Viewing 12 posts - 1 through 12 (of 12 total)
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  • #8468
    Avatar of Chad
    slmdcivic02
    Member

    Well my daughter is now going in for her 2 months vaccinations tomarrow. Does this interfere with her pku in any way? I searched but didn't come up with anything.

    #8470
    Avatar of Breanna
    BreaMarie91
    Member

    Getting vaccinations should not cause any issues. Growing up I always received any immunizations that I needed. You should be perfectly fine.

    #8765
    Avatar of carrie
    clenk
    Member

     how did it go? i'm supposed to schedule my daughters 2 month right away too

    #8767
    Avatar of Breanna
    BreaMarie91
    Member

    Clenk,

    Your daughters immunizations shouldn't interfere with her PKU. My two younger sisters that have PKU and I have all gotten our necessary shots, and it has not caused any issues.

    #8773
    Avatar of Cook4Love
    Cook4Love
    Member

    Sometimes the immunization causes a brief spike in levels (if you look at the side effects of some immunizations you can get a mild fever which will cause levels to rise).  Talk to your clinic and see if they recommend any adjustments to phe intake or if they want levels done. 
    Brenda

    #8777
    Avatar of carrie
    clenk
    Member

     I thought some vaccines were egg /protein based? 

    #8783
    Avatar of Cook4Love
    Cook4Love
    Member

    Many are egg based.  When Molly was a baby we tried to get exact phe information but never had any luck obtaining it.  We decided to space out vaccines a little more than recommended and never gave more than two at a time.  If it was an egg based one, we cut back her phe intake the day of the vaccinations by about 50 mg as well as the day after.  The spacing out of vaccines and limiting the number as well as decreasing phe were personal choices and everyone needs to do what sits well with them.  Talk to your clinic and your pediatrician.  
    Brenda

    #9767

    Ok. This has NOT been our experience nad the last 8 weeks have been a nightmare as my daughter's phe levels spiked 8 times higher than normal and it took 8 weeks to get them back down to some semblance of normal. She has hyper-phe and is on Kuvan. Her reaction really shocked me because I was not prepared for that-I had no clue there was any danger there but as our pediatrician discovered, there is more in vaccinations than just egg. Some of them contain Aspartame and if they are live virus, then they contain an even more powerful pure protein that shoots phe levels up even higher. I am starting to question the wisdom of her having any more vaccinations. Because she is not Classic PKU there are a lot of resources that have not been made available to us and this site is my only connection to anyone else that might be in the same situation. Any recommendations?? Also can anyone recommend any good cookbooks?

    #9768
    Avatar of Apostolia
    foufouka
    Member

     Of course a virus contains proteins, as does any living microorganism, but in order to be coynt as phe in your childs levels it has to be catabolized, that is broken down. The reason there are peaks  in phe  after a vaccination I think is the immune reaction caused by the vaccine, as a stress, and not the virus itself. Imagine what would cause to our children the real infection. furthermore, some of these infections are live threatening, so for me there is no question about how necessary a vaccine is. We never had a great problem, I have always avoided to take blood levels too close to a vaccine, always let 3-4 days. owever , I had never noticed such an increase. 

    As for a cookbook, I use Virginia Schouette's Low protein cookeery for PKU, http://www.cookforlove.prg (thanks Brenda! ) and traditional greek cousine, as we have many great vegan recipes. Hope this helps.

    #9774

    Her specialist will not let us put off blood work at all, especially after her one year vaccinations and the 9 week phe level issues we have experienced. Her levels are still not down to their usual range and we have had to start removing things from her diet to get them back down, but so far, to no avail. This week, we are removing milk and praying for lower levels. As a parent, how does one deal with the stress of all of this? Is it always going to be this way every time we go for her vaccinations? I guess the reason I am on here is to try to connect with other people that have been where we are right now and are willing to share their experiences. I appreciate you sharing..I have got to learn how to cook so that she can have the foods she needs. Thank you for the cooking ideas!

    #9776
    Avatar of carrie
    clenk
    Member

     Personally we had to stop the vaccinations for our daughter (she will be 3 this month) becasue it threw her into a tailspin- too high- then too low then too high- it would take weeks to get her back on track and even though they assured us it wasn't normal we saw when she was older she would regress with development (even if she was really sick and her numbers would be out) so the vaccinations just were not worth it for us. 

    Interestingly she did get chicken pox as she had not been vaccinated for it and she was very very sick for days and her phe levels did not fluctuate at ALL! So i was glad we opted out of that vaccine! 

    Apparently if you separate them and delay them it helps- we tried that first but didn't work for our family. 

    And stress- oh mamma there is stress- the first year is horrible – but the second year is better and now our daughter is stabilizing and we'll go months with no fluctuation in numbers and she is an amazing little girl and everything is great and i wonder why did we ever worry- then she'll get sick and i'll go crazy again. The joys!  

    #9777
    Avatar of victoria
    addamd
    Participant

    My son had the vaccinations on regular schedule and everything went perfect. Phe level under normal range, no fever, no change in his normal daily phe intake. Dr recommend us normal vaccines schedule and we were glad that we did follow their advise, only difference with my non-PKU guy was that we gave him Motrin insted Tylenol (tylenol syrup contain Phe, Motrin do not)

Viewing 12 posts - 1 through 12 (of 12 total)
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