Doctor Appointment Shocker

[DingoGirl]

Susie, I am so, so glad to hear from you about this! I had no idea that you were diagnosed bipolar. For years now, I have been very skeptical about whether ADD and ADHD even exist (I hesitate to ever say so- I would absolutely hate to offend someone or hurt anyone's feelings) but I have believed that it was some kind of dietary or environmental problem(s).

SArah -

I could literally write a book about the very sad life I had. I am just SO thankful to have emerged from those dark DECADES.....but as mentioned earlier, if I"d only known sooner.....oh how life COULD have been.

I was sad, extremely sad and anxious and even depressed - from about age four or five. I was an outstanding reader and writer so did well in school (math was trouble). I actually started thinking that I should die around age seven or eight, and wished desperately for that much of the time. When puberty hit, I desperately wanted to kill myself....things got MUCH worse....I remember just crying constantly, adn asking friends if they felt this way or that...and they didn't.

Somehow I was smart enough and observant enough to SEEM normal....I worked on this for most of my life, watching how others interacted so I would know what to do....but taht didn't always work as I couldn't control my behavior so much of the time. There were incidents that I wish hadn't happened - - a party at my late father's firm, hundreds of people, I hadn't slept in three entire days and talked about a thousand miles an hour....wild-eyed and non-stop....and then later burst into tears, in front of people......exhausted from emotion and mania.

I DO think I was bipolar - I have more than 18 speeding tickets (lost count ) and have been as many as FIVE days - and that is FIVE ENTIRE DAYS - without one minute of sleep (I was 29 and came very close to taking my life). My bipolar disease was so debilitating that my doctor convinced me to go on PERMANENT disability about six years ago......imagine days and weeks without sleeping, really (I had a decade of sleeping - I kid you not - about 20 hours a week OR LESS - sometimes 4 to 6 hours a week)....then the crash, adn weeks on the couch, your only goals to eat, bathe, and stay alive.

I could go on and on with horror stories....jobs/relationships/friends lost due to this disorder....I never married, or had children, two of my three fondest dreams (great career being the third). I ruined both relationshps with the two deepest loves of my life, and dated lots of terribly unsuitable men, skewed with the fogged vision and twisted thinking of a gluten-shrouded brain.

I had decades of thinking with a poisoned brain, it's very hard to describe but my brain fixated on things until I would sometimes physically shake from teh agony of it.....

the GOOD parts of mania? I am working on my third foreign language (I begged my parents to let me study french at age 14 adn was pretty much fluent within two years), I trained myself to excel in many areas, staying awake sometimes until 5 or 6 in the morning honing my various crafts.....I excelled in technical rock climbing (no fear) and other unconventional things...but none of that was worth the years of dark and tortured thinking.

things SO DRAMATICALLY turned around when I removed gluten, and processed foods, from my diet that the change is beyond astonishing.......and people who know me well really listen when I talk about gluten removal and mental health. I try not to lament all the years lost.......because I have now and I have THE FUTURE.

My own brother was bipolar and took his life at age 30......so very sad. He did refuse to stay on meds and was addicted to cocaine/alcohol, self-medicating for his pain. The demons got him. It will be 20 years this Christmas.

Sarah - your issues definitely sound gluten-related.....I also take Effexor, but have tapered to a very low maintenance dose. IF I were you I'd stay on it for a while longer. Think about tapering down in a few months or a year...

I hope this helps! My life has been a horror story and I am lucky to have survived it. But I will tell you - - there is only ONE THING that has kept me from taking my life - - and that was faith in God - - I wasn't sure where I"d GO afterwards.....and knew it wasn't my place to extinguish my own soul. But, like Moses, I was stuck in a desert for FORTY YEARS.....

Your kids are SO fortunate to have you, and your knowledge. Keep fighting, I think they'll be fine. Medications are always available, in the future, should they need them....but that is, in my opinion, a VERY LAST resort to reserve for a much older age.

[Ridgewalker]

Susie,

I'm sorry it took awhile for me to reply! It's extremely generous of you to share this ((hugs!!)) I needed a day or two to let it "brew" in my head, I guess. I cried a bit, reading your post. Partly because it is a very sad story... I'm so sorry about your brother. And partly because I'm just worried about Ez. I've been exceedingly emotional lately. But I am so, so happy for you, that you've been doing so much better since going gluten-free!

Every day, I'm looking for signs of improvement in Ezra, and I have to keep reminding myself-- It's only been 3 days, it's only been 4 days! Somehow it feels like it's been a month He's been home from school Monday and Tuesday-- They called me to come get him Monday morning, because he was throwing up, mostly clear mucous, again. So although I got the gluten-free ball rolling at school Monday morning when I dropped him off, we haven't gotten to put it into practice yet. (He's been gluten-free at home, obviously.)

It amazes me the way he's developing GI symptoms exactly like his brother had before going gluten-free! The multiple small poopy accidents daily, the not wanting to go to the bathroom because it hurts. For the past week or so, at least once a day, I've been taking him in the bathroom and making him sit on the toilet (no easy feat) and then if I can get him to calm down, I'll gently push his knees up and back a little to help him. This has been the only way he'll poop in the toilet at all these days.

Between that, and the on and off throwing up, the volatile temper, and he's never been a good sleeper (he didn't even sleep through the night till he was a year and a half, and still doesn't a third of the time) we're both pretty worn around the edges.

I really need to start choosing battles a little more carefully, I think. He's at the point where he virtually cannot be told No, without at least a major outburst, if not a complete meltdown.

One thing that confuses me is that he does a hundred times better for his teachers than for me. I don't understand it. The worst he'll do for them is ignore them (which does have consequences) but he never yells, screams, sobs, hits them, etc. He does all these things with me, every day. Don't get me wrong, I'm relieved that he does so well for them, but I wish I knew their secret!

I'm sorry this is so rambling, I really don't even have a point. Just stressed out, I guess. Oh, that reminds me--

"Sarah - your issues definitely sound gluten-related.....I also take Effexor, but have tapered to a very low maintenance dose. IF I were you I'd stay on it for a while longer. Think about tapering down in a few months or a year."

I find myself always thinking, In a couple months when things settle down, I'll wean down... but it's always something, and now I've been taking it for 4 1/2 years. I guess, when the time is right, I'll know. I agree, I really do think my issues are gluten-related. I have a hard time saying that. I find myself trying to hide the fact that I'm on a gluten-free diet, and I don't like telling people. Why? Well...

When my mom was diagnosed with Celiac, everyone was like- Ah, that's what the problem was! And when I put Lucas on a gluten-free diet, and it turned so much around for him, people said- Ah, he inherited it! But it's like anything beyond that is too incredible to believe. My husband and my best friend both have been (politely) telling me for months that putting Ezra on a gluten-free diet is silly, dumb, excessive, unnecessary, etc. (Of course, that was before our doctor chimed in on my side.) And when I finally told people that I'd gone gluten-free (2 weeks after I'd actually done it) I got a whole lot of dead silence. (Edit- I should qualify that-- my mother is utterly relieved that Ez and I are gluten-free. She's been my support in this.)

I loathe this! I cannot stand it that people I care about think I'm jumping on some kind of "trendy" bandwagon. Or maybe that I'm a hypochondriac? I've never gone on a fad diet in my entire life. Why would they think I'd do that now, and put my kid on it, too? Great. Now I have issues with my issues!

Well, I have to end this crazy ramble with a laugh. Thank you for listening!

-Sarah

[mouth]

Ok, so some of you know the issues I've been having with Ezra, my younger son. But here's a quick recap, and I'll try to make this short!

He started pre-school in August and has been sick ever since, but not with anything contagious- it's been sinus infections, coughing, post nasal drippage, and most recently, pneumonia. He also has been having more and more poopy accidents, every day. This has become a complete re-run of what I went through with my older son, Lucas.

Another issue with Ezra (and I didn't use to consider this a "symptom" but I do now) has been temper. This has been building up for at least 2 years or longer, getting worse and worse and worse. Now, it's at the point, where the merest whisper of the word "No" sets off an uncontrollable kicking, screaming, sobbing fit. Since school started, this has gotten worse yet.

What's different since school started? Well, since May, he had been I'd say, about 95% gluten-free-- he eats what his brother eats, and Lucas if strictly gluten-free. At school, he eats actual wheat products at breakfast, lunch and snacktime. Major increase!

Ezra's preschool class is called More @ 4-- it's a North Carolina state funded program, and no food substitutions can be made without a doctor's order. Well, We don't have insurance, and cannot afford testing for anyone at this time. Even Lucas has not been tested-- and I don't even feel it's necessary since every health problem he had has cleared up since going gluten-free! Before yesterday, I hadn't even mentioned gluten-free diets to our family doctor... I guess out of fear of not being taken seriously, even though this doc was the one who initially sent my Mom to a GI because she (doc) suspected Celiac.

I've taken a lot of flak from some friends (and even my hubby, a little bit) about jumping onto gluten-free diet bandwagons, etc... No one denies that Lucas has Celiac or gluten intolerance, because anyone who knows him can see how much better he is now, though. I was right that time, why don't they trust me now?! Anyways, that's tangential.

So I decided to take Ez back to the doctor yesterday, and come clean about Luke being gluten-free, and see what she thought about trying it with Ezra, too. I was scared, but I thought there was a chance she might write the orders for school without formal testing. kbtoys here suggested it- I hadn't considered it before (thank you!)

So now we come to the actual doctor's appointment. Good news is that she was very receptive to trying Ezra on a gluten-free diet! She had no problem writing out the orders for school, and was very encouraging.

The other thing, though... Oh man.

She said that from everything I've described to her about Ezra's increasing uncontrollable temper, bordering on rage... and from everything she personally has seen his behavior during his visits with her... that I also need to consider the possibility of Bipolar Disorder. Apparently this is something that she's been considering for a little bit. Both the kids have seen her since birth, and now most of my family sees her too- she knows us fairly well.

Well, my jaw hit the floor. She told me, Don't freak out, even if it is the case, a gluten-free diet may help. Then she went on to tell me about all the behavior disorders that parents have seen improvement in on a gluten-free diet. (I had already read about everything she was telling me, but it was an unbelievable relief to find out how Gluten-Literate she is... I felt dumb for being scared, and not trusting her before We've been going to her for years, I should've known her better than that.) But she said for me to read up on it, do some research, and see what I thought. Because if is Bipolar, he'll need medication, as early as possible.

Well, no matter what anybody says, I DID freak out. I just kept thinking, NOT my BABY! My baby cannot be on mind altering medication for the rest of his life! Not my sweet baby!

So far, I've only done a little bit of preliminary reading, and I'm starting to feel a little better. I have a lot more research to do, but so far, I don't think this quite fits Ezra. I really believe that going on a gluten-free diet is going to help him a lot. Bipolar disorder wouldn't explain his poop problems, or the constant illnesses, but Celiac explains everything.

If he is Bipolar, I'll deal with it, and I'll do what I have to do for him. But I'll be damned if I'm not going to try everything else first before putting a 4 year old on Bipolar medication!

-Sarah

Dear Sarah

It sounds like you really have your hands full. Take a deep breath.. try and relax a little 4 yourself.. You can't help the boys if you don't take care of yourself.. I know what this is like. I am a single mom and although we live w/my parents- they don't help much..

Let me tell you. my daughters numbers have started to go down already at the 6 month blood work. Her behavior- no change- and the dr's say well she is a teenager.. shes 13.. ugh.. i wish her behavior would change.. i have the same problem- although not as bad with the NO word. jeeezzz..

Any way, start the diet, wait a couple of months- u know the drill and see how he does. Is this his first year of preschool? if so, the pooping could be a psychological thing to get out of going maybe? Maybe he doesn't like it?? Maybe they are giving him something that is really upsetting his stomach?? Is he allergic to anything? See now here I am giving you a bunch of things that could be causing the poop problem.. Could he be having a problem with the teacher? or another child there? (these are 2 worrysome things that they would not tell you about- unless he hurt another child or becomes a problem in the class unfortunately..

Any way i would say give it a while and see how he does. If his behavior changes at all..

any way i think this is long enuf already.

good luck

lynn

ps do u have a ROCK group near you?? u should ck and find out

[Ridgewalker]

Hi Lynn,

Thanks so much for your encouragement! I must say, the past few days have been a hideous rollercoaster. On the upside, his mood has actually been pretty good! No full-out tantrums in 2 whole days- for him, that is amazing. On the down-side, his pooping problems have increased tenfold. I have a theory on this...

This isn't the first time I put Ezra on a gluten-free diet. The first time was in early summer. Ever since my older son had seen such improvement on the diet, I had wanted to try Ezra on it, too. I finally got my way, and we tried it out- and his diarrhea and poopy accidents got worse. I fought and held on for about 3 weeks and my husband had had enough, and we took him off it. At that time, we thought, maybe an ingredient in gluten-free replacement foods, such as soy, were giving him trouble. So that's when Ezra went gluten-free light, and seemed to maybe get a little better.

But that theory doesn't make sense to me anymore. Even when he was about 95% gluten-free, he was still eating all the same gluten-free foods- just with the occasional pack of wheat crackers thrown in! Now for my current theory...

I have read here that some people get worse before they get better... I kind of think of it as a toxic dumping process. Like when someone quits smoking- they cough even worse for a couple weeks before they get better.

Whatever it is, God I hope it doesn't last too long. He's been out of school all week. All day long, day after day, it's been constant rounds of poop, baths, laundry, carpet scrubbing, poop, baths, laundry, with the occasional bout of vomitting thrown in just for some extra fun.

Obviously, something is going on with my child. It isn't any stomach virus- no fever, and he doesn't act sick at all. It sure as heck seems dietary. I can't imagine why else a bright 4 1/2 year old would have 10-12 or more poopy accidents in one day. That's not including what he's doing in his sleep I've been having to check on him repeatedly in the middle of the night and get him cleaned up, changed, etc.

He also has a very light, bumpy, itchy rash on his tummy. I don't know what that's all about, unless it's from the bed wetting, which has also been very bad for the past couple months. I check him so many times all night long, but sometimes I don't catch it, and he lays in it for awhile. (Incidently, bedwetting is a glutening symptom with his brother.)

That's been going on for days, and by the time my husband got home from work tonight, I was nearly in tears. (He's in upper management in a small local company and works looong hours. He often doesn't get home till after the kids are in bed.)

What keeps me going is the fact that he seems so well in between GI incidents. And his mood really has been better. I can't remember the last time he went two full days without a rage!

Oh you asked about school! (I didn't intend for this to become a venting session, sorry!) Yes, this is his first year of preschool- and he did have some adjustment problems at first, but now has settled in and is doing much better. I've looked over the daily menus, and the only thing he got there that he didn't get at home was wheat products. Luckily, he adores his teachers, one of whom we've known for years! They haven't mentioned problems with another student, and neither has he, so far.

As for allergies, since last Christmas, he's had allergic reactions to two antibiotics (Erythromycin and Amoxacillin,) but other than that, nothing that we know of.

Unfortunately, the closest ROCK group is several hours away

Anyhoo, there's a reply, a vent, and an update all in one! That's what's going on with us.

Thanks again!

PS- To those of you who've posted links to articles, I'm not ignoring them, just haven't had a chance to read them yet. Thank you!!! I'll get to them soon!

[Fiddle-Faddle]

Can't remember if I've already suggested it (Mommy brain, sorry), but please read Unraveling the Mysteries of Autism by Karyn Seroussi. I am NOT suggesting that he is autistic! It's just that many autistic children have celiac, too, and she mentions withdrawal syndrome, too. Systemic yeast infection (candida) might be a factor, too, also vaccines.

There are so many things in your story that made me think of this book, there's gotta be some connection.

If you google "Karyn Seroussi" I think there's a website with a great deal of the info from the book.

Best of luck!

[Centa]

Hi, Ridgewalker

You may be doing this already, but consider a few days of writing down exactly what Ezra eats and drinks, and when he poops and throws up. Your doctor definitely needs to know as much detail as you can give her.

It's an unpleasant topic, but celiac poop also has some frequent characteristics, so I'd suggest telling the doctor about poop details. If the GI isn't working the poop can stick to the bowl, light colored, sometimes even to the point of looking clay-ey, and sometimes floating. Not a great thing to get so specific about, but you and Ezra are needing to get to a solution as fast as possible. Poor little guy and here's a hug for you two. And what about milk intolerance? Is he having milk this week in any form?

Have you read the Dermatitis herpetiformis (I think you spell it) forum on this site? There are skin reactions that are used as a proof of celiac because they so reliably show up for some celiacs. One symptom is that they are intensely itchy....

[mouth]

Hi Lynn,

Thanks so much for your encouragement! I must say, the past few days have been a hideous rollercoaster. On the upside, his mood has actually been pretty good! No full-out tantrums in 2 whole days- for him, that is amazing. On the down-side, his pooping problems have increased tenfold. I have a theory on this...

This isn't the first time I put Ezra on a gluten-free diet. The first time was in early summer. Ever since my older son had seen such improvement on the diet, I had wanted to try Ezra on it, too. I finally got my way, and we tried it out- and his diarrhea and poopy accidents got worse. I fought and held on for about 3 weeks and my husband had had enough, and we took him off it. At that time, we thought, maybe an ingredient in gluten-free replacement foods, such as soy, were giving him trouble. So that's when Ezra went gluten-free light, and seemed to maybe get a little better.

But that theory doesn't make sense to me anymore. Even when he was about 95% gluten-free, he was still eating all the same gluten-free foods- just with the occasional pack of wheat crackers thrown in! Now for my current theory...

I have read here that some people get worse before they get better... I kind of think of it as a toxic dumping process. Like when someone quits smoking- they cough even worse for a couple weeks before they get better.

Whatever it is, God I hope it doesn't last too long. He's been out of school all week. All day long, day after day, it's been constant rounds of poop, baths, laundry, carpet scrubbing, poop, baths, laundry, with the occasional bout of vomitting thrown in just for some extra fun.

Obviously, something is going on with my child. It isn't any stomach virus- no fever, and he doesn't act sick at all. It sure as heck seems dietary. I can't imagine why else a bright 4 1/2 year old would have 10-12 or more poopy accidents in one day. That's not including what he's doing in his sleep I've been having to check on him repeatedly in the middle of the night and get him cleaned up, changed, etc.

He also has a very light, bumpy, itchy rash on his tummy. I don't know what that's all about, unless it's from the bed wetting, which has also been very bad for the past couple months. I check him so many times all night long, but sometimes I don't catch it, and he lays in it for awhile. (Incidently, bedwetting is a glutening symptom with his brother.)

That's been going on for days, and by the time my husband got home from work tonight, I was nearly in tears. (He's in upper management in a small local company and works looong hours. He often doesn't get home till after the kids are in bed.)

What keeps me going is the fact that he seems so well in between GI incidents. And his mood really has been better. I can't remember the last time he went two full days without a rage!

Oh you asked about school! (I didn't intend for this to become a venting session, sorry!) Yes, this is his first year of preschool- and he did have some adjustment problems at first, but now has settled in and is doing much better. I've looked over the daily menus, and the only thing he got there that he didn't get at home was wheat products. Luckily, he adores his teachers, one of whom we've known for years! They haven't mentioned problems with another student, and neither has he, so far.

As for allergies, since last Christmas, he's had allergic reactions to two antibiotics (Erythromycin and Amoxacillin,) but other than that, nothing that we know of.

Unfortunately, the closest ROCK group is several hours away

Anyhoo, there's a reply, a vent, and an update all in one! That's what's going on with us.

Thanks again!

PS- To those of you who've posted links to articles, I'm not ignoring them, just haven't had a chance to read them yet. Thank you!!! I'll get to them soon!

DEAR RIDGE WALKER

SORRY ABOUT THE CAPS- NOT YELLING- NEED NEW GLASSES-- OK HERE WE GO EASIEST FIRST

THE ROCK GROUP-- IT DOESN'T MATTER THAT YOU CAN'T GO-- BUT YOU CAN GET ADDED TO THEIR EMAIL LIST AND TRADE INFO-- WE DO THAT AS WELL AS MEETINGS.. OR IF YOU CAN'T FIND ONE- LET ME KNOW AND YOU CAN GIVE ME YOUR EMAIL OR I CAN GIVE YOU MY ROCK LEADERS EMAIL ADDRESS. LOTS OF THE ROCK LEADERS ALSO EXCHANGE INFO.. I HAVE ADDED 2 PPL TO OUR EMAILING LIST- 1 IN INDIANA AND 1 FROM MICHIGAN.-- BOTH PPL WHO DON'T LIVE IN AREAS THAT THEY CAN NOT GET SUPPORT.. SO THERE IESNO PROBLEM THERE.. SETTLED.

OK AS FOR THE RASH ON EZ'S STOMACH-- I WOULD LET THE DR SEE IT ASAP. NEVER KNOW WHAT IT COULD BE-- BUT IF YOU THINK THAT IT COULD BE FROM THE ACCIDENTS-- MAYBE TRY A LITTLE A&D OR DESITIN-- MAYBE DIAPER RASH..

AS FOR THE ACCIDENTS-- I AM SORRY- I HAVE NO IDEA.. MY DAUGHTERS ONLY SHOWING SYMPTOM WAS CRONIC CONSTIPATION.. AH WAIT.. IT COULD BE AN ALLERGEN-- YES IF YOU LOOK ON IN OTHER AREAS-- YOU WILL SEE THAT LOTS OF CELIACS HAVE ALLERGIES TO OTHER THINGS- COULD BE MILK FOR INSTANCE-- OR RICE OR OR CORN OR SOY-- YOU WOULD NEED ALLERGY TESTING.. MY FRIENDS DAUGHTER GOT BUG BITE- 1ST THEY THOUGHT IT WAS CHICKEN POX- BUT AFTER 3 WKS IT DIDN'T GO AWAY.. I SAW IT WITH MY OWN EYES- RED SPOTS JUST POPPING UP ON HER BODY.. SHE WAS ALLERGIC TO THE BUG BITE SHE GOT..

MY DAUGHTER IS ALLERGIC TO A COUPLE OF THINGS: SULFA, CEFTIN, KEFLEX.

IS HE URINATING ALOT ALSO?? BECAUSE THAT COULD BE A SIGN OF DIABETES..

I AM GLAD THAT YOU HAVE SUCH AN OPEN MINDED DOCTOR.. THAT IS VERY IMPORTANT.. MINE IS GOOD- BUT A LITTLE OLD FASHIONED- BUT THEN HE CAME INTO MY PEDS OFFICE WHEN I WAS 12.. BUT HE IS GOOD- HE IS THE TYPE THAT DOES NOT HOLD ANYTHING BACK- IF THERE IS OR HE SUSPECTS SOME TYPE OF PROBLEM- HE TELLS IT AND SENDS YOU TO THE RIGHT DR FOR THE PROBLEM.. MY DAUGHTER IS HIS 1ST CELIAC PATIENT..

ANYWHOO, NO PROBLEM VENT WHEN YOU WANT!! EITHER HERE OR GET MY EMAIL FROM ME.. MY CELIAC FRIENDS AND I DO IT ALL THE TIME.. BELIEVE ME, IT HELPS.. AND WE SURE SHOULD GET HAZARD PAY.. AND STRESS PAY, AND DOUBLE OVERTIME TO BOOT-- I DEVELOPED WHITE STREAKS IN MY HAIR 10 MONTHS AGO WHEN MY DAUGHTER WAS DIAGNOSED.. SERIOUS! RIGHT AT THE TEMPLES AND STRAIGHT BACK... BUT THEN IT LOOKS REALLY COOL IT IS WHITE NOT GRAY!!!!!!!! LOL...

TALK TO YOU SOONEST.. KEEP ME UP TO DATE PLEASE

VVVVVVVVVGLGLGL (( VERY GOOD LUCK)))

LYNN

[Ridgewalker]

Update:

Well, Ezra's been gluten-free for two weeks now, and we have seen some real improvement already. The first week was awful for him, stomach-wise, but the second week was MUCH better. The worst of his rages have decreased noticeably, and two things happened today that are completely awesome!

1-- I was actually able to talk him down from an impending meltdown before it got bad, and in the past that has been virtually impossible to do with Ezra! We were in the grocery store at the time, and I'll tell you, I've been avoiding taking him to the store with me as much as possible for awhile-- specifically because he almost ALWAYS sees something that sends him into an awful tailspin, whether it be candy or a DVD/toy, or what-have-you. So this was a major success.

2-- He got out of bed tonight, took himself to the bathroom, and pooped in the potty on his own. This is the first time this has happened in MONTHS. Even when he was doing it in the toilet, it was because I'd make him go in there, sit there with him, do calming techniques, flex his knees, etc. Tonight he did it on his own with no problem.

So, I was already encouraged from this past week, but today ROCKED.

We also had a Dr. appointment this morning. I shared with her the improvements that we've seen so far, and told her that I'm not convinced, in my gut, one way or the other if he is bipolar or not. She noted how incredibly difficult it is to diagnose bipolar disorder in children. She advised me to keep reading, keep it in mind so that we can stay on top of it.

She was approving of my decision to keep him on a gluten-free diet.

She also wants to put him on an Omega 3 supplement, and suggested a children's liquid version that is available at Whole Foods. She specified 1,000 mg a day for him (she advises 3,000 mg for adults.) She said that Omega 3 supplements have also been shown to really help children with behavior disorders and developmental disorders. She named bipolar disorder and autism spectrum specifically.

He still has a horrendous cough. She put him on Zyrtec and Singulair again (he's been on them several times before) and also said that he may be mildy asthmatic. So she gave us a 2-week once-a-day asthma inhaler, too.

The rash that I mentioned here before has been coming and going, and changing locations on his body. But it always stays between his upper belly and his knees. So I'm pretty sure that it's from bed wetting and /or sitting in poop smears (if he has small accidents, he often ignores it and fibs to me about it. Sometimes I don't catch it right away. )

Incidentally, the bed wetting has also decreased. He went from doing it every single night, sometimes more than once, to now having only done it ONCE in the past week.

I am really feeling like we're on the right track!!!

[AndreaB]

Sarah,

I'm glad to read that Ezra is doing so much better on the gluten free diet.

I have also heard about omega 3's and behavior. All my family was put on omega 3's 2 months ago. We don't have the funds to keep up with all the supplementation and have choosen to just try to keep on toxin binders.

I did want to suggest the possibility of lyme for his congestion, etc. I believe Carla has mentioned that as a symtom in one of her children.

[Fiddle-Faddle]

I was wondering if the coughing might be due to reflux--which is a major glutening symptom in myself. Reflux can also cause an asthma response.

YOu have definitely been through the wringer! I hope the improvements continue.

I also wanted to advise giving a "schedule" pep talk before going to the store.

Example: "We are going to the store in 15 minutes. We will be buying A, B, C, and X, Y, Z. We will bring ______________ (fill in the blank with favorite gluten-free snack, such as nuts (if he's not allergic) with a few chocolate chips in a zipper bag) and a sippy cup of water for you to snack on while you sit in the cart. We don't have enough money to buy _______ (fill in blank with whatever he yowled for last time), but it would be great if you would help me pick (grapes, cherries, some kind of fruit) and fill the bag with them, and if we go on the self-checkout line, it would be great if you could help me scan the items (my kids called it "beeping the food.") You are not allowed to yell or whine, especially in the store, where people will get mad at you."

You probably already know not to take him to the store at a time when he is tired or hungry (at least, not without food). My kids loved to sing, so we always sang on long check-out lines. I never bothered to worry about disturbing anyone; I figured they'd prefer the singing to crying! FInger games (Here's the church, here's the steeple), I Spy, and SImon Says were good, too.

Distraction rules!

[Ridgewalker]

Sarah,

I'm glad to read that Ezra is doing so much better on the gluten free diet.

I have also heard about omega 3's and behavior. All my family was put on omega 3's 2 months ago. We don't have the funds to keep up with all the supplementation and have choosen to just try to keep on toxin binders.

I did want to suggest the possibility of lyme for his congestion, etc. I believe Carla has mentioned that as a symtom in one of her children.

Andrea,

Thanks! I had not heard of the omega 3/behavior connection until today. Funds are a constant concern for me as well, and supplements are hideously expensive, particularly the less common ones (read- most supplements formulated for kids.) But it should be do-able if I'm only buying it for Ez right now.

I have to admit, my jaw just hit the floor when you mentioned Lyme as a possible cause of his long-term cough. That never occurred to me! I only just wrapped my brain around the probability that I have it myself. But you're absolutely right, I need to keep that in mind when I'm looking at health issues with the kids.

[Ridgewalker]

I was wondering if the coughing might be due to reflux--which is a major glutening symptom in myself. Reflux can also cause an asthma response.

YOu have definitely been through the wringer! I hope the improvements continue.

Alison,

I hadn't considered reflux either! I'm learning all kinds of new things today, I didn't know reflux could cause an asthma response! I'll look into this.

I also wanted to advise giving a "schedule" pep talk before going to the store.

Example: "We are going to the store in 15 minutes. We will be buying A, B, C, and X, Y, Z. We will bring ______________ (fill in the blank with favorite gluten-free snack, such as nuts (if he's not allergic) with a few chocolate chips in a zipper bag) and a sippy cup of water for you to snack on while you sit in the cart. We don't have enough money to buy _______ (fill in blank with whatever he yowled for last time), but it would be great if you would help me pick (grapes, cherries, some kind of fruit) and fill the bag with them, and if we go on the self-checkout line, it would be great if you could help me scan the items (my kids called it "beeping the food.") You are not allowed to yell or whine, especially in the store, where people will get mad at you."

You probably already know not to take him to the store at a time when he is tired or hungry (at least, not without food). My kids loved to sing, so we always sang on long check-out lines. I never bothered to worry about disturbing anyone; I figured they'd prefer the singing to crying! FInger games (Here's the church, here's the steeple), I Spy, and SImon Says were good, too.

Distraction rules!

This is excellent advice. I've always done a count down for when we're leaving (whenever possible) and a heads-up on what we're buying. In the past, this has not seemed to help him much, but it may well be a different story when used in conjunction with your other suggestions. I hadn't really considered bringing a snack for him, and the distraction ideas are great! I'm definitely going to be trying them out.

As for not taking him when he's tired or hungry, I have definitely tried to avoid that. But lately I've been taking it a step further- when we're out or have had to run an errand, I'll actually ask him: "Do we feel up to stopping at the store on the way home?" (Even though he seems fine outwardly, I'll ask anyway.) And I've come to find that he almost ALWAYS says, "No, I can't do it, I'm too tired, please let's go home."

This was a major eye-opener for me. He has apparently been getting overwhelmed and tired out while we are out running errands, and I really didn't even see it till I bothered to actually start asking the poor kid. Now, when he says that, I go ahead and take him home- even it means rearranging dinner plans, or going to the store late at night. Lucas can go-go-go without much problem, but at this point, Ezra just can't. Now I know.

[DingoGirl]

Sarah! Such great news!!

I really think Ezra's cough and congestion will clear up over time on teh gluten-free diet, and probably the rash as well. PLEASE give it time. I would not jump to an immediate Lyme conclusion due to a persistent cough. Before I removed gluten from my diet, I was sick constatnly, horrible colds developing into strep or bronchitis (and, some REALLY weird things that required my mom to stay with me THREE times in Monterey for five days apiece to take care of me - ugh :huh). Since removing gluten, nearly two years ago, I have not had a SINGLE COLD. I had a sore throat on two different occasions that lasted for one day. Please hang in there!

Something I forgot to mention about my bipolar years....one of the symptoms of mania is anger and verbal abuse. Sadly, this was a very big factor in my condition.....very big. I get teary when I think about the damage I did to my family, the way I acted, ruined family vacations, the outbursts, and things I said that I simply could not control....and VERY much wanted to. I lost DECADES of my life to a gluten-poisoned brain. Decades. It's unspeakably sad to me. I have no relationship whatsoever with my little brother - he seriously doesn't like me. He lives in Indiana, and our relationship will never change. There is nothing I can do.

I am SO pleased with this report in Ezra. Please keep him on the healthiest and purest food imaginable, this also helps feed the brain enormously (i.e., very little refined/processed foods) and I think the Omega 3 is a great idea.

Keep us posted....I think things are going to get better and better!

[Ridgewalker]

Hi, Ridgewalker

You may be doing this already, but consider a few days of writing down exactly what Ezra eats and drinks, and when he poops and throws up. Your doctor definitely needs to know as much detail as you can give her.

It's an unpleasant topic, but celiac poop also has some frequent characteristics, so I'd suggest telling the doctor about poop details. If the GI isn't working the poop can stick to the bowl, light colored, sometimes even to the point of looking clay-ey, and sometimes floating. Not a great thing to get so specific about, but you and Ezra are needing to get to a solution as fast as possible. Poor little guy and here's a hug for you two. And what about milk intolerance? Is he having milk this week in any form?

Have you read the Dermatitis herpetiformis (I think you spell it) forum on this site? There are skin reactions that are used as a proof of celiac because they so reliably show up for some celiacs. One symptom is that they are intensely itchy....

Centa,

So far, he's gone about a week and a half without throwing up now. I am definitely keeping dairy in mind, though, as a possibility- particularly since I have been reading so many stories here about dairy making kids' behavior go wild.

I've looked at some pics of DH, and his rash doesn't look anything like it, so far. His rash is tiny, tiny red bumps, almost like a heat rash. He says they don't itch, but they do seem to be sore sometimes.

Your description of the clay-ish poop that sticks to the bowl is Ezra's poop to a T!!! Sometimes it's hard to tell that, since frankly, he doesn't poop in the toilet very frequently. When he has accidents, it's very thick (not dry, but thick) and sticky, and usually kind of sandy. And again, when it is in the toilet, your description was perfect.

[Ridgewalker]

Sarah! Such great news!!

I really think Ezra's cough and congestion will clear up over time on teh gluten-free diet, and probably the rash as well. PLEASE give it time. I would not jump to an immediate Lyme conclusion due to a persistent cough. Before I removed gluten from my diet, I was sick constatnly, horrible colds developing into strep or bronchitis (and, some REALLY weird things that required my mom to stay with me THREE times in Monterey for five days apiece to take care of me - ugh :huh). Since removing gluten, nearly two years ago, I have not had a SINGLE COLD. I had a sore throat on two different occasions that lasted for one day. Please hang in there!

Susie!

Truly, that is my instinct as well. I'm just trying to keep all possibilities in mind. But your story sounds just like Lucas! After three years of nearly constant ear/sinus infections, strep, colds, pink eye, etc.-- he hasn't gotten sick at all, not once , since he went gluten-free in May! The gluten was obviously depressing his immune system somehow.

Something I forgot to mention about my bipolar years....one of the symptoms of mania is anger and verbal abuse. Sadly, this was a very big factor in my condition.....very big. I get teary when I think about the damage I did to my family, the way I acted, ruined family vacations, the outbursts, and things I said that I simply could not control....and VERY much wanted to. I lost DECADES of my life to a gluten-poisoned brain. Decades. It's unspeakably sad to me. I have no relationship whatsoever with my little brother - he seriously doesn't like me. He lives in Indiana, and our relationship will never change. There is nothing I can do.

I am SO pleased with this report in Ezra. Please keep him on the healthiest and purest food imaginable, this also helps feed the brain enormously (i.e., very little refined/processed foods) and I think the Omega 3 is a great idea.

Keep us posted....I think things are going to get better and better!

I'm so sorry for the horrendous things you've been through. Some of this does remind me of Ezra. Being 4, he doesn't do verbal abuse so much, but he lashes out physically. It's generally either at me or his brother. For example, the one rage he had last week- was in Target (like I said, stores are often not good).

I still have a black bruise on my arm, where he grabbed my hand and bit me, just as hard as he could. As much as it hurt (brought tears to my eyes!), and as mad as I was, it was so obvious he could NOT control himself. It was apparent all over the place- in his facial expression of completely agonized frustration, his clenched hands, his red/purple coloring. He was out of control.

He also has times, though, of incredible exuberant affection! Kisses, hugs, cuddling, etc. In fact, I've never SEEN a child as affectionate as Ezra. Which of course, makes the rage all the more bewildering.

But yes, I am thrilled to report that we have seen so many improvements already. I'm going to start him on the Omega 3s as soon as I can get to Whole Foods- it's a long drive for me here. And I am trying to give him as many whole, pure foods as possible. Food is a major issue with him, it's like walking a tightrope, so I try to choose my battles, and limit any junk as much as I possibly can. (Halloween is tough )

Thank you so much, again!

[Juliet]

At your grocery store or at a Trader Joe's, you can often find ground flaxseed meal. Once opened, you should refrigerate it, but it's high in fiber & Omega 3. Until you can get to Whole Foods, you could always get a bag of this and just add it to nearly everything: homemade chicken nuggets, homemade bread (I have a SUPER quick flatbread recipe that's cooked like old fashioned cornbread and is great for a quick piece of bread with some cheese - my kids eat it plain), cookies, cream of rice cereal, etc.

[Ridgewalker]

At your grocery store or at a Trader Joe's, you can often find ground flaxseed meal. Once opened, you should refrigerate it, but it's high in fiber & Omega 3. Until you can get to Whole Foods, you could always get a bag of this and just add it to nearly everything: homemade chicken nuggets, homemade bread (I have a SUPER quick flatbread recipe that's cooked like old fashioned cornbread and is great for a quick piece of bread with some cheese - my kids eat it plain), cookies, cream of rice cereal, etc.

Juliet,

Thanks for the ideas! I actually already have some flaxseed meal. I add it to most of the homemade breads that I make. This is good for me and Lucas, but Ezra is a bread-hater- he won't touch the stuff (instinctive???) I hadn't thought about adding it to the other things you suggested. I'll give it a try!

PS- Would you mind sharing your flatbread recipe?

[AndreaB]

Sarah,

I'm not saying Ezra has lyme. Just keep it in the back of your mind if his symptoms don't totally resolve on the gluten free diet. Gluten can cause behavioral problems as well as metals (which my family is dealing with) and lyme.

Our food intolerances have continued to grow, which alerted us to something else going on. Always start with the simple.

Keep an eye out on both the boys as they grow.....most especially if you do in fact have lyme. I believe Carla has 2 children that are suspect and one that is being treated.

[Joss]

I have been reading this thread and found it interesting. Unfortunately my youngest daughter, now in her 30s has bipolar disorder. Looking back she was a difficult child, but not intensely angry. She was more clingy and threw small tantrums rather than rages. She was diagnosed at 23 and sometimes she takes her meds and sometimes she doesn't. Non-compliance is common with bipolar. She lives in her own little world, is tactless, but holds down a great job and is married with 3 children. Like a lot of people with this problem, she is creative and imaginative. Did you know Winston Churchill had bipolar all through the war years? He used whisky to manage it and often when he was at his lowest, he would suddenly snap out of his depression and deliver his amazing speeches.

Funny about the sandy poop as I have those too. I have often wondered where the grit comes from. Mine are also sticky, sorry folks, but we all know about how problematic our BMs can be. I just find it interesting.

I am glad Ezra seems better. Maybe its just that he is in a lot of pain and cannot understand why. Hang in there there is light at the end of that tunnel. BTW can I borrow your doctor?

Joss

[Mtndog]

Sarah- I am SO happpy to hear about his improvements- those are HUGE! YIPPEEE!!!!!!!!! And the good thing is that you are only 2 weeks in so you should continue to see improvements

I would DEFINITELY suggest keeping a food/symptom journal for the boys. It's a pain in the butt BUT it really helps me to go back and look when I have a GI, pain or neuro symptom to see what I ate the day before. It's helped me realize which foods make me feel best.

As far as the red dye goes, I have an uncle (in-law) who pees his pants within a half hour of eating something with red dye in it. Obviously he's VERY careful

One step at a time, removing the gluten may be all that's needed. My niece sounds a lot like Ezra but has been tested for celiac and it's always come back negative Unfortunately, my sister has yet to try going gluten-free despite that I keep encouraging her.

Bipolar kids? I think there probably are children who are bipolar but I personally have a hard time imagining it becoming full-blown until they are older. As a child, I always had GI issues and major anxiety. Didn't realize that's what it was (anxiety) at the time. managed to cope.

In my early twenties, I finally "broke" and went through a SEVERE depression. I was unable to eat, sleep, and had just started my first job out of college. I probably had 20 panic attacks a day, was so anxious I couldn't keep down ANY food I tried to eat, cried constantly, was living at home and my mom had to sleep in my room. It was horrid. What followed was 15 years of tons of drugs and therapy. I'm not saying I don't have depression, BUT I can't believe how much I've been able to cut down on meds since going gluten-free. The last time I had a panic attack was probably about 2 years ago after getting glutened.

My case got a little more complicated because I got bit by a tick in 2003 and have Lyme (I actually think it's what tipped my body over the edge in terms of gluten intolerance). It's hard to figure out if I've been glutened, having a bad Lyme day or whatever but I DO KNOW that going gluten-free kept my body running for at least 2 more years despite the Lyme.

((((((HUGS))))) to you for all you have been through and hopes for continued improvement!!!!!!!!!!!

[Ridgewalker]

Sarah,

I'm not saying Ezra has lyme. Just keep it in the back of your mind if his symptoms don't totally resolve on the gluten free diet. Gluten can cause behavioral problems as well as metals (which my family is dealing with) and lyme.

Andrea, oh I know you're not saying he has it! But I do appreciate you pointing out the possibility- exactly for the reason you said, to keep in the back of my mind.

I've been keeping metals in the back of my mind, as well actually.

But, we're taking things one step at a time, and I do appreciate all suggestions and possibilities. I can't think of everything on my own!

[Ridgewalker]

I have been reading this thread and found it interesting. Unfortunately my youngest daughter, now in her 30s has bipolar disorder. Looking back she was a difficult child, but not intensely angry. She was more clingy and threw small tantrums rather than rages. She was diagnosed at 23 and sometimes she takes her meds and sometimes she doesn't. Non-compliance is common with bipolar. She lives in her own little world, is tactless, but holds down a great job and is married with 3 children. Like a lot of people with this problem, she is creative and imaginative. Did you know Winston Churchill had bipolar all through the war years? He used whisky to manage it and often when he was at his lowest, he would suddenly snap out of his depression and deliver his amazing speeches.

Funny about the sandy poop as I have those too. I have often wondered where the grit comes from. Mine are also sticky, sorry folks, but we all know about how problematic our BMs can be. I just find it interesting.

I am glad Ezra seems better. Maybe its just that he is in a lot of pain and cannot understand why. Hang in there there is light at the end of that tunnel. BTW can I borrow your doctor?

Joss

Thank you for telling me about your daughter! I am embarrassed to admit that before a few weeks ago, I had some incorrect stereotypes in my head about bipolar disorder. The more I hear about people living with this, the less scary the possibility is. I had read that Winston Churchill was bipolar, but no details.

Don't worry about the poo talk- I am the queen of poop conversations! My husband finds it hilarious that I was so thrilled to find this message board- a place where I can talk to people about poop problems!

Yeah, our doctor rocks. Over the past nearly-seven years with her, there's only been 1 or 2 times where I've gotten aggravated with her. That's pretty darn good! She's really caring, open-minded, and knowledgeable. You can't ask for much more.

[Ridgewalker]

Bipolar kids? I think there probably are children who are bipolar but I personally have a hard time imagining it becoming full-blown until they are older. As a child, I always had GI issues and major anxiety. Didn't realize that's what it was (anxiety) at the time. managed to cope.

In my early twenties, I finally "broke" and went through a SEVERE depression. I was unable to eat, sleep, and had just started my first job out of college. I probably had 20 panic attacks a day, was so anxious I couldn't keep down ANY food I tried to eat, cried constantly, was living at home and my mom had to sleep in my room. It was horrid. What followed was 15 years of tons of drugs and therapy. I'm not saying I don't have depression, BUT I can't believe how much I've been able to cut down on meds since going gluten-free. The last time I had a panic attack was probably about 2 years ago after getting glutened.

My case got a little more complicated because I got bit by a tick in 2003 and have Lyme (I actually think it's what tipped my body over the edge in terms of gluten intolerance). It's hard to figure out if I've been glutened, having a bad Lyme day or whatever but I DO KNOW that going gluten-free kept my body running for at least 2 more years despite the Lyme.

((((((HUGS))))) to you for all you have been through and hopes for continued improvement!!!!!!!!!!!

I, too, am having difficulty with the idea of bipolarism in such young ages. Nikki told me that over in England it's extremely rare to diagnose a child under the age of 12 as bipolar, and that it's unheard of in a child as young as Ezra.

I hope I don't sound like I'm just believing what suits my situation, but-- I really believe that food has A LOT to do with our mental states. I saw a documentary a few months ago about a school for hard to deal with kids, kids who've gotten in trouble, etc, I can't remember what you call that kind of school- I'm foggy today. It's a school kids go to when they've been expelled from their regular schools.

The school switched over to organic, healthful foods, no msg, no junky stuff, no chips, candy, or soda allowed on campus, etc. You would not believe the change in these kids. They calm down, they focus on their classes, they take up music classes, they improve themselves. How much of this is due to the healthful food?

How many problems are either created or exacerbated because of food intolerances, too much sugar, or crappy additives?

Lyme never would have entered my universe, except I read through Carla's thread on it, just out of interest- and looked at the pics of the Lyme bullseye rashes. I was astounded to see pictures identical to a rash I had when I was 11 years old. My mother actually had me tested for Lyme at that time, but it came back negative and I never gave it another thought, really.

Now I've found out that the bullseye rash alone is diagnostic for Lyme! And that the old tests weren't very reliable! What the heck! So have I been carrying it all this time? I need to get tested when I can get the funds.

Anyhoo, thank you so much for your good wishes. It means a lot to me!!!

[kbtoyssni]

I hope I don't sound like I'm just believing what suits my situation, but-- I really believe that food has A LOT to do with our mental states. I saw a documentary a few months ago about a school for hard to deal with kids, kids who've gotten in trouble, etc, I can't remember what you call that kind of school- I'm foggy today. It's a school kids go to when they've been expelled from their regular schools.

The school switched over to organic, healthful foods, no msg, no junky stuff, no chips, candy, or soda allowed on campus, etc. You would not believe the change in these kids. They calm down, they focus on their classes, they take up music classes, they improve themselves. How much of this is due to the healthful food?

There was a school in Appleton, WI, that did this. I wish more schools did it. They spend more money on food, but the number of discipline problems decreased dramatically. It was shocking to read the statistics. I know there's a theory behind kids have to learn to make good decisions, but serving lots of junk food is just setting them up for failure.

[AndreaB]

I, too, believe that the foods cause alot of behavioral problems. So many additives, chemicals, etc.