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30 min seizure after pentacel vax

post #1 of 37
Thread Starter 

my sweet 2 year old dd had a 30 MINUTE seizure 3 days after receiving her 3rd dose of pentacel. it was afebrile (no fever) and she has seen 2 neurologists since, had an eeg and appears normal by all accounts. no more seizures have occurred. the first few hours after the seizure she didn't speak and was confused, acting abnormally. she slept in the pediatric ER for 15 hours afterward and although she was still tired after waking, her personality and speech returned. thank god.

 

first...SCARY. i just about had a heart attack witnessing the episode, which happened to take place in our family car on the interstate, while my husband raced to the nearest hospital. her confusion post seizure was also very anxiety inducing.

 

we have chosen delayed vaccination for both of our children, didn't start any until age 2, and then only 'one' shot at a time. so this was her 3rd shot ever. no others. this shot was a combo shot however.

 

many of the doctors dismissed the correlation between the vax and the seizure...one told me it was a 1 in 10,000 chance. the pentacel literature does detail, although they claim so very rare, seizures following the vax.

 

has anyone else had issues following pentacel?

i am terrified for her to have any more vaccinations.

post #2 of 37
Quote:
has anyone else had issues following pentacel?

 

I have not done pentacel

 

What I would like to know- if you know, is what "they" are attributing this to? What kind of follow up did they recommend - you said two neurologists - does that mean 2 different one practices? Reason I am asking is everyone saying there is no connection- ER & private, yet giving you any info as to a cause? Curious as to what the Dr office who did the shot had to say too.

 

Hope you get more feedback.

post #3 of 37
Thread Starter 

a neurologist from the university hospital, where we stayed in the pediatric ER, monitored the EEG test and reported no abnormalities. for a follow up, we were referred to a pediatric neurologist in our area, who took a history, gave our child a basic physical exam and looked at previous EEG results and also said no abnormalities. she could find no neurological reason for our child to have a seizure. fever was also ruled out as a cause.

i reported the vaccination to the ER doctors, ER neurologist and follow up neurologist. they all shrugged it off as probably a coincidence. one person in the ER, i believe a nurse or pediatrician, said it was a 1 in 10,000 chance the vax was related to the seizure. our regular doctor's office was notified by the ER, and gave a referral to follow up neurology, but we have not spoken to them directly regarding the incident.

 

everyone has told us a similar story: seizures are unpredictable and not much is known about them, or why and when they occur.

in our case everyone has basically said, there is no abnormality and hence no explanation, we don't know why this happened to your child.

 

i have since revisited the 'pentacel' literature, and indeed they do refer to seizures occurring within 3 days of the vax as a side effect. i find it disconcerting that no one seems interested in this explanation.

 

we are going to the doctor in may for my older child's kindergarten physical, so a discussion will happen.

but, as i said, i am absolutely terrified to allow any more vaccinations.
 

post #4 of 37
Quote:
Originally Posted by summersmama View Post

a neurologist from the university hospital, where we stayed in the pediatric ER, monitored the EEG test and reported no abnormalities. for a follow up, we were referred to a pediatric neurologist in our area, who took a history, gave our child a basic physical exam and looked at previous EEG results and also said no abnormalities. she could find no neurological reason for our child to have a seizure. fever was also ruled out as a cause.

i reported the vaccination to the ER doctors, ER neurologist and follow up neurologist. they all shrugged it off as probably a coincidence. one person in the ER, i believe a nurse or pediatrician, said it was a 1 in 10,000 chance the vax was related to the seizure. our regular doctor's office was notified by the ER, and gave a referral to follow up neurology, but we have not spoken to them directly regarding the incident.

 

everyone has told us a similar story: seizures are unpredictable and not much is known about them, or why and when they occur.

in our case everyone has basically said, there is no abnormality and hence no explanation, we don't know why this happened to your child.

 

i have since revisited the 'pentacel' literature, and indeed they do refer to seizures occurring within 3 days of the vax as a side effect. i find it disconcerting that no one seems interested in this explanation.

 

we are going to the doctor in may for my older child's kindergarten physical, so a discussion will happen.

but, as i said, i am absolutely terrified to allow any more vaccinations.
 

Pretty much par for the course however. We are having a discussion about the true rates of adverse events following vaccination in the debate thread. This is exactly the point I was trying to make there. If no doctor acknowledges a reaction as a reaction how can a true number ever be found? I'm so sorry this happened to your poor baby. I can't imagine how scary this must have been for you. Trust your intuition on this. 

post #5 of 37

That makes me angry that many of the doctors dismissed the vaccine connection, although that's very typical of them.

 

Seizures within 3 days of the vaccine are listed in Pentacel package insert (and every package insert for pertussis containing vaccines).

 

"WARNINGS AND PRECAUTIONS 

Carefully consider benefits and risks before administering Pentacel to

persons with a history of:

  • -  fever ≥40.5°C (≥105°F), hypotonic-hyporesponsive episode (HHE) or

    persistent, inconsolable crying lasting ≥3 hours within 48 hours after a

    previous pertussis-containing vaccine. (5.2)

  • -  seizures within 3 days after a previous pertussis-containing vaccine"

http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM109810.pdf

 

Please file a report with VAERS

http://vaers.hhs.gov/index

 

If this results in any disability lasting more than 6 months, you can file a claim with the National Vaccine Injury Compensation Program. The claim must be filed within 3 years.

http://www.hrsa.gov/vaccinecompensation/fileclaim.html

post #6 of 37
Quote:

we are going to the doctor in may for my older child's kindergarten physical, so a discussion will happen.

but, as i said, i am absolutely terrified to allow any more vaccinations.

I take it this is the Dr who has been seeing your DD, where the vac was done? Does this Dr know it happened? Did anyone look at her records from this Dr since she was just there and you have a history I presume?

 

I am wondering if you can at least get this Dr to acknowledge that it maybe related - and in enough if you can have it in her chart if you need (if ever) an exemption? 

 

So basically all is ruled OK unless it happens again- no follow up in 6 months or a year with any others?

 

I think too you should look at the current debate section about this - 

 

Quote:
Trust your intuition on this. 

I always feel this way! yeahthat.gif

post #7 of 37
Thread Starter 

yes, our regular dr. gave her the pentacel and has her medical records since birth. he knows what happened as he gave the referral for follow up (insurance required he do it) but we have not yet spoken to him directly. we will talk at our next appt., however i am not holding my breath that he will acknowledge any connection between the vax and the seizure. he does know that i am wary of vax in general, and he agreed to our delayed vax preference for both kids. for now we will not be doing any more vax though, no matter what he says.

 

i did report the reaction to VAERS and named our doctor and his clinic in the report.

 

so yes, until or unless another seizure happens, there is not much to do. she will have a follow up EEG in 6 months for comparison.

 

thanks, everyone, for your responses. i appreciate it.

still curious if anyone else has had problems with this vax...
 

post #8 of 37

I don't know if you read this thread or not (not exactly the same as in your case) - here's to hoping that the next EEG is clear!

 

http://www.mothering.com/community/t/1372623/partial-seizure  (her first thread)

 

http://www.mothering.com/community/t/1373472/dont-know-where-how-to-start  (second thread)

post #9 of 37
Quote:
Originally Posted by summersmama View Post

still curious if anyone else has had problems with this vax...

 

You can search the VAERS database at http://medalerts.org

 

I did a search for DTAPIPVHIB, vaccine count 1, so there was no question of any other vaccines causing the reaction. "Found 617 events where Number of Vaccines Administered is '1' and Vaccine is DTAPIPVHIB"

 

Then I did a search without specifying the number of vaccines given, which would include cases in which other vaccines were given at the same time (a more typical situation). "Found 4650 events where Vaccine is DTAPIPVHIB"

 

We all know that reactions reported to VAERS represent a tiny percentage of actual reactions, but 617 is more than enough to get an idea of what others have experienced.

post #10 of 37

YES.  Pentacel was what gave my DD the majority of her reactions.  She had it at 2 and 5mos (almost 6mos) and we stopped vaxing completely after that. 

 

  • Was super lethargic immediately after both times - napped for almost 3 hours which was NOT her norm at the time.
  • Super fussy upon waking and began high pitch painful sounding screams nearly 24/7 with no outward "reason" or cause that lasted several days.
  • Never had a high fever but a continuous on/off low grade (never higher than 99) for about 2wks after.
  • Was inconsolable when upset. Normally being held or nursing was a the cure-all for her, but during those times, the best I could do was get to down to a mild wimper with lots of rocking and nursing, but she never stopped completely - even in her sleep she moaned.
  • The lump on her leg was enormous and very sensitive to even loose clothing.
  • A week or so after the 2nd dose I tried her on some oatmeal - major rash on her face immediately and following a 2nd feeding broke out in full body hives.

 

I took her to a ND around 9mos bc our pedi denied any connection between the vaxxes and her food issues and I wanted  second opinion.  What the ND explained to me was that the crying (more like high pitch blood curddling screams) that occur are most like a result of some minor swelling around the brain and THAT in itself can cause some of the secondary reactions.  I was heartbroken when she told me that, but so incredibly thankful that I took her there and that I made the choice to stop vaxxing.  And based on her past history, she is more likely to have worsening/more severe results if we were to continue to vax, a potential result being seizures.  So I totally feel for you and it's horrible that they can stand there and deny the relation.  Oh and the reason we know the ingredients of the pentacel to be the cause was that the ND tested specifically for vaxes and she was positive for DTaP/Hib - both of which are in the pentacel.

post #11 of 37
Thread Starter 

thanks, ma2two, i didn't realize i could search the database like that. very interesting to look at!

 

sassyfirechick, i am sorry to hear about your dd's reaction. i thank you for your sharing, though. did you quit going to that pediatrician entirely?

it will be interesting to hear what our family doctor has to say regarding our incident...if he gives me any problems regarding not vaccinating, i will have to look for a new dr. in our small town/rural area that will not be easy. :(
 

post #12 of 37

I did not stop going to that pedi but it is a possibility in the future.  She hasn't pushed vaxing directly and last visit she had the waiver right on top of the chart ready for me to sign.  BUT, it's not a happy feeling going in there, I feel very judged.  I'm pretty sure I can use the ND for all regular visits I may want/need.  I just have to figure out the insurance.  She doesn't go through any insurance so I have to pay up front and then I can submit it to my insurance which in theory should reimburse me everything except our $20 co-pay since we do have naturopath coverage on our plan...I didn't do it the first visit but I need to.  Just have to double check if we have limits.  Luckily the ND I found is in a different town but the same distance (30mins) as the pedi.  She came recommended by my chiropractor who takes her twins there so I pick her brain (chiro) alot for recommendations of who she uses since I know she doesn't vax.

post #13 of 37
Tell your Dr that someone has to be the "1 in 10,000". I'm just so sorry it had to be you...
post #14 of 37
Thread Starter 

just an update:

my child had another seizure 6 weeks later, lasting 60 minutes. it took 3 med interventions in the ER before the seizure was over. we spent 4 days in the hospital. tons of testing, eeg's, mri, ct scan, and there is nothing wrong with her neurologically. she has been given the diagnosis of epilepsy.

post #15 of 37

summersmama, I am so sorry.  

 

Normally, I hate this website, but this particular article does have some good information on vaccine-induced epilepsy: http://vactruth.com/2010/05/09/vaccines-cause-epilepsy/

 

So does this one: http://drlwilson.com/Articles/epilepsy.htm

 

Just as there is in autism, there may be a connection between vaccines AND gluten with seizures:

gluten:

http://celiacdisease.about.com/od/CeliacNeuroSymptoms/a/Gluten-And-Epilepsy.htm

http://www.ncbi.nlm.nih.gov/pubmed/17122729

http://www.ncbi.nlm.nih.gov/pubmed/19244266

http://www.ncbi.nlm.nih.gov/pubmed/16194732

 

Casein may be implicated as well, but I could not find nearly as much information on it:

http://voices.yahoo.com/how-gluten-casein-free-diet-reduces-epileptic-siezures-8295367.html

 

Your doctor will probably tell you that a gluten-free diet is ridiculous, but then again, (s)he probably never researched the literature for a connection.

 

If it were my child, I'd be doing a gluten-free diet, possibly casein-free as well, just in case.  You can always go back on gluten later if you decide that the diet is not helpful.

post #16 of 37

Sorry to hear :-( My father is epileptic, has been his whole life, was on dilatin and phenobarb for almost 40 yrs before going to a naturopath who weaned him off both.  Now I know epilepsy can wane with age esp after being on meds, so he may have "outgrown" it, but he was still having little ticks now and again - until he got off dairy.  He carries Rescue Remedy with him just in case, but he's been much better without dairy.  I hope you find some answers.  Any chance of finding a ND nearby to help detox her from the vaxes she's had and try to rebalance her system? 

post #17 of 37
Thread Starter 

a bit of an update on our roller coaster ride...

 

http://www.mothering.com/community/t/1381686/epilepsy
 

post #18 of 37

hug2.gif   Oh, dear ... 

 

Lots of hugs your way ....


Edited by MamaMunchkin - 4/22/13 at 3:46am
post #19 of 37

Wow, read through the other thread.  Well first off big hug to you.  Second, it really sucks when they refuse to answer a question like that - doesn't make you feel comfortable at all!  I hope you can get the metal test done and go from there.  As a side note, it comes to mind (bc I'm a dog trainer so my brain always defaults to dogs!), there are dogs that naturally alert to seizures and by telling the person in advance one is coming, they are able to get somewhere safe, sometimes the dog might lay on them to prevent injury or just next to them.  Really hope you can get some answers and help your LO!

post #20 of 37
summersmama, how awful and scary. I just read through your other thread and I'm really sorry for what you and your DD are going through.

Like you, I've delayed vax so far for my DS, who will be two in June. I've been thinking of starting the DTaP series, or seeing if our dr will order just the DT, because I am concerned about tetanus, but it is scenarios like yours that make me hesitant. The fact that you can't even get a doctor to discuss the possible role the vaccine played in your DDs subsequent condition, even though seizures are a known and listed possibility following the vax- I'm aghast and disgusted by this. I'm so angry for you. If a possible cause is not considered, how can these "experts" hope to find an appropriate treatment? I'm so sorry. (((Big hugs))). Best of luck to you, and I look forward to any updates.
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