Severe sleep situation and am completely at a loss (likely to be a Long post....make coffee)

[DeChRi]

I am mama to 3 girls, 12 yr, 3 yr, and 16 mnths, and with #4 (and maybe #5...2 sacs at 6 weeks) due in April.  We have always been a cosleeping, extended BF, baby wearing family.  Our 3 yr old weaned at 2.5 when #3 came along.  She slept with us until this last year...she starts in her bed, and sometimes sleeps all night, sometimes comes in our bed and cuddles in. 

Enter #3.  She was born with eosinophilic gastrointestinal disease, which basically causes her immune system to see protein chains in foods as pathogens and sends white blood cells (eosinophils) to attack.  Her first year was spent in pain, screaming 16-20 hours a day. Sleeping 20 min spurts around the clock.  I eliminated all but 3 foods from my diet, cycled those, desperately trying to keep enough protein from my diet to stop her pain, vomiting and GI damage.  We drove out of state to specialists to get the best help.  She ended up having to live on an insanely pricey prescription amino acid powder as her soul source of nutrition.  This allows her GI tract to heal, and symptoms to subside.  My 3 yr old was diagnosed with a less severe case and thus far she is managed with a diet free of dairy, soy, corn, egg, wheat, beef, citrus, nuts and fish.  We tried every natural thing we could with DD3, but this is just not a natural condition.  They react to natural flavor, but not artificial.  Cant do probiotics without being sick, etc.  We kept getting well meaning advice about "healing the gut" all that, but this disease is a different beast.  She was on PPIs, Atarax to help the reactions, antispasmotics, etc etc.  She has never, in her life, slept more than 30 min straight, since 4 weeks. 

She is 16 months now, trialing 6 foods after spending a week at a hospital in another state at an eosinophilic disease center getting tests and help.  So far so good. In theory, her disease is controlled.  They did diagnose her with some sensory issue, but not severe...like she must be moving 21 hours a day, she is unable to be comforted.  She was just scoped top to bottom and GI tract is healthy.  We have removed ALL medications.  At one point the were giving her meds just to try and make her sleep a spurt, and it didn't even TOUCH her.  So she is med free now.  We are doing OT for the sensory stuff.

She wakes every 5-20 minutes, all night, every night.  Sometimes it is restless. Sometimes she seems uncomfortable.  Sometimes she wakes screaming violently and I am unable to calm her, sometimes she just wakes and will reject sleep at all costs.  It is like being Still is the most uncomfortable thing on the planet for her.  We have weighted blankets.  We have coslept., side-carred, tried melatonin, magnesium, etc.  I reread and tried No Cry Sleep Solution.  I have not slept a 2 hours stretch in a year. I am not safe driving my kids around.  I have had to quit my part time consulting job.  I have lost 20 lbs and was a low weight to begin with. I was on SSRI until this pregnancy.  

There is Nothing I will not try at this point.  Not only have things not worked, but they have not even made a minor difference.  What is broken here?  I am completely unable to function and take care of myself and my family.  And with the prospect of the new baby/babies, I am petrified.  When she was 6 months I thought "wait until 9 months", then a year, now she is 16 months.  We have tried letting DH do night duty, but she cries, literally, for 8 hours straight....vomiting, waking the other kids, and me.  She seems to lack an OFF button that other kids have.  There are days that she sleeps maybe 5-6 hrs total in 24 hours.  Naptimes are 2x a day (tried one, but she literally is so tired she can hardly function) and we spent appx 2-3 hours before each one screaming and carrying on.  We do the routine, dim lights, bath, massage, music, quiet, etc etc.  She may as well be at a disco.

My other 2 girls were not great sleepers and I have tried a lot with them to get them to be the great sleepers they are now.  But I have absolutely nothing left at this point other than setting her in a crib, walking downstairs, shutting the door, and praying it all ends.  Which won't happen, because, well, I guess I am not programmed that way.

Anyone?  I am really open to anything at this point. 

[DeChRi]

Well crap, I am thinking this is hopeless, lol.  :)

[LynnS6]

This board moves pretty slow... so don't despair. Have you posted in Special Needs? There are some experienced parents there with kids who also don't sleep for medical/sensory reasons.

The only 2 things I can think of are:

A hammock to sleep in? (I honestly don't know if it's safe at 16 mos.)

A sleep study -- is it being still that's causing her to wake, or does she have sleep apnea?

[its_betty]

Just wanted to send a virtual hug. This sounds so hard.

I'm sorry that I don't have suggestions for helping your daughter sleep. I don't know if you've tried having her sleep upright (like in a car seat) or upright and moving (like in a baby swing or one of those vibrating baby seats)?

You sound like you really need a solid several hours (really, days) of sleep for yourself, your baby or babies to be, and your family. Can you get away when someone else who loves your kids can be there with them (dh or a friend or a family member)? Even hire a nurse to help. Go to a hotel or a friend's house and just sleep. You could go during the daytime if nighttime is really impossible. Yes, it may not be fun for everyone. But the current situation isn't fun, either, and you need sleep so that you can function and take care of your family and yourself.

[Parker'smommy]

wow....that is so much. Hugs, momma!!!!

I wish I had some words of wisdom, but I totally second the advice that YOU need to get some kind of sleep somehow, someway. I think you will be better equipped to helping your child with this, if you, yourself are well rested. AMD....the babies you are now carrying, need a momma who is rested too. 

What did the doctors or specialist of her disease say about her sleep issues? Are all kids with this disease like this? 

Good luck, sweetie. 

[libbylovely]

This is my two cents.  You may or may not have heard or thought of all this before. 

I would go and see an American Herbalist Guild certified herbalist, or one with a good reputation in your area.  

I am not clear exactly on what your kiddos can stomach exactly, so it may become a trail and error process, but herbalism will approach this from many different angles.  For instance, tulsi (or Sacred Basil) is an adaptogen (or an herb that helps the body cope with stress better), it tastes mild and okay for kiddos, and would be one herb that I would recommend for your girls.  It would nourish their nervous system, and help them to handle the stress of this disease better.  That's just one example of how an herbal approach can be manifold and help the underlying problems, not simply the symptoms.  But I would consult a registered herbalist and see if there is something there.  As far herbs go and taste with kids, it can be a trial and error thing, but there are syrups, hiding it in foods, yummy teas, mixing it with black cherry concentrates (not really sure if these natural flavors are out of the game).

you are in my prayers!

[sundaya]

You poor thing! Hugs!
The first thought I had is that maybe her nervous system is missing something it needs....essential fatty acids, fish oil, flax oil, cod liver oil, something along those lines. All of which I realize she might not be able to take.

This is NOT natural at all, but....you didn't say what meds you've tried for sleep. Is it possible to try something stronger? Not forever, mind you. I'm thinking that she might just be so sleep deprived that sleeping just isn't possible for her at this point. I guess what I'm thinking is to use something to get into a pattern of sleeping for a few weeks, and then gradually wean off of it. I normally always go the natural route, but if you've tried all of that, then you have to do something to get some sleep for her, for yourself, and to protect your health and that of your new babes.  Also, please please make sure to take care of yourself if you are off your SSRI's.

I hope you find something that works soon.

[stormborn]

 Is there any way she would be ok with someone else during the day so you could sleep? Obviously that wouldn't work long term but at least you would be able to get enough sleep to think straight, kwim?

[DeChRi]

Thank you all for the replies.  After another night of up all night, I called in a sitter this morning and slept for 3 hours.  I felt like Super Woman.  My girls have a condition called eosinophilic gastrointesinal disease, which for them, effects mostly the stomach and esophagus.  Basically, their body sees food (specifically, partial or full protein chains) as a pathogen of sorts and sends white blood cells (eosinophils) to attack the GI tract.  It results in damage of the GI tract and they will have chronic vomiting, stomach and chest pain, difficulty swallowing, throat pain, etc.  My 3 yr old was able to BF successfully for 2.5 yrs with some modifications on my side, and now at 3.5 she is about 80% symptom free (and low eosinophil count on last scope/biopsy) and her diet is free of dairy, soy, egg, wheat, nut, fish, beef, citrus, and corn...in all forms.  Some kids react to only certain proteins, some react to all proteins, even very small partial protein chains, etc.  My DD3 was still violently sick after I eliminated all but 3 foods form my diet, then changed those 3, etc, for months.  She reacted to any partial protein in my milk.  We actually get her diagnosis first which lead us to the diagnosis of my 3.5 yr old and her mystery illness/symptoms.  There is a lot of good info on www.apfed.org. 

So part of the challenge with my youngest, is her reacting to EVERYTHING.  She can't take any fish oils or flax oil or such, even though the OT working with her sensory stuff says those would help.  For pain, she reacts to the inactive ingredients in regular pain meds.  Before all of this, we never gave meds, treated most things naturally, and this has thrown us for a loop.  IN the last year she has been on:

-PPIs to help the acid in vomiting/reflux: Nexium, Zantac (compounded with simple sugar), Prevacid (reacted to solutab ingredeints), Prilosec (compounded w/o inactives other than sugar)

-Allergy meds to try and control the reactions in her GI tract: Benedryl, Atarax (hydroxyzine), and finally Periactin (also was being used as an appetite stimulant)

-Antispasmotics to control her symptoms: Bentyl and hyocymine

And some other junk.  Nothing even touches it.  Her last scope was clean, which means from a GI aspect, she should be as close to baseline and asymptomatic as possible.  So then we thought it was sensory. She has a neuro appt in a few months.

I am going to go back to some chiropractic. But right now, what we have is basically what we can do.  She is off all meds for 4 weeks.  Finally, I told the Drs none were helping....so they agreed to take her off all meds to see if we can reset her system.

I would be more than happy to try some alternative things.  We have tried every sleeping position and such...part of the issues is I literally cannot even get her still enough to have her sleep anywhere.  She flails all night long.  My PCP is almost wondering if a sleep study would be useful. 

MY biggest challenge is HOW MUCH is behavioral and how much is other stuff.  I do not know what to address.  But since the Dr has washed hands from a GI point, and the OT is doing what they can, and the neuro appt is way far away....well, I am kind of on my own!

[queencarr]

Not in the same kiddo, but my oldest has eosinophilic esophagitis and my youngest some pretty severe sleep issues. The ee is treated with avoiding his high reaction foods (33!! Food allergies-we avoid the 2 worst and rotate his diet to avoid buildup to the rest), plus singulair which controls eosinophils and symbacort for the steroids. Also pre acid to reduce acid. Instead of swish/spit he drinks water and swallows it. So that may be a course of treatment to try. It allows him to have the less reactive foods that way. I know the amino acid formula was mentioned as an alternative if this regimen didn't work. As far as sleep, definitely get a sleep study!! You can gain a lot of great info. Have you talked to the OT about sleep? Sensory issues can play into sleep sometimes, maybe swaddle of sorts would help? We give ours a combo of sublingual melatonin, sustained release melatonin, and passionflower (not sure if she could tolerate it). He also took a valerian complex for a while on top of that, but we've been able to drop it. He had lots of night waking (feel free to search my posts) and we have been working with a neuropsychologist to improve sleep and behavior. At almost 4 1/2 years old he is finally now sttn!
Until you find some answers, keep on hiring someone so you can sleep as much as you can. That was my saving grace and I also sent him to daycare and napped .

[DeChRi]

Thanks for the reply. My youngest had too many sides with the swallowed steroids to continue. We got out clean scope once elemental, last month in Denver. The team there is guiding us now, w/ food trials, after all the allergy testing. My 3yr old we were lucky we hit what seems like a good combo first try. We did alergy testinghere a few mnths ao. She was positive to 5 of the top 8 plus beef, corn and orange. 12 weeks fre of all top 8 plus thos extras and our Denver scope had her dow to 8 eos/hpf in distal esoph and 5 eos/hpf in proximal. Since she sems to continue to improve, we are stay with this. She is a decent sleeper.

Our OT has shot all her sleep bullets. And last ditch was a wighted blanket.

Melatonin actually helps her fall asleep, but nothing helps her stay asleep. We are 2 weeks into a trial of 6 foods at once, under the guidance of Furuta/Atkins, knowing we may have to pul em all if it's a fail. We were kind of hoping having food would help her sleep, but it just isn't working. We usually start to fall apart 7 to 9 days into trials. She is having some symptoms, but unless we have total fallout, they want us go a full 6 weeks.

I really feel like we have the best care in Denver (closer to us than Cincy's clinic). But with our last clean scope, they don't know what the sleep part is

I'm scared to try much else in the way of new meds/supplements until we get further down the road w/ this trial.

How old is your son?

[D_McG]

Definitely sleep study time, imo.

[DeChRi]

Originally Posted by D_McG 

Definitely sleep study time, imo.

I am feeling the same way.  I will talk to the Dr about how to do that with a 16 month old. :)

[Jend1002]

It sounds like you have been through so much, I don't even know what to say!  You are doing an amazing job at working through all of this. 

So I am replying to your message because my son had a sleep study at 15 months.  It was challenging but definitely something that can be done.  I think we ultimately only got about 3-4 hours worth of data because he was moving so much and had detached so many sensors.  I think that is the biggest challenge - keeping the little one hooked up to so many machines with so many wires.  I distracted him while they were hooking them up, which went surprisingly well.  We don't have TV at home so I brought a video and he was pretty intrigued.  I was also shocked that I was able to get him to sleep at all.  But we started the process pretty late in the evening and he was exhausted.  He slept on and off and we had to mainly reattach the oxygen sensor and he also seemed to really tangle up the wires coming off of his head. There were sticky sensors behind ears that kept coming off too.  It sounds like your daughter moves a ton so I think that would be the biggest challenge for you. 

I don't know if any of this helps you, really.  I just thought it may be helpful to hear a little about the experience.  We did learn a few things about his sleep issues - and while there was not much we could do about his problems, it was reassuring to know that it wasn't something we were doing to create major sleep problems.  At least you may get at whether you are dealing with behavioral things, but based on my limited knowledge, it really doesn't sound like it!

Oh - I thought I should add that it was pretty tough to get a referral for a sleep study.  When we did, we learned that not many facilities take children of this age.  We ended up at a pediatric hospital.  

[crunchy_mommy]

I just wanted to send hugs your way, I remember your story and I really feel for you because until DS was 2 I did not get more than 2 hours of sleep myself, and it was torture. And no one believed me that he was up every 20mins.

I do think the sleep study might be a good way to go. I wish we had done that with DS (though fortunately his sleep improved rather suddenly on its own when he turned 2!) I hope you can find a solution, and I'm sorry I don't have any great advice.

[hennaLisa]

Hugs! I feel for you. My son does not have half the things going on as your daughter, and I feel like he is completely unmanageable. I doubt any of my suggestions would be of any good, but I'll try.

Hire a night babysitter. I have friends who have done this. You can find a wonderful person, probably for a lot less money than you think. I have had nannies who could put my son to sleep far, far better than I could, and could get him to sleep more soundly. I've paid as little as $5/hour, though if you can afford more, of course offer more. I've always had incredibly loving and capable nannies. We find ours through craigslist, and do background checks, etc. Maybe someone could surprise you. Even if they just took over for a night here and there so you could get some sleep, it might be worth it for the health of you and your wombling(s). 

Look into melatonin (can be given over the counter or in prescription larger doses) - we are considering this for our son. Supposedly it is naturally made for most people but some lack enough and it is currently being studied in children. I don't know much, just got the recommendation.

[queencarr]

My son with sleep issues is 4 1/2 years. A sleep study is doable-we did one at 17/18m. Go to someplace that is familiar with kids. Also, try http://www.inno-vite.com/en3/products/Healthy%20Lifestyle/detail.php?prod_id=SP-01-30&cat_id=11 . I order from abacohealth.com out of Canada. It is a time released/sustained melatonin. We use the sublingual drops to get him asleep and this to keep him asleep lol (plus the passionflower but hoping to wean that.trialing tonight). Another mom at mdc suggested it and it has been a lifesaver! Free of almost everything, I think it lists the free off/ingredients in it on the site. If not, email innovite-I got a very personal email very quickly.