Intro

This is a blog dedicated to our Cavalier King Charles Spaniel puppy, Riley. He was just 17 months old when he was diagnosed with Syringomyelia. We are DETERMINED to over come this, make his life as rich, full and amazing as it was going to be before we knew of this diagnosis. We hope that other doggie mommies and doggie daddies out there who also have a baby with SM will be able to use this as a source of information and inspiration in their own personal journey through and to the other side of having a family member with SM.

Wednesday, September 26, 2012

Riley's Great Ordeal of 2012

It's been too long since my last blog entry and I have been remiss in following up- so I'm sorry. Perhaps it's been avoidance on my part? I guess I've been hoping that this was not something clinically significant enough to warrant a blog entry. At this point, it's beyond obvious that it is. Nearly 3 months ago, the week of July 4th, Riley started looking funny. By that, I mean that he didn't look like his normal self. He was mouth-breathing in a sort of a low-grade pant, and he was keeping his mouth ajar. All of the time. Whenever we would lean in for a kiss or try to touch or rub his face, he would push the right side if his face and his right ear into us. It was almost as if he wanted to scratch an itch or something. After a few days of this, we had enough (because he had enough) and we went to our vet, Dr. Mlekoday. She did some tests and, initially, found that he wasn't producing tears in his right eye and diagnosed him with keratoconjunctivitis sicca. We started him on lubricating eye drops and cyclosporine ointment. This reversed things pretty quickly and within a few days Riley was producing a normal amount of tears again. But his face rubbing, scratching and his mouth-breathing was still present, so we went back to Dr. Mlekoday and she did more blood tests. While almost entirely normal, one test came back positive titer for Rocky Mountain Spotted Fever. She immediately started him on two antibiotics: Baytril and Doxycycline. Riley was a trooper and he handled these meds very well without any apparent side effects. His mouth-breathing and the face-pushing stopped after just a few days. Dr. Mlekoday said that, just in case there were a deeper inner ear infection, we keep him on the Baytril for six weeks to be able to get a concentration that will penetrate to bone in the ear. In retrospect, I now realize that it was just days after stopping the antibiotics that Riley started to develop anorexia. Originally, this was a mild inappetance. We would feed him his usual dry kibble and he'd walk away from it. Michael would try and hand-feed him. Sometimes he'd take it, other times he wouldn't. Eventually, the times he wouldn't take the dry food became too frequent and so we tried giving him the same food but in their wet canned food formula. Initially, Riley loved this. However, it wasn't long before he started rejecting this, too. We tried doctoring up his food: We'd make combinations of dry and wet food, sometimes with some baby food (which he loves) and sometimes with homemade tomato sauce (also something he loves). In the end, he just stopped eating. I think we were in denial. Meal after meal, Riley would eat maybe a quarter of his food or none of his food at all. He would skip his breakfast and we would think, "That's okay, he'll eat at dinner." But then he'd only eat a teaspoon of food at dinner. This pattern went on for a few weeks while we were focused more in our other dog, Phoebe, who tore her ACL. Thats not an excuse: its an explanation. We were treating her non-surgically, and that involved 24/7 monitoring of her to keep her from walking and jumping. Though we were very successful with her and she has since recovered beautifully, it resulted in an unfortunate and unintentional ignoring of Riley's worsening anorexia. I don't know how I'll ever be able to forgive myself for that. Anyway, it was about three weeks ago when we realized that Riley hadn't had a full meal- breakfast or dinner- for weeks. His spine was suddenly palpable and visible through is thick coat. His ribs were more prominent. His harness was so loose I could fit four fingers through it. Now, Riley was a bit overweight and could have stood to loose a few pounds, but this was too much, too fast. In fact, at the next vet visit, it was clear that he went from 20 lbs to 18 lbs in just a few weeks. I know that sounds minuscule, but that's 10% of his body weight which is considered clinically significant. We went back to Dr. Mlekoday. This time, she did an abdominal ultrasound, an X-ray and every blood test under the sun. The x-ray showed him to have an abnormally small liver, though his blood work showed normal liver levels. On ultrasound, there were some "cysts" in his spleen, though these were not hyperechoic (i.e., they didn't light up) so they're probably old and reactive from some old infection or injury, a long while ago. There were no signs of any infection or disease. The only other "positive" findings were an abnormal cobalamin level and and increased PLI. Dr. Mlekoday felt that this was consistent with a malabsorption or malnutrition issue, which made sense since he wasn't eating. She wanted to repeat a bile acid challenge test, just to rule out any issue with his bile levels so we went back for that, and that was negative, too. But Riley wasn't eating. AT ALL. We started to get panicked. So we started grinding up his dry kibble into a fine powder in a spice grinder. Then we'd add water, turn it into a paste and force-feed him. The interesting thing was, he never fought us. He would lick his lips, as to indicatemthat he was hungry, but he wouldn't take the food from our hands, the bowl, the floor. The only way for him to eat was if we'd pry his mouth open, put a ball of the food on his tongue and then close his mouth. He'd swallow the food, but wouldn't really chew it. At this point, Dr. Mlekoday asked us to go back to Dr. Jason Berg who is the Neurologist who is an expert in Syringomyelia. Since it was 2 1/2 years since he last examined Riley, she wanted him to rule in or out the possibility that all of these symptoms could be neurological and come from his Syringomyelia. We went up immediately. Dr. Berg did a quick and minimal exam which we found to be somewhat upsetting, but he was adamant that this was not Riley's Syringomyelia getting worse. He said, "If this were my dog, I'd scope him. It seems like its G.I." He put Riley on Cerenia and said that if this didn't suppress nausea or induce eating in a few days, to get off the Cerenia and get him to a G.I. specialist. After 5 days, Riley was still not eating on his own and we were force feeding him. At Dr. Mlekoday's insistence, we stopped the Cerenia and made an appointment with Dr. Doug Palma, an Internal Medicine Specialist at The Animal Medical Center in Manhattan. She felt that a new set of eyes and ears on this case may bring about a different thought about what's going on. Last Thursday, we brought Riley to Dr. Palma. I really like Dr. Palma. He is a doctor's doctor. Very thorough. Very methodical. He spent over 30 minutes examining Riley and then he called us back to talk. He said that, on clinical exam, this is not a dog who is manifesting signs and symptoms of any obvious GI disorder. He said, "my clinical gut instincts are that this isn't G.I." I like a doctor who listens to his gut. That's a big part of my clinical judgement and decision making process as a doctor, myself. He continued to say that there were obvious and reproducible pain responses on physical exam which were suggestive of advancing Syringomyelia. He was clear to acknowledge that he had just seen a neurologist and didn't want to disagree with him, but his clinical index of suspicion was very high that this was his Syringomyelia. He called his colleague, Dr. McCue who is a Neurologist at The Animal Medical Center, to come in and do an impromptu examination on Riley. After that exam, he was very clear that we should treat this as Syringomyelia-pain related first. As he said, "We can always go back and scope him if we need to." So that's what we did. On their instructions, we brought Riley home and increased his 10 mg of Omeperazole dose from just once in the evening to every 12 hours (we doubled the dose. ) Again, as a reminder, Omeperazole is used in Syringomyelia in dogs to lower cerebrospinal fluid levels so that the brain swelling (that causes pain) is reduced. They also added Gabapentin (Neurontin) and wanted to see if this worked to resolve his pain and get him back to eating. The rationale behind this is that, since dogs who are in significant pain stop eating, if the Neurontin knocked out his pain, then he'd eat. After one day on the Neurontin, Riley was "stoned"-- his gait was ataxic, beheld his head lowly, and he was (generally) out of it. However, for the first time in over two and a half years, his "hot spots" were shut off! I could touch his chest, his right side if his neck, I could rub him there and he didn't scratch! It was shocking. Even more shocking is that, lat Friday night, we put his dry kibble in is bowl and he put his head in the bowl and ate his dinner! We were so excited that this nightmare might finally be ending, with an answer as to why he wasn't eating. That hope was short lived. Riley never ate again without being force fed. Dr. Palma was so generous with us, keeping in touch with us daily- sometimes many times a day- via email. Two days ago, we agreed that the Neurontin wasn't really "working" for Riley; It's just making him sedated but his scratching/Syringomyelia symptoms are back and he's still not eating. Clearly, this isn't Syringomyelia. At least, not entirely. We woke up early this morning and, with a fasting Riley, came into the Animal Medical Center. We met with Dr. Palma before saying goodbye to Riley. The plan is to start with the upper endoscopy to look in his mouth and throat, down his esophagus, into his stomach and small bowl to look for any potential issues, like ulcers, masses/tumors, irregularities, etc... Then, while still under anesthesia, they'll take him up to the radiology suite and do an MRI of his brain and spinal cord, to check on his syrinx. They'll also be looking at his ear and the whole right-side of his neck. If there is any reason to suspect meningitis (which is not uncommon in these cases) they'll then do a lumbar puncture and cis-puncture (spinal taps). It's been two and a half hours and he's still upstairs. We're waiting for an update and still holding good thoughts. More to come....

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