Sleeping/eating issues autistic 2 year old

[momto3pirates]

Our 2 year old DD was diagnosed in December. She does not communicate at all. She is also epileptic and on kepra and phenobarbital, just for background. She has not had a seizure since November. She had a really bad round of seizures in April and was hospitalized for a week. She has brain damage from those seizures. She was a great sleeper/eater prior to that. Since then we have been struggling. She has not slept through the night. She wakes 3-4 times on a normal night. Some nights are worse. We also cannot get her to eat solid food other than a bite or two. There is no physical reason, I think it is a power struggle. She will drink anything I put in a bottle. Over the last 6 months she has lost weight. We have started making her fruit and veggie "smoothies" to get more calories into her. We are working with a nutritionist who is tracking her progress. I just wanted to get opinions of other been there/done that families.

 

[lanejudy]

I believe decreased appetite can be a side-effect of Keppra, so I recommend that you mention this to her neurologist -- anyone involved with her care but specifically the prescribing specialist. There may be a different medication or dose of this med that would lessen the side effect, or at least the doctor will weigh the impact of the decreased appetite and weight loss with the improvement in seizures. The ped may need to consult with the neuro if it's a significant ongoing weight-loss issue.

As for WHAT she'll eat...I agree that sounds like possibly typical toddler power struggles, not necessarily specifically-related to any medical diagnosis. What does the nutritionist say? Have you had an occupational therapist evaluate if she has some texture or sensory issues related to eating? Have you tried offering the smoothies in a sippy cup instead of a bottle?

Most important is making sure you have a team approach to all her care -- that means having the specialists aware of other issues even if not what that doc specifically treats, and hopefully you have a great PED who doesn't hesitate to confer directly with the specialists as needed. Good luck!

 

[bookwormde]

Our 2 year old DD was diagnosed in December. She does not communicate at all. She is also epileptic and on kepra and phenobarbital, just for background. She has not had a seizure since November. She had a really bad round of seizures in April and was hospitalized for a week. She has brain damage from those seizures. She was a great sleeper/eater prior to that. Since then we have been struggling. She has not slept through the night. She wakes 3-4 times on a normal night. Some nights are worse. We also cannot get her to eat solid food other than a bite or two. There is no physical reason, I think it is a power struggle. She will drink anything I put in a bottle. Over the last 6 months she has lost weight. We have started making her fruit and veggie "smoothies" to get more calories into her. We are working with a nutritionist who is tracking her progress. I just wanted to get opinions of other been there/done that families.

It is important to realize that you do not have a "typical child" so try not to apply things like "power struggle" to her as you would a typical child. Our kids are much more complex. You can be pretty certain that she have sensory differentials that are likely part of the reason and may have coordination and muscle tone issue that may also apply. A good OT experienced in Autism will be able to help you understand. I would be very careful of accepting a diagnosis of "brain damage" unless the scans so significant areas of non activity. Our kids brains are wired so differently that unless they are read by someone who is a specialist in ASD kids there is a lot of misinterpretation. Also due the asynchronous nature our many or our kids neurological wiring there are indications of resilience beyond what you would expect typically.

Stop worrying and loose the diet exceptions beyond getting her adequate nutrition with a good multivitamin, in the end that is all that really matters.

Our kids often sleep much less and along with sensory issues and the Epilepsy medication her atypical patter should not be a surprise. Unless she is suffering from sleep deprivation it is more about how your family manages her wakening's than about her.

This may be hard, but the sooner you accept her for who she is and not gauge her by typical expectations the better both of you will do. Yes our kids have challenges and you have an extra one with the seizures, but they also some with some amazing gifts that you will discover if you support her in her natural development as a individual with a very different neurology based on Autism genetics.

Hang in there

 

[momto3pirates]

Thank you for your help. Please don't think I am trying to make my daughter anything other than who she is. I am sorry if it came across that way. I just want her to be as healthy as she can be. It worries me that she is losing weight. My question is really how do you get adequate nutrition in if they don't want to eat? I have been adding more nutrient dense foods like avocado, peanut butter and coconut oil to her smoothies.

She sleeps with us and therefore, when she doesn't sleep, neither do we. She is a monkey and can climb out of or into just about anything, so no crib for her. How do you move them to a toddler bed when they do not understand the concept of staying put? We have her in ABA 3 hours a day and she is making progress. She claps and waves now. She also has OT 2 days a week.

As far as the brain damage, she had several MRIs after her first seizures in Oct 2013 and was diagnosed with viral encephalitis. They initially thought she had had a stroke. We spent 3 weeks in the hospital on antivirals. When she had seizures again in April 2014, they did another MRI. The neurologist is the one that says brain damage, specifically to the hippocampus area on the right side. They are hopeful that because she is so young she will recover.

We are very fortunate to have really good specialists here, and they are giving me all the proper medical advice. I just wanted to get tips from the trenches.

 

[lanejudy]

We had weight-loss issues when DD was a baby, and her PED has us double-up her formula. Your DD is probably too old to be on formula now. We've always used a multi-vitamin. She again had a weight issue as a side-effect of medication after starting school, and we use PediaSure drinks to supplement her meals, and often for snacks I give her a Special-K Protein meal bar to give an extra boost of nutrition. DD also loves smoothies so I put whatever I can into those, and recently we discovered she likes V8 juice.

Good luck!

 

[knitngurl]

Whas you daughter on a vent during her hospital stays? During my days working in the NICU we would see many babies develop oral aversions after being on a vent. This could be a reason she doesn't want to eat. These kiddos usually went to OT for this, so you might want to talk to them about it if it's the issue with her. As for not sleeping, that just seems to be par for the course unfortunately. My DD only slept for about 2-3 hours on a good night until she was 14. Which meant I only slept 2-3 hours on a good night for 14 years. I would go out to my car and take a nap every day instead of eating lunch at work. I could get her to fall asleep more easily with melatonin, but never could get her to stay asleep with it. Since she too has seizures we got approval from her neuro before using. For your own sanity try to provide her with lots of things that can quiety entertain her when she is awake so you can at least rest. If you are married, perhaps your parter can switch so at least one of you is rested once every other night? Hang in there!

 

[Tiffylv]

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[Goddesstree]

For safety, and your sanity, you can get a 'lid' for a crib. It's mesh, fastens securely, and keeps little climbers safe.

 

[kandb]

What do you do when the child wakes up in the crib with the "lid". Are they just left in it like they are in a cage?

 

[Tiffylv]

.

 

[kandb]

My typical over 6 year old still sometimes sleeps in my bed with my husband and I. My 12 year old twins slept with my husband and I a lot of nights when they were younger. We were tired and when they slept with us, we all slept and when you are sleep deprived, you do what you gotta do. I just found the PP saying to put a lid on the crib "to keep your sanity" rather disturbing. No child should be kept in a cage, but sadly some probably are.

 

[Tiffylv]

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[kandb]

It's really stressful when a child doesn't sleep well. Two of my three children did not sleep well and having them sleep with me in order to get a good nights sleep was worth it. I know it's a personal decision but I could never hear my child scream and cry for me and me just leave them. It just doesn't feel like the natural thing to do. I know each child is different. OP-hope your dd is gaining weight. Will she eat fattening things like milkshakes? I would try anything fattening that you could get her to eat.

 

[Goddesstree]

What do you do when the child wakes up in the crib with the "lid". Are they just left in it like they are in a cage?

My typical over 6 year old still sometimes sleeps in my bed with my husband and I. My 12 year old twins slept with my husband and I a lot of nights when they were younger. We were tired and when they slept with us, we all slept and when you are sleep deprived, you do what you gotta do. I just found the PP saying to put a lid on the crib "to keep your sanity" rather disturbing. No child should be kept in a cage, but sadly some probably are.

It's taken me all this time to stop being stunned by the responses above. No, you don't leave the kid in there if he or she is crying. But if they are content, then yes, they can be safe in the crib and may actually learn how to fall back to sleep independently. My older daughter was a climber, and got out of her crib one night. She did not come directly into our bedroom, but luckily the house was very baby-proof (except for the old vcr cassettes).

Sleep loss/interrupted sleep can cause numerous medical issues, including heart issues and depression. Oh, and car accidents too when you nod off while driving. I had the depression, raised blood pressure, and an irregular heartbeat. A friend fell asleep while driving with his 4 kids one evening.

If a child with health issues has sleep problems, I'd think the first thing to do would consult with the medical team. Baby monitors with cameras are commonplace now. That could help as well. I guess if co-sleeping works for the entire family, then that's great. But if it is keeping the entire family from getting a good night's sleep then maybe trying other things can help.

 

[ember303]

Thank you for your help. Please don't think I am trying to make my daughter anything other than who she is. I am sorry if it came across that way. I just want her to be as healthy as she can be. It worries me that she is losing weight. My question is really how do you get adequate nutrition in if they don't want to eat? I have been adding more nutrient dense foods like avocado, peanut butter and coconut oil to her smoothies.

She sleeps with us and therefore, when she doesn't sleep, neither do we. She is a monkey and can climb out of or into just about anything, so no crib for her. How do you move them to a toddler bed when they do not understand the concept of staying put? We have her in ABA 3 hours a day and she is making progress. She claps and waves now. She also has OT 2 days a week.

As far as the brain damage, she had several MRIs after her first seizures in Oct 2013 and was diagnosed with viral encephalitis. They initially thought she had had a stroke. We spent 3 weeks in the hospital on antivirals. When she had seizures again in April 2014, they did another MRI. The neurologist is the one that says brain damage, specifically to the hippocampus area on the right side. They are hopeful that because she is so young she will recover.

We are very fortunate to have really good specialists here, and they are giving me all the proper medical advice. I just wanted to get tips from the trenches.

We are in different journeys, but my little guy has always hated eating! Honestly he has not ever wanted to eat! Oh my goodness we love ABA!!!! My son finally started talking after ABA. It took hard work and patience, and he talks all the time now : ) It is AMAZING! Okay back on the eating.... Now my son is not allowed to eat by mouth. He has a NG tube and his nutrition is delivered that way. However, even before when he was eating we supplemented with formula. Maybe this would help you feel better about her not eating the healthy foods you want her to eat. Not sure if that would work for your family. : ) It was nice to not have to worry so much about his eating when he would drink his formula! Sometimes they are super picky about drinking it so it is a game on finding one they will drink! Good luck!!!!!