Doctor Appointment Shocker

[Juliet]

Sarah -

I'll share the flatbread recipe under the baking & cooking tips either later today or tomorrow. I'll let you know when I do; today's just a little crazy right now with Halloween.

BTW, happy Halloween, everyone!

[Celena]

wow...just wanted to pop in and see how ur kids are because you have been so helpful to me . i havent read all the other posts yet. i hope i am not totally behind in this thread. i agree w you about G explaining everything though. it just makes sense! i hope and pray that gluten-free will be the answer for Ezra. maybe he just needs more time on gluten-free to see all his BP symptoms go away! or maybe it is something else. maybe he is sensitive to other foods because of celiacs or just because he is. i notice a HUGE dif in DD1's behaviour not just from gluten but other foods too. i think she is chemically sensitive too. like to salicylates, amines, etc. we tested amines one time and she was really off the wall by day 3. google 'FAILSAFE diet' and 'behaviour' to hear lots of stories about food chemical sensitivity and behaviour.

ok...i see some have already mentioned the chemical thing. but i wanted to point out (if someone hasnt already) that it isnt just about the artificial chemicals. some kids/ppl are really sensitive to the natural chemicals too. ie bananas are high in biogenic amines. my DD1 has to be limited on bananas. and most fruits are high in natural salicylates (like the artficial ASA). cutting those out of DD's diet made a TOTAL difference in her. she went from being at times crazy agressive up and down miserable etc to a totally normal and happy 2 year old. it is SO nice to have a happy kid after her being so miserable. everytime we test chemical foods or G her mood changes.

good luck and take care:)

[mouth]

wow...just wanted to pop in and see how ur kids are because you have been so helpful to me . i havent read all the other posts yet. i hope i am not totally behind in this thread. i agree w you about G explaining everything though. it just makes sense! i hope and pray that gluten-free will be the answer for Ezra. maybe he just needs more time on gluten-free to see all his BP symptoms go away! or maybe it is something else. maybe he is sensitive to other foods because of celiacs or just because he is. i notice a HUGE dif in DD1's behaviour not just from gluten but other foods too. i think she is chemically sensitive too. like to salicylates, amines, etc. we tested amines one time and she was really off the wall by day 3. google 'FAILSAFE diet' and 'behaviour' to hear lots of stories about food chemical sensitivity and behaviour.

ok...i see some have already mentioned the chemical thing. but i wanted to point out (if someone hasnt already) that it isnt just about the artificial chemicals. some kids/ppl are really sensitive to the natural chemicals too. ie bananas are high in biogenic amines. my DD1 has to be limited on bananas. and most fruits are high in natural salicylates (like the artficial ASA). cutting those out of DD's diet made a TOTAL difference in her. she went from being at times crazy agressive up and down miserable etc to a totally normal and happy 2 year old. it is SO nice to have a happy kid after her being so miserable. everytime we test chemical foods or G her mood changes.

good luck and take care:)

Hi, JUst saw your letter, I don't know where you are, but, maybe it is some other type of problem. My friends daughter got diagnosed and when she went gluten-free, she did NO BETTER. her numbers were not changing at all nothing got better. She Her GI sent her to another dr. Dr. Fasano at University of MD, he is a Celiac Dr, and Celiac Reseacher.. They found that she could not even process gluten-free FOODS.. She was on a really food specific diet for a long time, and now they are adding back gluten-free foods slowly and seems to be doing very well. It had turned out that there was so much damage she could not eat any processed foods at all. Even gluten-free foods, but now she is and doing very well.

glgl

lynn

[mouth]

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!

Hey Ridge walker

Did you think that it may be a problem breaking down processed foods?? my friends celiac daughter has/had that problem.. It was found by a Celiac DR who also does Celiac Research.. glglglgl

lynn

[Ridgewalker]

I have to admit, I'm in tears as I write this. Ezra and I did not have a good day today. Started this morning, he woke up in a bad mood. It wasn't easy getting him to school, but he wasn't kicking and screaming or anything. He seemed ok when I left the classroom. Not great, but ok. His teachers said he did fine during the day... but the afternoon and evening was hideous.

Started with the argumentativeness, combativeness, and being nasty to his brother. There were several times that I had to separate them, and I have to say objectively that Ezra was starting it. Eventually Lucas broke down in tears and screamed at Ezra, "You're absolutely hateful all the time! Get away from me you maniac!" Ok, now I'm full out sobbing. (Luke's wording may sound funny- but he was dead serious, really really upset.)

I did so badly, I didn't do anything right, I broke and I didn't handle him right. It built up and built up, until he was in a rage. He hit and kicked, and he bit me again. And I picked him up and held him in front of me, and yelled right in his face "STOP IT!!!" God I hate myself, and I can't believe that I'm telling you all this. I just can't stop thinking about it, going over it again and again, and I can't stop crying. I didn't hurt him, I'd never hurt my child, but it was still horrible. I can't believe I lost control like that. What hell good is it going to do to scream at an out-of-control 4 year old right in his face?

I put him in his room, hoping he'd calm down eventually. We haven't put his door back on (I think I mentioned we had to remove his bedroom door several months ago because of constant angry slamming, etc) so I could hear him and everything. He screamed and raged for a good 1/2 hour, 45 minutes. At that point, their Dad got home, and I suggested to Ezra that he come out and talk to Daddy about everything that had happened. DH stayed calm, and was attentive, and asked him questions, etc. THAT finally calmed Ezra down- talking to somebody other than me.

He spent the rest of the evening with Daddy, drawing pictures and practicing his letters- so he went to bed in a decent mood.

Now that everybody's asleep, I just can't stop going over everything, and I can't stop the guilt. I feel nauseous.

He HAS been doing better. Definitely improved mood, and better pooping, better control over the pooping, etc. We have had many more good days than we were ever having before. But it's not like there's been a 100% turnaround, no miraculous moment, and today was a BAD DAY. I don't think I've ever felt like a sh!ttier mom.

[AndreaB]

Sarah,

Don't beat yourself up. I'm sure many of us have been there....I know I have quite a few times in the last couple months alone. Seems I'm getting more easily irritated these days.

I'm glad your hubby was able to step in a calm things down. My hubby does the same with my daughter and I step in with him and my oldest son. Both sets are more similar in persaonalities so I think that's why the opposite parent can better deal with the situation.

Hugs!

[Ridgewalker]

Thank you Andrea. I really appreciate it! I am feeling a little bit better now that I've gotten it all written out. I mean, I am mortified at how I behaved- I probably sound psycho. I still can't believe that I posted it, but I NEEDED to get it out.

Mom-guilt is the worst feeling ever.

[AndreaB]

Nope, not psycho.....just a tired mom with lots of health issues of her own, let alone her children. Recipe for some stressful days that will put you over the edge.

Hugs again.

[Fiddle-Faddle]

YOU ARE NOT PSYCHO! YOU ARE NOT A SH-TTY MOM!!!!

You are human.

Even a 4-year old is capable of understanding that when HE loses control, it has consequences in the form of directly affecting the behavior of others towards him, INCLUDING Mom.

I konw you feel horrible about it--we all do when it happens to us. It's a learning process for us as well as for our children. Much as we'd like to be omnipotent and unflappable, we ARE human.

Ultimately, it might have been a good, albeit unpleasant, learning opportunity for Ezra.

Now, if you aren't allergic to chocolate, go have some. (Remember, in Harry Potter, they always eat chocolate after facing dementors--it's medicinal...)

[DingoGirl]

oh Sarah, please forgive yourself, YOU ARE HUMAN, I don't think you did anything wrong in the situation......had that been MY mom? I would have been hit with a belt or "switch" and there may have been blood......and then she wouldn't speak to me for up to three days........[and BTW NOT going for any sympathy here, just highlighting what we MIGHT consider a damaging response! ]

[EDIT: I want it known how WONDERFUL my mom is now, how she has matured and realized how unhealthy many of her parenting and coping skills were in her youth!!!!!!!!! She is just about my best friend, and constant ally, and I wouldn't be here now without her!]

Ezra's mood change, if in fact gluten-removal is a helpful solution, will not be complete, or overnight, and no matter how biochemically "right" a child's brain is, the'yre still children, and sometimes crying or a tantrum is the only way they know how to express their frustration. Remember, this is his developed and natural response to situations.....this is how he has coped. This will STILL be how he will cope for quite a while, whether his brain is uncontaminated or not.

I'm been gluten-free for nearly two years.....but the first year was pretty rocky, and I plumetted into deep despair at LEAST three or four times. And my thoughts and responses, during those horrible times, went straight back to their wretched default setting - my whole life, if anything went wrong, my thoughts could literally snowball from zero to suicide in about 30 seconds; my brain can STILL do that on a particularly bad day......but I'm an adult, so I can rationalize and stay calm and know taht this, too, shall pass.

Honey, please give yourself a break. Ezra will be okay, adn so will you.

[mouth]

I have to admit, I'm in tears as I write this. Ezra and I did not have a good day today. Started this morning, he woke up in a bad mood. It wasn't easy getting him to school, but he wasn't kicking and screaming or anything. He seemed ok when I left the classroom. Not great, but ok. His teachers said he did fine during the day... but the afternoon and evening was hideous.

Started with the argumentativeness, combativeness, and being nasty to his brother. There were several times that I had to separate them, and I have to say objectively that Ezra was starting it. Eventually Lucas broke down in tears and screamed at Ezra, "You're absolutely hateful all the time! Get away from me you maniac!" Ok, now I'm full out sobbing. (Luke's wording may sound funny- but he was dead serious, really really upset.)

I did so badly, I didn't do anything right, I broke and I didn't handle him right. It built up and built up, until he was in a rage. He hit and kicked, and he bit me again. And I picked him up and held him in front of me, and yelled right in his face "STOP IT!!!" God I hate myself, and I can't believe that I'm telling you all this. I just can't stop thinking about it, going over it again and again, and I can't stop crying. I didn't hurt him, I'd never hurt my child, but it was still horrible. I can't believe I lost control like that. What hell good is it going to do to scream at an out-of-control 4 year old right in his face?

I put him in his room, hoping he'd calm down eventually. We haven't put his door back on (I think I mentioned we had to remove his bedroom door several months ago because of constant angry slamming, etc) so I could hear him and everything. He screamed and raged for a good 1/2 hour, 45 minutes. At that point, their Dad got home, and I suggested to Ezra that he come out and talk to Daddy about everything that had happened. DH stayed calm, and was attentive, and asked him questions, etc. THAT finally calmed Ezra down- talking to somebody other than me.

He spent the rest of the evening with Daddy, drawing pictures and practicing his letters- so he went to bed in a decent mood.

Now that everybody's asleep, I just can't stop going over everything, and I can't stop the guilt. I feel nauseous.

He HAS been doing better. Definitely improved mood, and better pooping, better control over the pooping, etc. We have had many more good days than we were ever having before. But it's not like there's been a 100% turnaround, no miraculous moment, and today was a BAD DAY. I don't think I've ever felt like a sh!ttier mom.

Don't beat yourself upA!!!!!!!!!!! It happens to most of us on occassion. so you had the melt down.. You need a day off mom... dont we all.. I saw one mom write that we should get combat pay, and we should, dads say== well, i didn't have a problem w/ whoever-- yea but t dad isn't home all l day with them..... so that automatically to the kids makes him the good guy.. ugh.. i never get a break being a single mom== i'm always the bad person- when ever no is said. sooooooooooo

take a deep breath, take a bath, have a glass of something to drink and read a good book or watch a much wanted tv show and let dad take the helm for both for a night or 2 or the weekend..

good luck.. dont we all need it??? BTW have you tried any specialists yet about hs behavior?

l

[Ridgewalker]

Thank you everybody, so, so much for your support! Alison, you're right on target- I totally felt like I'd had a run-in with Dementors last night.

Today was not good, but not as bad as yesterday.

He also had a lot of poopy problems, accidents yesterday and today. I realized tonight that this is a confirmation that his behavioral/mood problems are connected to his gut.

I didn't think he'd gotten any gluten, but I know that they are doing a lot with Play-doh at school this week because they are studying shapes. I reminded his teachers that the tables had to be cleaned extra well, and that his hands needed to be washed extra well afterward, esp under his fingernails. But it's possible that that is the culprit. If not, then it's simply a setback.

Susie, you made an excellent point- he is used to reacting in these ways. He's going to be more likely to do so than, say, Lucas- who never has had anger issues. It makes sense that there are going to be setbacks. (And gah, you have my sympathy anyways!)

Mouth, no I haven't taken him to a behavioral specialist- for a couple reasons. 1- Our budget is suffocatingly tight, and we have no insurance. So it really has to be absolutely necessary, to see a specialist. So far, our family doctor is keeping up with what's going on, and she doesn't think a specialist is essential yet. 2- He's not having these meltdowns and rages at school. In fact, when I discussed the situation with his teachers last week during a conference, they were astonished at the problems I have with Ezra. He does not act like that at school. He does have a couple issues at school-- ignoring people (kids and teacher), and wandering around not focused on anything. But it's not every day, and since he's only 4 that's not a huge issue yet.

I kept Ezra home from school today, because he was just acting really unhappy this morning, and we'd had such a crappy day yesterday. I decided, heck with it- he's just a little guy, he had an awful day yesterday. I'm keeping him home and letting him just chill today. Ended up being a good idea, with the tummy problems he's having.

Several day ago, something wonderful happened- Ezra actually had a fully formed NORMAL poop. And I realized that he had never had one before in his entire life. His poops have always been either the clay-ish sticky, sludgy poops- or the floaty little pieces of poop.

Sooo.... realizing tonight that his mood plummet coincided with tummy trouble actually made me really happy. Today wasn't as bad as yesterday, and hopefully tomorrow will be better!

Thank you again, everyone. I don't know what I'd do without you!

[DingoGirl]

SOOOOOOO glad you had a better day, and let him stay home.....it's hard being four!!

OMG I had to edit my post and here's what I added:

[EDIT: I want it known how WONDERFUL my mom is now, how she has matured and realized how unhealthy many of her parenting and coping skills were in her youth!!!!!!!!! She is just about my best friend, and constant ally, and I wouldn't be here now without her!]

My mom and I have both grown so...........didn't want ANYone to think she is some heinous psycho woman (um, she kinda was when I was growing up, though....but had a LOT to deal with!!!!!!!!!!), I love her to death and would SERIOUSLY be dead if she weren't here..........I'll save the details of that for another time!

Anywho......yes, chocolate, cheap wine (do you have a Trader Joe's? the $2 Charles Shaw cab is quite decent!! ), a hot bath, a silly TV show, and time with dad (the boys)......you're doing a WONDERFUL job, and the proof is in the poop, is it not?????? Sometimes even adult Celiacs have gushy poo even though we're quite careful.............

Hang in there!!!!!

[Ridgewalker]

Susie! I had an out-loud guffaw reading your message-- The proof is in the poop! Can I add that to my signature??

I am super glad to hear about your relationship with your mom! My mom and I are incredibly close. It always makes me want to cry when I hear about people having problems with their mom. So I was really, really happy to read your edit!

Yay for chocolate and cheap wine!!! I wish we had a Trader Joe's- but there isn't one in the whole state. That's ok, I have a big bottle of white zinfandel hanging out in the kitchen. Arbor Mist, my cheap wine of choice all through college I was feeling nostalgic at the store, apparently.

The week is more than half over, I have a lunch date on Friday with my mom, and.... wow... I just realized something else. I can't believe I hadn't noticed-

Ezra isn't getting up in the middle of the night hardly at all anymore. OMG. This is huge! This is the child who didn't sleep through the night at all till he was 18 months old. Even after that, he gets up in the middle of the night more often than not! That's why I'm always on here at all hours! I'm conditioned- I can't sleep at night, even when he does.

But now, I'm trying to remember... I think he's only gotten up once in the past two weeks.

*Faint* Ok, now I know my brain is fried, for me not to have noticed THAT!

[mouth]

Thank you everybody, so, so much for your support! Alison, you're right on target- I totally felt like I'd had a run-in with Dementors last night.

Today was not good, but not as bad as yesterday.

He also had a lot of poopy problems, accidents yesterday and today. I realized tonight that this is a confirmation that his behavioral/mood problems are connected to his gut.

I didn't think he'd gotten any gluten, but I know that they are doing a lot with Play-doh at school this week because they are studying shapes. I reminded his teachers that the tables had to be cleaned extra well, and that his hands needed to be washed extra well afterward, esp under his fingernails. But it's possible that that is the culprit. If not, then it's simply a setback.

Susie, you made an excellent point- he is used to reacting in these ways. He's going to be more likely to do so than, say, Lucas- who never has had anger issues. It makes sense that there are going to be setbacks. (And gah, you have my sympathy anyways!)

Mouth, no I haven't taken him to a behavioral specialist- for a couple reasons. 1- Our budget is suffocatingly tight, and we have no insurance. So it really has to be absolutely necessary, to see a specialist. So far, our family doctor is keeping up with what's going on, and she doesn't think a specialist is essential yet. 2- He's not having these meltdowns and rages at school. In fact, when I discussed the situation with his teachers last week during a conference, they were astonished at the problems I have with Ezra. He does not act like that at school. He does have a couple issues at school-- ignoring people (kids and teacher), and wandering around not focused on anything. But it's not every day, and since he's only 4 that's not a huge issue yet.

I kept Ezra home from school today, because he was just acting really unhappy this morning, and we'd had such a crappy day yesterday. I decided, heck with it- he's just a little guy, he had an awful day yesterday. I'm keeping him home and letting him just chill today. Ended up being a good idea, with the tummy problems he's having.

Several day ago, something wonderful happened- Ezra actually had a fully formed NORMAL poop. And I realized that he had never had one before in his entire life. His poops have always been either the clay-ish sticky, sludgy poops- or the floaty little pieces of poop.

Sooo.... realizing tonight that his mood plummet coincided with tummy trouble actually made me really happy. Today wasn't as bad as yesterday, and hopefully tomorrow will be better!

Thank you again, everyone. I don't know what I'd do without you!

Ok sorry to hear about the "no insurance" issue--- don't you have child health plus where you are? it is supposed to be nation wide-- insurance for parents of kids and sometimes the parents who can not afford or do not have insurance?? WOW a normal poop? That is wonderful.. And I would agree with you-- the play doh could very well be the culprit-- they could have washed his hands very well and he could== possible eaten some of it? that would not make the non celiac child sick, but a celiac--- omgs what it would do to the tummy!! did you think of making him special play doh that the school can store and just let him use?? that way he wouldn't gluten himself every time they do play doh?? ok no trader joes there. where are you?? there are so many stores here, and i know of a few in other states. let me know.. my email is the same @ aol.com. and maybe i can get some info for you..

talk later.. good luck again.. fyi-- my daughter has been sick since halloween-- 2 visits to the dr and her chest is clear-- its post nasal drip-- 3rd trip- now its bronchitis-- and its all in the airway and we had to take meds and nebulizer w/ regular meds and inhaled steroids.. ugh.. the meds are done now, i wish the remainder of the cough would go away-- if its not gone by Fri night-- its back to the dr again on sat.. wish me luck..

lynn (aka mouth)

[Joss]

Mouth I have reduced my asthma meds by three quarters now that I am gluten free. My inhaled steroids have dropped from 1600 IUs a day to 400 IUs a day. Next move is down to just 200, whoo hoo!

Also my poops have gone from the sticky clayish stuff to normal looking ones. Now they even SMELL like poops.

[mouth]

Mouth I have reduced my asthma meds by three quarters now that I am gluten free. My inhaled steroids have dropped from 1600 IUs a day to 400 IUs a day. Next move is down to just 200, whoo hoo!

Also my poops have gone from the sticky clayish stuff to normal looking ones. Now they even SMELL like poops.

HEY JOSS, THAT IS WONDERFUL!!!!!!! CONGRATS!!! SOUNDS LIKE YOU ARE STARTING TO FEEL BETTER!!!!!! AND THE DROP IN THE INHALED STEROIDS IS GREAT.. LET ME ASK YOU? DO YOU USE SINGULAIR?? IT HAS HELPED MY DAUGHTER I CAN'T TELL YOU HOW MUCH..

AND THE OTHER THE "POOPS" THAT IS GREAT TOO...

GOOD LUCK ON THE NEXT MOVE DOWN TO THE 200 IU'S A DAY.. HOPE YOU CAN GET IT EVEN LOWER..

BET YOU ARE FEELING BETTER GETTING THE STEROIDS OUT OF YOUR SYSTEM.. IF THEY CAUSED YOU TO GAIN ANY WEIGHT-- THAT SHOULD SLOWLY START TO DROP TOO..

-- MY DAUGHTER WAS JUST SICK-- SHE HAD BRONCHITIS- BUT IT WAS REALLY STRANGE-- IT WAS IN HER AIRWAY ONLY.. BUT SHE NEEDED 7 DAYS OF NEBS W/PULMOCORT 2X A DAY, AND THEN ANOTHER 4 OF JUST ONCE A DAY. FINALLY THE DAM PESKY COUGH WENT AWAY..

YES SHE IS BETTER NOW.. THIS ILLNESS TOOK 6 PEDS. VISITS.. UGH SHE GOES BACK FOR HER PHYSICAL 2MORROW..

TALK SOONEST..

BTW DO I KNOW YOU??

HAVE A WONDERFUL THANKSGIVING..

LYNN

[Ridgewalker]

I'm going to start bumping up the font size on my posts for Lynn and others who are having a hard time with the new format.

Lynn, sorry it took me awhile to reply! As a matter of fact, I am working right now on trying to get the kids on NC's low-cost health insurance. We are a little over the limits, but we may be able to squeeze in anyway.

Update:

Took Ez to the doctor again Friday. The cough got really bad again, and he was throwing up all night Thursday (and all day Friday.) I just had to go back through the pages, because I couldn't remember who called it--

Alison/Fiddle-Faddle--- Our doc's newest theory is reflux! We're trying children's Zantac. Total sticker shock at the pharmacy, as a one week supply was $50. If it works, and he has to be on it long term, we're going to have to come up with something creative. I am furious at the drug companies right now. You can get adult Zantac at Walmart for $4, and it's 10x the mg.

She checked his lungs again, and it doesn't look like the pneumonia's coming back so far. She checked his sinuses, and he does have a little yellow-ish tinge going on up there. She went ahead and gave me an Rx for antibiotics in case he starts running a fever or worsens over the holidays (she rocks.) I've been thru the kids' sinus infections enough to recognize one with as much certainty as a lay-person can.

Ezra's gastro issues have continued to improve. His behavior/mood seems to have plateaued for the time being. His teachers are keeping me informed of how he is at school. Some days, he's great- happy, engaged, wants to participate, etc. They refer to it as him being "his normal Ezra self." Then some days, he's unfocused, can't seem to concentrate on simple activities and games, doesn't talk to/ignores the the other kids, gets up and walks away during story time, etc. They say he's "spacey and unfocused."

He has not had ANY anger issues at school so far. Apparently on his bad days, he responds one way at school, and totally different at home. He doesn't do the spacey, unfocused thing at home!!! And I cannot figure out what precipitates these days. I wish I could be a fly on the wall in his classroom. I can go sit in, any day I want... but of course he'll be completely different if I'm there. It's frustrating-- his bad days at school do not always correspond to his bad days at home.

Every room in the school has a webcam, and you can subscribe to get the feed on your computer, but the resolution is terrible and there's no SOUND. If only the quality was better, I could watch him... sigh... and I probably would watch allllllllll day long, and get nothing done.

I did realize the other day that my hair conditioner has WHEAT in it. I don't know if that would affect the kids or not, but I'm getting rid of it just in case. Besides, I'm finally starting to accept the fact that gluten makes me feel like crap, so... I don't want it in my hair and running over my face anyways.

So that's what's going on with us. Thanks everybody!

[cyberprof]

I'm going to start bumping up the font size on my posts for Lynn and others who are having a hard time with the new format.

Lynn, sorry it took me awhile to reply! As a matter of fact, I am working right now on trying to get the kids on NC's low-cost health insurance. We are a little over the limits, but we may be able to squeeze in anyway.

Update:

Took Ez to the doctor again Friday. The cough got really bad again, and he was throwing up all night Thursday (and all day Friday.) I just had to go back through the pages, because I couldn't remember who called it--

Alison/Fiddle-Faddle--- Our doc's newest theory is reflux! We're trying children's Zantac. Total sticker shock at the pharmacy, as a one week supply was $50. If it works, and he has to be on it long term, we're going to have to come up with something creative. I am furious at the drug companies right now. You can get adult Zantac at Walmart for $4, and it's 10x the mg.

She checked his lungs again, and it doesn't look like the pneumonia's coming back so far. She checked his sinuses, and he does have a little yellow-ish tinge going on up there. She went ahead and gave me an Rx for antibiotics in case he starts running a fever or worsens over the holidays (she rocks.) I've been thru the kids' sinus infections enough to recognize one with as much certainty as a lay-person can.

Ezra's gastro issues have continued to improve. His behavior/mood seems to have plateaued for the time being. His teachers are keeping me informed of how he is at school. Some days, he's great- happy, engaged, wants to participate, etc. They refer to it as him being "his normal Ezra self." Then some days, he's unfocused, can't seem to concentrate on simple activities and games, doesn't talk to/ignores the the other kids, gets up and walks away during story time, etc. They say he's "spacey and unfocused."

He has not had ANY anger issues at school so far. Apparently on his bad days, he responds one way at school, and totally different at home. He doesn't do the spacey, unfocused thing at home!!! And I cannot figure out what precipitates these days. I wish I could be a fly on the wall in his classroom. I can go sit in, any day I want... but of course he'll be completely different if I'm there. It's frustrating-- his bad days at school do not always correspond to his bad days at home.

Every room in the school has a webcam, and you can subscribe to get the feed on your computer, but the resolution is terrible and there's no SOUND. If only the quality was better, I could watch him... sigh... and I probably would watch allllllllll day long, and get nothing done.

I did realize the other day that my hair conditioner has WHEAT in it. I don't know if that would affect the kids or not, but I'm getting rid of it just in case. Besides, I'm finally starting to accept the fact that gluten makes me feel like crap, so... I don't want it in my hair and running over my face anyways.

So that's what's going on with us. Thanks everybody!

Sarah, I found this link on another thread and thought about you and Erza. The relevant article is on page 10, Unexpected Mortality Increase in celiac disease. Part of the article is bad news (sorry!) but one part specifically applies to Erza; a doctor states that he is positive that gluten can be "responsible for psychiatric effects in children as young as five years old." So it looks as if you're on the right track and gluten free may be an answer for Erza. Open Original Shared Link

I wish you, Erza and your whole family good health.

~Laura

[mouth]

I'm going to start bumping up the font size on my posts for Lynn and others who are having a hard time with the new format.

Lynn, sorry it took me awhile to reply! As a matter of fact, I am working right now on trying to get the kids on NC's low-cost health insurance. We are a little over the limits, but we may be able to squeeze in anyway.

Update:

Took Ez to the doctor again Friday. The cough got really bad again, and he was throwing up all night Thursday (and all day Friday.) I just had to go back through the pages, because I couldn't remember who called it--

Alison/Fiddle-Faddle--- Our doc's newest theory is reflux! We're trying children's Zantac. Total sticker shock at the pharmacy, as a one week supply was $50. If it works, and he has to be on it long term, we're going to have to come up with something creative. I am furious at the drug companies right now. You can get adult Zantac at Walmart for $4, and it's 10x the mg.

She checked his lungs again, and it doesn't look like the pneumonia's coming back so far. She checked his sinuses, and he does have a little yellow-ish tinge going on up there. She went ahead and gave me an Rx for antibiotics in case he starts running a fever or worsens over the holidays (she rocks.) I've been thru the kids' sinus infections enough to recognize one with as much certainty as a lay-person can.

Ezra's gastro issues have continued to improve. His behavior/mood seems to have plateaued for the time being. His teachers are keeping me informed of how he is at school. Some days, he's great- happy, engaged, wants to participate, etc. They refer to it as him being "his normal Ezra self." Then some days, he's unfocused, can't seem to concentrate on simple activities and games, doesn't talk to/ignores the the other kids, gets up and walks away during story time, etc. They say he's "spacey and unfocused."

He has not had ANY anger issues at school so far. Apparently on his bad days, he responds one way at school, and totally different at home. He doesn't do the spacey, unfocused thing at home!!! And I cannot figure out what precipitates these days. I wish I could be a fly on the wall in his classroom. I can go sit in, any day I want... but of course he'll be completely different if I'm there. It's frustrating-- his bad days at school do not always correspond to his bad days at home.

Every room in the school has a webcam, and you can subscribe to get the feed on your computer, but the resolution is terrible and there's no SOUND. If only the quality was better, I could watch him... sigh... and I probably would watch allllllllll day long, and get nothing done.

I did realize the other day that my hair conditioner has WHEAT in it. I don't know if that would affect the kids or not, but I'm getting rid of it just in case. Besides, I'm finally starting to accept the fact that gluten makes me feel like crap, so... I don't want it in my hair and running over my face anyways.

So that's what's going on with us. Thanks everybody!

Dear Sarah

Nah-- I am just Heck i need to get new glasses.. that's why i write big.. lol..

Ok, now i am going to try to go in order.. ok?? Good luck w/the insurance thing.. They should help-- point out that this is life long and could become life threatening if not treated properly.

Ahhhhhhhh.. I forgot about that-- when my Kate had first positive blood wk at 4, and endoscopy they found-- peptic disease.. They gave her the zantac.. it improved her a little and she gained weight and ate better.. then it was stopped because it was cleared up.. Kate was also a spit-upper.. even after she went off the bottle.. She went on to lactaid for a while and there was no improvement-- they even tested her for CF.. which thank god was negative..

When ever Kate gets sick, they take her off of all dairy-- it makes mucus worse and she also would vomit all over the place-- the pneumonia-- forget about it.. every year since she was 2!!! They gave her singulair and she still got it, but not as badly-- less trips to the er in the middle of the night..

Then finally we got the pneumonia shot.. still got it.. started the diet--- health is trememdously improved.. REALLY Since Jan she has only been on Anti biotics 3 times 2 for sinus infection - which i dont really count as sick, and the bronchitis.. So really sick only 1 time-- and a few allergy attacks.. that was all. What do i use for her?? the childrens claritan 1 tablet in the evening-- ask your peds first on dosage-- I also use the triaminics.. Primarily the orange which is for "cold & allergy" and the "night time cough and cold" that is the ONLY THING that helps her when she is sick..-- again ask you'r peds.. and if you call novartis they will send you $1.oo coupons for each bottle.. and they are good for like a year or more sometimes..

You can get all generic Drugs at walmart supposely for $4 or $5 .. so check there b4 you fill the rx..

The spacy and walking away? I don't know about the spacy part but the walking away could be bordom/add.. because my katie used to do that.. she had both of them bordom and add.

How about watching thru the window? have them put him in a place where he can not see out the window so you can watch that way.. see what happens.. Every kid acts differently in school than at home also-- so i wouldn't worry too much..

I cant think of much else at the moment as we are sort of in a crisis here now. but i wanted to answer asap

HAPPY THANKSGIVING TALK SOON

LYNN

[dianaoz]

I didn't think he'd gotten any gluten, but I know that they are doing a lot with Play-doh at school this week because they are studying shapes. I reminded his teachers that the tables had to be cleaned extra well, and that his hands needed to be washed extra well afterward, esp under his fingernails. But it's possible that that is the culprit. If not, then it's simply a setback.

Hi Sarah,

[i'm a newbie - my first posting!] I've read through the whole string with great interest - it's so wonderful to have this kind of support network in cyberspace!

Play-doh has become a major issue for us - my 6 yr old son is highly reactive to chemical additives, particularly colouring, but we didn't discover this until he was 3 (the Failsafe Diet has been an absolute life-saver). We had the week from Heck recently when from the Monday evening he was raging and tearful and exhausted and depressed and completely unable to get to sleep (including waking at 3 am) and had come out in a rash on his back - not a major one, more like a sprinkling of little bumps.

When I collected him from school on the Thursday I saw the new batch of bright yellow Play-doh on the table and suddenly made the connection. The teacher had used the commercial "edible dye" tartrazine - 102 which Kenneth is incredibly sensitive to. When I asked her about it she said that he had been licking his hands and LICKING THE TABLE!!! Eeeeuch! Must be the salt I guess. This would ammount to a mega dose - the ammounts added to lollies are regulated by law, but nobody regulates how much we add to Play-doh...

When I told her what this chemical does to Kenneth she mentioned that another child in his class had come out in a rash too. Mmmmmmm, that's a slightly higher ratio than the 1:40,000 incidence of adverse reaction claimed by the manufacturer. We all need a daily rant against a petro-chemical corporation * sigh *

Needless to say I offered to keep them supplied with Play-doh colourd with natural stuff insted - I made a successful batch with turmeric, but I've read that beetroot juice is also good.

Hope this helps! Sorry, I know this is a celiac forum but colouring sensitivities do seem to be common among us antiglutonites!

best wishes,

Diana

[buffettbride]

Sarah--I don't know if Ezra can swallow pills, but we always gave Victoria the OTC Zantac when we thought what she had was reflux. Of course, it didn't help, but I never filled the RX the doctor gave us. Maybe that is an option. $50 is too much!

[loraleena]

Gluten intolerance can cause depression, bipolar, anxiety and schizophrenia. I would not consider meds until you try the gluten free diet first

[SandraD1971]

I think the doctor is crazy to diagnosis a child with bipolar! I would find a new doctor!

My son has celiac and before we put him on the diet, he had big mood disoders and tantrums. He is like a new child on the diet.

It will take time before the diet will fully recover your child.

Not to sound too opinionated, but what is more important than the health of your child. You should find the money and get your child tested.

[Ridgewalker]

I think the doctor is crazy to diagnosis a child with bipolar! I would find a new doctor!

My son has celiac and before we put him on the diet, he had big mood disoders and tantrums. He is like a new child on the diet.

It will take time before the diet will fully recover your child.

Not to sound too opinionated, but what is more important than the health of your child. You should find the money and get your child tested.

I sincerely appreciate you sharing about your son! But don't be so quick to assume that I put non-necessities before the health of my child. Have you ever had to choose between groceries and medicine? I am currently 2 months behind in rent because my son has had to see the doctor every other week for the past 4 months. "Finding the money" to get him tested for Celiac is a bit more complicated than it sounds.

Especially when the blood tests for children as young as him are notoriously unreliable. And especially when a trial gluten-free diet might tell me (is telling me) what I need to know.

Sorry if I'm overreacting, but that last comment really hit me in a sore spot. Balancing living costs and medical expenses is a constant stress and struggle

As for our doctor, she didn't diagnose him with bipolar disorder- she brought it up as a possibility. I understand the immediate shock reaction, believe me. But I assure you, she is an excellent and open-minded doctor.