Okay.....if you notice, I basically started this blog, and one my last "regular" posts was November 26th (I was getting on a roll until then). However, on November 28th, Anderson was diagnosed with CHIARI 1 MALFORMATION and our whole world changed.....Google and I have been attached at the hip ever since!
Let me give some background....in my heart, I just knew something was wrong with Anderson and I have known for a long time. At 3 months of age, Anderson was diagnosed with torticollis. This means his head was "tilted" to 1 side. He started physical therapy (PT) 2 times a week at Children's Hospital of Orange County (CHOC). He was achieving milestones, but they were not with the same precision as Kaitlyn and Ryan. Then around 1 year we started to notice his fine motor skills were falling behind and his gross motor skills were as well. At this point, his torticollis seemed to be resolved, but we had these developmental delays that we were dealing with. His gross motor, fine motor and speech were all affected. At 1 year of age (and still today)...Anderson had NO SPEECH. He does not utter 1 word, or even babble "da, da, or ma, ma". And, Anderson was not walking at 12 mos.
We contacted the state for an evaluation. We had a complete evalu done. Anderson's delays were significant enough that the state said Anderson needed physical therapy (PT), and occupational therapy (OT). However, he was too young for speech therapy. At 15 mos of age, and no progress in speech, we went back to the state and our wonderful case worker got the state to approve Anderson for speech therapy as well (Anderson was the youngest person our case worker has ever seen get approved.)
During these months, Anderson had all of us confused. The only thing his PT and OT would say was they saw a bit of hypotonia (a medical condition of low muscle tone). Then one day, Anderson's OTherapist told me she thought Anderson needed to see a neurologist. GULP. So....off we went. The 1st of November we saw the neurologist.
The neurologist said she saw a bit of hypotonia as well, which is what probably caused his torticollis at 3 months (the weak muscles caused his head to tilt to 1 side). The neurologist told us there would be over a 50% chance of NEVER knowing why Anderson had hypotonoia and these developmental delays. However, she wanted to order a MRI and send us to a geneticist. The MRI was scheduled for the end of November, and we went to the geneticist.
Our geneticist told us the same as the neurologist, we probably would not find anything on the MRI, typically these delays go "undiagnosed". However, she felt that Anderson had global hypotonia. Meaning....Anderson has low muscle tone thru his whole body causing the delays in gross motor, fine motor and speech. GULP AGAIN. This doctor told us that the hypotonia was secondary to a bigger condition...which could be 1 million different things. The geneticist also referred us to a metabolicist. So....our search continued.
We had the MRI on November 27th. I received a call from the neurologist on November 28th that told me to call her by the end of the day (NEVER a good sign!) When I called her she told me Anderson had Chiari 1 malformation. My first response was....could you PLS spell it? ;) Then, the doctor told me we needed to go to a neurosurgeon.
I called the neurosurgeon, (who typically takes 3+months to get into), and we got an appt in 6 days...again, not a good sign.
Now let me back track a little bit here.....6 weeks prior to Anderson's diagnosis, I told Charlie I thought Anderson was getting headaches. Anderson would bang his hand against his head, rub his head in "odd ways". In addition, Anderson is a "fussy" baby. He will just cry and cry. I will try everything to soothe him, nothing works...except if I give him Tylenol. Then, 10 minutes later, Anderson would be happy again....hmmmmm....
We met wit the neurosurgeon who explained Chiari to us (well, I will be honest, Char and I were googling the HECK out of it ourselves!) It is a rare condition and not well researched. Basically, Chiari means that in the back of our heads, we all have a hole in our skull. In this hole we should have our brain stem and spinal cord. In Anderson's case (and other Chiari patients), his brain is herniating thru this hole. His brain is being compressed against his skull with ech heartbeat, and it is compressing his spinal cord and brain stem. The #1 symptom....headaches!!! (YES, refer above!) The treatment is surgery...there is NO CURE, just treatment!
This neurosurgeon thought it could be contributing to Anderson's gross motor delay, but that was about it. He wanted to wait and see, give Anderson the benefit of the doubt.
He said if we saw Anderson start to bang his head more, plateau in his development or regress in development...then come back.
Okay....now it is the end of December....we have a diagnosis of global hypotonia and Chiari 1. We are just "waiting and seeing". We start to notice that Anderson is not progressing in his development, still not walking (17 months old) and still not talking (at all...no babble!)...Anderson was "plateauing".
So, in beginning of January, Char and I decide we need to go back to our neurosurgeon. We make an appt, and I decide we can't be the only family out there with this.... I am going to start seeking families with kids with Chiari. I found 2 support groups, I made a post on ech one....within 24 hours, I had over 25 emails with people who had children with hypotonia, developmental delays and Chiari!!! We felt like we hit the jackpot.
In addition, in January, we see the metabolicist. Basically, he said he felt that all of Anderson's delays and hypotonia were b/c of his Chiari and this doctor told us to pursue the Chiari.....
One of the common lines b/w all of the people who emailed us was...find the BEST CHIARI doctor, not the BEST NEUROSURGEON. Chiari is so rare, you really need to have an interest in it and study it specifically.
Thru the support groups, we located a pediatric neurosurgeon in Chicago who has a special interest in Chiari. I emailed the doctor, Dr. Frim, and he said that in deed these delays could all be connected and that we needed to come see him.
Here is a list of some of Anderson's symptoms at this point:
headaches
gags on his food 1-2 times per meal
weak arms
does not raise his arms up
delay in fine motor
weak grasp
poor balance
lack of speech
hypotonia
delay in gross motor - still not walking
On February 12th, Charlie, Anderson and I made the trip to Chicago. On February 13th, Anderson had 3 more MRI's to rule out other complications that Chiari can cause. February 14th, we met with the doctor and he did recommend surgery. The good news...the additional MRI's came back clear and normal! YAHOO!
Dr. Frim said he sees children with Anderson's problems. Chiari CAN CAUSE hypotonia and other items listed above. Finally...the link we have been looking for!!! In some cases surgery will help, some cases, it does nothing...but he was willing to try if we were willing to do the surgery. Charlie and I feel that if it simply relieves Anderson's headaches and makes him more comfortable, it would be worth it!
The neurosurgeon here in Orange County performs this decompression surgery approx 1/month, Dr. Frim does this surgery approx 1/week!!! BIG DIFFERENCE to us. We wanted someone who had the most experience with children and with Chiari! We feel we found our Chiari doctor.
Surgery is scheduled for Monday, March 3rd. We need to be there at 6:45 AM central time. Surgery will be approx 5 hours. We will be at the University of Chicago's Comer's Children's Hospital.
My Mom will be coming to California to be with Kaitlyn and Ryan for 1 week. Then, my mom and Popo Jim will fly them to Chicago once Anderson is out of the hospital and recovering. We need to be in Chicago for 2 weeks for Anderson's post-op appt. Charlie's parents are on call and ready to go and come help us in Chicago when we feel we need it. Charlie's Mom will be coming out to California the 3rd week when we get back from Chicago. We are so lucky to have our family and friends to support us!
The kind people across the country that took the time to answer my posts are our little angels. They took the time to share their stories and experiences with us and have led us to where we are today. We are so thankful for them and everything that has happened. We finally feel like we have something we can do to try and help Anderson after all of these months of searching! We could have possibly found a reason that we were told would be 1 in 1 million and over 50% chance we would never know!
I have such mixed feelings about all of this. One minute I am strong and ready to go, the next I am crying and crying. We are excited, nervous, anxious, hopeful, etc...I am sure you can imagine the thoughts you would have if your child were going under brain surgery.....
Because I believe in the power of prayer and positive thinking, I am sharing this with all of you. We feel so blessed to have such a great team of therapists at CHOC and an incredible doctor, Dr. Frim, watching over Anderson. I am SO HOPEFUL and I BELIEVE in my heart this is the answer we have been searching for......
We will continue to update this blog during Anderson's surgery and recovering. Feel free to check back to see what is going on with us! THANK YOU for all of your support.
