support needed again

[mmazz]

Hi Guys,

 

It has been a while since I was on and posted. Mostly because we were doing so well. But this week was/is a hard one. I don't know if it is because I am coming upon a one year anniversary of tics and I am looking harder for tics or that he is ticcing more. Anyway, we are still juicing and supplementing and we were actually tic free for quite some time. School and a new schedule proved not to trigger anything. I know there are two loose front teeth and a molar popping up, so I think that might be the cause for some things. But these new tics are strange. Walking backwards this weekend was a biggie. Not all day, just a few times while shopping but it was a must do. And shuffling feet. Is that ticcing? Or is it part of being 6? Either way I ignored it and it is seeming to subside. Any thoughts?

Oh, I am glad to hear of the great progress from many of you and Claire I did read your post about not posting for a while. Be sure to tell your son that I think he is a hero. If it was not for him and you I just don't know here my son and I would be. So he needs to know just how wonderful he is.

 

God Bless and Be Well,

 

Marie

[ad_ccl]

Hi Marie,

 

This is cosmic - again we are going through something similar. I too have not posted much although read daily - and reply when I can and it seems it might help - my son has also been doing amazing and I have been meaning to put aside some time to update on my original thread to give PANDAS moms some hope - he has been tic free for quite some time, doing amazing in school, no behaviour concerns and the most minor tics that do come are clearly related to an illness and I usually have him stay home for a half day and they go away completely. The minor tics he has had over the last few months are one's no one else would notice they are so subtle, no vocal or complex tics - just minor eye squints, maybe a couple a day and they come every couple of weeks.

He is currently only on a multi, B combo and L-Taurine, and probiotic as he is still on antibiotics. I was planning on stopping the b complex and l-taurine once the one's I have run out. He is eating wheat a couple of times a week - in the form of a bun or piece of bread - I still bake a lot and he is generally gluten free and always milk free - until this Sunday at a birthday party when I let him have whatever he wanted - so he had 2 big pieces of pizza and some cake. The other thing is last Friday/Saturday I was quite sick with a flu - in bed sick. So....I have two working theories on the current increase of tics ( the tics consist of a pretty constant hum, throat clearing, this evening it was once a second - and he has had no vocal tics for months - and nothing like this for ages- he is also doing some eye squint with more of his face involved, so not subtle.) Anyway, back to my working theories - his body is fighting the illness that I had - or his body is now having the reaction to the food he ate on Sunday. Either way I am amazingly ok with it all - I know it will pass, it is not a big deal, although he is noticing it and tonight asked when it would stop - that part is hard, but I just told him not to worry it would all pass soon - and so he will stay home tomorrow and have a quiet day so his body can rest.

So....since your son has been doing so well I would guess that this is being triggered by something and it will pass as well, I have been reading Sheila's book (fun to recognize some familiar quotes etc - including one of my own) and one point that stuck with me this evening is that tics are a symptom of something that is not right in the body - I already knew this but liked the way it was described in one of the case history's. The tics are sending a message that something is out of wack. The odd squints my son has had over the last few months often coincide with illness or him complaining of his legs being really sore, so I am starting to think growth spurts could be a trigger - to these very subtle tics - he is growing like a weed.

 

Not sure I have been of any support - but could not help reply - as your timing was incredible. Maybe again it is a change of season thing, we last had this happen in the spring - where it seemed so many kids tics were increasing. It has been pouring rain here for days so I also keep in the back of my head the mold issues. I will have to start keeping a log again - I have not felt the need to for so long as he has been doing so well.

 

Claire - it was so nice to read your post and hear how well your son is doing - you have helped so many and will continue to do so with what you have contributed to Sheila's book.

[mmazz]

Hi Allsion,

 

Gret to hear from you. Last night I took out the Clariton because he was coughing a whole bunch. Not a tic cough, the real deal. About 1/2 an hour later he finally went to sleep. I know he is fighting off some sort of cold and last week we took him to a hockey game and he ate ice cream, pop corn, crackers, shrimp, you name it he ate it. Funny enough by the time he got in the car he complained that his head and stomache hurt. I guess you can say he was a party animal. I knew that would increase the tics but I was not ready for the walking backward stuff. He also made a new friend on Sunday and oddly enough that child had tics. Add that to the one friend in school that tics and why should I be surprised. So I guess looking back his diet was altered greatly, being around tics promotes it and fighting off a cold. I feel better. Thanks for the reality check.

I'm sorry to hear that you had the flu. It seems that even though we have not got hit with winter as of yet, the colds and flu season is stil ever so present. I hope all remains well and we will have to get use to the waxing and waining. I did not pick up Sheila's book yet, but I intend on buying it. Great to hear that you were quoted. You should feel great to know that you are no longer a newbie but one who has helped people here on this board. In particular....me.

 

God Bless and Be Well,

 

Marie

[Jeff]

A thought that came to my mind, because of the time of year, was whether the children are ticcing because of eating Halloween candy...?

I know mine are, even though we limit it..

Jeff

[Chemar]

Hi Marie and Allison

 

great to hear from you both and sure glad things have remained relatively improved, inspite of the little flare ups.

 

Honestly, even tho my son is so very stabilised, it is already totally predictable that eating "junk food" or stress or illness will set off some tics/OCD

 

I have just brought him back from some testing as he has had strange pains. Turns out candida has flared up again, as well as Epstein Barr virus, and sure enough, his tics and OCD have been a bit elevated lately too, tho thankfully nowhere near what we used to see. The physician today put him on Aspergillus niger for the candida, which is new for us, along with a couple of other homeopathic antiviral/antifungal mixtures, and immunoboosters

 

Once again I thank God for Integrative physicians who know what to look for and how to treat it effectively without drugs!

 

Hope all returns to stable levels for your kids soon

Blessings

 

ps Jeff you are so on the mark with the candy stuff. I have heard from so many parents saying just that! I think with our kids being on such healthy diets overall, that they are almost hypersensitive to the junk food and so just the teeniest bit sets off a BIG reaction. Turns out my son has been sneaking sodas at school, which could well account for the unwelcome candida visitors and so once again he realises that it just aint worth it!!

[ad_ccl]

Hi Cheri, Jeff and Marie,

 

I had thought of Halloween as a possible trigger, but had somewhat dismissed it probably prematurely. We had initially planned on buying all of his chocolate candy from him and then he could buy a toy with the money - he was game with the plan until he had all the chocolate in front of him and the deal was off! We then allowed him to have one small chocolate bar a day after school and one candy (jelly beans etc, gum) After a few days with no ill effects he wanted to know if we could still do the deal as he had a toy in mind - and I guess decided it was worth giving up the chocolate. So, he ate no more chocolate and got his toy ( I enjoyed all his chocolates) - I had dismissed any concerns around just the elevated sugar and colours etc from the non milk candy - until reading your posts. Again - sometimes the obvious is not so obvious until someone points it out.

 

Cheri - I hope your son stabilizes soon - his story was very moving in the book - I had not known as many details until reading the book - what an incredible journey you have been on. I am so grateful for all the you are willing to share and all the time you put into supporting others.

 

Marie - Hope your son is already on the mend, I had considered clariton myself today but decided to hold off - he says his throat feels a but funny. He has a humm still today - but it was not as constant - it did get worse as bed time approached which is common ( worse as in more like yesterday). Eye Squints were better today than yesterday - so all in all I think he has improved - I am going to try and coax him to stay home again tomorrow. He loves school and recess so much it is hard so we may do a half day. Through all of this his hand writing has been perfectly fine and just a slight amount of emotional lability.

 

I have to keep reminding me how much better he is now than when we first started but it is hard to hit a bump in the road.

[mmazz]

Hi All;

 

I am in a tial spin that is so hard to get out of. Yes, the holiday candy was the straw the broke the camels back. It opened the door for both me and him. Because there was little to no reaction at first, I made that peak through a 1/2 way open door and allowed him more than I shoud. Today was "sniff day" so much so that I did run for the Clariton and the chamomile tea. DId that work? Yes it did. It took the edge off, but did not make them disappear, just made them mild. For me the fear is back and the anxiety I once thought was something I could handle is now the monkey on my back. I"m sorry to vent like this but things were going so well. I hope to be back there again soon. So here is to positive thinking.

 

Marie

[mommaonamission]

Hi ad_ccl. It sounds like you might be just the person to talk to. In a nutshell, my 12 year old son who has had mild tics since he was 5, turned full blown a month ago after a strep virus. Vocal tics are loud and frequent. So frequent, people are staring at him in public, and it is hurting his throat, and giving him headaches. I've had to leave his presence several times to just go and cry.

 

I have looked into Pandas a little and am trying to get him on a probiotics routine. How old is your son? Also, how soon after he got strep did any severe tics begin or end. It's been one month since the strep and yesterday was one of his worst days. I know every child is different, but how long did his bad tics last after he got sick? I can handle mild to moderate tics and we have learned to adjust. But this constant shouting is hurting him, and he thinks he is crazy. We still are waiting for our appointment with the Neuro on Dec 8th. Any suggestions in the mean time. Thank you, and I hope you son is doing well. Children don't deserve this.

 

Hi Marie,

 

This is cosmic - again we are going through something similar. I too have not posted much although read daily - and reply when I can and it seems it might help - my son has also been doing amazing and I have been meaning to put aside some time to update on my original thread to give PANDAS moms some hope - he has been tic free for quite some time, doing amazing in school, no behaviour concerns and the most minor tics that do come are clearly related to an illness and I usually have him stay home for a half day and they go away completely. The minor tics he has had over the last few months are one's no one else would notice they are so subtle, no vocal or complex tics - just minor eye squints, maybe a couple a day and they come every couple of weeks.

He is currently only on a multi, B combo and L-Taurine, and probiotic as he is still on antibiotics. I was planning on stopping the b complex and l-taurine once the one's I have run out. He is eating wheat a couple of times a week - in the form of a bun or piece of bread - I still bake a lot and he is generally gluten free and always milk free - until this Sunday at a birthday party when I let him have whatever he wanted - so he had 2 big pieces of pizza and some cake. The other thing is last Friday/Saturday I was quite sick with a flu - in bed sick. So....I have two working theories on the current increase of tics ( the tics consist of a pretty constant hum, throat clearing, this evening it was once a second - and he has had no vocal tics for months - and nothing like this for ages- he is also doing some eye squint with more of his face involved, so not subtle.) Anyway, back to my working theories - his body is fighting the illness that I had - or his body is now having the reaction to the food he ate on Sunday. Either way I am amazingly ok with it all - I know it will pass, it is not a big deal, although he is noticing it and tonight asked when it would stop - that part is hard, but I just told him not to worry it would all pass soon - and so he will stay home tomorrow and have a quiet day so his body can rest.

So....since your son has been doing so well I would guess that this is being triggered by something and it will pass as well, I have been reading Sheila's book (fun to recognize some familiar quotes etc - including one of my own) and one point that stuck with me this evening is that tics are a symptom of something that is not right in the body - I already knew this but liked the way it was described in one of the case history's. The tics are sending a message that something is out of wack. The odd squints my son has had over the last few months often coincide with illness or him complaining of his legs being really sore, so I am starting to think growth spurts could be a trigger - to these very subtle tics - he is growing like a weed.

 

Not sure I have been of any support - but could not help reply - as your timing was incredible. Maybe again it is a change of season thing, we last had this happen in the spring - where it seemed so many kids tics were increasing. It has been pouring rain here for days so I also keep in the back of my head the mold issues. I will have to start keeping a log again - I have not felt the need to for so long as he has been doing so well.

 

Claire - it was so nice to read your post and hear how well your son is doing - you have helped so many and will continue to do so with what you have contributed to Sheila's book.

[mmazz]

Hi Mommaonamission:

 

I am so sorry to hear about your son. It just sent chills down my spine. You are right Allison is the go to girl for Pandas, but I do know that there is light at the end of the Pandas tunnel. Are you supplementing to increase his auto-immune system? Have you also detoxed him? I also read here that growth spurts and pueberty can cause a spike in tics. I know the crying feeling. I had to time some time for myself today because these tics can drive my crazy. Watching them tic is really so very hard. Take a deep breath and post, post, post. Sometimes in posting and answering others questions you just might reveal some triggers that you were not noticing before. It also helps to get these feeling out through the keyboard. In any event take care of yourself, so you can take him.

 

Be Well,

 

Marie

[mommaonamission]

Thank you very much. I am going to post to Allison. Yes, I am experimenting with supplements. Not much change so far, but we are just starting. All of the info I have been reading is so helpful, but so overwhelming. It seems like the parents that have their child figured out as far as which supplements to give, took a long time to get there. I am learning patience. Thanks again!

 

 

 

Hi Mommaonamission:

 

I am so sorry to hear about your son. It just sent chills down my spine. You are right Allison is the go to girl for Pandas, but I do know that there is light at the end of the Pandas tunnel. Are you supplementing to increase his auto-immune system? Have you also detoxed him? I also read here that growth spurts and pueberty can cause a spike in tics. I know the crying feeling. I had to time some time for myself today because these tics can drive my crazy. Watching them tic is really so very hard. Take a deep breath and post, post, post. Sometimes in posting and answering others questions you just might reveal some triggers that you were not noticing before. It also helps to get these feeling out through the keyboard. In any event take care of yourself, so you can take him.

 

Be Well,

 

Marie

[mmazz]

I so agree about the overwhelming feeling. I was so afraid to supplement that I started juicing. We are everyday juicers and I have seen such great things from natural supplementation. All of the issues that I read go hand in hand with tics have disapeared. And issues that were from vitamin defficiencies are gone. I never knew just unhealthy his really was. But yes minor tics remain. This past week is hard for me because we seem to be falling back into ticcing and any set back, no matter how minor is just heart breaking. This is my first experience with the sniffing tic and it is driving me nuts. I am just as afraid right now as I was when this first started. The unknown is the worst.

As for now, I would lay off of the screens, TV, movies, etc it seems to promote tics with flickering. Chamomile teas and relaxing epson salt baths are great too. Supplementation is key and Chemar did post about that. I would follow as much as her advise as possible. She is truely educated in this field and your child will benefit. If you look up Claires' postings, she is also very knowledgable. Remember that curing health issues with supplementation is a long term thing and you should not be discouraged if you do not notice improvement immediately. It takes about three months to see improvements. The key is not to over do it when starting. Many, like me, started with a lot of supllements and it was hard to tell which caused a bad reaction, i.e., more tics. So start with the basics and add slowly. The gift of time is best. Now is the time to truely show more love for your child and less fear. They pick up on the fear stuff so much. The no big deal thing is so hard to pass off when all you can do is worry. But it is very important. So I wish you and your son the best and hope that this passes quickly.

 

Be Well

 

Marie

[ad_ccl]

Sarah - my son is now 7 1/2 - we do not know exactly when his strep occurred prior to the explosion of tics - as he did not complain about a sore throat other than in passing about a week before. He tested positive for it and had high Anti Titers ( blood work) The blood work is the real indicator of the strep having been present. Sometime throat cultures do not show it which is why it is important to do the blood work.

 

Your son is at such a difficult age to be going through this - Marie and I started here around the same time and I remember e-mailing her about how lucky it was our kids were 6 - they seemed oblivious to it all as did their friends.

 

There is a light at the end of the tunnel, and a silver lining - I would never have believed it myself - but those mild tics I learned to get used to as you say you are as well, have now all gone ( most of the time) there are no more chronic coughs etc - and had we not had the PANDAS experience he would still be coughing and drinking lots of milk.

 

Also wanted to point out the movie trigger - Claire advocated that parents remove all screens for 7-10 days to see if it helped - for most kids it did - for a 12 year old that may be hard - no computer screens, no game boy stuff - but considering how he hates the tics he might be game to try - we have our son money for every day he did not watch tv -

Marie is right about not rushing with supplements, I learned the hard way - go slow...I know it is easier said than done...

 

Marie - hang in there - things will get better - my son is doing better - I did keep him home yesterday all day and tics today were more minimal, less frequent and more subtle - he did go to hockey tonight ( probably a mistake) It was a late night and there was a lot of throat clearing going off to bed - but I would think a good night sleep with get him back on track.

[quan_daniel]

Hi all,

my son was stopped ticcing for 4 months..then all of sudden he had the flu..

3 days to get over..went back to school..

got the fever again..then after..his tics..

Ah!!!

his neck is hurting so much from turning...tics!!

don't know what to do..

it is the dam flu virus..

he did not even eat candies..I traded every canides each for 25 cents..he is a good boy..

I am so sad..and scared...

[mmazz]

Hey Daniel;

 

I share your feelings. But just as Allison predicted we are back on track and I am sure you will be soon too. Although there are minor ticcing, it is something we can live with. My little one is congested from a little cold, but I looked in his mouth last night and it revealed 2 top molars 1/2 way in. With the 2 front teeth so loose, the ear popping feeling and the sniffing have to be interelated somehow. You know your son has a virus and it does promote tics. Our children will always have this sensitivity. My older son with asthma will always have to use his asthma medicine for colds because colds always triggers asthma. Just like illness will trigger tics in our children. So hang in there and things will subside. But congrats on the 4 months tic free that is great news and you should be optimistic that your son will be tic free again soon.

 

 

Be Well,

 

Marie

[mommaonamission]

Thanks for all the support. It was a rough weekend, but we took some time tonight to recooperate. I know things will get better, and I wish for all of you the same.

 

Hey Daniel;

 

I share your feelings. But just as Allison predicted we are back on track and I am sure you will be soon too. Although there are minor ticcing, it is something we can live with. My little one is congested from a little cold, but I looked in his mouth last night and it revealed 2 top molars 1/2 way in. With the 2 front teeth so loose, the ear popping feeling and the sniffing have to be interelated somehow. You know your son has a virus and it does promote tics. Our children will always have this sensitivity. My older son with asthma will always have to use his asthma medicine for colds because colds always triggers asthma. Just like illness will trigger tics in our children. So hang in there and things will subside. But congrats on the 4 months tic free that is great news and you should be optimistic that your son will be tic free again soon.

 

 

Be Well,

 

Marie