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Posts (27)

Wed, Mar 25 6:11am · My son on lock down: Hard for people with special needs in COVID-19

I totally agree that it is confusing for people with disabilities. I’m currently working with a group of parents, educators and various other special interest parties trying to make sure that those with disabilities have access to information that is understandable and that they are given consideration and treated equitably.
It sounds like between you and his carers he is making out ok for now. That’s great to hear! Now if we can flatten this curve we hopefully can get back to “normal” soon! I’m sure it is going to take a while and it is a bit uncertain but fingers crossed!
So hoping your daughter makes it back without much more turmoil. It feels like everything is upside down right now for most people.



Mon, Mar 23 5:16am · My son on lock down: Hard for people with special needs in COVID-19

I’m happy to hear your daughter is on the way home! We sensed things were bad, but we were absolutely taken aback by how quickly it escalated. It is very strange, unprecedented times for sure. My son has a genetic issue as well- there is no name for it so he also has a diagnosis of ASD. We are using a visual schedule daily to help set the pace for the day. It’s very helpful for both of my guys and I’m finding comfort in it as well. Is Michael verbal? Does he use PECS for communication? I’m attaching a photo of one of the social stories I’ve seen. If you haven’t used one before they are a great way to help people on the spectrum understand what’s going on. My son is a strong reader so we don’t use pictures anymore for visual schedules or social stories but we have in the past.

Up here (we are in Canada) they are recommending that anyone coming from an area where there are many cases (like Cali or New York) should self isolate for 14 days. Will your daughter be isolated when she returns? If Michael is high risk it must be a very stressful time for you!

Sun, Mar 22 4:55pm · My son on lock down: Hard for people with special needs in COVID-19

Hi @ihatediabetes

I’m very sorry to hear your frustration, and please know that you aren’t alone in not knowing where to turn. My son has special needs as well and though he is at home with me, and he loves to be home, it’s not easy for him to be out of routine. I’ve been relying heavily on the following article to get us through this uncertain time. I know that it is written specifically with ASD in mind, but I think it speaks beyond the diagnosis. https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times
I have seen a few really good social stories that attempt to explain the Covid pandemic. Does he respond well to them?

Mar 29, 2019 · CBD oil for pain in Chronic Pain

I’m not sure if it’s been mentioned, but you can take a few drops of the oil and apply it topically to the site of pain. I use a homemade cream on my neck pain (occipital nerve) to calm it down. I can no longer take the internally if it has a higher thc ratio as it triggers seizures. It is believed that it isn’t absorbed systemically if it is applied to the skin- which means it won’t get you high, but I’m not sure I would trust it enough to pass a drug test just in case. It’s not going to ever be a miracle “cure” either internally or externally, but it does seem to work WAY more effectively than any other cream I’ve purchased over the counter.

Dec 7, 2017 · White-Sutton syndrome in Brain & Nervous System

Hi @snicoledenny ! It’s nice to meet you! You’re daughter is the same age as my son- he has some special needs as well but we don’t actually have a name for what his genetic condition is. I’m curious to know how if this was the first time they ran a genetic screen for your daughter? We had one done when my son was about 3 when it was quite apparent that he was globally delayed but now (here in Ontario, Canada anyway) it seems that they are less likely to run a genetic screening as our kids age. I found it all easier to understand and come to terms with once we got the results. How have you managed? Are you both doing ok?
I’m so happy to see that you and @lisapraska managed to both find your way to Connect!

All my best!

Nov 28, 2017 · Anyone with keutel syndrome? in About Kids & Teens

@lisapraska – I did a bit of poking around early this morning and I think I’ve found a more complete answer for you. I’m sure you know that whole genome sequencing technology hasn’t been around for a really long time at this point, and while the technology is developing at a rapid pace, the science isn’t moving quite as fast. All things considered, they are doing well though! It’s not an easy job to figure out the function and interactions of so many individual genes. White Sutton Syndrome is VERY new- the first publication was accepted in December of 2015. While mutations of POGZ have been noted in prior studies of neurodevelopmental disorders, WSS specifically has only recently been defined phenotypically. There will be more patients identified in coming years. The technology in the past was only able to find very large differences within the genome, then smaller differences (like missing a few genes or duplicated genes), but as time moves on and we learn more about the functions of each individual gene we get closer to what I call “nanotechnology”- the ability to find errors within single genes. The good news is that now that WSS is documented and on the map, there is a greater chance for geneticists to test patients for it, research possibilities, and the opportunity for parents, caregivers and patients to connect and share knowledge and experience. In the meantime, you may find it helpful to connect with parents under “umbrella” diagnoses like paediatric neurodevelopmental disorders, Autism Spectrum Disorders, Developmental Delay or Intellectual Disorders.

Nov 22, 2017 · Anyone with keutel syndrome? in About Kids & Teens

@lisapraska ….. I just reread your post- you think he has migraines, or he has been diagnosed as having migraines? Is he verbal?

Nov 22, 2017 · Anyone with keutel syndrome? in About Kids & Teens

Hi @lisapraska
It’s hard to say if an abnormal MRI will tell you anything about migraines or their severity because it would depend on what abnormal findings are there. Much of the time the findings are considered “incidental” – which means “We looked inside to see what was going on, didn’t find a big flashing ‘x’ marking the spot…but we saw this on the way.” Frustrating I know, but at least it’s better than nothing. An MRI cannot diagnose or differentiate between migraine, cluster, or tension headache. It can help rule out other things that may be contributing to symptoms. An example would be a build up of cerebrospinal fluid on the brain. A paediatric neurologist would likely be a good fit for you. Migraine is not fun at all and I’m very sorry to hear that your son suffers from them. I know that for adults they usually start with keeping a log of when they hit and how often, what you have been eating (food can be a big trigger) the medication used to treat them, (too much of certain medications can cause rebound headaches that don’t respond to treatment) and other general lifestyle questions. They usually suggest keeping the log (filled out daily, headache or not) for 3 months. It might be worth giving it a try while you wait for your next appointment.
Also keep in mind that sometimes MRI’s show things that look rather “abnormal” but don’t actually hinder the patient in any way. Our brains are so complex that even though the technology is available to see them from the outside looking in, we still don’t know exactly how they work! Keep me posted?