mild cerebral palsy and hip osteotomy

[devon]

Anyone out there dealing with hip subluxation/hip displasia? DS is 3.5 years old.  He has Noonan Syndrome which makes him hypotonic, and mild hemiplagic (right side) cerebral palsy (hypertonic).  

He started walking around 18 months. He has loose joints in general due to the hypotonia but also issues with tightness especially on the right side in the hamstrings and achilles.  He does have extremely tight hamstring muscles as well. Around that time, his physiatrist wanted to have a base x-ray of his hips and discovered he had a 25% hip subluxation on the right side and 20% on the left. She wanted a repeat xray at 2, which we got and it was much worse - it showed a 40% sublux on the right and a 25-30% on the right. She referred us to an ortho and said that if it didn't improve in 3-4 months we'd likely need an osteotomy (sp?) surgery which is horrible. We went back in 4 months and it was 'improved' again to 15% left, 20-25% right. He was prescribed a hip abduction brace to wear at night (which he does) and a follow up xray in 6 months. That was at age 3 and it showed no worsening but also no improvement. Fast forward to now (at 3 years, 7 months) - still the same and he has extremely shallow hip sockets.

The doctor said that basically by 4-5 years old, the hip sockets should be more cupped and if they are not cupped by this point, they probably won't be. DS's are shallow and he still has the mild sublux on the right. He's giving us to age 5 but said if his sockets are not more cupped by them, it's time for the pelvic osteotomy (which is what the ortho doctor at the NS conference last year said would likely be the case with Matthew). I REALLY want to avoid that surgery and it is really a scary thing to have hanging over our shoulder. Anyone have experience with it?

[devon]

Also - anyone know of a good CP forum for parents with kids?  His needs are extremely mild in this regard but I haven't found great resources out there.

[purplepaisleymama]

I don't have any real info for the CP forum...but would love to ...mild CP here with my youngest and it is hard to find any real support out there.  Though for the hip issues we have had some exposure to the hip dysplasia info...that is what we thought was an issue for our daughter and though she does have very lax joints she doesn't have dysplasia...we found out about the CP when her Pediatric Ortho (who just happens to be an expert on CP) was concerned about her ability to turn her arm....it was so mild that all of the previous medical professionals had missed it.....MRI and we have a diagnosis.  We have used both chiropractic and CST (Cranio sacral therapy) to help with her alignment and her physical issues with the CP....and our oldest son has a bunch of issues with his hips...not true dysplasia but a misalignment when her was very young and not caught or treated gave him hyperflexibility and almost subluxation in his hips and arthritis in his knees and hips....he is 14. The combination of the Chiro and CST was the best thing so far in addition to the supplements of EFA to help with the pain and alignment. Our Ped Ortho does not agree that the chiropractic and CST will help...but does not discount the benefits we have all seen :)

I know that it is so hard to not know what the future will hold with the hips...and to have to make decisions with the rest of their lives in mind....it is so hard to fathom...sending hugs!!!

The CST that we see is a group that is very experienced with special needs and they are wonderful with the issues that my daughter has in regards to the sensory needs she has etc.  The owner of the group has two children with special needs and had such an amazing result with CST for them he created the center......very gifted and caring people.
 

[juliejancius]

Hi Devon,

Saw your post on mothering.com.  I have a daughter with NS too.  I'm not sure if you are on Facebook (I wasn't until I had my daughter), but I wanted to let you know that there are two great private Facebook groups with parents that I know can answer your questions.  The first is RASopathies Foundation:  Online Support Group (NS is one of the 9 RASopathy syndromes) and the other is the Noonan Syndrome Family.  My daughter is only 20 months so I don't have enough experience to answer your questions, but I know that the parents on these groups could help!

Julie 

www.teamrasopathies.org

www.noonansyndrome.me

[devon]

Hi Julie,

Yes, I'm on both those FB groups - unfortunately, it seems like this is more related to the CP than the NS as no one else has experienced it.  

purplepaisleymama - thanks for your history.  Matthew is very mild CP as well - he had right sided discrepancy from a pretty early age so that is really the only way that we knew - and honestly, if I had not pushed for an MRI, probably wouldn't have the CP diagnosis at all and everything would be blamed on the Noonan Syndrome.  We unfortunately don't have any local CST but I would have hit them up where we used to live.  I've thought a lot about chiropractic and I'm just so leary since he is so hypotonic in some places but hyper in others.  I have had great luck with my hip issues with chiro so I probably should just bite the bullet and see what they can do - better than surgery at least now!

[purplepaisleymama]

I think that if you can find someone who is familiar with special needs...and many Upledger Chiros are as well as a few other approaches...you are going to get some results with the adjustments...many kids have some huge compensations from birth and then it all piles on after....add the special needs in and it gets even more layered. I know that for us the combination has been a huge help but the CST is really al most no touch at all...though I have a very sensory driven girl and she is actually more comfortable with the Chiro adjustments....she hates being touched for so long. Our chiro adjusts while she is on me....she will lay belly to belly and he will check her back ( he is upledger and a few other approaches, CST included) he will softly almost rub her back gently to adjust....then on to her legs and neck, though he doesn't adjust with cracking...just gently moving. Then she turns over, he speaks to her gently and softly.....usually talking to her about his daughters or other stuff he knows she is interested in...he has since she was days old...he always asks permission...when she is her back to my belly he will check her hips...if she is feeling more comfortable that day he will try for her on the table....and he gently checks the rotation and the length etc...he will adjust in her mouth(which is the only time she screams....she hates any mouth touch) and i will use her finger in her mouth to keep her from biting.....kids won't bite themselves....they will not like it but it will help her immensely...her gait is so much better after both chiro adjustment and CST...she will look almost 'normal' in her gait after.