New from SC

[my2sons]

Hello. I have been reading from this Web site for some months now and I have to say this is such a wonderful tool - one that provides hope for conditions that so few doctors are willing to give you hope for. So I want to begin by saying "thank you" and "God bless you all and your families" to those who created and support it.

 

My ds (9) has always been a challenging kid. Since the age of 3 he has been excessively hyper, doesn't listen, does not respond to discipline the way other children do (can't tell you how many times I have been told I need to spank my child - even by teachers), used to pitch temper tantrums when he did not get his way - I mean the kicking, screaming, destructive, can't calm him down kind that would last 45 min or more (he does not do this anymore, although when you tell me he cannot do something he cries and won't "let it go") very impulsive, immature, talks constantly, and he has a learning disorder in the form of language comprehension/expression, and very annoying (and by this I mean he purposely annoys people), gets overexcited and acts ridiculously silly. He still says things that make no since, he can not tie his shoes, he is just now learning to tell time. He is very negative and morbid (uses terms like hate and death and dying daily), has low self esteem (although he is good a great many things and we show him unconditional love and support/encouragement and he has a very big loving family), he has sleep or night time issues. For whatever reason he has a lot of anxiety at bed time (his tics get bad then). And he has separation anxiety, although not so severe he will not go to school. He also has a history of panicking in unknown situations (and has had a panic attack) but he has gotten a lot better about staying calm and waiting to see what happens first.

 

When ds was about 5 he started with bad allergies. We put him on an OTC allergy med. When he turned 6 we had him tested and found he was allergic to grass, cats, dust mites, mold, trees, weeds. Doctor put him on singulair in addition to the OTC we were taking (I know, I know...). The meds helped for all but this little cough he had, mostly at bed time so he prescribed Nasoquart. that seemed to help and the little cough stopped shortly after the nasoquart and never returned. I look back now and wonder if this was his first tic. At age 6, he was also diagnosed as severely ADHD and put on Focalin XR 10 mg. He stayed on these meds until he was 9 (wish I had known then what I know now). These meds affected his mood making him grumpy and anxious and made him have difficulty falling asleep. It would take him hours to go to sleep. Within days of turning 9 (in late August - weed allergy season - this is also when he had the "little cough" that time), his tics started. He started with a mewling sound, kind of like a cat. it was soft an fairly in frequent. A few times he did a punching out with his arm like he was throwing something down on the ground, this also was infrequent and lasted a week or so. Then he did the chin jutting a few times, but again, infrequent and did not last long. Then his voice started changing when he would read at night. going up and down, changing in tone, etc. The tics stopped at x-mas and when school started back and we started his focalin again (we did not give it to him when he was not in school because he hated it), his tics exploded with loud yelling and full body tics. I stopped the focalin immediently, weened him from his allergy meds, and since then his tics have been primarily vocal- a loud yelping/yelling sound, a weird "chi" sound if he hears anyone shush anyone, an occasional laugh.

We are working with an environmental physician. So far he is on allergy injections (these have helped a lot with his allergies), a multivitamin, borage oil, magnesium citrate, P-5-P, probiotic, L-carnatine, Epsom salt baths, GFCF diet, no artificial dyes/flavors/preservatives, low sugar. We have seen about 50% improvement. I would like to see more. We just send off a hair sample to test for metals. And I just order the test kid from Great Plains Lab. to test for IgG food sensitivities. I have noticed that sometimes his tics increase after eating something. but I cannot narrow it down. We eat mostly whole foods and the occasional minimally processed organic snack (like GFCF popcorn, all natural pressed fruit, etc,) but mostly I make everything for them from scratch. Thinking about maybe trying Candida Clear. I personally am Gluten/Caesin sensitive and Cane sugar (self diagnosed for years now) so I am seriously wondering if his tics are not caused by food too. He does tic sometimes in his sleep, although not consistently. Maybe two of three tics a night so I was thinking it is not TS. Although he has a first cousin with mild tics (he is 11 and has throat clearing and chin jutting, head jerking since he was also just turned 9. what is it with the age 9? I will be terrified when my 7 yr old turns 9).

Anyway...that was a lot, I know but would appreciate any thoughts, suggestions, words of encouragement. Although ds tics are mild not as bad during day, they are still pretty bad at bed time.

Thanks,

Shannon

 

 

[logismum]

I'm no expert at all this as we are only 6 months into the investigating journey for my son but just wanted to say hi and it sounds like you are on the right path with looking at allegies, diet etc. We also do all this and are waiting on heavy metal testing results as well as others.

 

Glad there's been a 50% reduction for your son so far, My son had slow improvement over 5 months but his tics really lessened going into the 6th month. Gut issues take time i think to heal especially if Candida/leaky gut is an issue. Just wondering does he avoid corn? ( As i noticed you mentioned popcorn) Corn seems to be an issue for a lot of people.

 

Hopefully someone who has been on the journey longer will be able to help out

 

Take care

[logismum]

Also maybe come over to the TS section and re post there so more people can see your post

[my2sons]

Hi logismom. Thanks for the reply. No, we do not avoid corn yet. Hoping the IgG food testing will tell us what more we need to avoid. Hoping to get that test sent to the lab tomorrow. We have only been GFCF, all natural for about 6 weeks and he has had a few slip ups with grandparents and school so it has not been 100 %. I know that it needs to be 100% to truly know the affects. We did a yeast med for 10 days and that did seem to help. But he hss since been on an antibiotic for an ear/throat infection and he seems to have back slid some from that. That is why i am considering candida clear. I will post on the othe forum. Thanks!

[logismum]

No worries Also keep in mind that even though some foods etc may not show up on allergy/intolerance testing they still may be a tic trigger for your child. So keeping a bit of a food diary as well or notes on the day and if there was something different eaten can really help identify other things. Yes antibiotics will kill almost all of the good bacteria and unbalance the gut so an anti-fungul may be helpful.

 

Also have you read up on PANS/PANDAS to see if that may be a factor for you son?

[my2sons]

Yes, hsve read up on pans and pandas And may have him tested. His syptoms have never been as extreme (except when triggered by the focalin and those stopped as soon as we stopped the med) So do you think it could still be that? His tics are mainly vocal - mostly a yell or scream that varies in intensity. Very annoying when constant. He is not a very sick kid. Maybe a cold or two a year maybe one stomach bug a year that usually resolves in less than 12 hours. He di just have an ear infection but it was his first ever. He was sick a loy when he was small - had herp angina, fifths disease, rota virus, strep a few times- but since he was about 5 he has been pretty healthy.

[logismum]

I've read a lot about PANDAS but thats as far as my knowledge goes as my son doesn't really fit any of the symptoms/behaviours etc and i'm not sure if he has ever had strep before but our enviro dr is doing tests to rule it out.

 

If your son has had strep before i guess it's a possibility but best to post over in the PANDAS section as those ladies know there stuff

 

Good luck and let us know how you go