Newbie update...

[ladyd]

just wanted to give an update:

our 8 year old son's tics have been bad since the beginning of january -- the last two weeks have included a head nod, shake, eye squints, and the usual add related issues.

we got a meeting with a behavioral pediatrician tomorrow -- got a last minute cancellation so we don't have to wait until april; tomorrow we also meet with a naturopath, so it should be interesting to compare the two perspectives.

until we get the official diagnosis, and what i assume will be juxtaposing recommendations, we've been using recommendations i found on this board and in sheila's book: no screens, and no gluten or dairy.

wow.

after 24 hours with no gluten, we saw a difference. within four days, the tics had been considerably reduced in frequency and severity, and, well, it's just been like our son has emerged from a brain fog. he did all of his homework yesterday without me hovering over him (that's a first), asked to do his next homework when he was done with one piece of it, and his handwriting was even noticeably improved (i didn't expect that -- he's gotten OT for years.)

but then...we ran out of gluten free options.

packing school lunch has been very difficult, and the chicken we've been sending him in with has come right back home, untouched (he's a very picky eater.) but all of his snacks have been gluten free, too. but, like i said, we ran out of gluten free pancake mix, and chicken nuggets, and, well, we didn't realize how much food we'd need to get through the week, and a trip to the preferred natural food store (am i allowed to name them in the forum?) wasn't possible when we realized, so, out of desperation last night, i made a gluten free pumpkin bread with a mix i found. but nick wouldn't eat it. so my husband gave him a bagel for breakfast. not a gluten free one. he immediately started ticcing. then he didn't eat the lunch we sent in (more pumpkin bread, with various gluten free snacks), so he bought school pizza. not gluten free. then he went on a playdate. they played some video games, he ate some cheese-its, and came home ticcing again. if i needed proof of the efficacy of the gluten free diet's effect on TS, I have certainly received the proof I needed. Now I realize that nothing will be the same again, because we have to be absolutely vigilant about everything our son eats (and continue to keep him away from screens. which is a little sad, because he so infrequently plays video games to begin with -- i don't want him to feel punished. but it's just not good for him.) Even though he has been tested for food allergies, and has been shown not to have any, it's clear that there is an intolerance there.

i hope we can get him back quickly to where he was yesterday, before he ingested the products with gluten in them. today i went to a local natural food store and stocked up to hold us over until we can get to the preferred food store this weekend (unfortunately, the closest one is a half hour drive, but it's worth it, since everything there seems so fresh, with many choices.)

just wanted to share my experience thus far.

[Ozimum]

Whoohoo! So pleased you're getting somewhere! The lifting of the brain fog is so good!

[ladyd]

ozimum -

did you have a similar experience? because there's a part of me that worries that this is all wishful thinking, that the GF diet is working, but I have seen proof, and then, tonight, just before he fell asleep, my son said to me, "Mom, I think my tics got worse today." so that sort of solidified the connection. thanks for the cheers!

[Ozimum]

Hi ladyd,

 

I think diet can help. My DS doesn't digest caseine (milk protein) but appears to be ok with gluten but we went GF and CF anyway to help gut healing (and slowly we've adopted a diet of low to no grains, no sugar, no potatoes...pretty much the paleo diet but with GFCF products like pasta 'cos he loves it. And he can tolerate soy milk.) We didn't see a rapid improvement, more slow but steady and the fog slowly lifted. (So GOOOOOD!) He's committed to the diet 'cos he feels better. (Yeehar!) So glad your son saw it too. Some kids respond to GFCF faster than others...I'll take any improvement!

 

I've been wondering if there was any dairy in the gluten stuff your son ate? - like dairy solids in the bagel? cheese on the pizza? dairy solids in salami? dairy solids in margarine? and the cheese-its. I'm thinking that gluten stays in the gut much longer than dairy, so he might be reacting to the dairy...just a thought. Good luck sorting it out.

[ladyd]

Hi again,

I'm not certain about the bagel, but yes, there was definitely dairy on the pizza. My mothers instinct tells mf that dairy is an issue for him; interesting because his diet has been about 90 percent gluten and 10 percent dairy. He's such a picky eater, so we've just been giving him the organic versions of the mostly unhealthy foods he eats. Pizza, bagels, balogna sandwiches, etc, but more. It's probably because there are sensory issues involved with the disorder. Are eggs a problem for your son? They have been our healthy go to, but the other day I noticed him ticcing when we put an omelette in front of him.

Thanks so much for your feedback.

Ps: I hope we don't miss our appointmects today: got almost a foot of snow overnight!

[mommyfor4]

Hi ladyd,

I think you are definately on the right track. Our son definately has a wheat intolerance and dairy, soy and artificial everything. Even members of the family who were sceptical couldn't deny the change once he came off wheat and later again off dairy/soy. We find some are more obvious (wheat) and others seem to have a cummulative effect and take longer to increase his tics. Keep it up! And congrats on an amazing first step and seeing results! Amazing how excited it makes us Our son is 9 1/2 and after 4 years we are still finding some food issues but removing the major offenders has done wonders for him, plus a good multi, Natural Calm and epsom baths. The diet does get easier and a bonus is the rest of the house starts to eat healthier as well.

 

Best wishes,

 

Megan

[ladyd]

Thanks again for the feedback. Just got back from a behavioral pediatrician, and I feel discouraged. I knew I would. She made it sound like diet changes are futile.. If anything, she said no screens is most effective. But nicks tics are so much worse after eating gluten and dairy yesterday. Glad I'm going to the naturopath at 530. Hoping she can give me more perspective. The ped recommended habit reversal training.

Edited January 27, 2011 by ladyd

[mommyfor4]

Thanks again for the feedback. Just got back from a behavioral pediatrician, and I feel discouraged. I knew I would. She made it sound like diet changes are futile.. If anything, she said no screens is most effective. But nicks tics are so much worse after eating gluten and dairy yesterday. Glad I'm going to the naturopath at 530. Hoping she can give me more perspective. The ped recommended habit reversal training.

 

...this is a case of trust yourself! Not all doctors can be experts in all areas, but you are an expert on your own children. If you see clear cause and effect, no behavioural pediatrician can beat that! We were told our son's tics were to get attention...funny as they are here 4 years later! Glad we walked away then! The truth is you may not ever get that kind of support from the usual routes people would take, thus the importance of a good naturopath or environmental physician etc. Don't let their closemindedness discourage you, just read post after post of parents saying there are alternatives that help. I wish you strength and hope your next appt. gives you the guidance and support you need.

 

Megan

[Cj60]

I'm guessing by now you've gotten some good news from the naturopath.

 

Don't be discouraged by the other one! Many drs. simply do not know about these things. They aren't trained for it and just go by what some book tells them (which in our case, with two highly experienced neurologists, was "meds or nothing"). I don't even want to recall the discouraging conversation we had with one; but I do know that feeling of "well, thanks for nothing at all!!!!" And I know what a difference the modified diet and supplements are making with our son. If I were to stop stop either, it would be a matter of days (if not less) before I'd see the adverse effects...

 

I think you're fortunate to have found the gluten trigger so quickly. I encourage you not to dismiss it, and keep vigilant for others.

 

Chris

[ladyd]

Hi everyone,

back from the naturopath and feeling much more hopeful. She thinks he has leaky gut (do they all say that? Feel like I always read about that dx), recommended we continue the gluten and dairy free diet, and put Nick on a vitamin, fish oil (which she feels will reduce, rather than increase, like some on this board have seen), also added a probiotic and a "warm belly" thing involving a Non electric heating pad on his belly at night. She also gave us a homeopathic treatment, and wants to get bloodwork done asap to check levels, especially carnitine. She feels quite confident this will improve slowly but surely. I do feel better. No one really has definitive answers and I have to accept that.

I really appreciate the feedback and support... Sometimes it feels like the world is tic free, except for my kid...

Edited January 28, 2011 by ladyd

[Ozimum]

Hi ladyd,

So glad your appointment with the naturopath went well... Leaky gut is not uncommon - but good doctors who get the gut are as rare as hen's teeth! ditto appropriate treatment! Leaky gut makes sense given your son started so well with a GFCF diet. My son is also being treated for leaky gut by a Biomed/DAN! doctor, hence the gut healing diet, which GFCF essentially is. (He's also on supplements and some other stuff to deal with strep and staph in his gut.) Our family doctor was hugely skeptical of the test results, so much so that I changed doctors, and we won't be going back to the Ped either! (grr!) In addition to my son's Biomed doc, I found a local doctor who is also homeopath trained and has a great reputation for treating IBS. He was happy to be part of our team and we now all see him as our family doctor. Unfortunately, there are leaky gut doubters out there like our ex GP. I am happy to report my son's doing really well right now. (He also has a PANDAS diagnosis and strep is our enemy. I'm just working on keeping him as healthy as I possibly can.)

 

It's good to get some blood work done. (Might also be worth asking for a stool test to get an idea of what's in his gut.) Also good to have a probiotic (- just check there's no dairy, some do.) Supplements are good - if he has any reactions, check the ingredients for colours etc. Sometimes it's necessary to change things around until you find the ones which work best.

 

But hey...Congratulations on positive steps taken and results! Yeah! Well done you! Whoohoo!

 

My edit is to say, probably clumsily but this is what I understand...something like 70% of the body's neurotransmitters are supposed to associated with the gut, also the body's immune system. If the gut isn't functioning properly, then there's going to be problems! The Biomed people talk about the brain-gut-immune connection...sorta important huh!

Edited January 28, 2011 by Ozimum

[ladyd]

Hi ozimum, thanks for sharing your experiences and knowledge. I really soak it all up.

So were back to the gluten free, and haven't fully started the supplements (wanted to wait for the wkend to watch it), and even tho the tics are in full swing--quite literally-- Nick already looks healthier. Brighter eyed, you know? Today was a huge day for him. He performed in a live wax museum today in school as Confucius... Gave a speech in full costume and everything.. No tics during the speech, but many before and after; the flashes from the camera didn't help, then they celebrated with donuts and cookies, which he ate. There are many obstacles to being gluten free. Then, tonight, we went to a books and blanket event with this guy whole tells folktales while painting the faces of kids he calls on stage... Well, out of the whole school, guess who got chosen? There he was on stage with four other kids, ticcing away, except when his face was being painted. And now tomorrow at 8 am, he wants to go to his basketball game, another place he tics in front of an audience, but he doesn't care. He's teaching me a lot about courage and not caring what others think, and he's living life to the fullest. It's sort of amazing, to put a positive spin on this thing. He said today was the best day of his life, which makes it one of the best days of mine. I can't let these tics cloud positive experiences.

What's your journey been like, if I may ask?

[Ozimum]

Hey great day! Enjoy!

 

We got hit with PANDAS...totally broke my heart seeing my son disappear into OCD, soul destroying anxiety, intrusive thoughts... I had been very concerned for a while about ongoing infections from which DS never seemed to recover properly, but our Ped didn't want to know... (Grr...)

 

You know that saying that everything happens for a reason?! - I'm so grateful that I then met a mum who talked about Biomed and that her kids with ADHD were doing so much better with supplements and diet. Her Biomed/DAN! doctor sounded like someone who might take my concerns seriously, so I asked for his name and we went from there. However, just as we were starting (we'd done some testing and had just got a diagnosis of leaky gut) DS got a strep infection and he had a full on PANDAS exacerbation - horrible! I just felt so out of control, unable to help him. Our now ex GP was no help; I actually think he thought I was crazy. (Crazy scared maybe! I was having panic attacks right along with my son!) Thankfully I was able get an appointment with our Biomed doc due to a cancellation (he's usually booked solid for months) and he prescribed antibiotics. I realise now that he'd probably had PANDAS for a while, but complicated by DS largely hiding the OCD, probably adding his anxiety.

 

Thanks to our Biomed doc, I can say that for now anyway...I have my son back...the happy one I used to know, the one who talks to me and jokes, who doesn't just shut himself in his cave, anxious, hating everything and everybody, obsessing over contamination and purity, etc. And he's healthy. The day he volunteered that he felt as if a fog was lifting (his words) was brilliant! The improvements have been steady, and often quite subtle; I'm thinking about 90-95% improvement so far. So I'm celebrating too. Whoohoo! Long may it last!

[Chemar]

I will never forget the feeling of relief and amazement when we saw the dramatic changes in my son by changing diet and adding supps. (both for the TS as well as the Crohn's)

 

so glad to read the other positive updates here as well !

[ladyd]

Thanks for sharing your stories and words of encouragement. Sounds like the pandas adds a new level of stress with the OCD issues thrown in. Did your son have tics, too?

Did your naturopath give you any hemeopathic remedies?