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.