Tuesday, July 26, 2011

THANK YOU! and Questions Answered...

Wow....I am humbled by all the comments and emails from all of you followers!!! You guys rock!! So many questions, thoughts, and ideas to look into....and so much support! My favorite comment was from anonymous, "I can say as a mother of 7 that kids are just nuts. I'm not kidding, if adults showed the type of behavior that I've seen in my 16 years of parenting my totally average kids, they would be on anti-psychotic medication." Right on sister! As I've said a million times, the hardest part of parenting a child with down syndrome who was adopted from an orphanage is trying to figure out what is causing some of the behaviors we see....DS? orphanage? toddler?  Is it totally normals stuff other 'typical' kids face too or is it above and beyond that? Having not parented any children before Zoya I'm always wondering what is normal and whats not. My instincts tell me theres something more than just typical weird kid behaviors, though it did make me feel so much better to hear some of the stories you left about strange and unexplainable behaviors in your own kids or kids you know.

So to answer some questions.....

Do you use melatonin?
Yes...we have since we arrived home with Zoya and it really does help her to settle down and fall asleep. She sleeps so well the first couple hours, and then starts the tossing and turning. We've noticed she goes through cycles of sleeping well followed by not sleeping well. When she was first home she NEVER slept soundly. Then she'd have a few week period where she'd sleep well, followed by a long period of restlessness. The restless periods have gotten to be less and less the longer she has been home, but we still see the cycle of restless sleep....thankfully the restful sleep periods are lasting longer and longer...we just happen to be in a restless period right now. That makes me think its likely more anxiety related than medical related, but I don't know.

 We had better results with a Magnesium supplement.  It is a natural stool softener and worked wonders.  Ours was in powder form from Kirkman labs (mail order or we would purchase it at our Dr. s office).  Another way to get magnesium into their systems is through a long soak in an Epsom Salt bath.  We also noticed that after we started the oral Magnesium supplement, our son seemed to sleep better through the night.  (Thank you Lord!)  I believe (and I've read) that it has a calming effect on the nervous system.
Thanks for this info...Zoya sees a nutrition specialist and I will ask about the magnesium. She takes calcium nightly which really helps to calm her as well...not sure if it has magnesium in it or not. I will definitely check into this. And cool advice on the epsom salt bath..thanks!

I know it sounds bad, but could she be sleeping too much (during the day)?
I really don't think so because she gets very crabby and tired and will lay on the floor and yawn and rub her eyes if it is past nap time some days. Some days I think she could skip the nap and be fine, but most days I know she really needs it. She falls asleep at night almost as soon as I put her in her bed.

Have you had her checked out physically lately to make sure there's no underlying illness such as blood sugar issues etc?
I don't know that there's ever been a thought to check blood sugar levels unless that is part of routine blood work that she would have had done.

Maybe that's just a coincidence, but when my son's doctor says to be careful to recognize the symptoms of hypothyroidism, she mentions the symptoms you mentioned above. We check the hormones once a year. Have you had this testing done?
Yes she is up to date on her annual thyroid testing...she will be due again in November. Everything was normal last time.

How does her anxiety manifest itself? Crying? Restlessness?
CRYING....LOTS OF CRYING. Funny thing is she pretty much had no idea how to cry when we met her. Then one day she realized her needs are met and she gets attention when she cries and she can cry to communicate with us. Then I wished she never learned to cry...LOL jk. Then she started having uncontrollable crying....like she could NOT get herself under control. She is learning to control her crying a bit better, but sometimes I feel like its a ticking time bomb never knowing when she'll just start crying due to anxiety....like if we go out to eat or something she is fine one minute and then has a look of terror the next. I went through a little bout of anxiety years ago and I remember feeling so out of control of my emotions so I wonder if she feels the same. We are trying to give her lots of tools to calm herself down when she starts getting upset. Like requesting her happy pillow or trying to let her feel in control by giving her choices.  Often she will ask for us to pick her up and then she feels much safer, but lately even THAT hasn't been enough at times.

Does the anxiety go away? Like, at speech does she relax? or is she anxious the entire time?
The anxiety usually lessens usually doesn't completely go away...she is always "on guard" in new situations. Like tonight at speech she was anxious at the beginning, then started to relax quite a bit, then every strange sound she heard (people walking or sneezing) she tensed up and got scared. Sudden sounds have really been bothering her lately and triggering anxiety. My brother sneezed really loud this weekend and it scared her so bad that she wouldn't even go near him until the next day LOL.

Also, I meant to add we are taking a break from therapy for the summer. Maybe a short break might be good for you, too?
Besides speech therapy we don't do any other outside therapies. We have been talking a lot about what we can cut out because we pretty much went from all in home therapies and not much else out of the house to outside speech therapy twice a week, swimming lessons, AND preschool, which could be a cause for the increased anxiety we are seeing. Too much too quick for Zoya. Swimming lessons are over, preschool is just once a week (but will be 3 mornings a week in the fall-we are working on a plan to slowly ease her into it).

From what I understand, it's recommended that every child with Ds have a sleep study by the age of 3. Apnea is just so prevalent. AND What does your doctor say about sleep apnea? Up to 75% of kiddos with down syndrome have sleep apnea (source is Up To Date)and it causes a myriad of problems.... Might be worth checking out- I believe that every child with down syndrome should have a sleep study done due to the likelihood of apnea.
I understand that as well (although no thanks to any doctor we've ever seen even bringing it up)...I found that fact out on my own and asked her primary ped. about it and she said a sleep study would be a nightmare for Zoya (which I totally agree with) and unless she is having issues that would point toward a sleeping disorder that she didnt' see a need. When we go back to the DS clinic in the fall I'm going to ask about it. But usually when doctors ask how she sleeps I say GREAT bc she sleeps so long...I tell them she has on and off cycles of restless sleep but nobody really seems concerned. She only snores if she has a cold...I know apnea can be present without snoring contrary to popular belief....but the usual options to fix it are to have tonsils and adenoids out and/or a c-pap machine....I really don't see Zoya keeping that on throughout the night. 
 I would recommend trying prune juice mixed with apple or orange juice. You can serve it cold or warmed up a touch. A small glass a day surely does wonders- a doctor I followed gave this in the hospital before starting any medications :)
We do diluted apple juice....the only thing about juices is the sugar content...Zoya does NOT do well with sugar so we try to keep the juices to a minimum...even natural fruit juices don't go over well with her. We tried regular prunes but Zoya gagged on those.

Anxiety- is one of the physicians that you are looking at talking to a developmental behavioral pediatrician? I rotated with one of these and he was FANTASTIC!!! May be something to look into if you are interested- in general they give parents strategies to deal with the behaviors to help the child cope.
The place we are hoping to get into in Cleveland has a DBP....this would be helpful (I hope they can give us ideas we haven't already tried).

So first off speech... I am in Ohio, but near Cincinnati so opposite ends here, but we have Help Me Grow and once approved (which DS make it automatic) they send a ST out to your house weekly. Is that not an option there?
I keep getting this question A LOT.  Our state does in home therapies up until age 3...Zoya was getting speech therapy once a week for an hour in our home. When she turned 3 services were turned over to the school district. In her IEP she has speech thearpy listed once a wee for 30 minutes...although most of that is not a pull out session...it is working with her in the classroom and helping classroom teachers know how to help her better with her communication. There is some pull out but definitely not enough for what Zoya needs. We started taking her to outpatient therapy once a week where we live and I still wasn't really seeing much improvement or progress like in all her other areas. That is when we decided to look into apraxia and the PROMPT therapy.  We had a private evaluation done by two PROMPT trained therapists who impressed me a whole lot (posted about it a month ago maybe...too lazy to link it up right now). They concluded Zoya has "severe motor planning disorder which is greatly limiting her ability to verbally communicate"....AKA apraxia. Play therapy does not work for apraxia. This specific PROMPT approach (google PROMPT therapy) is designed for kids with apraxia and after tonight's session I'm even more convinced this is THE ONLY WAY we are going to see improvement with Zoya's speech...this therapy is AH-MAZ-ING...it just stinks we have to drive so far to find a trained therapist. There is simply no substitute for this therapy.  Other mamas who've gone through the PROMPT therapy can chime in here with its awesomeness! Here is a blog (although I never commented) that got me really thinking about Zoya having apraxia and this is where I learned about PROMPT therapy and began researching it.

And just to add...as far as the poop situation....Zoya had awful diarrhea when we first brought her home, we finally did the gluten free diet and it did wonders....then she started having some constipation here and there...nothing horrible until last week when her teacher called me and said she was very worried about her. 3 hours later and she finally worked it out after miralax, 2 cups of apple juice, and a laxative...poor thing...then she gets scared to go the next time bc it hurt so bad...psychological constipation ha! That is why we decided to try the miralax but sheesh I'm thinking we could drop three grains of that stuff in her drink and it'd be enough after what happened these past few days...sheesh!

WOW THAT WAS A LOT! Thanks for all your comments and thoughts and ideas...you guys rock!
Off to prepare for our special visitors tomorrow....wait til you see whose coming!!!!!!!!!!!


  1. So glad you wrote this blog post. I will be checking into the PROMPT speech therapy and seeing if we have anyone in this area for when Paisley comes home. Thinking of you, sweet friend. I know you are going through alot right now but please know we are sending you good thoughts and prayers every day!

  2. With my sons when they are restless at night it is sometimes in a growth spurt and their legs hurt.

    Also maybe she could be experiencing night terrors.

    For bathroom issues try adding some extra fiber to her diet. I add the powder (that disolves clear and has no taste) to my kids drinks, applesauce, oatmeal, eggs etc.

  3. Here's something else for you to check out. We are BIG believers in Teresa Cody's work with nutrition and supplements. Here's the link:


    (copy and paste it into your browser address window since the link will be disabled in the comments :o) There are a huge number of success stories from those who have tried it out.

  4. I haven't had a chance to read all the comments...so I may be repeating things but here goes...

    Our son, who is a 'typical' kid, has night terrors. They began about a year ago (at 2 1/2) and we tried everything to help him through that time. He never slept through the night, sometimes waking 2-3 times screaming, for 6 straight weeks. During that time his daytime behavior fell apart too. He was fearful of EVERYTHING and melted down at the slightest things. The anxiety was overwhelming! Our regular ped had no idea what to do and set us up with a behavioral therapist. In the meantime we happened to have to see a different ped and she told us that often times if a child's sleep is disrupted it really messes up other behaviors! We used melatonin for a bit, but that can also cause nightmares in some kids (like my special needs niece) so we stopped using it. He did outgrow it a couple of months later and the anxiety is gone now. So, perhaps it does have to do with a sleep issue.

    Also, our son has terrible constipation issues. We still don't have that all figured out! I give him about 1/3 of the dose of Miralax to help when I see things are getting bound up. But my sister-in-law uses aloe vera juice to help my niece (the one with SN...she suffers because of the meds she is on).

    I'm so sorry about Zoya's anxiety, I hope you work through it soon. The best advice I have ever received was to just keep praying and God will show you how to help her! Hang in there!

  5. Did you know there are TWO different forms of Melatonin, and you can combine them? The fast-acting is for those who have trouble falling asleep, and the slow-release is for those who have trouble staying asleep. The maximum dose for a child of 40 lbs is 6 mg, and you could give 3 mg fast acting and 3 mg slow release.

  6. Me again. LOL My bio child with DS is now 15. She has always had horrible problems with constipation. She does best if we had a dose of benefiber to her diet. We give it to her in chocolate milk. (she won't drink white milk) Whenever we back off on the benefiber we're back to having problems again. As long as we stay on top of it daily, things are great. Axel is 10 and newly adopted from Serbia. He's the first child with DS I've ever known who has normal to soft stills. The other thing you can try is a drink called Ya Cool (another just like it is called Bio Solut) You can find both of them in the mexican section of the refrigerator isle. These are tiny 2 oz bottles of a drink similar in consistency to Yo-J. It has an incredibly high acidophilus count, and the probiotics can do WONDERS for constipation!

  7. I didn't read the other post yet (reading backward here, LOL!) but wanted to comment on something. You mentioned that she gets anxious in new settings and when she hears sudden, unexpected sounds.

    My 22-month old daughter (who does not have DS and is not from an orphanage; she's my bio baby) does the same thing. All children get to a point where things are big, scary and they realize they can get hurt (like if they jump off the couch onto hardwood floor; ouch!).

  8. I am reading Patty Cogen's book on international adoption, and she mentions increased sleep/ separation anxiety right before and during children reaching new growth/ development milestones. That could be the mountain you are at the top of :) She says to just expect it in kids with complex backgrounds, and explains it as when kids feel a big change coming on it reminds them of the last BIG CHANGE- leaving the orphanage. This doesn't help much- but sounds like you are trying the right things. Love that Zoya,
    Lauren in WA