Shriners Update for D

Jalee85

It's a novel sorry!

We are on our way back from Shriner's. In a nut shell the Dr said that D's issues are all minor. Her hips are fine. She does have femoral anteversion and she does have Metatasus Adductus, but that these issues are all minor.

So why haven't they corrected? That is the question. She watched her walk over and over again and she noticed something no one else has ever caught before. She walks holding her right arm up in flexion; while her left arm moves freely. This is very reminiscent of a person who is recovering from a stroke!!!!! The Pediatric Orthopedic says that with my medical history she was at a higher risk of clotting. She thinks that she might have had a blood clot go into her brain and cause a very minor stroke on the left side of her brain shortly before or after birth; which is causing muscle control issues Im her right side.

In the back of my head I knew there might be some type of brain damage, but hearing the word stroke is a little mind numbing.

Anyways, the only way to prove the theory is a MRI of the brain under sedation. The Dr said she would rather not do anesthesia on such a young child for a procedure that wouldn't improve her condition. We are going to back in mid-June when she is older and reevaluate her foot and see their neurologist to determine if she has brain damage.

The good in all this is if it was a stroke it can only stay the same or get better, and it wouldn't be progressive condition like cerebral palsy that gets worse with age.

They also determined that she is EXTREMELY flexible. Leading to W sitting and other very odd maneuvers she does with her body. I'm hoping that my auto-immune connective tissue disease is truly auto-immune and not genetic, because if this is connective tissue problem it's genetic at her age. Fingers crossed that she is just going to be super flexible and an awesome gymnast

dovetail223

Thank you for the update! Keeping you and D in my thoughts

Slap8out

Love tits for support. I was thinking about you ladies today.
It's amazing what getting another perspective can do. I'm glad that this doctor saw something else that the others missed, not the outcome that I was hoping for you but I'm sure with continued physical therapy D will grow stronger and improve.

My thoughts are with you, stay strong momma! You are an amazing mother to D, please keep us posted.

Jalee85

@wedding06‌

It was a lot to digest, and I suspect her doctors and therapists are going to be shocked. It all make sense though. Every Dr looked at 1 aspect of the issue which didn't seem severe and then referred her elsewhere.

I have a bit of Mommy guilt that I didn't notice that she held her right arm in flexion when she walks. That is a huge red flag. Considering I worked with children with developmental disabilities and have been around adult stroke patients during recovery. I'm not sure how I never put 2 & 2 together.

At the end of the day though of it was a stroke. The good thing is it's done and over with. She can do PT or OT for anything she gets behind on and just teach other parts of her brain to pick up the slack for any damaged areas!

shelley1002

That's quite an update.  Good news is if it was a stroke she won't get worse and can only stay the same or get better.  Hugs mama.

Jalee85

Also, just wanted to mention that Shriner's is amazing. D was probably the least affected patient there. Some poor kids have it so rough. They gave out a huge stocking probably 2ft high and 1fy wide stuffed to the brim with age apropriate toys. They keep stickers at the sign in line to keep the kids busy. They have interactive games like you would see at McDonalds in the waiting room but at no cost. The entire staff was just amaxing. Luckily D wasn't old enough to really have any anxiety about going there, but I imagine it's very helpful for kids who know they will be having surgeries and other scary changes that would be coming.

emmylou78

Wow, what a roller coaster you are on @Jalee85‌ ! Hopefully she can get the treatment she needs. Glad to hear Shriner's was a good experience.

Jalee85

I have even more info now. One of these days I'll have to take time and write a more in-depth post, but basically lots of things happened during my labor that I wasn't aware of.

jessicat2inWA

Jalee85 said:

I have even more info now. One of these days I'll have to take time and write a more in-depth post, but basically lots of things happened during my labor that I wasn't aware of.

 

 

 

STUCK IN QUOTE BOX

 

Any update?  I am so interested in your and D's story.  I sortofkindof work in this field.

Jalee85

@jessicat2inWA‌

I do have some more information. I'm just not sure how informative it is.

Basically I have gotten all of her records from everywhere possible.

It appears if there is brain damage its most likely minimal but would explain her speech delay and issues with muscles.

They did a blood gas on her placental blood, and it showed that her O2 was not high enough to register a numerical value and her CO2 was a little high. Her PH was also off but the range it was off buy would appear to make it seem like it happened shortly before birth and not at the time of birth.

I plan to make an appt with her Ped after the weekend and discuss all these new findings, get her MRI ordered (but can't do until she is 18 months) and possibly test her for the blood clotting disorder I have (APS).

Reading the hospital records the doctors and the nurses records do not match, and I feel like they hid her blood gas results from me. I'm not even sure why because her PH would make it seem like it wasn't from delivery, but it's upsetting none the less.

D is amazingly stubborn and I'm sure whatever issues she may have she will concur. The human brain is amazingly resilient at this age.

jessicat2inWA

@Jalee85

That is so interesting.  Odd that the records and nurses notes don't add up.  D is and will continue to be amazing.  Resilience for sure.  You are a good Mama!  I know you will continue to search for answers and push for the best for D!  Hugs!