When you tihink all is fine....

[Chemar]

Hi Marina

good to hear from you again!

 

Efalex comes highly recommended provided your child tolerates fishoil.

 

I had not heard of the other prodict before but it certainly seems to have good stuff in it.

a few things things tho......

 

the calcium to magnesium ratio should be 2 cal to every 1 mag so if I were you I would definitely add say calcium citrate to that to bring the correct balance.

 

I also didnt see any vit B6 on the list , but see it in the ingredients?(pyridoxene) I feel B6 is an important part of the correct absorption and action of many of the other supps)

 

I noticed potassium aspartate....hmmmmm...I am personally a bit leery of anything in the aspartic acid group because of the problems with nutrasweet (aspartame) but perhaps that particular form of it is ok???

 

There is enough taurine in that complex for you not to need extra.

 

 

stay in touch.....I am so glad you are finding solutions. It is a steady progress but so worthwhile when you begin to be able to identify those triggers and find the things that help!

[Claire]

Hi Marina!

 

It is indeed great to hear from you. I am sooo looking forward to our own summer vacation, though it is far away. No homework!

 

Glad to know that you are learning more as each day passes.

 

That was terrific wisdom that the time is best spent working with an ally than trying to change others. The one teacher you mentioned sounded wonderful.

 

Good luck with your continuing efforts, and please do let us (and newcomers) know as we are all learning. If you ever read my posts when I started on this board--I only knew one thing coming here: his photosensitivity. I have learned so much in 15 months about the immune system--and am lucky to have a very good doctor who not only new a lot, but was open minded. I am not sure if you read, but my son saw a big screen movie recently (his biggest trigger) with no reaction at all, and his mercury is back in the normal range, and I am pretty sure they are related--maybe controlling the pyroluria also.

 

 

Chemar,

 

I always appreciate your expertise on supplements and of course your kindness and support to new posters. I am not sure if I ever mentioned that that iherbs site you showed me has benefitted our whole family. My husband had some energy issues and after scouring it and following the leads from there, I added 2 supplements to the plan our DAN doctor gave him (yes, he too had vitamin deficiencies), and voila--within 3 days he felt awesome. Also, I did research on cholesterol, and between the vitamins for that (no megadosing of niacin, don't like that) and the anti-fungals, his cholesterol is now just above normal, with an LDL/HDL ratio that is unbelievably good. (I can't say if it was the anti-fungal or the vitamins, but he is so pleased and totally believes me now!).

 

What is really exciting is to see so many posters are giving back what they learn. This site has become so much more active over the last year. Sheila Rogers told me the page views per month recently, and though I forget the number, they are pretty phenomenal now. It really does take a village because we don't have a well defined path.

 

Did you know that this Latitudes site was listed as a resource on the Jane Pauley PANDAS show web site?

 

Claire

[mmazz]

Thanks Marina;

 

I will try to do what I can with the TA instead of the teacher, she seems more willing to work with my child and me instead of ignoring it. I think the teacher thinks this is something he will out grow. I cannot sit by and wait. Dealing with it when he is 6 is much easier instead of waiting. Today is Sat. and although not much sleep because of his sleep over, he seems much less twitchy- noticable to me anyway. You know the mother microscope. So I guess time will tell if the path I put him on is the right one. Please keep in touch and thanks for posting.

 

Marie

[ad_ccl]

Marina,

 

Efalex is the fish oil we are on. I started with one pill a day and waited a few days then added another. We are currently up to 6 a day with the plan to get up to 8 - I think the ingredient doses on my bottle are a bit different then yours. I have seen no ill effects as a result, although when I did start them initially I started several pills all at once and he seemed to get worse so we stopped ( also had a viral infection at play I think) Anyway, it makes sense to me to start with low doses and build up as it is a lot to put into a little person all at once. It would make sense their bodies would go into some sort of shock. Good Luck. Thanks for posting that you like my updates, I sometimes wonder if I write too much and am boring people. But I know when I was searching for info, specific experiences were so important, particularly Ronna's as it was so similar to mine.

 

Marie,

 

So glad you are seeing less twitching. Look forward to more updates.

[Chemar]

Cheri,

 

Like it so hard to keep from crying these days, but your last line just made me cry for a much differnt reason.  I really do want to see the light and I remain hopeful.  Cheri, Claire and Alison you all seem to be such great mom's, and not to get off of the subject but I feel that I am trying to blame myself on a multitude of levels here.  The stress, school, immunizations,genetics, whatever, I feel that I am to blame.  Did anyone of experience this emotion? 

 

Marie

Dear Marie

 

first off.......here is a BIG COMMUNAL ((((HUG)))) from all of us.

 

I dont think there is a parent here who hasnt gone thru the emotions you are describing.

 

We have all felt guilty, hopeless, helpless, angry, frustrated etc etc etc.

I think that is just a sign that we are ok parents because WE CARE SO DEEPLY

 

Our physician once gave me a really good pep talk, and helped me realise that i was going thru emotions that were related to grief.

when our children manifest these symptoms and, especially in the case of those of us who then get a clear diagnosis, it almost feels like we have "lost" the child we had before, and we grieve for that.

 

and then we go thru those "what ifs" to do with our genetics, our health when becoming and during the pregnancy, the vaccines, the environment, the nutrition they had, the way we misunderstood their symptoms, etc etc etc etc etc

 

but, as we have all had to learn......the what ifs are unproductive and just drag us down, and looking back hampers us from going forward.

 

Just take it ONE DAY AT A TIME dear Marie. sometimes you will see progress and other days you will feel defeated, but as long as you just keep gaining knowledge and implementing it, the trial and error begins to have positive results and as you see the little improvements, your hope grows and you become more confident in the overall course.

 

soooo

 

dont feel alone in those emotions.

we sure understand them all too well.

 

more wise words someone once gave me "this too shall pass"

 

more (((hugs))) and blessings from us to you

[marina]

Dear Chemar

Your last post made me cry. I took a bit of that HUG.

One of the best things about this forum it that it gives you the freedom to express all the emotions, which we often cannot readily do with our own network of friends.

I personally feel devastated that another of my children faces a big battle.

I also feel drained that having had such a long journey helping my eldest son (with success but also enormous effort), here we go again.

You know that you MUST find answers, and cannot stop until you do. But sometimes you feel so TIRED.

My husband feels that I am now suffering depression. I think so too.

 

Thank you for your comments re the supplements.

I missed listing the 50mg of B6 per serve, and I will include extra Cal from today.

I take your comments re the potassium aspartate, and I am also concerned about the natural orange flavour, but will trial for a while.

He has been on the Muscleze for two days, and unfortunately his neck tic yesterday is the worst it has been for a few months. Hopefully a temporary healing crisis.

I will therefore wait before introducing Efalex.

 

His neck tic was so bad yesterday, that if it continues, I will have to take him to the osteopath before he starts his new school next Thursday. At least tempory relief at a very important time for him, but confusing in my effort to find other answers.

 

Marie, Matt also tries to hide the tics from me, because I'm sure he feels that he is under the Mum microscope. Yesterday I noticed that he would skip and dance past me to hide his neck tic.

I feel so sad that in trying to work things out, he just feel more pressure.

 

Definetly do whatever you can while your child is young.

With our eldest, so many teachers, friends etc would say he will grow out of it.

I would HATE to think of where he would be if we didn't take action at an early age.

 

Claire

I went back to read your post and am so pleased at your sons progress. Amazing and more food for thought.

I have not as yet been through the blood testing etc, but will start to investigate.

I think I was hoping that this would all be a tempory thing, especially after the success with the osteopath. Wiser people knew better, but as usual all the advice is given in such a supportive non-judgemental manner.

 

Marina

[mmazz]

Marina,

 

Good luck to you. I thank you for your support, just as I support all who come to this site. I am sure that your experience is just what your child needs and deserves. As for the depression, I feel that I am also burdened with that. I am now down to some below 100 pounds. I must have dropped more than 10-15 pounds within this last month and I have no clothes that even fit. I can't really eat anything. I am tired and all I want to do is sleep. But tonight I have about 10 inches of snow on the ground and three additional kids for another sleep over and the smiles, giggles and I love you Mom are keeping me from going under. My solice is that there are many of on this forum that are here to help and there words are so far exactly what I needed. I hope they are what you need to. So try to sleep and look past breifly for what you were able to do for your first child and know that you will do the same for this one.

 

Marie

[Claire]

Marina,

 

I am so sorry that you are feeling so sad--I never see it in your posts. Marie also, my gosh, that is a lot of weight to lose.

 

We must all take care of ourselves! I only have one child as you know and I have often wondered how I could possibly have been a decent mother to 2 children when taking care of this health issue, plus my workload (my income stream is definitely needed--my work is not optional). It seems like an impossible task yet look at these people on the board with multiple children! And Ronnas is expected a baby (#4) if you can believe it.

 

By the way, it is not 100% smooth sailing here. I have a middle schooler just like Marina and the food restrictions and supplements at times cause emotional upheavals where I feel so mean and/or so irresponsible, depending on whether I held my ground or cave in that day. But I have an undying faith that things will ultimately be much much more livable for him for the long-term.

 

Right now things are going fine. When I was at my lowest, prayer got me through. We have a thread on this--those of us who feel we got signs from God that it would be okay (my sign was an unexpected rainbow as I opened my eyes from prayer).

 

My mom always says: 'Pray for rain, then go dig the ditch. ' That is how I am living this.

 

In my case, I know that sleep and exercise are vital for me. So are my vitamin supplements--I think you all know I had the same tests as my son and my own immune system was worse than his! My yeast is still an issue--I can tell with an sugar I eat.

 

I hope you take your own mult-vite and eat okay and sleep okay, and don't hesitate to vent here. As Chemar says, we have all been through it.

 

Marina, if your son resists no screens, have you tried an LCD TV/computer monitor just to maybe minimize the impact? Do the stores let you try them for 30 days? Also, without a solid baseline and knowing the main trigger, it can be tough to assess the day by day things. It is just a shame that middle schoolers are so much harder to do all this with and meet their need for independence and freedom, they really are.

 

Marie,

 

How is your child doing with this long weekend? I thought your child was doing much better, are you still feeling worried, or are you more confident now that he is on the path to healing?

 

Claire

[marina]

Dear Marie & Claire

Thankyou for the support, I needed the boost and things don't seem as bad tonight.

Matt is slightly better today, and I'm going to take that to mean that things are maybe back on track.

Even if they aren't yet, I'll focus on the fact that at least we have the osteopath to give relief while we slowly work out the rest.

I have so much to be thankfull for, and yes I know we will come through this.

Marie your family will too.

 

Claire I agree with your view that sometimes you have to be firm and tough now to ultimately make life more livable latter.

Stef our eldest, at times made life quite hard, and hated the diet restrictions, etc .(We started when he was 8). Things were particularily difficult when he was 13 to 15, and we were worried that he would drop out of school with all the subsequent problems that go with it.

Last December he finished high school with good grades and is now going on to tertiary studies.

He and we were so proud of his effort and achievements, knowing that he had to put in soo much more effort than most.

HE GAVE US a huge compliment, saying that he admired us for all the support and effort, for finding out ways to help him, and for being strict, even though he knows that he can be quite difficult and the easier path would have been to just give up.

He made the observation, that many of the kids he knows who were similar to him had failed school and dropped out.

Hearing those heart felt words from my towering teenager certainly was a special moment.

 

Mind you having just turned 18 means that all is never smooth sailing. However I think that part of the issue is us parents finding it hard to let go of a child that you have had to be careful with each step of the way.

 

Many years ago I read a book by Stephen Covey, called The 7 Habits of highly effective people. One that I always remembered and would think of when times were tough was "Keep the end in mind". Sometimes it's one step forward, two back, but if we keep the end in mind we will get there. Time for a re-read.

 

At the moment though, I just feel spent.

Feeling down makes it hard to follow through consistenlty, which is of course what our children need. Usually I only feel like that for a day or so before I bounce back into action, but I am aware that a bit more is required now.

 

Funny that you mentioned that you had signs from God when you needed help.

 

I felt that someone was looking after me today, in the people I met and chain of events.

I went to the library, on the chance of borrowing Doris Rapp's book, "is that my Child. Although they had it on their list, it hadn't been taken out in years and it was classified as lost. They were happy to start a seach at other locations, but said it could take months.

Well 30 minutes latter, the librarian found me with a copy in her hand, after she had subsequently decided to do a though seach of all the shelves!

 

This afternoon I went to the chemist looking for Calcium citrate. Although there were many other versions of Calcium, Calcium citrate was out of stock, and I left to search tomorrow. Well 10 minutes latter, the chemist tapped me on the shoulder while I was in the bread shop next door, to say that she rang some of their other stores, and there was one bottle left only 5 minutes away! How lovely of her to go to such effort in ringing around and tracking me down.

 

By then I was starting to think maybe I've giving out "I'm desperate sign", but I'm confident that this wasn't the case.

 

Early this evening, at the supermarket I bumped into Stef's Grade 3 teacher who I would very rarely see outside school (yes the wonderful one). We chatted about the holidays in general and she told me how last year she had joined a gym nearby to combat some major stress and health issues, and how it has made such a difference to her life. Plus she looked great.

For months my husband has been urging me to join the very same gym and to start making it a priority to look after myself, as he sees that I've become very stressed and down.

 

Quite an extraordinary helping hand today.

 

Claire, no I haven't tried just the LCD screen. Partly me being ineffective at the moment, and lack of routine in holidays.

I would rather go another one week of no screens first.

 

Marie and all the mums, look after yourselves as well.

 

 

Marina

[mmazz]

These good words are needed this morning. Well this weekend proved that some two feet of snow, three additional kids in the home increases the excitement which would cause twitches in all. But his are less than they were last week. They are still there but still compared to when it first started it is less, so I guess we are on the right path. I understand that these twitches/tic seem to go into different muscle groups and wax and wain, etc. So I am extremely hesitant to celebrate any improvement. I guess I am extremely suspect to my own instincts. Slow and steady I keep telling myself- slow and steady.

 

 

Truth be told, my son is so much like me. I am very sensitive and hold sooo much in. If I cry you know that I am at my last straw. This week he has been extremely talkative, something I have not seen since last summer. He has been sharing his thoughts more, and now cries when his feelings are hurt. It is like the popping of a blister. So much emotion, happiness, anger and oh the make beleive stories. I would be enjoying this if there were no underlying issues- I just need to get passed my baggage. When you observe, you seem to notice everything and question "Is this normal?" "What does this mean?" So much so that I am driving myself nuts. I keep telling my husband that when this is under control he can visit me in the nut house. I think he's looking forward to that visit too!

 

Marina;

I am happy that your eldest appreciates everything you have done for him. You must be so proud on a multitude of levels. So feel comfort knowing that it is you that blazed a path for him to excel. My brother has a saying that he always uses "Dare to Believe". when things become impossible, we always Dare to Believe and with work determination and more work things happen. I keep this in my thoughts most of the time because giving up is just so easy. Parenting is the hardest thing I have ever done. It presents challenges that you would never dream of. So with three children under your belt and being seasoned with these things you can, will and are able to believe! In the meantine I will Dare to.

 

Marie

[ad_ccl]

Hi Marie,

 

I have not seen any recent posts from you. Hope things are going ok.

[mmazz]

Hi Alison,

 

Well things are going for the moment. We had a great few days last week, which included some TV (LCD of course) and everyone noticed great strides. But yesterday late afternoon proved to be bad. He started the eye roll thing which was gone for a while now. It seems that when you think your on track something else its you. Luke had a strep infection a long time ago, no signs of strep at all but his borther had it so we tested him to save me a trip later and he tested positive. When he started ticing in December he tested negative both with rapid and culture. Does that mean that he does not have the strep infection, or does that mean he does not have strep throat and that the strep infection can reside somewhere else.

THe vit/supps and juicing made him move from a size 6 to 7 in the past couple of weeks, and his apeptite is great. THe stress factor has improved and I received his nuerotransmitter test back and his dopamine levels are 270 where 175 is a normal high and his seratonin leves are at 130 where I beleive 150-175 are normal. Should I start amino acids? His tongue is still white even with the acidopholis, is there something else I can do to help him? I know I have a long way to go, I am at 6 weeks dealing with this and so many have dealt with this longer. I just wish I had the crystal ball to see if I am on the right path.

 

Marie

[Claire]

Hi Marie,

 

A white tongue often means yeast, I think you implied this is what you think, yes? Acidophilis alone is usually not enough, or are you doing Threelac, which is a different form?. If not, Great Plains and Great Smokey's can try to run a culture on the yeast to see which antifungal works best, e.g. nystatin, capryllic acid (unfortunately yeast clumps and they don't always succeed in getting a culture). Also, bifidis (spelling) is generally good, our probiotic has multiple ones.

 

Does he still have a sore throat? December and January are big strep season--I always wonder about sudden outbreaks. If they don't do a good swab, the strep culture can show negative. I never believe the office test--only 85% accurate. Given his history and the time of year, I would do another strep test, as awful as they are.

 

Did he eat anything different yesterday? Have you done food testing? Tough to get rid of yeast when foods he is sensitive to inflame the stomach lining.

 

Others here (Ronna's, Heather) had commented that their child got less tolerant to TV again when other issues were going on, so you might skip TV for a few days to see whether it gets rid of the eye rolling tic. (Or hadn't he had watched it anyway for a few days?) I personally looked at my son's sensitivity to TV as a measure of other things.

 

Good luck, hang in there.

 

Claire

[mmazz]

I will be ordering threelac today. I read about it and I am suspect to it but since I know he was a sugar kid for sooo long and the white tongue is a sign I need to do something. Yesterday was a carb day. I know carbs bother him but he ate 2 1/2 large pancakes made from whole or buck wheat, 1 egg,a large bagel with cream cheese alternative made from rice, and a salami sandwhich on wheat, plus one 8 oz bottle of water and 8 oz of fresh carrot juice. THis was all between 8-12:30. So you see the appetite is hugh! I've been reading about PANDAS and the symptoms he is showing are pointing to that as well. Can you have a strep infection without it showing up in the culture? I read about blood tests so is it possible for the body to have the infection and not show in the throat area?

 

Marie

[Claire]

Marie,

 

Once my son had a sore throat and a sudden onset of symptoms (fears) and the strep throat culture was negative. Our ENT (ear nose throat) doctor said strep isn't the only bacterial infection of the tonsils and treated with antibiotics anyway. The symptoms went away completely with the antibiotics--coinciding with when his throat felt better (and he had NO idea of the correlation since I never told him, so no placebo effect).

 

So though I hate the idea that antibiotics since they make yeast worse, if he ever has a sudden onset of symptoms (fears) again, and a sore throat, I would do antibiotics even if the culture were negative.

 

As to studies on this, a while back, I read one buried somewhere in this list of studies (which I think Ronnas first posted on Braintalk), that said that other sore throats that don't show strep were attributed to sudden onset of tics/OCD.

 

Certainly PITANDS is being investigated--and that is just general upper respiratory infections causing OCD/tics.

 

http://www.neurotransmitter.net/pandas.html

 

Now, your son doesn't have a sore throat, so it is different and difficult to comment on.

 

Claire