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#1 of 43 Old 02-07-2010, 12:03 AM - Thread Starter
 
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I've posted here many times so I will skip the full intro, but basically I have two kids with SPD. one is a baby and he NEVER sleeps. well, he sleeps but he wakes constantly. (I mean constantly!) and he takes lots and lots of nursing and rocking to get back to sleep. not even co-sleeping helps much. so I've been staying up with him all ngiht pretty much since birth. he's 9 months old and I'm so beyond tired!

He has a lot of allergies and intolerances and I've been on the ED for several months. I find that I'm not able to add much of anything back in - infact he sleeps worse and seems more reactive to foods now then when I started. (except he has recently stopped his chronic reflux/barfing which is nice.)

I know he's behind and depleted in could probably use some detoxing... but being that he's so young and intolerant to just about everything but sunlight I have difficulty in that area. He is solely breastfed right now. he's tasted an avocado and a bite of rice cereal (just rice, no additives) a couple of times for fun, but never to really eat. he doesn't have much interest in eating - well except everything on the floor! he tries to eat ANYTHING he finds on the floor lol.

I haven't done much in the way of supplementing b/c of his extreme reactions to so many things. I was hoping just taking the right mixture of things out of his diet would be helpful and then I could build back. CLEARLY that isn't the case... and he needs some things added back in.

as he has so many needs, I decided to start with sleep. granted this isn't an easy thing b/c obviously all sorts of things can cause loss of sleep and what not. But I figured I gotta start somewhere. so as I've tried every natural trick in the book, I'm finally ready to give melatonin a try.

he's 9 months old. roughly 22 lbs give or take (we're not one for well baby visits heh).

any advise on how much or the ins and outs of melatonin I'd really appreciate. I realize he is kinda young for it - but for now I'm actually worried over his lack of sleep so I'm willing to try something out.

Thanks in advance!

He is almost always fussy.

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#2 of 43 Old 02-07-2010, 01:46 AM
 
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WOW!! This sound like my life. My 15 month old DD hasn't slept since she was 4 days old!!! She was diagnosed w/ a sleeping disorder in Nov 2009. My Neurologist had us try .275ml of 1mg liquid melatonin. We discontinued due to it gave her nightmares(very common). We did try a new nighty night potion w/ some improvements. 3oz plain Kefir+ 3oz formula. She did finally quit night feedings @ 14 months. I get about 4 hours of sleep instead of 2 most nights. Kefir has L-tryptophan. So does yogurt. Kefir is lactose free. It isn't actually yogurt. It has milk cultures added. If you aren't familiar w/ it google it. Great health benefits.

FYI Iron and B12 Deficiency can cause sleep issues. You might try adding some to your diet as he still nurses. I recommend Floradix Iron + Herbs. I know my DD has probable issues due to her oral aversions and does not get proper nutrition. We supplement w/ Next Step Formula and Nutrition Drinks. We are at present time awaiting blood lab results checking her iron/B12 levels.

We are also going to try a weighted blanket (got one ordered). She moves constantly and has RSL (which can also be caused by iron deficiency). You might try that also.


Wishing you precious sleep from one sleepless mom to another!! I hope something helps. An extra 10 min is 10 min!!! I hope it more like a couple of hours Sweet dreams!

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#3 of 43 Old 02-07-2010, 01:57 AM - Thread Starter
 
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thanks for your reply! I totally know how you feel! we are getting a weighted blanket for my older 5 yr old girl who has SPD. we've talked about getting the baby one too.

for what it's worth melatonin gave me nightmares too. but I only ever tried the time-release formula and i've heard that it does that to some people. this time I'm trying a different kind and a lower dosage.

yes I hear ya on the supplements! I know he's deficient. I'm actually on another forum here about supplementing!

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#4 of 43 Old 02-07-2010, 02:22 AM
 
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Where is this supplement forum? I wasn't able to find it? I could use some suggestions on that subject!

~Summer~ Married DH Chris Mom to DS  Brendan (12/91)  Jenna DD (6/97) and Ava DD(10/08)  and adding #4 12/2   stork-boy.gif

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#5 of 43 Old 02-07-2010, 02:23 AM - Thread Starter
 
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actually it's a sleep forum - but we're talking about supplement. actually I'm asking lost of question and others are giving me suggestions they sent me over here to read about melatonin a bit more.

http://www.mothering.com/discussions....php?t=1059165

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#6 of 43 Old 02-07-2010, 09:01 PM
 
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I wonder if reflux pain may be a factor in the sleep issues? Is that possible? My son was still refluxing after he outgrew the spitting up part of it (he would just swallow it back I suppose or it just came up part way). I'm wondering w/reflux and so many food issues if EOS disease has been ruled out?
I don't know about giving it to babies (my son has taken it for a long time but not when he was so tiny/he did have sleep issues because of reflux). We did put him in a tucker sling and that did help sleep. He was also reflux medicated until 3.5 and when we finally found a reflux med that would help sleep improved.
This is hard and I so feel for you.

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#7 of 43 Old 02-07-2010, 09:10 PM - Thread Starter
 
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yes i suspect he has some reflux still. we arent doing reflux meds b/c thus far weve not found one that worked and we are concerned with the kidney and nuerological side effects. i am only ok with meds if it's a last resort and it works well enough to out weigh the side effects yk?

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#8 of 43 Old 02-07-2010, 09:18 PM
 
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Your sleep issue may (probably is I'll dare say) a result of the untreated reflux. Further serious damage can occur (my son was spitting up blood by the end). But the fact that you've not found one that works makes me further wonder about EOS. Have you seen a pediatric gastro doctor?

Did you try a PPI dosed three times per day? Zegerid is what finally worked for us. You can do probiotics and enzymes to try to counter the side effects. Not treating a baby in pain has worse side effects imo though I know you are struggling to find something that will help him and I sympathize and so identify with that.
Here is a chart w/correct dosing. Any PPI at his age is a three times a day medication and doctors (esp. non-GI ones) often don't do that leading to a child who isn't well controlled or worse.
http://www.marci-kids.com/dosing.html
Here is information about PPI dosing issues:
http://www.marci-kids.com/dosingppis.html

I know you would like to avoid meds. I think, though, giving melatonin at this age would make me uncomfortable as well (it is a hormone his body should be making and, again, my son takes it every night and we love it here it's just that he's so small) and I question what will help if indeed the reflux pain is the issue.

A non med approach might be a tucker sling! We did both.

I know you're trying so hard for him.

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#9 of 43 Old 02-07-2010, 09:34 PM - Thread Starter
 
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thanks for you reply! to answer your feedback:

he would never tolerate a tucker sling - he sleeps on his belly. he is still only 9 month but he's active - almost walking. I have had two kids with reflux one meds so I know ow it is - both silent reflux and not. spitting and not spitting. this is totally different. he wakes often - but never in pain. he doesn't cry a lot, he doesn't spit, he doesn't make gurgle swallow noises and so forth. he has zero symptoms of reflux sans if I eat something on the "no no" list. which is why I stop eating those things to beginw ith. we have had a lot more results from me keeping away from no no foods than with meds so we have stuck with that.

as far as melatonin being a hormone a body should make - I completely agree! but a baby shouldn't naturally have relfux either. melatonin supplementing is only in the interim. it's not what I aim to do long term but any stretch!

for what it's worth I have always had serious sleep problems myself. and I don't have reflux. I have chronic insomnia and always have. especially while nursing. I think it may be a results of adrenal fatigue which I'm trying to correct. thisis why I;m thining melatonin...

hope that better explains.

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#10 of 43 Old 02-07-2010, 10:04 PM
 
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If you did give him melatonin (which I don't think is recommended under 2 very often) then it would only help him fall asleep and would not make a difference in the amount he actually wakes. If you gave him too much, it could cause him to wake more. My son was on it and still woke up every 20 minutes every night until we accidentally figured out that it was stomach pain that was making him wake up. The melatonin did absolutely nothing to help with the frequency of the wakings. It just got him to go down easier. Now that we have the stomach pain treated (he has a tube and we put a drainage bag on the tube to his stomach) he sleeps pretty well, but he was on melatonin long before that.
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#11 of 43 Old 02-07-2010, 10:29 PM - Thread Starter
 
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well i suposse that would be something we'd have to figure out through trial and error just like you did. i don't know what else to say. i'm pretty tuned into my guy, and though i'm not dead set against the idea, my gut doesn't think it's the reflux - or atleast not completely. i'm pretty well versed on gerd/reflux... not saying i know it all b/c obviously i dont. just saying i don't think that is his main issue - think it's a symptom of a greaer problem.

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#12 of 43 Old 02-07-2010, 10:44 PM - Thread Starter
 
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SBgrace -

Iforgot to answe you question about the ped gastro.

to be honest no we've not taken out littlest to the ped gastro. th reason? well b/c he has the same issue my last two had and they went back and forth from specialist to specialist. test after test. consult after consult... and all the ended up with was a shrug. the last doctor i saw actually told me I was just going to have to get used to the fact that she was going to never not be in pain. I was outraged! (my daughter puked ALL of the time, couldn't hold down ANY foods, and screamed 24-7 til she was almost 3!!) I was out of money and patience. so I said forget western med we're trying the alternative route. we revamped her diet, took out allergens and have spent since the slowly rebuilding her system to health. she's not perfect but she can eat and doesn't scream all of the time. she has SPD so she's got issues she deals with, but she's good with good. celiac like me though.

that said when I realized my littlest as going the same route we decided since western stuff only made our last worse (way worse infact!) we would try a different path. so far he's about 75% better than my daughter was. (thank God!) but we can't get him to eat anything but breastmilk (which is fine for now b/c he's only 9.5 months), he fusses a lot (never screams though) and he wakes constantly.

I hope you can see it's not that I don't want to get him tested, it's that everything we've one naturally up until this point has been helping. I'm just now searching for more b/c I see his progress is slowing down so I'm concerned. melatonin was just a trial for us. it's not an end all be all. I was hoping if it did help him (and me) sleep it would give us a little more enery into finding what will help him..

I'm reluctant (though not completely agianst) western medicine. I don't agree with their philosphies and the medicines they use. BUT, I can't deny sometimes it si the way to go. first I will outrule every other possibility for natural healing though. (pretty much the exact opposite of what I did with my daughter!)

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#13 of 43 Old 02-07-2010, 11:07 PM
 
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HennyPenny-The baby has SPD? I am assuming that you are familiar w/ brushing/joint compressions. Have you tried before bed? Does he have problems w/ dairy? The L-Tryptophan I think helped us the most for us. Neurologist recommended: yogurt, cheese and turkey. I prefer the Kefir over yogurt, it also has tryptophan in it.

They (pediatricians) tried and tried to tell me that my DD wasn't sleeping due to silent reflux. We finally went to a Pedi GI DR. He almost completely ruled it out. He said he couldn't rule out completely unless he did a upper GI. We decided against it. We also had tried the reflux meds...it MADE her spit up!!
And improved nothing!!
Since he has the feeding issues, I would lean more to a deficiency over reflux.

FYI my PEDI NEURO said the melatonin was completely safe. It was his suggestion. Like I said it didn't work for us. He always tries the natural stuff before meds. Melatonin might help if he is having a hard time getting to REM sleep. Which he must if he wakes as often as mine,
Does he struggle w/ naps? DD takes better naps than @ night sleep. But it took 10 months to get there. She takes better naps now than as a newborn.
At the time we saw the Neuro the 1st time she was taking 3 2 hr naps. I question whether or not I should cut out a nap. He is no because if she wasn't sleeping at night she needed the sleep. We are down to 2 2 hour naps.

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#14 of 43 Old 02-07-2010, 11:22 PM
 
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ADDED NOTE: DD also has issues w/feeding. She won't eat cheese or turkey. She will use a straw cup so......I mix the Kefir w/ formula (your case maybe breastmilk). We also but cereal in it as first so it was thick. Plus it added iron!!!! Kefir is also Gluten Free. I swear by the Kefir. NO I don't work for them !!! They have fruit flavors if you think he will do better w/ a sweet flavor to get his intrest.


I also get what you are saying about Western Medicine.
After having 6 "unexplained" miscarriages. It is just a fluke the stupid Dr told me. I saw multi Infertility Drs. I started w/Chinese Med and accupunture. Needless to say I carried DD to term!!!!

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#15 of 43 Old 02-07-2010, 11:41 PM - Thread Starter
 
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Showurhorns:

yep we do all the SPD "therapies". my 5yr old has it so it's kinda old hat to us now ykwim? you know though, now that you mention it I have slacked on the brushing thing for both of them. I always go joint compressions and what we call "sqeezies" but I kinda just forgot about brushing - who knwos why. I should get back to that! thanks for the reminder!

he can't do dairy... but i'm hoping to wean him onto goat's milk for some extra stuff my milk is not providing. funny you mention this b/c you know what I boguht at the story day before yesterday? GOAT KEFIR! haha too funny. I didn't realize it had L-Tryptophan in it though! I was thinking of finding a way to supplement this for him via pill form - I should have looked into that better. so I guess I should go ahead and give that a thought. (it's still in my fridge b/c I hadn't decided yet if I was gonna give it)

again though - my son does have reflux to some degree - but it's a symptoms just as it was for my daughter. they are almost identical (except we've kept him off of western meds for the most part which actually has done him pretty well. aside form his issues he's never sick from colds and such. my daughter was sick 80% of the time!)

thanks for your support

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#16 of 43 Old 02-08-2010, 02:33 AM
 
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Hey there, sounds as if you have a lot of info. just wanted to add that maybe making some turkey broths(tryptophan!) in a slow cooker with rice or barley or some other non wheat grain although barley maybe has some offending gluten stuff..for wheat intolerances. Fish oil, bone broths(tryorganic bones preferably just add water to bone and some seasonings, maybe add celery, carrots onion and sea salt for taste takes very little time and is cost efficient there are many recipes onlline, I have used boullion cubes a lot for taste but probably not healthy! Toddler loves just about anything I make in the slow cooker..whole family can eat it. Also if you are breastfeeding you can take green foods, magnesium and calcium for calming , sit in the sun for vitamin d and calcium absorption, and supposedly epsom salt baths can be calming and detoxifying? have not tried those yet, oatmeal also has some calming effects and is gluten free (can also be used in the bath but I was saying for eating!). Good luck mama!
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#17 of 43 Old 02-08-2010, 02:36 AM
 
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If the baby can tolerate lactose in a tiny amount, I think Calms Forte (homeopathic) may be helpful. You can even buy it at some Wal Mart/Target/Bilo/etc. I have used it w/both of my boys. I have also used Melatonin w/my oldest when he was the size of your lo. I have no problem giving it a try and would do it again in a heartbeat. He started having night terrors due to sleep deprivation...it was worth it! Plus, b/t him being premature, on an apnea monitor, needing to feed so often....plus a bunch of elderly dogs who peed a lot and one w/seizures....I hadn't had more than 2 straight hours of sleep in 4-5 yrs! LOL FWIW, I am quite comfy w/melatonin, b/c we've used it for so many years w/our animals for thunderstorm phobias, help w/seizures, etc. And I know what you mean about the meds, reflux, and food intolerances--we did that w/both of our boys, too. Hang in there!

Best wishes mama!
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#18 of 43 Old 02-08-2010, 09:57 AM - Thread Starter
 
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thanks. we do bone broths every week actually we're huge fans of bone broths! that said, my 9 month old isn't eating any foods yet, I'm not so sure bone broth is the best thing to start with. I'll have to look into that one. hmmm...

mrsfru- thanks for the support

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#19 of 43 Old 02-08-2010, 04:54 PM
 
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laura, first of all, so sorry to hear about your sleep struggles. i did (and still do) relate 100%. it's a bit better, but, wow, 3.5 years is a lot of sleep deprivation. i hope whatever you choose works well for everyone .
i haven't read all the comments, but wanted to say a weighted blanket has been good for my dd, as has melatonin. it doesn't help with waking, but does help her get to sleep. epsom salt baths seem to help, but ca/mg didn't help a ton. if you have any hesitation about melatonin, what about valerian? is that considered safe for babes? last thing - do you swaddle? i swaddled my daughter until she was about 6 months, and at that point, my mom was so insistent that babies shouldn't be swaddled for too long . more than anything, i wish i'd listened to my gut on that one. dd really resisted it, but i think swaddling would really have helped he settle her body.
again, you have all my empathy! i hope it gets better - soon.
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#20 of 43 Old 02-08-2010, 05:37 PM - Thread Starter
 
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we swaddled until he was 5 months when he refused to be swaddled anymore. he likes to sleep on his stomach now. I can't really swaddle against his will! heh

valerian? I havent looked into it really.melatonin was a huge step for me - I'm not crazy about giving a nine months old too many things to begin with. I'll look into it though.

thanks

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#21 of 43 Old 02-08-2010, 07:41 PM
 
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Valerin was also recommend to us by the Neuro. I forgot about that one. We didn't try it as he didn't give me the dosage. We are also going to try a weighted blanket... we have one being made.

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#22 of 43 Old 02-09-2010, 11:43 AM
 
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I would be less concerned about valerian than melatonin, fwiw -- valerian is a food supplement, whereas melatonin is a replacement hormone. There is some evidence that overuse of melatonin can reduce the body's ability to make its own; I'm not sure how age affects that.

That said, you've got to get more sleep, so extraordinary measures are called for, certainly. Hope you figure out a way soon!

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#23 of 43 Old 02-09-2010, 10:30 PM
 
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Are you seeing a DAN! clinician or all traditional docs? I ask because their is a lot that can be assessed via poop, pee and blood that traditional docs don't do.

Have you eliminated foods from your diet to see if they are affecting the milk - for me asparagus and apples killed my kiddos stomach. It can take a bit of time to discover but it truly sounds like a gut/reflux issue. That would account for hating to be swaddled -pressure on the intestinal sides and why laying on his stomach - pressure on the front would be soothing to a degree. What reflux meds is he on? Many have sleep issue side effects - have you checked with the company or their website?

I believe Kellysmom.com has the most common food allergy list that passes through the milk. Another thing to consider - are you taking meds? Could that be irritating the stomach, intestines, esoph, etc...

You mentioned you have another SPD? Have you tried the GFCF diet for yourself - this might relieve the discomfort to the baby as well.

I would suggest Baby Bliss Gripe Water - found at Babiesrus, Walgreens, CVS, Whole Foods, etc....it is all natural, can be given under the age of 1 and natural relaxes the bowel and aids in digestion. IT worked wonderfully for our kiddo. We even kept a syringe drawn at night for when he would awake - 20 minutes later sleeping beautifully.

Goat Milk is not a great alternative to breast. It contains the same casien protien that cow's milk does - big cause of bowel issues. Did you know 85% of adults can not tolerate cow's milk. Consider organic rice milk as an alternative. Do organic - the pesticides used on rice are off the charts horrible causing their own problems in the body.

I would see a DAN! clinician if you are not - they have helped my son almost to a recovery in a year. Check with the Autism Research Institute for the list or GenerationRescue.com. It is also a great place to find a guardian angel who has a wealth of knowledge and experience(mostly moms with SPD kids).

Good luck with the sleep stuff?

Linda
Warrior Mom to Nick and 3 more rockin kids!
p.s. what about a pill cam?
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#24 of 43 Old 02-09-2010, 10:46 PM
 
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nak, so sorry for terseness, but we've had luck w/ this:

http://www.herbsforkids.com/product.asp?productid=377

mom to one glorious sweetpea born 10/18/2007.

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#25 of 43 Old 02-09-2010, 10:51 PM - Thread Starter
 
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Linda,

I'm celiac so I've been GF for years. I've also been on the elimination diet for MONTHS. I have a very small window of food he can tolerate. we food journal and all that jazz.

see the thing is, the ED helped him a lot. he was SO much better... and then he started beomcing intolerant to foods I could previously eat. and I'd cut them out and he's become intolerant to more.... until I was eating like 8 things for months. and it started to take a serious toll on my health having so little food so I started added things back in that only seemed minorly bothersome. it almost seemed that the less I ate the worse he got.

I'm GF/CF/SF and really much more. I'm off of gluten, dairy (all forms and animals), soy, corn, legumes (aside from PN which seems to be fine for him but i rarely eat it), most varieties of squash, all fruits, all berries sans cran and blue, all fish sans fish oil which I added back b/c it didn't seem to bother him any more or less), caffiene, chocolate, sugar (I only eat honey), cauciferous except asparagus and fermented sour kraut, all nightshades oh gosh.... and some other stuff I can't think of off the top of my head right this moment.

it's gotten to the point i can hardly eat a thing! my milk was drying up etc... I had hoped taking foods out would help but it only did so minimally. still though I stayed off of them b/c any help i good help. what I DO eat I have taken out for a while and retested to make sure it was ok for him.

I actually don't see traditional docs b/c in all our years of special needs kids one has NEVER helped us. so we holistic doctors. our son has only shown up a couple of things as "allergic" or "intolerant" but b/c of his reactions after I eat them I took many things out anyhow. if I ever try a bite of anything dairy or soy he immediately starts puking and crying (instead of just fussing) so I NEVER cheat on my diet.

honestly, if I were you all my first thought would be *just* reflux too.... so I really understand that. but I've had 3 kids with varying degrees of reflux. he DOES have it to some degree for sure (he's stopped spitting up as he's gotten older but he has the other symptoms) but he doesn't respond to reflux treatment.

he was getting adjusted weekly but it wasn't helpin at all. we see an AK chiro which is aweful bu he just wasn't able to keep him well so we stoppe wasting the money.

I don't do traditional meds only b/c I have never had any luck ith them. my daughter was on ever type of PPI, and good grief - every folk remedy for that matter. none made a lick of difference. infact I really think it just aggrivated the problem more. she SCREAMED 24-7 til we realized she had SPD and we started treating her and she stopped having reflux almost right away. I treat my son with the same therapies and what not nd he doesn't ever scream, but he wakes constantly and fusses more than not.

hope that gives a better insight on what I do and don't do. I'm only asking fo help here b/c I feel I've exhausted every other method I can think of right now.

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#26 of 43 Old 02-09-2010, 10:52 PM - Thread Starter
 
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nak, so sorry for terseness, but we've had luck w/ this:

http://www.herbsforkids.com/product.asp?productid=377
no problem I'll try just about anything right now!

BTW, he's now teething (Again!! it seems he's always cutting teeth) so now he's back to not sleeping at all. ugh. it's making those 1.5 hrs he usually makes it through the night seem like vacations now!

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#27 of 43 Old 02-09-2010, 10:54 PM - Thread Starter
 
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I would be less concerned about valerian than melatonin, fwiw -- valerian is a food supplement, whereas melatonin is a replacement hormone. There is some evidence that overuse of melatonin can reduce the body's ability to make its own; I'm not sure how age affects that.

That said, you've got to get more sleep, so extraordinary measures are called for, certainly. Hope you figure out a way soon!
thanks! I will take that into consideration for sure.


my only thinking is that if he has a melatonin issue perhaps it would help if he took the supplement. Herbs I think have their place but valerian may induce sleep, but it wont fix what makes him nto sleep ykwim?

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#28 of 43 Old 02-10-2010, 01:35 AM
 
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So is it more than reflux?? You mention taking so much out of your diet and your milk drying up - is he hungry because of this causing the bile to be an issue? Just thinking out loud. I was trying to breastfeed our adopted daughter with not enough milk supply and it was killing me and making her starve = sucks...

You have done tons. If it were my kiddo, I have a vaccine injured Autistic and my husband is a DAN!, I would check out Thoughtful House in Austin- my understanding is they do amazing work with the gut, pill cam, etc... I think taking a look inside is needed at this point to make sure their is no obstructions or anything was formed incorrectly, for a lack of better terms as I am so very tired tonight. Have you all done the poop tests to check for yeast, strep, etc... or blood and pee work for metals, metabolism, etc...??

I still swear by the gripe water and see if that helps. Nick was thrashing at night when we took him off of glutens and that worked miracles. What is the reflux med?What about liquid enzymes? Do you compound your scripts and ibuprofen? Amber teething necklaces rock also. Sorry brain is working faster than hands...

Does he drink from a bottle? Can you get some milk from mom friends to see if it is all breast milk or yours, so you can get yours tested - again thinking out loud...

Hope the ideas are helping and not frustrating, trying to think outside of the box,

Linda
Warrior Mom to Nick and 3 other rockin kids!
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#29 of 43 Old 02-10-2010, 02:08 AM
 
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Reflux that doesn't respond to treatment and seems to be diet related are hallmarks of eosinophilic esophagitis http://www.apfed.org/ee.htm That would also explain why you keep losing more foods (and allergy testing isn't helpful with this in my understanding either). Just read up on it and see if it fits....it might give you a different direction for helping all your kids.

Rachelle, mommy to 8 year old boys! 

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#30 of 43 Old 02-10-2010, 03:05 AM - Thread Starter
 
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Reflux that doesn't respond to treatment and seems to be diet related are hallmarks of eosinophilic esophagitis http://www.apfed.org/ee.htm That would also explain why you keep losing more foods (and allergy testing isn't helpful with this in my understanding either). Just read up on it and see if it fits....it might give you a different direction for helping all your kids.
thanks... i've been thinking about that for some time. i wanted to rule other things out first. since my daughter was exactly the same way as a baby but can now eat foods fine i was leaning towards that not being his issue. so it was on the backburner for a while while i tried other things.

i have no insurance.... how do i go about getting him teated for that? i'm not sure where to start and to be honest I'm SO tired I can hardly think straight! I know that sounds dumb but I feel too tired to try and figure ths out, and yet it's my only option.

the thing i don't understand is he is exactly like my daughter who has SPD (and we think something else undiagnosed) he doesn't seem an severe as our daughter in some ways (he fusses instead of screams and he it hitting milestones - where as she was regressing by his age pretty badly). I don't know how eosinophilic esophagitis fits in there. she had an endoscopy and it showed nothing. she had poop tests too (as did my oldest) which showed nothing. as the GIs just looked at me like I must be making it up. (more than one even implied it!) b/c they couldn't find anything physically wrong with her.

this is why i can't seem to find what tree to bark up! and frankly it's costing more money than I have available to treat him. I adore this baby boy, and I would do anything for him.... unfortunately money makes things happen and I don't have much of it =( this specialized diet already costs and arm and a leg. yk? what do I do? really? I have no idea. and i want him to get better, not worse. it's breaking my heart!!

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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