Friday, December 03, 2010

Are Children with Seizures at Risk for Pertussis?

This morning I received an email from the school district regarding Pertussis and the Norovirus. Apparently, in our county there are cases of both. As you might imagine, my first concern was for Dear Son. Both Pertussis and Norovirus can be life threatening for Dear Son for two reasons: 1) he is unable to cough and clear his airways and 2) if he were to vomit, he is unable to roll over so if he were to roll back onto his back and vomit, he’d choke to death. In both cases, the biggest concern is aspiration pneumonia.

Of particular concern regarding Pertussis is that Dear Son has never received a Pertussis vaccine. Dear Son has recieved all of his vaccines however when Dear Son had seizures at birth and at that time, the Pertussis vaccine was never given for infants or children with seizures. Instead, they recieved the DT and not the DPT vaccines; as a result, he has never been immunized for it. I would assume this would put him at a greater risk for Pertussis. I pulled Dear Son’s immunization records to verify if he had ever received the vaccine just to be sure and he had not.

Specifically, my concern was that since Dear Son has intractable seizures, a progressive neurological disease and can not clear his airways; as a result, he is at high risk for pneumonia and also respiratory depression from anesthesia. Given his history, I had a few questions:

  1. If Pertussis was a larger risk for seizure kids who have never been vaccinated?

  2. If they were seeing any Pertussis cases in the ICU at Big Academic Medical Center?

  3. If he should he continue going to school even if there aren't any cases due to his history?

Since I was concerned, I thought I’d contact the Chief of Pediatric Infectious Diseases (ID) at Big Academic Medical Center (BAMC). I had some questions and figured he would be my best resource for general information regarding Pertussis since Dear Son would most likely end up in the ICU if he came down with something. I wasn’t sure if I should contact Dear Son’s Pulmonary Doc since Pertussis is a respiratory issue or his Neuro and decided to start with ID since that is his specialty and due to Dear Son's complex medical history.

Prior to contacting him, I called the classroom nurse to see if there were any cases of Pertussis or the Norovirus at the Transition Center. Dear Son finished high school and now attends the Transition Center until he is 22 years old. This Transition Center consists of two classrooms, of around 20 students total, and is located in a corporate strip type office complex. This is a good thing since he has less exposure to other kids who may be ill. At the present time, all of the staff, including his teacher, the head of the Transition Center and the school nurse are supposed to notify me of any illnesses in the classroom so I can keep Dear Son at home. The good news is that there weren’t any cases at the Transition Center. I contacted the Head Nurse of the Special Education Cooperative in the district, which covers the elementary, middle and high schools to see if there were any cases at the high school or in the district and so far there were not. Of particular concern however, was that even though all of the kids are healthy, many of them have a history of seizures and may not have had the Pertussis vaccine as well. So essentially, we have a subset of adolescents who are at a higher risk for Pertussis, especially if none of them have had the vaccine. That information is private however, so I have no way to know.

I sent an email to Dr. A, the Chief of Pediatric Infectious Disease at Big Academic Medical Center asking him some general questions regarding Dear Son and Pertussis. Specifically, I wanted to know if they had any Pertussis cases in the ICU currently and also if they were seeing an increase in Pertussis cases for children who had a seizure disorder and who have not received the vaccine. He responded quickly and asked if he could call me.

We had a nice conversation and he said that currently, they do not have any Pertussis cases in the ICU. I was glad since I know that once they start seeing cases pop up, it presents a bit more of a risk since our county typically mirrors cases in that county. We also talked about the Pertussis vaccine as it relates to children with seizure disorders. He explained that for a long time the Pertussis vaccine was not given to children with seizure disorders since if was assumed that if the child got a fever related to the Pertussis, it would bring on more seizures. A review of the data did not bear that out however. You have to keep in mind that Dear Son is currently 19 years old and the consensus at the time was the Pertussis vaccines were not given to children like him.

He went on to explain that the Pertussis vaccine that is given today is vastly different from the one that was given years ago. Back then, it was a whole cell vaccine (dead pertussis) that was given. Currently, a different type of Pertussis vaccine is given. It’s now an Acellular Pertussis vaccine, where they use purified proteins of the bug. The new vaccine is much safer for children.

While we were on the phone, I also talked to him about vaccines in general. I must say that the more I read, the less comfortable I feel about vaccines in general. On the flip side, Dear Son has some significant health issues and I can’t afford to make a wrong decision where his health is concerned. I said that it’s been my experience when I talk to a traditional physician regarding my concern over vaccines, they seem to feel that vaccinations are better than not being vaccinated however these are traditional physicians and not alternative based physicians. He talked a little bit about vaccines and then referred me to a book written by a friend of his, Dr. Paul Offit*. Dr. Paul Offit wrote the book, “Autism False Prophets” where he defends vaccines. Dr. A (Section Chief at BAMC) used the example of people’s concern over mercury in vaccines and it’s link to autism. He said that mercury was removed from vaccines however the scientific data showed that autism cases actually increased after the removal, not decreased. He went on to say that the amount of mercury that was in the vaccines, was less than that in a can of tuna fish.

I asked that since Dear Son has a progressive neurological disease if the Pertussis Vaccine was recommended. He explained that there isn’t any right or wrong answer. It can be done or you can choose to skip it, and that it is a personal choice. He also referred me to a Nurse Practitioner at Big Academic Medical Center; she holds special immunization clinics and will review the data with you and answer your questions to help you make a decision regarding a particular immunization for complex medical cases.

He also referred me to the National Network for Immunization Information. This website can be found here. He said it was an excellent resource for immunization information. I checked out the website and it provides science based information for healthcare professional and parents alike. If you click on the category heading at the top labeled, “For Parents”, it will provide you with information and contraindications for each vaccine. I found this information helpful.

I am fortunate to have such good resources for Dear Son. It is always nice when you can contact a physician and get good information. In the end, I’ve decided to follow up with Dear Son’s neurologist. It would be too difficult to transport Dear Son to Big Academic Medical Center for a clinic visit to go over his history, all of which Dear Son’s Neuro already knows. He is a good pediatrician, as well as pediatric neuro. Since Dear Son has intractable seizures and a Progressive Neurological Disease, both of which are contraindications for the Pertussis vaccine, he’ll be our best resource to determine the next steps regarding whether Dear Son should get the Pertussis vaccine and also whether or not he can continue to attend school two mornings per week. At least for now, I have more information about the Pertussis vaccine as it relates to Dear Son.

12/6/10 Update: I contacted the neurologist's office today and Dear Son's Neuro does not recommend the Pertussis vaccine. The reason is that if he gets a fever, it would lower the threshold for seizures (Dear Son has intractable seizures, has a VNS and is on multiple seizure meds.). It's the only vaccine he does not recommend. We will follow his advice.

*Note: Further information on Dr. Paul Offit can be found here. He is the Chief of Infectious Disease at Children's Hospital of Philadelphia and many consider him the most well paid spokesman of the vaccine industry; he is also the co-inventor of a vaccine against Rotovirus.
Photo is of Dear Son after school this morning.


Eileen said...

It is the scaremongering that has actually led to the scenario that is so threatening to Dear Son. If more than something like 80% of the population has been vaccinated you have something called herd immunity which means that, although there maybe isolated cases of something, it will not become a big outbreak and this reduces the risk to the people who for whatever reason cannot be immunised.

What is not understood is the concept that pertussis - as one disease amongst many - is no longer a killer for just that reason. My brother caught it from me when he was about 6 months old. He only survived because someone sat with him day and night for 4 or 5 months, lifting him any time he started coughing. Like Dear Son, he couldn't clear his chest by coughing because he couldn't sit at that age. I remember it being such an awful time - and there was never a question for me, my prem babies needed all the jabs they could have.

The disputed vaccines have been in use all across the western world for years and there is no evidence from properly controlled studies that they pose any of the risks the media have covered - except possibly to children who are already sick, as Dear Son was. What has happened is that children are now becoming seriously ill and even dying because of this campaign which has resulted in many mothers refusing all vaccines for their children. They thought you don't die of measles nowadays - you didn't usually, but it was because of the success of the immunisation programme. And children like Dear Son are at increased risk.

Someone will come along and disagree with me, I'm sure of that, but the truth is that the risk of not immunising normal children is far greater than that of immunising them.

You are a special case - and I do hope that you and his docs can come up with the right answer. All of us have a responsibility to keep our children safe - it's sometimes a big choice.
Hugs, Eileen

Dream Mom said...

Eileen-I think in my haste, I actually just misnamed my post. I have had a hard time taking time to write while jumping up and down caring for Dear Son. I had written the post and struggled for a title and then needed to take care of Dear Son. My apologies for any confusion. I will rename it.

I wasn't trying to crusade for or against vaccines but rather make parents aware that children with a history of seizures may not have been vaccinated against pertussis. I also wanted to share my concern over vaccines, since I think many parents can relate to that.

Your point is well taken. I appreciate you taking the time to comment.

Lisa R. said...

Dream Mom,

Unfortunately there is a lot of incorrect information on the web about vaccines, spread by people who are ideologically opposed to vaccination, and one of their favorite things to say is that Dr. Offit is paid by the vaccine industry to promote vaccines. It is true that he co-invented a rotavirus vaccine which has prevented thousands of hospitalizations in the US just in the few years since its introduction, and will save millions of lives once fully deployed in the developing world, where medical care is less accessible and almost half a million children do die of rotavirus every year. It is NOT true that he is paid by the vaccine industry. The patent on the vaccine he helped develop was owned by his hospital, not he himself, and while I'm sure he received some money from that, he has no ongoing financial relationship with any vaccine company.

I strongly agree with the recommendation to find vaccine information at sites like NNii's or even on the CDC website, CDC also has a phone number that anyone can call with questions, although you are probably better off talking with a healthcare provider who knows Dear Son.

Not a relative of his, just a mom who cares a lot about people having the right information to make good decisions about their children's health. :-)

Eileen said...

Dream mom - my post wasn't meant to crusade for or against either (although I am for, very for, except where there is a GOOD reason to consider not to, like your son). What I wanted to say is that your son is at risk because of the number of people who have chosen not to vaccinate their children without any reason other than to say "but kids don't die of that nowadays". They don't die of it in great numbers nowadays because of those vaccinations preventing big outbreaks. The vulnerable person is still at risk.
A similar or parallel example is with chickenpox - yes, it's a childhood illness and generally not serious. Let most small kids get it and then it's done and dusted. But when they have it - please don't let them out in public, willy-nilly. If a pregnant woman who didn't have it as a child gets it in early pregnancy her baby can suffer the same sort of damage as if she got flu. And adults can end up in intensive care if they get it.

It's a case of our collective responsibility towards children and young adults like Dear Son. If I had flu (proper, genuine flu, not a bad cold) and happened to be out somewhere and sneezed all over him causing him to get it too - I was at fault for not either staying away from him altogether or observing a far better level of hygiene in his presence.

None of us is an island - our actions have such far reaching effects we may not be aware of. We ALL need to think about it the way you already do - for everyone's sakes.
More virtual hugs,

Gloria (The Little Red House with the White Porch) said...

Hello -- I am not 'knowledgeable' enough to give any opinions on your platform for this post; BUT, I would like to say that I commend you, Dear Mom, because I have been following your blog for quite a while now, so I know that your biggest battle is working for ANYTHING for the betterment for your son. So may I say that I KNOW that whatever cause you take up, you will SUCCEED!!! You are a GREAT parent and a SMART woman; and I know that your son, if he could verbalize his thoughts of his mom, would say that he is just so proud of your efforts for him.
Blessings to you, Dream Mom.

Dream Mom said...

Eileen-Your point is well taken:)

Regardless, my original post title wasn't as clear so my apologies on that.

Anonymous said...

Dream Mom, this is a wonderful post, you are so very thoughtful and methodical in your decisionmaking, it is a very elegant quality. I wanted to add my comments to what Eileen wrote .... I believe that children like Dear Son are being placed at risk because other children whose immune systems are quite capable of handling the vaccine burden are not being vaccinated. My children are fortunate enough to have no contraindications to vaccines and they have received every required dose. I have done this both for their own safety and so that they can play their small role in protecting others. I wish more parents would understand this. Best of luck to you, whatever you decide.

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