New and really need advice

[Guest guest]

Hi all,

I'm new here and was wondering if I could get your advice on

something. I took 6-month-old DD to the pediatrician on 11/17 for

her well child and shots. She is on an alternative vaccination

schedule that I requested because I'm uncomfortable with giving her

so many shots at once at such a young age, and shots like the RotaTeq

and Hep B and flu she is not getting at all. So last time I went in

we got my favorite doc and it's his first time seeing DD, but he

knows me and my twin boys very well, one of whom has major medical

and developmental issues including Down syndrome, cleft lip/palate,

and autism. The doc had all the vaccinations ready (he was going to

give her the typical four separate shots containing 8 vaccinations;

Rotavirus, HIB, Prevnar, and Pedarix (conjugate of DTaP, Hep B, IPV

(IPV is really three separate, so really 10 in all)) and as soon as I

realized he was filling syringes I told him that no we were on an alt

vacc schedule and she was only supposed to get the one single DTaP

today. The schedule is scanned in their electronic records laptop,

but he didn't look or see it so I showed him the copy that I bring

with me every time. He looked it over (quite carefully as he

commented negatively on several items such as the declined

vaccinations and the titers prior to boosters) and gave her one

vaccination.

He then proceeded to get all ticked off and vented his general

frustrations of parents questioning vaccines to me for about 5-10

minutes straight. I was quite surprised because I had never seen him

like this, but it was almost to the point that I was about to ask my

typically-developing, all ears 8-year-old to go out in the waiting

room as I didn't want him hearing any more of his rant. I took it as

not toward me directly, but that he was not happy about this alt

vaccination schedule (it was approved at her first visit by one of

the other docs in the practice, not without lengthy discussion), but

was more frustrated at so many parents questioning the shots all the

time and the internet, and maybe he felt that since he knew me so

well that he could vent a little. It was a little upsetting and

annoying, but docs are people too so I let it roll and chalked it up

to him having a bad day or something. He's a great guy and we have

never had a problem in 9 years of serious health issues with DS, so I

didn't say much or make waves.

Well, I went to file the paperwork today and looked carefully at it

and it said she got the Pediarix shot that day, the one with five

different vaccinations in one shot...DTaP (3 vaccinations), Hep B,

and IPV (polio, but technically 3 vaccinations also, so really 7

total). We had not wanted the Hep B (declined from birth and it

stated on my paper that we were declining that one) and she had just

gotten the IPV and Prevnar at the previous visit 20 days prior (less

than a month because we had to reschedule the appointment). Now that

throws the IPV all off schedule (and the minimum wait time between

IPV shots is supposed to be 4 weeks!) and she has the extra Hep B

that I was avoiding. What the h***?!?

I sort of can't believe it really. I called the office and the

secretary was totally confused, so she was having the nurse

practitioner call me back with more info. She never called, so I

called them back and the secretary told me that the NP is giving a

note to the original doc, who will call back next week on Wednesday.

Hello, was anyone going to tell me this? Do I not deserve to be

called back promptly about this? I told her that I wanted a doc to

call me back today. One did finally after 6 pm and he did verify

that it stated that she got the Pediarix, verified that it does

contain all the extra shots and that the IPV was given too early, and

that the original doc will call me on Monday.

I am upset. I am going to call the office tomorrow to schedule an in-

person appointment with the doc on Monday to discuss this face to

face. I am going to report it to the FDA and another agency as a

medication error so that I have some " official " record of it, and I

will tell him I am doing this and attempt to get him to sign it as

well. I will write a letter to him and/or the office to be put into

her medical records, for documentation purposes. I will try not to

get mad and see what his explanation is. I will go in prepared with

information on vaccinations and either with my DH to help with the

kids or alone without my children so I can concentrate and advocate

and perhaps educate him a little or open his mind about

vaccinations. Heck, they may kick me out of the practice after

Monday so I won't have to make a decision about leaving, I don't

know. But I am going to try to do it in a professional and calm

manner.

Should I do anything more about it? I guess options could include

anything from ignoring it (but it is important to us and I went to

great lengths and did a lot of reading to come up with this and it

was approved by the other physician as covering her immunizations),

writing a letter to the office (pretty sure I'm going to do this),

reporting it as a medication error (definitely going to do this),

switching offices (not sure if I want to do this because of the long

and good history we have with the office with my other son), or even

hiring a lawyer or something (yikes, wouldn't really want to do).

What do you think I should do?

I mean, I sit here with a kid who has autism, which he and we

certainly do not need along with two other major medical issues of

Down syndrome and cleft lip/palate (neither of which OB/GYNs did not

detect in pregnancy (not that we would have done anything and we

wouldn't trade him for the world, but would have liked to have known

especially since it was a twin birth), but that is another story, but

one which began making me question docs and become a very strong

advocate). I certainly want to do all I can to protect another one

of my children from getting autism or anything else that might result

from the administration of vaccinations (I had a friend who receives

compensation for vaccine injury of her son who had a devastating

reaction) if that is possible, while at the same time vaccinating on

a one-or-two-at-a-time delayed alternate schedule and declining some

vaccinations. We homeschool, so I could have just said to hell with

all the vaccinations, but it is our philosophy that we do want some

vaccinations, but separated and when she is not as young. We thought

this would be a happy medium and it gave us some level of comfort.

So this vaccination throws the whole thing off and it really pisses

me off now that I sat there listening to him vent while he did this

to my precious infant daughter. I will now check the vaccination

containers they draw from prior to the administration of the vaccine.

It makes me mad that I have to handhold doctors so much and so often,

but apparently I have no choice and must get extremely anally

explicit in my instructions and oversight.

I am pretty upset over this and am not sure what else to do. I was

wondering what you thought and if you had any additional advice.

Also, I was thinking maybe my story might be of some help to anyone

here who may be choosing an alternative vaccination schedule...check

the containers closely to make sure they are following your

directions!!

Also, with the new information about the mitochondrial issues

potentially being a problem, how can you test for mitochondrial

disorders? What is a mitochondrial disorder and is it symptomatic?

What tests would be necessary? Is it possible to retroactively test

children with autism for mitochondrial disorder to see if the

vaccination may have combined with that to cause the autism? Is any

of this type of retroactive research being done? Sorry, these may be

dumb or out of date questions, but I have lots of medical diagnoses

to deal with here as well as an upcoming deep sedation CAT scan and

three upcoming surgeries for DS, and it's hard to keep totally up to

date on all the current info and research on all of them. Thanks so

much in advance.