30 min seizure after pentacel vax - Mothering Forums
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#1 of 37 Old 03-07-2013, 11:49 AM - Thread Starter
 
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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.


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#2 of 37 Old 03-07-2013, 11:59 AM
 
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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.

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#3 of 37 Old 03-07-2013, 12:36 PM - Thread Starter
 
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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.
 


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#4 of 37 Old 03-07-2013, 12:43 PM
 
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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. 

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#5 of 37 Old 03-07-2013, 01:28 PM
 
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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

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#6 of 37 Old 03-07-2013, 01:30 PM
 
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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 - 

 

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#7 of 37 Old 03-08-2013, 07:30 AM - Thread Starter
 
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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...
 


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#8 of 37 Old 03-08-2013, 07:41 AM
 
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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)


 

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#9 of 37 Old 03-08-2013, 09:27 AM
 
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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.

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#10 of 37 Old 03-08-2013, 12:07 PM
 
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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.

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#11 of 37 Old 03-14-2013, 11:56 AM - Thread Starter
 
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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. :(
 


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#12 of 37 Old 03-15-2013, 04:04 PM
 
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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.

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Tell your Dr that someone has to be the "1 in 10,000". I'm just so sorry it had to be you...
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#14 of 37 Old 04-08-2013, 06:08 AM - Thread Starter
 
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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.


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#15 of 37 Old 04-08-2013, 10:38 AM
 
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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.

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#16 of 37 Old 04-08-2013, 06:36 PM
 
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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? 

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#17 of 37 Old 04-21-2013, 09:24 PM - Thread Starter
 
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a bit of an update on our roller coaster ride...

 

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


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#18 of 37 Old 04-22-2013, 03:24 AM
 
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hug2.gif   Oh, dear ... 

 

Lots of hugs your way ....


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#19 of 37 Old 04-22-2013, 05:47 PM
 
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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!

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#20 of 37 Old 04-22-2013, 11:24 PM
 
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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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#21 of 37 Old 04-23-2013, 01:13 PM - Thread Starter
 
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Jennyanydots, thanks for your kind words and sentiment.

 

i wish i could go back in time and not allow my daughter get that damn shot. i do think i saved her from more damage by not allowing it when she was just 2 months, 4 months, etc. my older dd got the same shots after she turned 2 and was ok. but not every little body and immune system can handle it. i respect every parent's right to decide what is best for their family, kids. however, my advice, if anyone cares, from here on out is: don't do it.

 

i may reconsider when vaccinations are made 'green'.
 


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#22 of 37 Old 05-09-2013, 08:01 PM - Thread Starter
 
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the mayo clinic will not discuss the vaccination as related to DD's epilepsy. i was scolded on the suffering of little ones who get diseases that could have been prevented through vaccination.

 

my husband and i bought a new video monitor so that we can be sure our 2 year old is safe at night. and maybe that will help us get some sleep, too (maybe, but not likely for this worry wart). our local peds neurologist refuses to give us documentation that the video monitor is a medical expense. (google: SUDEP)

 

F*#$ all this. i hate all these doctors so much right now. no compassion, no understanding. we are almost $20,000 into this since february. (medical expenses)

 

going to an integrative DAN doctor next week. we are paying full cost out of pocket as insurance covers nothing. maybe that means he is not a whore for big pharma.

 

please excuse my language. angry. banghead.gif


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#23 of 37 Old 05-10-2013, 06:13 AM
 
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summersmama, I am so sorry you are dealing with this. Healing vibes to you LO.


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#24 of 37 Old 05-10-2013, 06:39 AM
 
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I am not surprised the Mayo Clinic has given you this kind of treatment. I've had different family members who were wrongly treated at  both Duke and Johns Hopkins, and I am still having a hard time getting past the anger. Just because an institution is considered to be one of the "best" does not mean it actually is.

Wow, vaccines are only capable of good in this world. They are completely free of blame when it comes to reactions, especially since doctors are so reluctant to hold them responsible for anything except disease eradication. I hate this system so much, and I am so angry for you!

Sorry you are going through this, but hopefully you will find help with a good integrative doctor.

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#25 of 37 Old 05-10-2013, 06:40 AM
 
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the mayo clinic will not discuss the vaccination as related to DD's epilepsy. i was scolded on the suffering of little ones who get diseases that could have been prevented through vaccination.

 

my husband and i bought a new video monitor so that we can be sure our 2 year old is safe at night. and maybe that will help us get some sleep, too (maybe, but not likely for this worry wart). our local peds neurologist refuses to give us documentation that the video monitor is a medical expense. (google: SUDEP)

 

F*#$ all this. i hate all these doctors so much right now. no compassion, no understanding. we are almost $20,000 into this since february. (medical expenses)

 

going to an integrative DAN doctor next week. we are paying full cost out of pocket as insurance covers nothing. maybe that means he is not a whore for big pharma.

 

please excuse my language. angry. banghead.gif

Sadly your story is fairly typical when it comes to vaccine injury. You are on your own. I am so sorry you have to deal with this with no support from the medical community - and to have a doctor lecture you about diseases? shameful. I hope the DAN doctor will be able to help your LO. and you have every right to be angry!!!!

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#26 of 37 Old 05-10-2013, 11:16 AM
 
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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.
 

Just because it's rare doesn't mean it's not happening to your child. Trust your instinct, and keep looking for doctors who will listen to you. We 'fired' our pediatrician for always badgering us about vaccinating our daughter; our current family physician doesn't condescend to us when we say we're skipping a vaccine here or there. Of course, she has three kids, and our pediatrician was childless... 

 

Somewhat tangential, but a med school friend of mine informed me that med school students consider pediatrics the 'easiest' route to take for a career in medicine. Think about that the next time some pediatrician brushes you off. This was the student at the low end of the curve.

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#27 of 37 Old 05-10-2013, 12:09 PM
 
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Thinking of you……healing vibes, and a money fairy  goodvibes.gif


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

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#28 of 37 Old 05-11-2013, 07:51 PM - Thread Starter
 
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thank you, everyone. i rant and vent, and thank the universe that there are understanding, empathetic folks.

feeling better, calmer. looking forward to integrative m.d. appointment.

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Mama to two girls, born 5/08 and 11/10.

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#29 of 37 Old 05-19-2013, 08:23 PM - Thread Starter
 
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so happy we went to see the integrative m.d., also a DAN doctor. we had a 2 hour consult with him, where we discussed bacteria, virus, disease, the immune system and vaccines. he shared a lot of research and most important, he LISTENED to our story. he validated our experience. he talked of the many mothers and fathers who walk through his doors with similar stories, about how their children were just fine, and then a vaccination...

he told us we were in all likelihood lucky that we had not allowed more shots at a younger age for our DD.

so now we are doing a battery of lab tests, urine and blood, checking for everything that might be useful or problematic, depending upon your perspective. we will have to wait a few weeks for all the results to come in, at which time we will have another consult and a treatment plan will be outlined.

 

overall i was very impressed with his knowledge, and also his humility. he knew his stuff, but was quick to point out that no doctor is god, no doctor can guarantee that a vaccination or medication or treatment is safe for everyone. he encouraged me to read and research, advocate for my child and follow my instincts.


Mama to two girls, born 5/08 and 11/10.

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#30 of 37 Old 05-19-2013, 10:50 PM
 
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That's awesome, summersmama! I'm so glad you found a good dr you can talk to who will actually hear what you're saying without dismissing you. I hope he's able to provide some help and offer some good healing therapy.

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