Long But Worth the Read!

9/21/16

Long but worth the read! We’ve been desperately trying to help our 8 year old with Down syndrome and Ehlers Danlos syndrome (faulty collagen) with her declining gross motor skills over the past couple of years. When she was younger she could run around for 45 minutes at a time no problem. Last week I found a medical document from 2 years ago that said she was *only* able to walk up to 10 minutes without needing a break and I cried because most recently (past 1.5 years) we were down to 1-2 minutes MAX that she could walk without grabbing her legs in pain, asking to be picked up, or kissing her legs saying she had boo boos. We’ve been to SO many specialists, doctors, physical therapy and nobody has been able to help. She had tethered cord release surgery and a spinal fluid leak about 1.5 years ago and things continued to go downhill from there. She was fitted for a wheelchair last winter and we could not go anywhere without her wheelchair or stroller. She could play on playgrounds okay because she could take many breaks, but walking more than a few minutes…it just wasn’t possible for her. Her fatigue is debilitating and at 8 years old still naps every single day to make it through the day. Anyways….in addition to all of those issues she has major sensory dysfunction (sound sensitivity, fight/flight response often, sensory defensiveness, etc.), anxiety and PTSD from her time in an Eastern European orphanage….we ended up pulling her out of her half day modified school day a year ago to homeschool her because her quality of life was just declining and she couldn’t make it through half a day due to fatigue and anxiety. Dr Sheehan kept mentioning light therapy and how helpful it would be and then I heard about this group. Devastated to learn the cost of the laser, my husband and I kept praying. We had spent so much money on therapies that DID NOT WORK that we were afraid to take such a huge risky leap….we decided to take a leap of faith (and a loan haha) and purchase the laser. I’ve been working with her for 5 nights now and today I believe I’ve seen a miracle! Our girl not only walked but walked/ran 3/4 of a mile without stopping!!!!!!!!!! Last night she was running around outside in a way that made me cautiously curious and then last night and this morning she was able to walk up and down our stairs without holding on to the wall or railing….she has never been able to do this and most recently could not even walk down one step at our front door without holding on. She’s always slid down the stairs on her butt. I keep having this feeling that I’m going to wake up tomorrow and it’ll all have been a dream. We’ve not seen huge sensory changes yet but we’re only 5 days in and what we HAVE seen is enough to make me a believer. We pray every night when we get started with the laser and that has been a big part of it, too, I believe. We are praising God! I will try to upload some videos in the comments section.

Update: 10/12/16

We just got back from my daughter’s Make-A-Wish Trip to Disney World. I took the laser with us, but we were so busy (and mama needed a break, too) so I didn’t do anything other than run CMT during her naps. She declined quite a bit gross-motor wise. For those who didn’t read my last post she had Ehlers-Danlos Syndrome and DS with some other undiagnosed muscle/movement issues. We saw huge motor improvements within the first 2 weeks of using the laser. She uses a wheelchair for anything more than a couple minutes, or I guess I should say USED (I’m thinking we will still need the chair for long walks/community outings, at least for now but am hopeful we will make even more progress)! She is up to almost being able to walk a mile pretty consistently since using the laser! Anyways, she declined on our trip and I was so sad…on the last two days I added in some laser time (just moro and FPR) and saw some improvements, but still was not back to how great it had been when we were doing the laser more full-time. Since being home I’ve done 3 sessions with her (totaling one complete protocol with the new T21 additions). She blew me away today!!!!! We still have a long ways to go, but this kid has never galloped in her life….she has an emerging gallop today, her balance was so awful she couldn’t even step down one stair, let alone step over a high chain without holding on!!! And she has NEVER forward jumped like this before!!!! And RUNNING?????!!! Like running so fast I had to run to keep up with her? Also new!! To some of you it may not look like much compared to your children with better gross motor skills but keep in mind where she was starting! Unreal!

Some other differences we saw when we took the laser-break were: increased fatigue-she was back to her pre-laser levels of fatigue, and increased stuttering which made me realize how much the stuttering has gone away since using the laser and QRI protocol! She is just HAPPIER, as well, when we use the laser!!! So thankful for QRI!!!

Update: 10/17/16

We’ve been seeing some additional positive changes (additional to all the amazing gross motor and pain reduction) since we started using the T21 portion of the protocol…I believe the basal ganglia piece is huge for our daughter! Every time I do the basal ganglia portion she falls asleep. Her speech and language is showing improvements….she used to have bouts of stuttering that came along with her increased pain and fatigue and now it is so rare to hear her stutter that when she does I stop to notice how good it HAS BEEN since the laser! She is much more articulate and stringing together more complex sentences. Before the laser she was speaking in 4-7 word sentences and that has increased! Her reading fluency is AMAZING now and her ability to recite a sentence (or the pledge of allegiance, for example) has grown! It seems with her speech she is now using all parts of a sentence more frequently (i.e. “Can I go to the store with Dad?” instead of “store with dad?”). A few hours after she got home from a morning out with Dad she told me, “I went to the beach with dad and put my toes in the water. It was cold!”

I was impressed not only with the sentence structure but also that several hours later she was relaying the story to me. Cognitively she seems sharper. She will mention parts of a conversation that she was eavesdropping on and it makes me laugh…I need to be more careful now I guess 😉 Her fine motor skills seem to be improving as well since she was able to buckle her 5 point harness completely on her own and figured out one of our door locks which has been on the door for 2 years LOL! My husband took her to the beach this morning and he said she just seemed so FREE…she wasn’t anxious about the wind, or flies, or sand in her shoes as she normally is! The anxiety has been the slowest part to come along so far, but we only started QRI about a month ago, so I still think what we’ve seen has been phenomenal!! Oh and one other thing is that people who don’t know we are doing the laser are noticing a difference in her appearance….she even LOOKS more confident and happier…so awesome!

Update: 10/20/16

I can’t say enough how thankful I am for QRI!!!! My daughter looked at the laser on the counter this morning and said, “The laser helps you. Laser is my favorite!” <3 <3 <3 I could cry, seriously, because up until QRI we tried so hard to help her pain and all the “experts” agreed that aqua therapy and meds were our best choice….she complained about pain after half of her aqua therapy sessions but tried her hardest because we asked her to, and the meds hurt her tummy more than they helped her pain. When your child tells you something is working after years of feeling like a failure….well there’s no better way to start your day, that’s for sure!!!!! She KNOWS and FEELS how it is helping her!!!!! Thank you Bonnie Brandes!!!!

Update: 11/10/16

This kid has never allowed band aids to be placed on her….she’s had bloodwork probably 100 times and freaks out every time they’ve tried to put a bandaid on her. I couldn’t believe she let them put two bandaids on! My husband said the phlebotomist (who has been drawing her blood for a while) commented about “how far she’s come.” She couldn’t get blood from the right arm so she moved to the left and had to dig around a bit and my husband said Zoya just calmly said, “that hurts.” She recently got a service dog and that helped with her overall calm level for sure…but the band aid thing, and being able to calmly articulate that she was in pain without going from 0 to 60!!!! And the fact that the phlebotomist noticed a marked change in her! I truly think the basal ganglia piece has been very helpful for her!! In this picture she is making this face because I was going crazy about how great she did and she was so proud and even a little surprised with herself I think!

Update: 12/19/16 

One more exciting development! My 8 year old daughter had her vision exam today and her astigmatism decreased!! New lenses needed but for a different reason this time! Anyone else using QRI have a similar experience? She’s been in glasses for 4 years and we’ve only ever had lense changes for an increased script. I do know reflex integration can improve vision but it wasn’t something we were expecting with QRI!! Nice bonus!

For those using the laser for pain or thinking about it, IT REALLY MAKES A HUGE POSITIVE DIFFERENCE! I haven’t posted in a while because life has just been SO busy but we are still seeing amazing benefits using QRI with my 8 year old with DS/EDS/tethered cord post op. We’ve been using the laser for just over 2 months…this is only the 2nd time I’ve taken a break from it and the 2nd time in two months that she has complained of pain. Prior to laser use she had daily significant pain and the doctors had no idea how to help her. The first time I took a break was very shortly after we started and she had a huge regression. This last time I took about a 5 day break because we moved and life was just crazy….she had pain but it was WAY LESS than what happened during our first break. This last time, she complained of knee pain while walking up the stairs twice…I did one full protocol with her as soon as she complained and her pain is GONE! For those worried regression will happen when you take breaks, our experience has been that the regressions have been less severe the longer we’ve been using the laser. We still have a lot of progress to make as far as anxiety, impatience, claustrophobia symptoms, fear of crowds, impulsivity, fight/flight, but we’re making such good progress (and we have a very complex kid!)! I just realized the other day she no longer complains of tags in her clothes, she doesn’t care if her socks are inside out or if the line is crooked (she would have a meltdown about this in the past), She tolerates wearing a hat, glasses, and hearing aide better, as well. She’s better able to handle loud noises now as well!

By |2017-11-24T18:16:33+00:00June 16th, 2017|Best posts|2 Comments

2 Comments

  1. e2s3b@sbcglobal.net August 18, 2018 at 5:45 pm - Reply

    HI, EHLERS DANLOS SYNDROME, WHO. HOW WAS THIS DX/?
    THANKS
    GREAT NEWS ON YOUR LITTLE GIRL.

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