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post #41 of 102
You sound like a wonderful mamma.

Ditto re: The Babywearer being a wonderful resource for information on carriers. There is a huge difference between ease of use and comfort in types of carriers - if you're holding her you might as well make it easy on yourself. I'm optimistic that you'll find something that works. My ds didn't like carriers when he was your daughter's age but now that I've shoved him in so many times he's gotten used to it and he uses it as an opportunity to scope out the world.

If you live in an area with a NINO chapter (Nine In, Nine Out) my understanding is they have a 'library' of carriers for people to try.
post #42 of 102
I completely agree that this sounds strongly like a health issue vs. a high needs or sleep issue. Doctors really drop the ball on cases like this because they don't want to admit that they don't know, so they say nothing is wrong- second (and third, and fourth) opinions cannot hurt. I agree w/ eliminating rice, I've heard of babies reacting to that as well.

I know you are completely and utterly exhausted. I hear what you are saying, and I understand why you are desperately wanting to try anything that could alleviate some of this misery. However, I think CIO has the potential to actually make some of this worse. Right now, your baby trust you, as evidenced by not wanting to be held by others. She believes in you to give her what little comfort you can. If you take that away by leaving her alone to cry, she has no one. As horrible as this is for you, it may be even worse for her, as she is operating off not only lack of sleep but, probably, pain. I swear that I am not trying to guilt trip you, and that if your post had not strongly suggested health problems, I wouldn't begrudge you whatever you needed to do- hell, there have been times that I literally could NOT pick dd up because I was so unbelievably exhausted that I was in a state of semi-consciousness and therefore she would cry.

there is something going on in her immune system. Thank God you have not vaxed her. Someone out there must be able to figure this out for you and her. Do the best you can. That's all anyone can ask of you.
post #43 of 102

good idea

This is a great idea. Keep yourself sane, get some nappy time for yourself! And good luck to you. I feel for you. My dd was the same way, but without the fist pounding. It turned out to be partly allergies. She is still high needs, but I find if I keep her on schedule getting her up early in the morning (as in 7 or 8am), she sleeps much better at night!

Good luck Mama! Hugs to you!

[QUOTE=alegna;7207906]Something else that I think is important is- you need a break. Can dh take a little run at night where he's in charge and you can sleep? (maybe he's even in charge of latching baby on as needed) Or can you have a friend come over during the day or a baby sitter or even mother's helper so you can get even an hour's nap? Really, you need a break- so that you DON'T break

Maybe dh or another loving caregiver can take her for a long walk or drive just so you can re-claim some sanity.

good luck.
post #44 of 102

IMO, there is a huge difference between walking away from baby when he/she is crying, and being there while he/she is crying, giving that loving assurance in other ways.

There was a time a few months ago when my back was absolutely killing me (later realized it was caused by me akwardly picking up my 4-yr-old every night to transfer her to the other bed). Anyway, I physically couldn't take the strain of nursing LO constantly through the night. For the few days that my back needed rest, I sat on the couch to nurse him to sleep and rocked and swayed DS and I got some shut eye. I did restrict the nursing to a few minutes a side, because he's a marathon nurser and eventually my back would hurt again. He cried off an on during those three nights, because it was so different for him, but I also had to do what would help me out. Whatever crying he did was all in arms though (I still felt so sad ). I spoke to him softly. Told him I loved him. Explained to him the situation as easily and simply as I could.

I don't think he was psychologically hurt from that. My loving arms were always holding him. He was just shy of 2 years at the time.

Don't get me wrong, I'm not advocating letting babies cry, but I just wanted to offer my perspective, because while many people use the term CIO, they might just mean crying-in-arms or something similar. (I'm not sure this is what OP meant though?)
post #45 of 102
Unfortunately, I don't have any advice, but I do want to let you know I think you're an amazing mom! I wish you and your baby the best.
post #46 of 102
Have you tried putting your mattress on an incline? I know it would take some getting used to, but if she sleeps better it could be worth it.
post #47 of 102
Thread Starter 
Originally Posted by mamaverdi View Post
Start with this: www.pediatrix.com Call them up. Get them to send you the screen. You can do it yourself. Then you need a doctor to sign off on it.

Then whether or not it comes back with anything, you need to see a metabolic geneticist. Your child is barely tolerating anything in your diet. You posted before that you were losing weight.

I'm appalled that at the very least your ND and your GI haven't referred you to a metabolic geneticist.

I would also get a sleep study and an EEG.

A half way decent geneticist should know what to order. I can refer you to one in Boston and one in Arkansas if you can travel to those places. I believe you are in WA.

You are going to need to get blood and urine run. I know it hurts her, but it's going to hurt her more all of this being untreated.

Stool samples are NOT going to tell you what is going on with this level of extreme.
Thank you for this. I looked on that website, but only saw the heel prick test. She had that done a couple days after birth and the results were fine. We also added the optional additional testing onto it. Was there something different?

I have an order for an x-ray for dd that I have been putting off. You see, somedays she acts fine; fussy, but fine.
She hasn't done one of her screaming/crying episodes since she was 3.5 months, where they were happening daily. So if there really was something anatomically "wrong", why would it come and go?

Yes, I agree that something is wrong with sleep, but I've also talked with other moms of high needs babies, and all their sleeping sucked. So it's hard to tell if it's just how she's wired, or if there is something wrong

I wondered about the esophagitis and even did some research on it, but it was dismissed by her ND. I agree that we need to start seeing conventional dr.'s now. She is thriving weight wise. She appeared to have reflux (silent) only when I ate a certain "bad" food. But when I stick to the diet, she's fine.

So I guess it's confusing why she can have a stretch of "good for her" days ( with better sleeping too) and why some days just suck and the nights are horrible. I've been expanding my diet, but write everything down and her reactions. Nothing is consistent anymore. When she has a bad night, I could have eaten the same food as on a good night.

See how I could be confused? And you're right, I agree that even though the testing would be painful and psychologically hard, it's worth it if there is something wrong. There's just this little thing in the back of my mind saying that it's not necessary because she can and is good sometimes.
post #48 of 102
Thread Starter 
Can't reply to everyone's individual posts, but I just wanted to say thank you for all the support. I haven't been able to update because of another REALLY bad night and yesterday I was a walking zombie and couldn't even see the computer screen. It was scary!

Here's what we did:

Dh forced me to let her sleep in her own bedroom in a baby hammock I had made her (it's a flat surface, but can swing for motion). I nursed her in the rocking chair, she fell asleep after I stuck the paci in her mouth and I gently layed her in it. She woke right up and I couldn't get her back to sleep. She was exhausted too with hardly any naps that day.
So I start bawling because I know how hard it is going to be to continue doing that all night (this was on 2 hours of sleep in the last 24 hours) and dh came in and rocked her/walked her for the next 45 minutes while she screamed and screamed. I knew all she wanted was me, but I couldn't handle it anymore. I was so tired and so mentally out of it that I was afraid I would snap and just start screaming
So she cried, and I cried. I got on the phone with my mother and just vented. It was a horrible night.
Dd finally fell asleep and stayed asleep for 4.5 hours. I'm sure it was out of exhaustion from the crying and I felt so bad even though dh thought it was a victory...

I couldn't sleep without her by my side. I tried and tried (I certainly have insomnia now because of the lack of sleep and wonky sleep schedule I'm on now) and I finally fell asleep and 5 minutes later she was awake. So I go in, take her out, nurse in the chair, and she's WIDE AWAKE. She thinks it's time to play because I took her out of her bed. So I said "screw this" and brought her back to bed. She slept for 3 hours (the only sleep I got that night) and then was up again. This time she was up for good and wanted to play. I started bawling again, so dh came down and took her back into her room. She cried and cried again, but fell asleep after 20 minutes. He said he rocked her and sang to her. I had a white noise machine going in my room and all I could hear was a baby crying and choking and gagging..it was horrible! All in my head too...but I heard it and I couldn't sleep. She slept for two more hours and that was it. Then she was up for the day.

I had 9 hours of sleep in 72 hours. Eeks! I was so out of it yesterday and today I'm the same. I couldn't even take care of her. It was not fun.

So last night I took her back in bed with me and she slept better. She didn't nap yesterday except for 2, 20 minute naps. I couldn't believe it.

Today she was up at 7 a.m. and has only slept for 10 minutes in my arms. It's almost noon now too...

I don't think it's rice, as I had it last night for dinner and she slept better last night than all week.

Potatoes? Possibly. But I sure hope not. The only other carbs I can have are millet, wild rice, and rice.

I just hate the fact that I may have to drop MORE foods out of my diet. I honestly don't think my body could take it...
post #49 of 102
I noticed you're eating rice. A warning about rice milk... if you're using the enriched kind, the 'enriched' part of it comes from corn. I have found that I can drink the regular rice milk no problem, but if I have the enriched stuff, my son has a whole lot of problems. I don't know if this is happening with you, but I thought I would point it out just in case. It took me forever to figure out, for the longest time I thought he was reacting to rice.
post #50 of 102
1) There are over 1500 metabolic diseases.

2) Yes, even with anatomical problems pain etc can come and go.

3) A naturopath is in NO WAY trained or qualified to diagnose EE.

4) It is in NO WAY normal to have limit your diet to that few of foods. If you know what the problem is, it can be treated.

5) No one expects you to be a doctor. I don't see how you wouldn't be confused. 9 hours of sleep in 72 hours has me crying and ready to have a nervous breakdown. It's not SAFE for you or your baby to continue on believing that your baby is just "high needs."

You need to see just to start with an MD pediatrician, an pediatric neurologist, a pediatric metabolic geneticist, a pediatric gastroenterologist, and an occupational therapist.

And Yes, being pediatric makes a huge difference.

Please get help for yourself and for your baby.
post #51 of 102
scary flashbacks for me about dd1. your dd is hurting, so she cries and wants only you. it's so hard. but if you CIO you probably know she'd cry until she barfs, cry all night, and then look at you as though you'd abandoned her. or refuse to look at you, like my dd1 did when i first went back to work when she was 5mos.

i did vax dd1, one of my great regrets. she had some signs of allergy problems before her 4mos vaxes (fussy, digestive probs, mucus/green stools, constipation/diarrhea, projectile vomiting, runny nose, nap only attached, often just 20min...), but she only woke 3-4x/night, nursed briefly, let go and slept. then days after that second set of vaxes she became like your dd, she only slept attached, and i couldn't sleep through it. (and i didn't realize the vax connection until i read my first mothering mag a year later). i recall days where dh fed me because only i could hold her and i had to hold her upright and couldn't manage to eat soup. i hallucinated. dh and i fought. i started elimination diets...

so what can i say to help... so much good advice already!

one thing is your brain adjusts to sleep deprivation after a while. when dd1 was little i remember being a basket case after days where i got 3 hours of sleep, now, years later i can function pretty well on those days. and did much better adjusting to it again when dd2 came along. i know hearing the word "years" associated with sleep deprivation is terrifying, but it gets easier, it really does.

i think i've seen your name before, maybe in healing the gut? if not, go to health and healing, start reading/posting. if you and dd both have leaky gut issues, she will continue to develop new allergies to the foods she gets the most exposure to. so if you've been eating those same ?8 foods for months, they may not be "safe" anymore, and other "unsafe" foods could be added back in, a little at a time, without her reacting. my dd1 was great when i went on the turkey, lamb, rice, millet, yam, zuccini, ?,?, diet (13 foods) for about 3 weeks, but it got bad again until i was back to square one by 5 weeks. so i'd look into trying other foods for a while, that she's never been exposed to, like amaranth, teff, quinoa, buckwheat (grains), leafy veggies (kale, bok choy), meats you don't usually eat (?rabbit, deer, bison), and then go for as much variety as possible to limit the dose of any one food. but keep the biggies gone: dairy, wheat, soy etc., for a long time.

i know the most confusing thing is trying to figure out why there are good and bad days. for us it was complicated by my working 1-2x/week, so dd1 was getting 3-4 week old frozen pumped milk on those days, and often did better or worse, and i'd have no idea if it was something i ate that day or a month ago. do you ever pump and store/use your milk?

look into NAET. it's an accupressure technique that's supposed to "reset" the body's response to offending foods/substances. but if your gut is still "leaky," then it may not help until after you improve that.

a common problem associated with leaky gut and allergies is yeast. you can look here for info, see if anything seems like it fits. http://www.yeastconnection.com/

probiotics. i hesitate to recommend a brand, because they have fillers (corn, potato, silica!), or residual dairy proteins, etc, and i don't want to make things worse. but look in healing the gut and people there can tell you lots about different brands and help guide you. both you and dd take them.

and last but most certainly not least, try supplememting with minerals. both for you and dd. you can add them to a little expressed milk, or water, by spoon if no bottles are used. you know your nutrition is compromised after such a resricted diet. i've been reading momtezuema tuatara's sticky in the vax forum, nutrition and immunology 101: http://www.mothering.com/discussions...d.php?t=406983

so i got inspired to start adding trace minerals to our water jug. it makes sense, and i feel more energetic yet calmer now, plus less hungry/"snacky" and lost almost 5# in the month. cheesy anecdotal testimonial, but minerals might help. they shouldn't hurt, since they're not food based. i've been using this: http://www.traceminerals.com/products/drops.html
post #52 of 102
one last piece of advice- the insomnia thing. brainwash yourself to have one zone-out stream of thought. for example, a storyline in a book or tv show, one that isn't too interesting, so you can't think too much about it, and FORCE yourself to only think about that one subject, over and over and over again, and do not allow yourself to toss and turn, find one comfortable position and stay there.
sounds weird, I know, but it's the only thing between me and a crappy night's sleep when my circadian rhythm is all out of wack like yours must be.

but just think- you slept like crap- but SHE actually slept 9.5 hrs, which isn't too shabby. I know, cold comfort!
post #53 of 102
I'm so sorry you're having to deal with this. It sounds awful. I agree this is not just 'high needs' or even 'needing new sleep habits' - this is an undiagnosed health issue that none of the specialists you have seen yet have found.

If it were me I would pump some milk and leave her with someone trusted (dad or grandma) to finger feed or something for 4 hours and get some sleep somewhere silent and not in the same house as your dd. I might even do it for 6 if my health were at the point of severity yours is. And I might do it more than once until I am at a point of sanity. Know that your dd will not die nor suffer severe psychological damage from a 4 hour stint with her other parent. In fact, my dd learned to let daddy comfort her after a few episodes like this. It takes time and they have to learn their own dance together. And a hallucinating health failing mother is not helping her dd. Let her learn to be soothed by another adult who is just as committed to her as you are while you preserve your life and mind. Give yourself permission to have a break. Put yourself in a position to not be able to hear her crying. You're living on adrenaline. It will be hard to shut down! Maybe schedule a masseuse to come in and help you get relaxed to sleep. You HAVE to get more than 30 minutes of sleep at a time!!

The thing I think you may need to let go of is that *you* can solve her issues. It is really not something you likely have the expertise to do with the severity of symptoms. You need someone who will take you seriously and not just call your dd 'fussy'. It's way beyond that. I've had friends with special needs kids that had to tear up a warpath to find experts that could really diagnose and treat their children because entry level docs didn't 'get it'.

So in summary:

a) you need to take care of yourself - just a little bit.
b) you need experts that understand and can give solutions! This is a health issue! Something is not right!
post #54 of 102
mum2be- how are you doing? i was in your ddc...back before all this : ...hope you are staying sane!! i read your post and had to let you know that you aren't alone. i am going through the exact same situation here with ds #2. we have been to the dr so many times. friday is the allergist/asthma doc. there just has to be an answer. babies need to sleep sometime, don't they? never did i think living off of 2 hours of sleep a night was posssible. it is becoming worse and worse. if i had some advice or answers, i would totally give it up. but unfortunately, i have none except for go easy on yourself. do what you have to do to survive and stay sane at this point. sometimes, i am so tired that i just hold ds in our bed while he cries and i doze off in and out. but he doesn't want to nurse or anything....just cry.

so, i just hold him, love him, and do what the moment calls for at this point...oh, and i cry a lot.

i will say a prayer for you and your family.
post #55 of 102
Originally Posted by mamaverdi View Post
1) There are over 1500 metabolic diseases.

2) Yes, even with anatomical problems pain etc can come and go.

3) A naturopath is in NO WAY trained or qualified to diagnose EE.

4) It is in NO WAY normal to have limit your diet to that few of foods. If you know what the problem is, it can be treated.

5) No one expects you to be a doctor. I don't see how you wouldn't be confused. 9 hours of sleep in 72 hours has me crying and ready to have a nervous breakdown. It's not SAFE for you or your baby to continue on believing that your baby is just "high needs."

You need to see just to start with an MD pediatrician, an pediatric neurologist, a pediatric metabolic geneticist, a pediatric gastroenterologist, and an occupational therapist.

And Yes, being pediatric makes a huge difference.

Please get help for yourself and for your baby.
: I have been following your story and what you describe seems a lot more severe than just a high needs baby. I absolutely agree with Mamaverdi that you need to get some help for your baby.

Please take care of yourself and your baby.

post #56 of 102
This sooo sounds like my sweet refluxy baby before he was on his Prevacid. Even now WITH the meds, and me being on a crazy diet, his poop is weird. BUT he's much happier than he was and I think the weird poop will eventually decrease as his gut matures (he's almost 6 months).

THIS WILL NOT LAST FOREVER. It feels like it now, but I promise something will change. I didn't think reflux could cause all the problems my son had, but it sure has been the root of most of them.
post #57 of 102
I hope you are doing well and wish you luck in finding the solution to all this. I have a 6 month old who usually sleeps for 20 minutes at a time at night. : I know what you mean about exhaustion but also wanting to be there for her. I find that I cannot rest or relax unless I know that she is okay and happy. Dd has had some good nights (only waking 5 times) and then the bad... The only medical issues she is having is reflux (not bad enough for meds according to ped) and intolarance to cow protein. It is still confusing to me I just know I cannot eat anything that comes from a cow for now. Dd will not take a bottle and still nurses every 2 hours so I cannot leave her with anyone. I started co sleeping recently and that helped for a night or two. As far as CIO goes I did (as pressured by dh and ped. to do so) let her cry one night, but she only cried for 5 minutes and then started banging her head so that was the end of that. I do not reccomend this at all! I would not be able to forgive myself if I had gone that route even if it did work.

I just wanted to let you know that I feel for you. It is an awful feeling to be frustrated and mad at your baby. I hate those nights. The only thing that has worked for me is givng up. I certainly don't reccomend this until you are positive that there is nothing medically wrong with her. I have no more plans or methods I just do what it takes to stop the crying and get her to sleep. I lie to myself about how much sleep I get and I no longer count how many times she wakes up or look at the clock during the night. In fact I took the clock out of our bedroom because the truth of how much uninterrupted sleep I got hurt. I try to nap when she does which includes napping with my feet proped up and holding her. I think my body is starting to adjust. This is probablly not good advice but it has worked for me. There are days that seem unbearable, but sometimes when I get to that point it is like she gives me a good night or a long nap. She has taken a couple long naps today and I layed down for an hour and then shot up because I thought she must have died in her sleep. Does that ever happen to you if she sleeps for awhile? It is like you are so not used to it that you suddenly wake and check on her thinking she died. Ugh I can't even sleep when she does!! LOL

I wish you the best of luck with everything. It is so hard to go through this especially with ppl (or dh) nagging you to let her cry. You know in your heart that is not the answer. Just try to find the good. I always tell myself that at least she wakes up. I would rather her be a light sleeper and wake if she stops breathing, then be a heavy sleeper and one night not wake if she stops breathing. We do have an appointment for dd at a sleep medicine and research center in March. I seriously hope that you are doing much better by then, but if not I will let you know if it is worthwhile. Let me know if you ever want someone to vent to!!
post #58 of 102
Just another thing to consider.

My daughter has Sensory Processing Disorder and now that I understand it and have learned from it, I believe that alot of her sleep issues, not as severe as what your daughter is experiencing, but very similar, were from this. The exhaustion she has only makes it worse.

I know you are so very exhausted, and it is hard to function at the basic level, but consider talking to an occupational therapist that specializes in Sensory Processing Disorder. A pediatrician could hopefully point you in the right direction.

Hugs and best wishes.
post #59 of 102
I was thinking too that she sounds like a kid who is over stimulated in some ways. Where do you live? In the United States we have Early Childhood Intervention programs
post #60 of 102
For information about Early Childhood Intervention in Maine...

Maine Parent Federation - 1-800-870-7746 (in-state only) or (207)623-2144
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