Friday, July 15, 2011

Q & A....

Lots of good questions have been asked about JoJo and all of his testing/treatments, so I thought I'd answer them on here so everyone could read it because I'm sure your wondering, right?!? If you have a question you'd like to have answered, feel free to post an anonymous comment below & I'll try to update the blog with the answer!

1. What has Jordan been officially diagnosed with?

JoJo's "official diagnoses" thus far include benign myoclonic epilepsy, asthma, and Gastroesophageal reflux disease. He's also had RSV which placed him in the hospital when he was a baby chronic lung infections & sinusitis as well as Fevers of Unknown origin. Pending dx's may also include laryngeal cleft and periodic fever syndrome.

2. How much medicine does he take/how many different prescriptions does he have?

Jordan has several prescriptions he takes on a daily basis. He is on Keppra for seizures, which is twice a day. Of all of the anticonvulsant drugs, this one has the least side affects and does not require frequent lab work. He has shown zero side effects (thank God!) He also takes several medicines for the treatment of his asthma: Singulair, pulmacort and albuterol (nebulizer treatments) They've added in Prevacid twice a day for the reflux as well as prescribing thickened liquids. (nectar consistency) We have an amazing pharmacist who I feel knows our family really well-in fact the other day, the dr faxed in the prevacid script but in the wrong form & called me to double check that it was the wrong form (capsules instead of tabs that dissolve)

3.What tests & procedures have they done/what did they test for?

You name it, I'm pretty sure they've tested him for it! In all seriousness, he's been tested for Cystic Fibrosis (sweat test), he's had multiple immune work ups that tested for immunodeficiencies, he's had allergy testing, he's been tested for lyme disease, lupus, and double-stranded DNA. He's had an EEG, 3-day ambulatory EEG, an MRI and CTs of his brain, he's had multiple X-rays of sinuses and chest as well as regular blood work and urine cultures. He's had a bronchoscopy and a barium contrast swallow study. He's had multiple stool sample studies as well to rule out any kind of parasites, fungus, etc. He's had ear tubes placed as well when he was very young (5 months old I believe) for recurrent double ear infections that did not respond to treatment.

4. Have you thought about getting a 2nd opinion?

The good news is that there are several options for us to consider since we live in an area where there are many hospitals. In particular, we have access to some top research hospitals and medical schools found. So to answer this question: Yes, we've thought about that when JoJo's infectious disease doctor "Dr. C" kinda blew us off. We looked at Duke's Pediatric Infectious Disease program after we consulted back with our regular pediatrician. She asked her fellow pediatricians and the consensus for a recommendation for peds ID was Duke. We almost made an appointment with them when our pulmonologist, who returned from maternity leave, took charge of the situation and said that she would not rest until we discovered what was going on with Jordan. We promised we'd stick with UNC as long as we were getting somewhere, and we would call Duke as soon as we felt weren't. But JoJo's pulmonologist is awesome! She's our CHAMPION-she meant what we said, and we're so thankful to have her! So for right now, we're staying at Chapel Hill but we still have the numbers for a second opinion at Duke, as well as another out of state nationally known children's hospital.

5. What is a laryngeal cleft and why has it taken them so long to find it?

A laryngeal cleft is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. Normally, when the larynx develops, it is completely separate from the esophagus so swallowed foods go directly into the stomach. When a laryngeal cleft occurs, there is an opening between the larynx and the esophagus so food and liquid can pass through the larynx into the lungs. There are several different types of laryngeal clefts (Types I through IV), classified based on the extent of the clefting. (from the National Institute of Health Office of Rare Diseases Research)

This is in fact a congenital birth defect, meaning it was present at birth, and it affects 0.01% of live births and affects boys more often than girls. It is usually found early on during infancy due to the presenting symptoms: feeding problems including aspiration, poor weight gain/growth, chronic lung issues including wheezing, recurrent pneumonia, etc.

JoJo has never really had feeding problems as an infant, and his weight & height, although on the low end (between the 5th-10th percentile), his growth charts continues to remain consistent. He's had recurrent pneumonia & bronchitis along with his asthma symptoms which include wheezing & coughing. Given the fact that he kept getting pneumonia, bronchitis and things of that nature, we assumed he had either an immunodeficiency or something was wrong with his lungs. We did not realize until just recently that he was aspirating. It was not until the day before his bronchoscopy when his pulmonologist asked us if he coughed or choked a lot when he drank. At first my initial reaction was no-but the rest of the day I watched for it. Sure enough, almost every time he had a drink, he was choking and coughing. Once the bronchoscopy came back showing his lungs were developed correctly and no bacteria that grew was abnormal, the team of doctors decided to look at the aspiration possibility. And that's where we are now.

6. I thought you were an NC State fan! Why are you going to UNC?


OF COURSE WE'RE NC STATE FANS!! But even the pride for our favorite college would not stand in the way of getting the best care for our son and right now, the NC Children's hospital gives us just that! Not only is the UNC peds pulm. department ranked number 10 in the entire country by the US News and World Report, (NC Children's hospital is the only children's hospital in NC to rank in the top 10 in any department by the way!) but we've also been treated so well at UNC-almost every interaction with someone from the UNC has been positive! The nursing staff is amazing and JoJo has become a nurse favorite. They repeatedly go out of their way, above and beyond what they have to in order to make us comfortable. They do their best to schedule all of JoJo's appointments and procedures around the same time since they know we drive a ways to get there. The radiology department always thinks of not only Jordan, but of brother and sister at home. Every time we return home from UNC when he's had to have an X-ray or CT, he's always been able to bring his siblings stickers home! Even the valets are good to us-every single time we go, at least one of them remember's JoJo's name which is pretty impressive. (Maybe we tip well, or maybe JoJo's just really memorable...either way it's pretty remarkable.)
That being said, we do our part to make sure that we let our loyalties be clear every time we are there. JoJo usually rocks an NC state outfit or shirt and Mama usually sports hers too. We are almost always are given a "hard" time about it every time too. Usually it's a funny comment like, "Normally I wouldn't treat an NC State fan, but he's so dang cute I guess we can make an exception!" Sometimes on the way home, we even stop by the GO PACK store in Raleigh! Here's a few pictures to document it!
Jordan during his 3-day ambulatory EEG not only wore his Wolfpack gear, he also sported it on the gauze!
At the NC Children's Specialty Clinic in Raleigh before we met our diagnostician "Dr S"
Worn out but wearing his wolfpack red!
Have any other question about Jordan or his "issues"? Feel free to leave a comment below and I will do my best to answer it! Thank you for your continued prayers as we journey further on this road, even though I thought we were almost finished!



1 comment:

Ken said...

My question is, "Where's the basement?", to which your answer must be, "There's no basement in the Alamo, silly!" On a more serious note, seeing all of his diagnoses spelled out is quite chilling. What are they doing to control the beningn epilepsy?