When we first learned of Caden's brain injury we were devastated. When we were told he was at risk for developing cerebral palsy, we were heart broken. But when we were told that cerebral palsy is non progressive and that Caden's abilities would not regress, we were relieved. Matt and I believed that with dedication and hard work, Caden would develop and reach milestones, although at his own pace.
Caden's development was slow; much slower than anticipated. His many hospitalizations and illnesses created set backs we were not anticipating. However, a year and a half ago, when Caden was two, we began to see some progress. By age two and a half, Caden had good head control, was able to stand and sit for short periods of time, was taking a few steps with help and had an eight word vocabulary (car, bug, hug, go, again, etc.). His physical therapist believed he would be walking with a gait trainer by age four. We had hope. We believed.
Caden is three and a half today and he can no longer hold his head up, sit, stand, take steps and can only say "yeah" and "hi". He went from being very spastic, requiring Botox injections and medication to relax his muscles, to very floppy with little tone. When we put him in the sitting position, he literally folds in half with his head between his feet.
Caden also once had a very strong personality. If he didn't like something he would let you know by crying and screaming. If we left him alone on the floor he would scream until we came to get him. Now, he just lies there, motionless and unaffected.
This is not to say that he never expresses emotion but his emotions are erratic and without stimulation. He will laugh for hours for no apparent reason and then suddenly start hysterically crying. It's as if the wiring in his brain has gone haywire. Something is clearly wrong but no one, including doctors, know why.
This week in particular, Caden's physical and neurological well being has taken a nose dive. Some medication changes have been made but none that would send him spinning out of control, yet on Friday Caden had over a hundred myoclonic jerks (sudden uncontrollable jerking motion that could indicate seizure activity). This is more than he has ever had in one day, so his Neurologist at the Children's Hospital of Philadelphia (CHOP) did an emergency admission so that Caden could have an EEG done to check for seizures. As with most tests and studies done on Caden, his EEG was normal. Well, actually it was far from normal, but it did not show any seizures. His EEG showed many irregularities. His Neurologist wants to put him on seizure medication to see if it can help regulate some of his brain patterns.
Caden has also been vomiting more and has had an increase in intestinal and abdominal pain over the past month. His G.I. wants to start him on Reglan which has many concerning side effects. At this point, we have not started either medication because the Neurologist and G.I. doctor are arguing over which drug is more important to try first.
So here we are, settled in for another hospital stay (number eleven, I think). Caden will be here through the week as they continue to try to figure out what is going on with him. This is a game we have played for the past year and we don't expect an answer will come easy. During this stay, doctors are looking in to the genetic possibilities, along with any neuromuscular or mitochondrial type disorder. For the first time, doctors are agreeing with us that Caden has more than just cerebral palsy.
The plan for the week includes the following:
*Exome genetic testing (first one ever to be done at CHOP) which will check for any genetic defects or mutations.
*EMG (Electromyography) which will check for any muscular disorder.
*Salivagram which will check to see if he is producing too much saliva which is causing him to gag and vomit.
*Endoscopy which will check for any damage to his stomach and esophagus
*Shunt revision surgery where they will clamp his shunt to see if he improves neurologically due to his shunt possibly overdraining.
And of course a ton of lab work.
Caden's surgery is scheduled for Thursday and if all goes well (Caden has a history of making a short visit into a very long one) we will be home Friday.
I often ask anyone I come across (FedEx guy, pizza delivery guy, etc.) for any ideas as to what's going on with my son. Doctors can not figure it out but who's to say a "regular" person can't be the hero who diagnoses my son. Any information that anyone gives me, I investigate. I know that a diagnoses does not mean a cure, but it is hard to manage his care and find support when we have no answers. Here is a list of Caden's symptoms, both chronic and acute. Please feel free to comment with any ideas and please share this post. One of the reasons I started this blog was in hopes to find someone out there who would be willing to take a special interest in helping my son.
*High blood pressure
*Severe chronic hiccups
*Excess body hair
*Barely moves or responds when upright but more vocal and active when laying flat or upside down
*Very high pain tolerance
*Low tolerance of heat
*Has lost weight over past year (only 25 pounds, same as many one year olds)
*Has not grown in a year (34 1/2 inches, four inches shorter than his identical twin brother)
I am overjoyed by the amount of support we have received thus far. I've had so many more page views than I had ever imagined. Thank you for being a part of Caden's journey and coming along for the ride.