Carter

[Anonymous]

Lori – like Ann Marie mentioned with the DT shot without the P and
future shots being single, not combo vaccines, the MMR shot IS
available as separate singles vaccines. Likely not covered by insurance
and quite expensive but is an option for those worried about the combo
shots overloading sensitive immune systems.

Thais – I’m so sorry you went through that – glad you are OK!

Ann Marie – big hugs again to you and Carter (and Dylan and your DH too). I’m so glad the ER team was so great and that he’s OK.

[Anonymous]

Thanks, Lori. I know, even when we first got there, they didn’t seem to think that the vaccinations were even part of the equation until other docs/departments were putting it out there.

Forgive me for not knowing all of Sarah’s history, but are her seizures secondary to the vaccinations? I guess I mean is it from the stress of the vaccination, or is it the ingredients in the vaccination itself? I ask because they did a cortizol (sp?) test on Carter to see if his body reacted appropriately to stress. I guess that the adrenal glands are supposed to kick in when the body goes through medical stress, and if they don’t the body can go into shock, etc…..

Hang in there about the shot. Can the MMR be split up? Just curious for our sake and yours…..

[Anonymous]

Thanks, Karen. I had this typed and didn’t post till after you so I didn’t see your reply. I would be willing to pay for the MMR split….

[Anonymous]

From what I’ve been told (I have a friend who has Asperger’s syndrome
in her family – she has been getting her daughter vaccinations but is
cautious and doing split doses when possible – not up to MMR yet) the
MMR CAN be given in split doses but it is hard to find a doctor willing
to do so. I’ll ask her more this evening – need to give her a call
anyway.

I’m scared of the MMR shot but plan to have it done at Marisa’s
one-year visit I guess. She had a nasty reaction to her 2 and 4 month
DTaP shots but nothing like you/Carter had (she had high fever, crying
in sleep, etc) and no reaction to her 6 month booster…

[Anonymous]

OMG Ann Marie–how scary all of this must be for you guys. I am so sorry to hear all Carter went through. I will be praying for him & your family, I really hope that he suffers no future ill effects from the shot(s). I hope you are able to find some guidance either via Yale or elsewhere regarding his shots. It is scary to hear of cases of severe allergic reactions, even death, encephalopathy, etc. WITH vaccines. I know a family whose son suffered severe encephalopathy & almost died following a round of vaccines. But, I agree with you,how important they are. I know you are really facing some tough decisions as far as what to do down the road.

I would possibly contact an immunologist in addition to the ID doc. I think they would also want to delay shots for Carter & defenitely split them. I also wonder if taking something like Bendadryl prior to the vaccine would help? I only say this because my mother is allergic to contrast & before she has a test w/ it, they give her benadryl. Another thing may be have him admitted for 24 hrs or so following the shot, so he can be on a heart & pulse ox monitor.

I hope you are able to get a plan in place soon & that those docs report it to the CDC. You will be in our thoughts & I do hope Carter’s recovery continues going so well.

[Anonymous]

Hi Lauren,

Thank you! And great idea with the immunologist. I will do some hunting today. Also the benadryl idea is great, too. I will probably do that going forward. Oh, and believe me, we will be making sure the docs report it to the CDC. I will not let that one go.

I have been on and off the site recently with all that has been going on. How is Emma doing? Hopefully you and the family are all doing well!!

[Anonymous]

Ann Marie,

Sarah’s seizures are febrile, they are not related to vaccinations, so she has seizures when she gets a fever. But they are large ones, which is why she seems to choke and turn blue- scary. Anyhow, the MMR has a fairly high risk of seizures associated with it compared to other vaccines, mostly due to the fact that there is often a fever associated with it. That’s why our doc has put it off. We’re going to get it done tonight though. Good luck with the immunologist. This petrifies me.

[Anonymous]

Hang in there, Lori! I will be thinking about you all day with this so please post when you get a chance and let us know how it is going. Forgive me for not being familiar with the seizures. This is something we have escaped, and I am sorry you have to deal with. Will they approve high doses of Tylenol for the shot? I think the normal dose is 15mgs/kilo but for Carter’s surgery for pain, they gave 40mgs/kilo. Almost three times the amount. I am not sure if predosing with high doses of Tylenol, or giving it every 4 hours thereafter would help with avoiding fever? Not sure if that is a stupid question, but I just thought I’d put it out there.

I’ll be thinking of you……….

[Anonymous]

Lori

will be thinking of you… please keep us posted. Hope all goes well. I agree with doing something pre-shot maybe?? WHat about a combo of tylenol and maybe ibuprofen (spelling?? god i have no idea how to write any more, must be i am exhausted!).

Thinking of you….

[Anonymous]

Good luck Lori – hope it goes well tonight and will be thinking of you
and Sarah (and Hailey too, of course). Thais has good idea – maybe
Tylenol before the shot and Motrin after?

Very interesting idea about the Benadryl. Lauren and others, do you
think that might be a good precaution in general before the MMR shot
when we go for it (sometime between 12-15 months)? I guess couldn’t
hurt, right?

[Anonymous]

That is so horrible and scary! I am glad he is ok!

[Anonymous]

Ann Marie,
Wow…it’s hard to have to say Congratulations and I am so sorry in the same breath. It was exciting to read the news about Carter and to see that he was doing so well after arriving so early. Then my stomach was churning as I read the rest of the story and your further posts. I’m so sorry that you’ve had to go through all of that. I’m also one who believes in vaccinations but is cautious at the same time. I think it’s wise to break them up, and even to delay them when necessary…especially in cases such as Carter’s!
On another note, I hope that all goes (went?) well today with Carter’s GI appointment. And so nice to read the update on Dylan…he sounds like such an understanding little boy!
HUGS!!!
Christine

[Anonymous]

Hey there, Christine!

If only there were more hours in a day I could get to my list of e-mails that I have been trying to catch up on.

Thanks for the well wishes. The GI appt went well. We are going to try two weeks of Prevacid and if that doesn’t do the trick, then Neocate, but she agrees, one change at a time. She also had heard about Carter (pretty much a topic of conversation with any doc affiliated with Yale at this point) and said she knew an immunologist and a cardiologist that she wanted him to see. Immunology for the approach for vaccinations, and also cardiology just because he presented with cardiac arrest when we first got to the ER, that she feels we need to rule it out. She is calling them both personally, and will have the appointments set up for us. Have I mentioned I LOVE my Gi doc?! Also, since our stupid insurance will not cover prevacid, and it had worked for Dylan, she is giving us enough samples so we do not have to fill or pay for any prescriptions.

Ugh! I just saw that Palmer is back on Prevacid! Is it the two year molars? Or just not ready? I am sorry you are still going through some of this.

Yes, Dylan is as understanding as any 3 year old could be. He is fabulous 98 percent of the time, but he can throw an “I need attention” tantrum better than any I had seen before. It is light out into the evening here now so the T-ball games with Dylan, Mommy and Daddy are lasting a little longer to make up for the other time. He has also been able to swim with just a bubble since last summer, so we go to my mom’s pool with him and Carter even if it is just one of us. As long as we are right there, I am comfortable with Dylan in the pool while sitting under the umbrella with Carter. If Carter is sleeping in the carrier, then we can get in with him. It works out pretty well.

OK, now I am rambling. Glad to see you are back and would love an update on Palmer when you get a chance.

Ann Marie

[Anonymous]

Thank you for your wishes, everyone. I just wanted to say again Ann Marie, how sorry I am for what you went through with Carter. I really wasn’t trying to compare Sarah’s situation, and in my rambling mental state, I didn’t mean to come off like I was. Sarah’s seizures don’t harm her, they are just scary, so it’s nearly the same situation. I hope that no one was offended by this.

As for her shots, we never had them done b/c the ped had to leave early. We’re rescheduled for tomorrow.

I’m so glad that your GI is so on the ball. What a big difference that makes. I hope that you get some good guidance and answers. Best wishes, and thinking of you guys.

[Anonymous]

Ann Marie~
I am going to email you off the forum (it is on my list of things to do) But for the meantime, I just wanted you to know that you guys stay in our prayers. I like Lauren’s idea of an over night hospital stay (if just for the first couple of doses) That way if something DID happen, you would be right where there was medical intervention. We do this for all of our patients who have ever had a severe reaction to a vaccine but were still immunocomprimised enough to need the vaccine. The other thing is, I would insist that if Carter was not in the hospital, the vaccines only be given in an Allergist/Immunoligist office that is closely connected to a hospital. That way they are equipped with what they need in case of a reaction. I agree that he needs the vaccines, but they should only be given in a facility where they are capable of handling a potentially severe reaction.

That being said, (((HUGS))) to you!!!

[Author]

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