Immunizations, Personal Experiences

The following are letters from families of children with Hydranencephaly in response to a request to share thoughts and experiences about immunizations for their children. Many of the families had been told not to immunize because a. the child wouldn’t live long enough to need the protection or b. the child was too fragile to withstand the immunizations. However, to the best of my knowledge very few of the children have had any problems with their immunizations.

Karen, mom to Heather, age 2: I’m pro-immunization, so maybe my vote won’t count. I feel that these guys are in the “germy” hospitals so much that they may be exposed to these germs at some point. All of the immunizations (with maybe the exception of Chicken Pox) are for potentially life-threatening diseases. In my opinion, the kids should be vaccinated. The only one that the doctors felt might be risky was the pertussis. I¹m pretty sure that most of the vaccines come from dead or partial viruses so that they shouldn¹t be risky. When my oldest ones were immunized, the Polio vaccine was a live vaccine, but we requested the dead because my Mother in Law had Chemo for breast cancer and so was immuno-compromised. It¹s always a personal decision and most of the people out there know it.

Diane, mom to Josh, age 5: Josh has all his shots, the only one he had a bad reaction to was the flu shot. So we haven't had that since, as for all the others he had no reaction at all.

Sandy, mom to Jonathan, age 15 months: We have been told because Jonathan's seizure disorder is so bad and complicated that he may suffer even more damage or death due to his shots. The aren't willing to put him at that risk or take the risk themselves. It seems they are in agreement if we could control the seizures* then it would be ok to go ahead with them. Here is how I see it. I want Jonathan's done because I not only want to protect him, I want to protect others from him. If he would get something that could have been prevented from getting his shots he then can infect all the other babies in my house and where ever he has been. Bottom line is: protect him, protect others. We did try the RSV shots because they said if he got RSV it could do him in quicker than anything. He had a terrible reaction to the first one and we couldn't do anymore after that. We have kept him very isolated during the RSV season.

* Only the Pertussis vaccination has been found to have a chance of increasing or causing seizures. The newer “dead” version of the vaccine appears to be safer in this regard. After hearing other families experiences with vaccinations Sandy has asked Jonathan’s drs to give them to him.

April, mom to Chris who died in 2003 at the age of 14: I am so amazed at the number of kids who don't have their regular immunizations. I had all of Chris' done. Except the pertussis. Chris only had the first two full DPT. He wasn't diagnosed until he was 4 months old and had already had it. But, they didn't give it to him after that. He even had the chicken pox and yearly flu shot. Hep B also. These kids don't need any more illnesses than they already have. They need them any way when they start school.

Danielle, mom to Paul, who died in 2003 at the age of 9: See, I was never told not to get ^Pauli^ immunized. I just did. No one ever warned me of the seizure side effects. But we also had a great ped. He never treated ^Pauli^ any differ than his non disabled kids. he listened to me and worked with me to keep him healthy and hospital free.

Lisa, mom to Noah age 2 ½ : Our ped just treated Noah as any other child and actually told me that Noah would need any immunization more than any other child as the risk of him getting ill with particular things could have worse side effects than with other children, so basically he encouraged us to have the immunizations even more than any other child.

I also know of the cons of immunizations - particularly as I have a cousin who has autism and his parents are convinced that it has to do with the immunizations he had as a baby and young child, but we have made the decision to have Noah fully immunized. I think it really is a personal decision - if you would have your other kids without disabilities immunized then I think that you should treat your child with hydran the same as long as you are aware of the side effects such as seizures with certain ones etc.

Not giving them because you don't think they will live long enough shouldn't be a reason, as we all know our kids can prove the Drs very wrong at times.

We were told by our Dr that if Noah got chicken pox it could be very dangerous for him - even resulting in pneumonia etc. so he also encouraged us to have the chicken pox immunization (even after he was already exposed to it as he thought it would still help).

Nancy, mom to Daniel, age 8: I am one of the anti immunization people. I think it comes from being a hippie in the 70s. Anyway Barb, there are some web sites that discuss the reason
for some not to give immunizations. There are some on autistic web sites When I meet a new doctor they always give me the evil eye when I tell them my decision not to immunize and one doctor told my son he might die if he didn’t get the flu shot this year! My son Michael had an MMR at 18 months and will suffer the rest of his life from an adverse reaction. There are more then
most people know. When I say I don’t want Daniel to have them the docs seem to have a different reaction. Like it’s OK or something. Kinda makes me mad I think its a double standard

I forgot to add that I do believe in selective immunizations. AND Jonah (20 months, Porencephaly) has had RSV 2 times and it almost killed him last time. The hospital told me about
this once a month shot also. I was thinking about reading more about it Another controversial subject is that newly immunized children are contagious for a certain amount of time to non immunized ones. The Jury is still out on this one too. The problem I see is that the government says its safe and then a few years later says oops . I just cant trust them on this subject they have lied before. I feel like they’re using our children as guinea pigs. . See I told you I was an old hippie.

Darcy, Grandmother to Emily, age 5: Emily has had all her shots - as a matter of fact had 2 boosters on Wednesday. Fortunately, she has never had a bad reaction. When she had the chicken pox vaccine, she did get a VERY MILD case around the injection site. She has never had a flu shot, but her Ped just said he will really push for it next year.

Ann, mom to Kristen who died in 2003, at the age of 21: I agree that there might be a double standard on the immunization topic. That makes me mad too. The decision to immunize, or not shouldn't be made on who is worthy, and who isn't. ^Kristen^ had all her shots, and had no problems, but it was a big decision for me.

Diana, Grandmother to Kirsten, age 18 months: We were told a mixture of your "questions" regarding Kirsten. It was recommended that she get as many of the "normal" childhood immunizations as possible, because we didn't know how long she would be with us and we didn't want her to need to deal with a disease unnecessarily. Additionally, she would eventually need them before she could go to school and the series' are easier as an infant. Certain immunizations were not recommended due to her medical fragility such as pertussin. The concept of flu shots, etc. was completely discretionary. We chose the route of Rick and I getting the flu shot to help prevent it from being brought into the house. We also started to limit Kirsten's travels outside the house to also decrease the chance of her being exposed. We also make sure that everyone washes their hands when they come into the house before handling her. So far it's been working. Knock on wood....

Kimbra, mom to Dillion, age 23 months: I hope that I am not chiming in too late, but here is
my 2 cents worth LOL!! Dillion has had all of his routine immunizations. The only thing was at his one year shots we put off giving him the DTaP shot for a month or so because he had just started having seizures and we were told that the pertussis part could cause him to have more. He did get the shot but just a little later. Dillion does not get the flu shot as he is allergic to eggs, and none of the rest of us get it for risk of carrying a live virus home to him.Dillion was offered the syniges/ RSV shot but Medicaid decided that after 1 dose they would not pay for it anymore. I think it had to do with the fact that each shot was somewhere around $2,000 Dillion has never
had a bad reaction to any of his shots. Other than the "normal" stuff tender around injection site, fussy, etc. I have also thought that he has enough to deal with without having to deal with something a shot could have prevented.

Dee Dee, mom to Elizabeth age 15: Elizabeth is up dated on all of her shots except for the Hep series. She was real sick after the first one and we said no more. The county agreed that she wouldn't need any as she is allergic to them. All other shots were fine. The flu shot she does real well with.

Angela, mom to Chrissy, age 3: Nancy I caught your post about the doctors saying Jonathan is too high risk for immunizations because of his seizures and just wanted to mention that Chrissy has had all of her immunizations since the beginning and she has probably the worst history of seizures of any child on the group right now. Her seizures are very hard to control and she has had them since the age of three months. But she still got her shots and none of them have made her seizures any worse or caused seizures to come on after getting the immunizations. She has gotten all the usual shots, plus a flu shot every year and has had the chicken pox immunization as well. I know some people are against the immunizations, but in my opinion they have done no harm to Chrissy and may have prevented her from some illnesses (especially the pneumonia and flu vaccines).

Barb, mom to Kayda who died in 2000 at the age of 11: Kayda had all her immunizations and except for a mild reaction to something after her pre Kindergarten shots she had no problems. Her pediatrician at the time felt that even the “dead” strain of Pertussis vaccination was too risky for her so she didn’t have that part of the vaccinations. I had to make sure the school secretary knew that if she ever got a call from a family saying their child had Pertussis she would have to let me know so I could keep Kayda home. Except for her first year with me when she was ill constantly she had her flu shot every year. I always got mine as well as did anyone caring for her both at home and at school. She also got the Pneumovax when she was about 8 years old-I hadn’t heard about it before then.

Other pages in this section:
Illnesses
Antibiotic Use Information
Care of Ill Child
Illnesses Experiences
Illnesses Glossary

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August 16, 2001- January 12, 2005

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