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CP diagnosis
DS saw the neuro for the first time in well over a year and this time we had a new MD. We discussed our concerns re: CP and the fact that we still did not have a diagnosis after much therapy and specialists. We were also prepared with a slideshow with pictures and videos of some of the more abnormal findings from DS' first year. She said that based on what we showed her and the lack of other diagnosis she was comfortable diagnosing him with CP but the official wording was "static encephalopathy". Anyone else had this and is CP just a more generic diagnosis? DS is doing pretty well now and just evaluating him currently she said that she wouldn't have diagnosed the CP without all the data we brought her. We will start seeing a new MD that will evaluate and prescribe therapies, hopefully we can get him closer to his full potential more efficiently now. The diagnosis makes me a little sad but it definitely explains all we have been through and I feel it fits. I'm pretty frustrated with our old useless Neuro but maybe we needed to be fully organized and prepared to get the MDs to listen to what we were saying and finally admit DS has some real issues.
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Re: CP diagnosis
It's interesting to me how every doctor is so different. I think that just means static brain injury basically. CP as I understand it is a clinical diagnosis of brain injury. + movement disorder.
DS has been diagnosed with CP. He has movement issues and motor delays with mixed tone (was low tone primarily for the first almost 2 years) and had a brain MRI showing PVL, likely from h.i.e.). Since it's an injury, it is expected to be static and not progressive.
In DS's case, we are treating his delays and symptoms, not a diagnosis regardless, since different kids are affected differently. We are seeing a new doctor to help with tone management since it's affecting him slightly differently as he grows.
I hope you get the services your son needs.
I found this, "Cerebral Palsy (CP) is caused by birth injuries that affect the central nervous system, also calledstatic encephalopathy. " from the John's Hopkins Website, https://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pediatric_neurosurgery/conditions/cerebral_palsy.html
I've never heard that terminology before, and we have seen 3 neuro's and 2 neurosurgeon's.
I don't have time to post more now, but Peyton's CP is mild and mostly right sided. I will add more later. Most dr's see Peyton now and think i'm crazy when I tell them she has CP. She has been in PT since she was 2 months old and usually only has spasticity problems when she wakes up (which I need to make a post about). Otherwise she just uses her left side more, but not noticeable to someone who doesn't know her. She does have some vision problems and speech as well which are normal for kids with CP.
DS2 (currently 2yr, 2.5mos) was diagnosed with CP at just shy of 10mos old. I have not heard of the terminology of static encephalopathy. CP refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don?t worsen over time. I'm happy to answer any questions you may have about CP but I am curious as to what data you brought in for the doctor. I'm glad someone was listening to you. CP is typically diagnosed before the age of 3 and is a clinical diagnosis only meaning you can't take, for instance, a blood test to confirm the diagnosis. It is typically based on the case history and symptoms. CP, by definition, is not progressive. What is done is done. It may look like it gets worse, but it isn't. It is more of how the CP is manifesting at different ages. Has your LO had a MRI done? What were the results.
DS2's CP shows up as him favoring his right side (right handed since about 6mos old), his legs/arms are tighter and his torso is looser. He has been 4pt crawling (what is typically considered crawling) at age 25mos and can cruise but he cannot stand, walk, or sit independently. He has PT, OT, speech, and feeding therapies. He is on the mild to moderate side. He also wears glasses.
My pregnancy was complicated by low fluid levels, intrauterine growth restriction, breech positioning, he was stuck in the same position for at least 7 weeks and I had a C/S at 37 weeks for fetal distress when he had dropped his heart rate during my NST monitoring.
I am a NICU RN so have worked with countless babies in the last decade. In the first day of life his left lip was drooping like he'd had a stroke, he was overall very stiff like it felt very awkward to bend his arm around my side while nursing him, he had more of a bite than a suck and held his hands in fists with his thumbs inside for the first two months. He was a horrible sleeper, probably because he was in pain. MD's always blew me off when I pointed out his differences and said it would get better so don't worry. Very lucky for me a Lactation Consultant noticed his problems immediately and referred us for Bowen therapy which I really feel has saves his life and delayed his diagnosis because of all the progress he made. At 4.5 months he still wasn't playing with toys or interacting with the environment, he didn't know he could and we had to teach him. By 6 months I convinced the Pedi to see a Neuro because I was so worried about him; unfortunately the first Neuro was quite dismissive since they see much more severe cases often and he was progressing with Bowen and chiropractic therapy. His MRI at 8 months was normal, but we've been told that doesn't mean much. Shortly after we started feeding therapy with an ST, PT and later OT as a result of me trying to get his Bowen covered by our HMO. Anyhow, I think he was diagnosed because of mixed tone (tight muscles though functional with Bowen, hypotonic for very low strength) and developmental delays. Our videos show that we could lean him against a wall in a standing position at 2 months old because he was so tight, his first crawling and walking (by 14.5 months thnks to extensive therapy) was very uncoordinated like Frankenstein and still some abnormal reflexes. He is a very sweet happy boy and we are so lucky with all his progress. I hope that helps, let me know if you have more questions and good luck with your cute little boy.
I think I answered some of your questions in a reply to a PP. We have seen multiple specialists (Neuro, Genetics, Cardio, ST, PT, OT) and I think he was finally diagnosed by the lack of other explanation / diagnosis and history. That is great that your DS is crawling, it's crazy how much those milestones mean when you work so hard to help LO achieve them.
I'm a little jealous of parents that don't have children with SN because we've gone through hell fighting for our son and meeting his needs and it is so hard but obviously worth it. We are trying to be optimistic about the LO on the way although our Neuro made a comment about how we're probably not thinking about having more children at this time and I had to tell her I'm pregnant. The geneticist didn't seem concerned but I feel a bit jaded like my body failed DS even though I did everything right. I guess I am trying to convince myself things can go smoothly this time. If you feel comfortable, any advice or thoughts would be appreciated. It's been so long that I got to the point I didn't quite expect the diagnosis anymore and then to get it while pregnant is a little rough.
I could google but I don't have time at the moment. What is Bowen therapy? And good for you for continuing to fight for your son even though you kept getting dismissed. DS2's original pediatrician dismissed my concerns and it wasn't until his 9mos well baby appt (with a different pedi) and a question that the EI PT had me ask that things got started in getting things figured out. He was diagnosed at 9mos, 3wk, 3d. I was told by the original neuro prior to having DS2's MRI done that people with CP can have a normal MRI. DS2's MRI showed PVL. Is it possible that a MRI at this point would possibly show anything? Basically DS2's MRI helped support his CP diagnosis but I guess we gave a pretty classes case history according to the original neuro.
Although my pregnancy was fairly normal (well, until the end I guess), DS2 apparently had a blood clot where the umbilical cord and placenta met which everyone believes caused lack of oxygen to his brain which caused lack of movement which caused his birth via emergency c/s. I've been told that the clot thing was just a fluke and if I got pg again I'd have no increased chance of another SN child (well, except that I am 38 so I would have an increased chance due to age).
I understand about being jealous. I have a NT son also (DS1) and my kids have a 7mos old cousin. She is doing things that DS2 just learned to do (crawl) and is doing things that DS2 cannot do (sit). Sometimes I like living in my own little world where DS2 is "normal". For the most part I consider him typical even though he isn't. The only time I ever "see" his disability is when I'm faced with it when we are out in public and I see all these kids his age and younger doing stuff he can't. Makes me upset. I don't much like going to the park anymore because of this but we still go because I want him to do as much stuff as typical kids as possible...even if he needs extra help to do it. I want him to look back on his childhood as being happy and content.
I probably went on a few tangents there. If you have questions let me know. I am always looking to connect with fellow CP moms.
Bowen therapy is a different approach to massage, it releases tension across the muscle and nerve fibers instead of going with the fiber of the muscle like most traditional massage. Just like any therapy it is only as effective as the practitioner, lucky for me our practitioner has been practicing about 15ish years and is amazing, she has more than a handful of clients that travel from out of state or internationally semi-regularly for treatment. There aren't much research studies to prove the effectiveness of Bowen therapy unfortunately but I have seen it help many children (some miraculously) and adults. Our practitioner is Judy Terwilliger of Flexibly Fit, her website is probably not completely up to date but it is www.FlexiblyFit.com
An unrelated but cool tangent, my twin sister and one of DH's coworkers both have CP and they also both have master's degrees. My DH has always said he doesn't mind if he does have CP because that just means he will end up with a master's degree. Here's hoping our boys follow their academic dreams too!
DS has a genetic disorder but is pretty similar to your situation. His hypertonia is what actually got him sent to the NICU. He was stiff as a board. you could put one hand under his belly and lift him and he would stay stiff as a 2x4.
A 2nd pregnancy is very hard when your first has SN. We got DS's diagnosis the day after I found out I was pregnant. I was 8 weeks when the geneticist said I'm a carrier. She instantly started in on getting a CVS or amnio so we could terminate if the baby is a carrier. DH and I were really put off and we've had to stress to many doctors that we're not terminating and most likely won't do any genetic testing. Every doctor assumes we'll do IVF and only use the healthy embryos. It's hard to feel that people don't value yoru child's life because there is something wrong with them.
With all the talk of termination and IVF with PGD I feel like we're just pages of Aldous Huxley's brave new world.
It is really hard for some people to hear the or a diagnosis. We got our diagnosis when my husband was deployed. I panicked and didn't want to tell him at first because I wasn't sure how he would react and with him being in a war zone I just wanted him safe. Turns out he took it WAY better then I even imagined. My MIL was with me when I got the diagnosis. She was shocked while I almost laughed out loud (seriously I almost did). I was thinking CP but at the same time wasn't expecting them to actually SAY it. I was in such disbelief in the beginning but am doing fine now (although I still play the pity party sometimes of why him).