse around me than his Dad (who will still stop for slurpees) so you know who the bad guy is. Not fair, but I do think-very slowly, we're making small steps in the right direction.

I have chosen to keep youngest son off of anything but his regular old multi vit. because I thought it would be better for testing. I go between getting him a better quality vitamin, removing things from his diet, putting him on the EFA's or doing all of the testing on both. Good days, I really don't feel it's necessary, on a bad day for either one, I wish we had every test in the world here NOW. If only I could just have a Dan Dr. right around the block, this would be alot easier. Also trying to figure out which tests for which son is the most important, can make my head pound. I guess you all have been through most of this, so thanks for starting over with a newbie.

 

Claire- I have been through some of your old posts and I can't tell you how useful your input has been, right down to what tests you had and from where. You can't imagine how much that has helped. Thanks again.

 

Oh, the lady at the Health Store said giving evening primrose with borage was'nt nescessary, as they had the same effect. Should I buy that seperatly anyway?

 

Kim

 

 

 

 

 

d

[Spring]

Hi Dora,

 

I'm glad that your son is getting better. This is a wonderful message. When I was reading your post, it's like seeing myself from the mirror. It's good that you also take care of yourself.

 

Thank you for the sharing!

 

Jean

[KJS]

Dara,

Congratulations! It sounds like you've emerged from a tunnel and it must be wonderful for you to be in sunshine again. People keep using the word "journey" to describe what we're all going through and it's such an apt description. I just went to a workshop yesterday on reducing stress in the family. The small crowd was all moms, and the main thing the speaker told us is to TAKE CARE OF OURSELVES! Right, like that's going to happen, each of us mumbled under our breath. But you're doing it and that's so great. I hope everything continues to go well for your whole family.

 

Karen

[Guest Guest_mmazz]

Dara:

 

I am so happy for you!!! I keep hearing that saying, you know the one..."if mom ain't happy nobody is" How true! You go girl!

 

Marie

[Claire]

Good for you for taking care of yourself Dara!

 

And it must be easier on everyone when he is doing better.

 

To me, my top things that theoretically I can control that help me through tough times are:

 

1) vitamins

2) workout

3) good nights sleep

4) feeling like I am at least taking steps for him on this journey vs feeling lost and powerless.

 

Claire

[ad_ccl]

Hi All,

 

Just wanted to send in a little update. No news is good news. Things are going fine here. Very minimal tics from his last illness which was a few weeks ago - really just a very minor nose twitch - not constant and nothing anyone would notice - I still find it endearing. Last illness took 4 weeks to fully recover from and it has been 2 weeks since he was sick and he is doing really well, and in fact during this illness his tics have been so minimal throughout that no one would notice them. Minimal unnoticeable tics and no behavior changes or difficulty with handwritting. What a change! He continues to eat so much better than I could have ever imagined he would. He is happy all of the time, and enjoying school and his friends and everything life has to offer him right now. He is thriving in every possible way.

I have decided to decrease the vitamins a little and see how it goes. We are going down to a multi, vitamin C and some fish oil twice a day and will stick with the cal/mag/zinc combo at bedtime. He still gets prophylactic antibiotics once a day and a probiotic once a day. He is also getting a powder to help his intestine. Fingers crossed that things continue to go well. Spring is here now and I am hoping all the flus, colds and fevers that have gone through my house over and over and over again all winter long are a thing of the past.

 

Marie and Dara, I am so happy to hear how well your kids are doing, I feel like we all started this journey around the same time so I love reading you posts. Marina - I hope things are going well with your kids as well. Claire, as always you will be missed tremendously now that you are busy back at work...thank goodness that all of your posts are available for others to read - you have provided this forum with an incredible amount of info and insight. I continue to be amazed at how much you know about so many different topics. I can only imagine how much money you have spent searching for answers for your son...worth every penny as it has changed his life course for the better. Hard to put a price tag on that.

 

Kim - you like all of us are a woman on a mission, and I am sure you will continue to find some success as we have all been so fortunate to find in many different ways.

 

Andy, I was amazed to hear how well your son is doing in general academically after you described some of his tics. When my son was at his worst in the Fall he had constant eye tics whenever he was off antibiotics (and watching regular tv). He was not reading at grade level and was being disruptive in class I think as a way to divert attention from the fact he was struggling. His eyes ticced literally every second at the worst. He was getting 4-5 time outs a day etc. Since January his reading has improved dramatically so he is at or above grade level, academically he is doing amazing and not a single time out since before Christmas. Your son sounds like an incredible kid - to be doing so well with his challenges. He is so lucky to have parents searching for answers to help him.

 

Good Luck to everyone.

[mmazz]

Hi Allison:

 

Congrats on the good things that have come your way...you sooo deserve them! Things here are calming down quite a bit and tics remain, noticable to me than to anyone else. To everyone else he is just a normal 6 year old. He is happy as a clam and so much a different child from December. I often think that if there were no tics involved, I probaly would have never altered anything and he would have been on a much differnt journey...you know moody, scared, distant. The outward sign changed so much. Today we are a family. Our prioities have changed and I am no longer Super Mom...I'm Goofy Mom who has a loving relationship with her kids inspite of the no-junkfood- rule. We limit TV and altered our diet that benefits us all (I do sneak out for a cheese burger now and again...but keep that between us and the rest of who reads us on the net). So for now things are calm and I hope we keep this pace for I don't think I have it in me to do another winter like the one past. You, Claire and Chemar have been a constant shoulder for me and for that I thank all of you...big hugs and know that you have done well for your children and for the children you will never meet that belong to the parents who read this forum. God Bless all of you!

 

Marie

[Guest Guest]

 

so good to read all this positive stuff!

[Chemar]

I seem to keep getting logged out today.......but that was me on that last "guest" post

[ad_ccl]

Marie.

 

So glad to hear how well your son is doing and how the family as a whole is doing. So many times your posts hit a chord with me, things you say really hit home for me. I remember a few weeks ago you saying we needed to put the rear view mirrors back in place...I knew exactly what you meant. I spent months watching and counting eye tics in the mirror. My son was always worse when driving in the car. I no longer watch. In your last post you said that if tics were not involved you would have not altered anything and you would have been on such a different journey. I AGREE. I asked a few (hundred) times early in my journey what the reason for this could be as I really believe things do happen for a reason - I could see nothing positive that could come from my son waking up one morning debilitated by complex motor and vocal tics. In the end, from all that we have learned and the changes we have made he too is such a different child than he was in August. We have had so many added benefits to changing his diet, limiting tv, supplementing, not just the reduction/elimination of tics - but other changes in his demeanor, behaviour, focus, all for the better, not that any of these things were serious problems, but we just did not realize what his full potential was. I remember talking to my ped. when we got the gluten results back, my son had already been off milk for a few weeks and was close to tic free and we were thrilled with how he was doing, I questioned if we really needed to go off gluten as well (partly because of all the work it would be and my worry about limiting his diet even more) my doctor said lets just do it and see, you think he is doing well now but maybe he will start doing even better. He was right. We also spend much more quality time together as a family - which is good for us all. My middle son also tested positive for many foods and has been off them for a month or so now, he has no tics but we have the fear of PANDAS for him - he is a very fussy eater but in recent weeks he is starting to eat a little better, and he seems to be starting to have a growth spurt, he has always been smaller - since being very sick as a baby. Today my mother noted how healthy he was looking. The baby did the test as well but results are not yet in. My husband and I also did the Elisa testing, I was fine with only a reaction to Pinto, Navy, Kidney and Green Beans, foods I never eat. My husband on the other hand reacted to pretty much everything. The Naturopath said she had never seen result quite like it. He did go gluten and dairy free a few months ago and his asthma symptoms have decreased and he had a chronic cough which is probably 90% improved. Interestingly Rice was quite high for him and we have been having a lot of rice in the form of Rices and Rice Pasta - Almonds were also high and he has been drinking almond milk. I am hoping by removing or limiting the other foods that the cough will go away 100%. So....all in all I think there have been many good things to come from this not just for my son with PANDAS but for us all. We eat much healthier foods and nothing processed. (lots of work for me - and I thought I was busy before I became the gluten free diary free egg free Martha - have to admit baking just isn't the same without Martha's butter filled recipes...I thought it was funny that you sneak out for cheeseburgers, I regularly gobble up chocolate bars in the car when no one is around - today a friend came over for a visit and brought me some baked goods from a bakery hidden in a paper bag for me to enjoy in a quite moment,and I have a loaf of bread hidden at the back of the freezer)

I really think that my son's immune system was weakened due to food allergies and when the strep hit him he ended up with PANDAS. We do have the genetic link to rhematic fever as well. I hope and pray that my other son's do not have to go through the same thing, although I will be much better able to handle it thanks to all that I have learned from this forum.

Thank you for your kind words Marie.

 

Marina, so good to hear your good news as well.

[Andy]

ad_ccl, thanks for the complement. I think that all of our kids must be incredible kids for dealing with what they have. Glad to have read your good news. We are still waiting for the yeast results for our son. It would be interesting to see if that will be another part of the solution. Currently my boy is in his third week of gasping for breath tic. Not having fun with that one.

[Guest Guest_Dara]

Hi Friends,

 

It's so good to read all of your posts. We've had a busy couple of weeks. On vacation for one of them and had company for the second. I just wanted to give a quick update. I just looked back at my daily log (I try to write down how Karl's doing everyday in a notebook). It's been four wonderful weeks. His tics are definately not gone but managable. The most notable one is the humming. It's not loud but constant. We've also seen some eye rolling, forward head nodding and facial movements, coughing, and throaty noises but they're not terrible. We've been sticking to the diet and supplements and have been making sure he gets 12 hours of sleep a night. It's the same routine that we've been doing since November 2004. Tonight though was interesting. I've been been feeling so good lately that I don't want the feeling to end. While laying down with Karl while putting him to bed, I was reading him a book and I noticed that he shook his head couple of times. Immediately I got the 'sick in the stomach' feeling and said to myself, 'Oh my god, a new tic - head shaking'. I'm still not over it and it happened two hours ago. Karl's had practically every tic imaginable during this last year so why not head shaking????? I hope to god it's not, but I can't help preparing myself for the worst. I'm such a pessimist. My husband is such an optimist. He always sees the good in everything and said to me, 'honey, we'll deal with it when it comes'.

 

We're still scheduled for our appointment at the Pfeiffer Outreach Clinic in Annapolis, MD, on May 10th. I just booked a room in the same hotel that the clinic is being held. Annapolis is about a 5 hour drive from our house here in Fair Haven, NJ, so we're planning to go down the night before. Although Karl has had many of the same tests done during the last year (blood, urine, etc.), we wanted them re-run and analyzed by the best place possible. After talking in length to Claire and doing some research, we felt Pfeiffer was the place to be. After the Pfeiffer Clinic on May 10th, we have an appointment with a DAN doctor (Dr. James Neubrander, Edison, NJ) on May 28th. We haven't yet been to a DAN doctor and also wanted to get a second opinion. Karl's currently seeing an Environmental MD in Denville, NJ. We've been happy with him for the most part, but felt we needed to do these next two appointments to feel satisfied that we've done everything we could do for our son within reason. Of course that doesn't mean that after the two appointments we'll give up, I just think, after these two appointments we'll have better test results and a better plan of action going forward.

 

Andy, since your post was the last one I read, it sticks in my mind the most. Dealing with an air gasping tic that is going into it's third week must be extremely difficult. I feel for you and almost feel embarassed to be complaining about a possible head shaking tic that might not even come to fruition. I don't care what tic it is, seeing our children suffer from these involuntary movements is heart breaking. As parents, we don't want our children to endure such a thing. I completely understand what you must be going through. During this last August, Karl has had a abdomen tic which was so terrible. When he ticced, he'd almost fall down (I had to carry him at one point) and in December he got a head tossing tic, where he would rub the side of his face on his shoulder left to right. He did this over and over again until he rubbed his skin raw under both of his ears. The only thing I think about when he gets a new tic is that I hope it doesn't last long. My thoughts are with you.

 

Take care all.

 

Hugs...

 

Dara