Today I met with Children's Dr to review Morgan's Nueropsychological evaluation. Add another diagnosis to the list..Nonverbal Learning Disability (NLD) :(
While this was disappointing to take in, the meeting and information he provided was fascinating and explains a lot of the behaviors and delays we see with Morgan so happy to have some insight and recommendations on how to best approach parenting and teaching situations.
If you are interested in the specifics of what this means, keep reading, will try to summarize the key points of our discussion! NLD is a disorder which is usually characterized by a significant discrepancy between higher verbal skills and weaker motor, visual-spatial and social skills.. This is an area we have been trying to pinpoint for months/years but it explains a lot of her visual spatial and slow processing time. She is a strong VERBAL learner but therefore the use of visual cues (which is what her IEP and therapists often turn to in order to assist with processing/facilitate responses from her) do not help her with the absence of verbal instruction/scripts. Basically we will need to focus on providing verbal and detailed language instruction for her to learn and follow. He provided her evaluation results and so interesting that all of her language and verbal memory functioning and comprehension is average for her age but all of her visual spatial, reasoning, and processing are listed as low average or mildly impaired. So now what? He gave us a very detailed report with some extremely helpful recommendations, books, tools, apps, music therapy, etc. - lots of reading and work to do here and hoping to implement these approaches and see some positive results! He also has information and recommendations for her teachers and therapists and offered to take the time to speak with them or meet with them face to face - very impressed with this offer! This is not a disability that will go away but identifying it at her young age is a positive thing and can learn to manage it to hopefully see that gap between her verbal and visual processing shrink versus grow over time. We will meet with neuropsych every 2 years to reassess/test to check on progress and address any concerns.
Friday, July 13, 2018
Tuesday, July 3, 2018
Neurosurgery follow up
Long awaited Neurosurgery follow up appointment today. We spoke with Dr Petronio at length regarding some of the behavior we have been seeing, her scans, symptoms (headaches, lethargy, vomiting), etc. I had a lot of questions after attending the Hydrocephalus Association convention last week!
Her ventricles look fine, slightly smaller 4th ventricle but nothing to be concerned about and her laterals about the same (her shunt was set 20 higher since January so was wondering if that impacted but doesn't appear to have). He did explain though that sometimes there will be situations with shunt malfunction that they may not see on scans - I was aware but surprised that apparently this is pretty common. Scans can show the volume of fluid in her ventricles but do not give indication of pressure. One option if she continues to have issues is to bring her into short stay and have them tap her shunts so that they can measure the pressure. We will decide if this is something we want/need to do but of course with this comes some risk of infection so would like to hold off unless absolutely necessary.
He had read her charts from the rehab doctor and spoke about some other behavior which makes him concerned that she could potentially be having seizures (not the first time we have heard). He would like us to revisit this and referred us to the MN Epilepsy Group to schedule another EEG (she has had one but several years ago now). So we are going to start with this and hope/pray this is just something to rule out!
Other potential causes may just be intermittent shunt blockage (constipation can even cause this) or migraine headaches.
He also offered to refer us back to a different Gillette's rehab specialist and assessed her right leg/ankle after the botox injections which he agrees is not the best we can get - mentioned to ask about potentially serial casting since her orthotics don't seem to be helping as much as we would like to prevent toe walking and inflexibility of her ankle.
Her ventricles look fine, slightly smaller 4th ventricle but nothing to be concerned about and her laterals about the same (her shunt was set 20 higher since January so was wondering if that impacted but doesn't appear to have). He did explain though that sometimes there will be situations with shunt malfunction that they may not see on scans - I was aware but surprised that apparently this is pretty common. Scans can show the volume of fluid in her ventricles but do not give indication of pressure. One option if she continues to have issues is to bring her into short stay and have them tap her shunts so that they can measure the pressure. We will decide if this is something we want/need to do but of course with this comes some risk of infection so would like to hold off unless absolutely necessary.
He had read her charts from the rehab doctor and spoke about some other behavior which makes him concerned that she could potentially be having seizures (not the first time we have heard). He would like us to revisit this and referred us to the MN Epilepsy Group to schedule another EEG (she has had one but several years ago now). So we are going to start with this and hope/pray this is just something to rule out!
Other potential causes may just be intermittent shunt blockage (constipation can even cause this) or migraine headaches.
He also offered to refer us back to a different Gillette's rehab specialist and assessed her right leg/ankle after the botox injections which he agrees is not the best we can get - mentioned to ask about potentially serial casting since her orthotics don't seem to be helping as much as we would like to prevent toe walking and inflexibility of her ankle.
Thursday, June 14, 2018
Vision Therapy & Rehab
week 2 of crazy appointment schedule!
Wednesday we had a vision exam follow up appointment and met with the vision therapist. Admittedly been terrible about having her wear her new eye glasses daily (not an easy feat with a 5 year old to keep them on her!). They adjusted her fit (3rd times a charm?) and tried on several more pairs of glasses but ultimately kept the 2 we purchased with some adjustments & a plastic piece to fit behind her ear. Vision therapist did some assessment and was able to get decent testing (was worried about her comprehension at this age still) and this is something we will consider to start vision therapy in the fall. There is quite a discrepancy on doctor's opinions for vision therapy and little research that shows medical benefit but I have spoken with many contacts who believe it helps their children immensely. We are trying to address her visual processing and delays with writing, coloring etc.
Thursday she had a rehabilitation dr appointment for botox injections in her right leg again. We decided to try this at Children's MN this time instead of Gillette's and while our experience and communication with this Dr was MUCH better I was extremely disappointed when he told me right before we left that he was leaving Children's :(...back at square one. The challenge has always been after the injections and the lack of follow up to know if this is beneficial and the correct dosage, etc. - need to decide if we will now stay at Children's with their NP or go back to Gillette's rehabilitation dr. The appointment itself went fine - they do this in the short stay unit so that they can give her nitrous (which is actually semi-entertaining) and the injections are painless. Morgan HATES fruit and anything fruit flavored so also a bit entertaining to having the nurse shove a bowl of fruit flavor smuckers lip stuff in her face for her to chose which flavor she wants on the nitrous mask- wish they would put this in her chart! I am not sure if I have mentioned this in a prior post but her OT once mentioned her aversion to fruit (which happened suddenly after a shunt revision) could very likely be related to this fruit flavor on the nitrous mask...interesting!
Wednesday we had a vision exam follow up appointment and met with the vision therapist. Admittedly been terrible about having her wear her new eye glasses daily (not an easy feat with a 5 year old to keep them on her!). They adjusted her fit (3rd times a charm?) and tried on several more pairs of glasses but ultimately kept the 2 we purchased with some adjustments & a plastic piece to fit behind her ear. Vision therapist did some assessment and was able to get decent testing (was worried about her comprehension at this age still) and this is something we will consider to start vision therapy in the fall. There is quite a discrepancy on doctor's opinions for vision therapy and little research that shows medical benefit but I have spoken with many contacts who believe it helps their children immensely. We are trying to address her visual processing and delays with writing, coloring etc.
Thursday she had a rehabilitation dr appointment for botox injections in her right leg again. We decided to try this at Children's MN this time instead of Gillette's and while our experience and communication with this Dr was MUCH better I was extremely disappointed when he told me right before we left that he was leaving Children's :(...back at square one. The challenge has always been after the injections and the lack of follow up to know if this is beneficial and the correct dosage, etc. - need to decide if we will now stay at Children's with their NP or go back to Gillette's rehabilitation dr. The appointment itself went fine - they do this in the short stay unit so that they can give her nitrous (which is actually semi-entertaining) and the injections are painless. Morgan HATES fruit and anything fruit flavored so also a bit entertaining to having the nurse shove a bowl of fruit flavor smuckers lip stuff in her face for her to chose which flavor she wants on the nitrous mask- wish they would put this in her chart! I am not sure if I have mentioned this in a prior post but her OT once mentioned her aversion to fruit (which happened suddenly after a shunt revision) could very likely be related to this fruit flavor on the nitrous mask...interesting!
Friday, June 8, 2018
Neuropsychologist Evaluation
This week Morgan's unusual behavior continues- headaches and two mornings of vomiting but then feels better. Not sure what is going on but we have several appointments scheduled this month and decided to wait to get into her primary Neurosurgeon (he was booked and on vacation) until Jul 2nd. Will take her in sooner if it becomes more emergent.
Today was long awaited pediatric neuropsychologist evaluation. This is something that was suggested to us a while back but waited until she was old enough to be evaluated. The appointment was a few hours long - I wasn't able to sit in the room while they were evaluating but a series of tests and questions for Morgan while I filled out a very long questionnaire (in addition to the evaluations and information already sent in by parents, teachers and doctors). We are hoping this evaluation will shed some light into her abilities and how best to teach and work with her behavior.
Today was long awaited pediatric neuropsychologist evaluation. This is something that was suggested to us a while back but waited until she was old enough to be evaluated. The appointment was a few hours long - I wasn't able to sit in the room while they were evaluating but a series of tests and questions for Morgan while I filled out a very long questionnaire (in addition to the evaluations and information already sent in by parents, teachers and doctors). We are hoping this evaluation will shed some light into her abilities and how best to teach and work with her behavior.
Saturday, June 2, 2018
Dance Recital & ER visit
Last night Morgan was complaining of headaches and grabbing her head and we chalked it up to a long day of playing after OT & PT. Then again this morning she woke up with a headache and wouldn't get off the couch for most of the morning. I asked her if she wanted to go to her dance recital or skip it (an adaptive dance team she has been doing since Sept 2017) and she was so excited to participate she jumped off the couch to change into her adorable yellow tutu custom.
In the car on the way to the recital she fell asleep and I had to carry her in to meet her dance team backstage (unusual). She woke up a bit and I forewarned the instructor of her condition, gave her my cell no in case of emergency then joined the other parents and my husband and son in the stands to watch. It seemed like she danced in her dance recital as well as she typically would and we eagerly awaited her finish at the finale a few songs later.
I could tell immediately something was off when Katy, her dance helper, carried her out on stage for the finale sleeping in her arms. She was slumped over her body and would barely lift her head to acknowledge the thousands of people staring at her on stage. I scurried down to pick her up after the finale and her teacher and helper explained to me that they could barely keep her awake backstage the last couple of hours. I lifted her limp/lifeless body onto mine and walked out to the front to meet family & friends. We could not wake her during this time and after several minutes decided best to take her in.
We checked her in to ER at Children's in St Paul and during this time she was still mostly unconscious. About 30 mins later after she was settled into the hospital room (nurse took vitals, etc and scheduled scans) she perked up like nothing happened. We proceeded with the MRI and Xrays, took blood work and everything looked normal. Nurse and ER doctor agreed her behavior was unusual but after discussing with neurosurgery they agreed to discharge her as long as we set follow up appointment with neurosurgery. Hooray for no overnight hospital stay but UGH for her odd behavior lately!
In the car on the way to the recital she fell asleep and I had to carry her in to meet her dance team backstage (unusual). She woke up a bit and I forewarned the instructor of her condition, gave her my cell no in case of emergency then joined the other parents and my husband and son in the stands to watch. It seemed like she danced in her dance recital as well as she typically would and we eagerly awaited her finish at the finale a few songs later.
I could tell immediately something was off when Katy, her dance helper, carried her out on stage for the finale sleeping in her arms. She was slumped over her body and would barely lift her head to acknowledge the thousands of people staring at her on stage. I scurried down to pick her up after the finale and her teacher and helper explained to me that they could barely keep her awake backstage the last couple of hours. I lifted her limp/lifeless body onto mine and walked out to the front to meet family & friends. We could not wake her during this time and after several minutes decided best to take her in.
We checked her in to ER at Children's in St Paul and during this time she was still mostly unconscious. About 30 mins later after she was settled into the hospital room (nurse took vitals, etc and scheduled scans) she perked up like nothing happened. We proceeded with the MRI and Xrays, took blood work and everything looked normal. Nurse and ER doctor agreed her behavior was unusual but after discussing with neurosurgery they agreed to discharge her as long as we set follow up appointment with neurosurgery. Hooray for no overnight hospital stay but UGH for her odd behavior lately!
Monday, August 21, 2017
Morgan is 5 today!
This is always a difficult day for me. On your child's birthday you are supposed to have memories of one of the best days of your life, the day your child was born. For us it is still very painful to remember this day 5 years ago and the fears we had for her unknown future. I am not sure if time will heal or if these painful memories will always remain with us. I try to focus on how far she has come and I look her today and think about how much hard work we have put in to get here! Morgan on the other hand has been looking forward for her birthday for months! She has a 3 day celebration - family birthday party on Sunday, lunch date & picking out a present at American Girl Doll store with Mom on Monday, and tonight she informed me we need to pick up cupcakes for pre-school tomorrow because "a lot of kids bring treats to share with the class for their birthday".
I was flipping through pictures from a couple of days ago of Morgan and her brother Max playing in puddle in our driveway in their rain gear. I realized not even one year earlier we have a very similar picture of them doing the same but Morgan still had her walker. Today she is walking mostly unassisted and working on climbing stairs and jumping. Her right leg is still very weak and recently had a second round of botox injections in her right leg which does seem to help relax her muscles slightly. Cognitively she is doing very well and working with OT on her fine motor and drawing, writing, etc. We will hold her back from kindergarten to give her another year to catch up with gross and fine motor and grow (she is only ~32 lbs/38 inch tall and tiny for a 5 year old)! She continues to attend private OT/PT sessions every other week and did pool therapy this summer which I think really helped- she swims now in her lifejacket! Just a few weeks ago she would only sit in the shallow water or held a death grip on whoever was holding her in the pool/lake and would not let go :)
We have a few busy weeks ahead (life with a special needs child!) - next week an appointment for Orthotics, an appointment with sleep & behavior specialist Dr, OT/PT, a follow up MRI & neurosurgery, ECSE school starts, and we are planning to try a new adaptive Dance class! Her MRI is to check her ventricles again following the shunt setting change her last visit. She seems to be doing very well so I am cautiously optimistic.
This is always a difficult day for me. On your child's birthday you are supposed to have memories of one of the best days of your life, the day your child was born. For us it is still very painful to remember this day 5 years ago and the fears we had for her unknown future. I am not sure if time will heal or if these painful memories will always remain with us. I try to focus on how far she has come and I look her today and think about how much hard work we have put in to get here! Morgan on the other hand has been looking forward for her birthday for months! She has a 3 day celebration - family birthday party on Sunday, lunch date & picking out a present at American Girl Doll store with Mom on Monday, and tonight she informed me we need to pick up cupcakes for pre-school tomorrow because "a lot of kids bring treats to share with the class for their birthday".
I was flipping through pictures from a couple of days ago of Morgan and her brother Max playing in puddle in our driveway in their rain gear. I realized not even one year earlier we have a very similar picture of them doing the same but Morgan still had her walker. Today she is walking mostly unassisted and working on climbing stairs and jumping. Her right leg is still very weak and recently had a second round of botox injections in her right leg which does seem to help relax her muscles slightly. Cognitively she is doing very well and working with OT on her fine motor and drawing, writing, etc. We will hold her back from kindergarten to give her another year to catch up with gross and fine motor and grow (she is only ~32 lbs/38 inch tall and tiny for a 5 year old)! She continues to attend private OT/PT sessions every other week and did pool therapy this summer which I think really helped- she swims now in her lifejacket! Just a few weeks ago she would only sit in the shallow water or held a death grip on whoever was holding her in the pool/lake and would not let go :)
We have a few busy weeks ahead (life with a special needs child!) - next week an appointment for Orthotics, an appointment with sleep & behavior specialist Dr, OT/PT, a follow up MRI & neurosurgery, ECSE school starts, and we are planning to try a new adaptive Dance class! Her MRI is to check her ventricles again following the shunt setting change her last visit. She seems to be doing very well so I am cautiously optimistic.
Monday, December 19, 2016
Its been a few months since Morgan's shunt setting for her lateral ventricles were increased to 120 (from 50)...we have been monitoring her and were supposed to watch for "increased tone" or other concerns. It seems very vague and with Morgan we never seem to know if her behavior and actions are related to her shunts or something else. I have suspicion her setting is too high now and are under draining but could be completely wrong so wanted to jot down my non-medical/motherly instinct before we take her in and find out differently :)
She hasn't slept through the night since her last appointment and this is our first concern. Her pediatrician suggested seeing a sleep specialist but we haven't started down this path yet and it clearly started happening right after the last ER visit. She wakes up crying usually 2 times per night. Usually around 11pm and then again between 1-3 am and typically she wakes up crying- sometimes inconsolable. We have implemented a sticker reward system a couple of weeks ago which has helped keep her in her room but it isn't stopping her from waking up so to me the question is what is waking her up- headaches, bad dreams?
Her teacher talked to me a couple months ago now and mentioned she was also concerned because she seems like she is unwilling and unable to do things she used to do with little assistance - using the bathroom, dressing etc. She also said about two weeks ago that her balance seems really off which we have also noticed at home and received two phone calls from her ECSE school nurse after she has fallen. Incontinence is also a concern and has always been to some degree but seems to be getting worse, not better, and some days having several accidents.
She did receive Botox injections for the first time last Wednesday (two shots in both legs) to see if we could reduce tone/cerebral palsy and toe walking in her right leg (we are questioning why they injected in her left leg also). On Wednesday afternoon she was very out of it but we are thinking likely related to the Nitrous she had during the procedure? Then on Friday we went to her regular OT/PT appointment in the morning and she was so out of it- just laying there and mostly unwilling to participate to the point where her PT suggested we do put a call into Neurosurgery just to rule out any issues.
Moved up her MRI/Neurosurgery follow up from Jan 19th to next Thurs, Dec 29th - hopefully all is well and unrelated but worth the check for peace of mind!
She hasn't slept through the night since her last appointment and this is our first concern. Her pediatrician suggested seeing a sleep specialist but we haven't started down this path yet and it clearly started happening right after the last ER visit. She wakes up crying usually 2 times per night. Usually around 11pm and then again between 1-3 am and typically she wakes up crying- sometimes inconsolable. We have implemented a sticker reward system a couple of weeks ago which has helped keep her in her room but it isn't stopping her from waking up so to me the question is what is waking her up- headaches, bad dreams?
Her teacher talked to me a couple months ago now and mentioned she was also concerned because she seems like she is unwilling and unable to do things she used to do with little assistance - using the bathroom, dressing etc. She also said about two weeks ago that her balance seems really off which we have also noticed at home and received two phone calls from her ECSE school nurse after she has fallen. Incontinence is also a concern and has always been to some degree but seems to be getting worse, not better, and some days having several accidents.
She did receive Botox injections for the first time last Wednesday (two shots in both legs) to see if we could reduce tone/cerebral palsy and toe walking in her right leg (we are questioning why they injected in her left leg also). On Wednesday afternoon she was very out of it but we are thinking likely related to the Nitrous she had during the procedure? Then on Friday we went to her regular OT/PT appointment in the morning and she was so out of it- just laying there and mostly unwilling to participate to the point where her PT suggested we do put a call into Neurosurgery just to rule out any issues.
Moved up her MRI/Neurosurgery follow up from Jan 19th to next Thurs, Dec 29th - hopefully all is well and unrelated but worth the check for peace of mind!
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