Re: Felipe from Colombia

[Guest guest]

I am so sorry to hear of your problems. It is a very hard decision to vaccinate your child or not, regarding mito. I went through the same issues with my daughter Grace. With her we were very worried about the impact they could potentially make on her liver. Ultimately, after discussing with her doctors, we decided to go through with them. Basically, if she were to catch any of the diseases they vaccinate her for she would mostly likely die, or end up critically ill from them. It was kinda like playing the lottery but the chances are better that the disease would be worse than the reaction to the vaccine. With her we have to pre-medicate her with motrin before, and after the vaccination. The motrin reduces inflammation from the vaccine, protecting her liver. It also helps reduce the risk of fever from the vaccination. This method has worked well, but is tiring. She starts the motrin 1 hour before the shot, and then continues every 6-8 hours for the next 48 hours. I really can't help you on doses, because I am not a doctor. I do know, however, that she does take more than what would be a normal dose when she is ill. She also takes a very large dose the first time. I hope this helps you at least a little. I am sure this is very hard for you. The best advise is to use your gut instinct. God Bless.

[Guest guest]

I am so sorry to hear of your problems. It is a very hard decision to vaccinate your child or not, regarding mito. I went through the same issues with my daughter Grace. With her we were very worried about the impact they could potentially make on her liver. Ultimately, after discussing with her doctors, we decided to go through with them. Basically, if she were to catch any of the diseases they vaccinate her for she would mostly likely die, or end up critically ill from them. It was kinda like playing the lottery but the chances are better that the disease would be worse than the reaction to the vaccine. With her we have to pre-medicate her with motrin before, and after the vaccination. The motrin reduces inflammation from the vaccine, protecting her liver. It also helps reduce the risk of fever from the vaccination. This method has worked well, but is tiring. She starts the motrin 1 hour before the shot, and then continues every 6-8 hours for the next 48 hours. I really can't help you on doses, because I am not a doctor. I do know, however, that she does take more than what would be a normal dose when she is ill. She also takes a very large dose the first time. I hope this helps you at least a little. I am sure this is very hard for you. The best advise is to use your gut instinct. God Bless.

[Guest guest]

I am so sorry to hear of your problems. It is a very hard decision to vaccinate your child or not, regarding mito. I went through the same issues with my daughter Grace. With her we were very worried about the impact they could potentially make on her liver. Ultimately, after discussing with her doctors, we decided to go through with them. Basically, if she were to catch any of the diseases they vaccinate her for she would mostly likely die, or end up critically ill from them. It was kinda like playing the lottery but the chances are better that the disease would be worse than the reaction to the vaccine. With her we have to pre-medicate her with motrin before, and after the vaccination. The motrin reduces inflammation from the vaccine, protecting her liver. It also helps reduce the risk of fever from the vaccination. This method has worked well, but is tiring. She starts the motrin 1 hour before the shot, and then continues every 6-8 hours for the next 48 hours. I really can't help you on doses, because I am not a doctor. I do know, however, that she does take more than what would be a normal dose when she is ill. She also takes a very large dose the first time. I hope this helps you at least a little. I am sure this is very hard for you. The best advise is to use your gut instinct. God Bless.

[Guest guest]

Hello,

I asked my doctors what to do also and they told me it was better for my daughter to have the vacines it would be rougher on her to get the diease than to get the vacines. However I picked and choosed the ones I thought were more important. Then I gave her tylenol before and after the injections.

Valina, Maggies mom 29mos Leigh's syndromevickycas wrote:

Hello.I am the mother of a five months old baby with mithocondrial desease.We live in Colombia South America so we do not have much access to physicians that know this kind of desease so currently he is not getting any treatment, diet o cofactors. Since I do not have anyone to ask I am resting on the kindness of you mothers to help me solve some urgent questions. This week he has his second round of vactination buy I am so afraid of applying it to him because during his first round two monts ago he became very ill.He presented a myoclonic crisis and became neurologicaly descompensated. I know I should not interrupt his inmunitation cycle but I am affraid of his reaction and deterioration. Please do not answer to me by saying "Ask your physician" because I have not physician to ask about myto desease

here in Colombia and I need some urgent advice to decide. Thanks a lotVicky CastroPs: My baby main symthoms are:1) Myochonic Jerks2) Myopathy (spasticity)3) Lactic Acidosis (under stress)Please contact mito-owner with any problems or questions.

[Guest guest]

It may be best NOT to give your child the next round of immunizations if the first ones have caused problems. My pediatrician has stopped giving one of my children due to a reaction. If he had a reaction with the first ones, the second ones may cause worst reactions. Do you have a Mito doctor? You should discuss it with him, but in the end it is your decision to do what you feel is best for you child. Hope this helps some. Feel free to keep asking questions and to join this group of friends. Darla: mommy to Asenath, Zipporrah, and 7 other kiddos Felipe from Colombia Hello.I am the mother of a five months old baby with mithocondrial desease.We live in Colombia South America so we do not have much access to physicians that know this kind of desease so currently he is not getting any treatment, diet o cofactors. Since I do not have anyone to ask I am resting on the kindness of you mothers to help me solve some urgent questions. This week he has his second round of vactination buy I am so afraid of applying it to him because during his first round two monts ago he became very ill.He presented a myoclonic crisis and became neurologicaly descompensated. I know I should not interrupt his inmunitation cycle but I am affraid of his reaction and deterioration. Please do not answer to me by saying "Ask your physician" because I have not physician to ask about myto desease here in Colombia and I need some urgent advice to decide. Thanks a lotVicky CastroPs: My baby main symthoms are:1) Myochonic Jerks2) Myopathy (spasticity)3) Lactic Acidosis (under stress)

[Guest guest]

It may be best NOT to give your child the next round of immunizations if the first ones have caused problems. My pediatrician has stopped giving one of my children due to a reaction. If he had a reaction with the first ones, the second ones may cause worst reactions. Do you have a Mito doctor? You should discuss it with him, but in the end it is your decision to do what you feel is best for you child. Hope this helps some. Feel free to keep asking questions and to join this group of friends. Darla: mommy to Asenath, Zipporrah, and 7 other kiddos Felipe from Colombia Hello.I am the mother of a five months old baby with mithocondrial desease.We live in Colombia South America so we do not have much access to physicians that know this kind of desease so currently he is not getting any treatment, diet o cofactors. Since I do not have anyone to ask I am resting on the kindness of you mothers to help me solve some urgent questions. This week he has his second round of vactination buy I am so afraid of applying it to him because during his first round two monts ago he became very ill.He presented a myoclonic crisis and became neurologicaly descompensated. I know I should not interrupt his inmunitation cycle but I am affraid of his reaction and deterioration. Please do not answer to me by saying "Ask your physician" because I have not physician to ask about myto desease here in Colombia and I need some urgent advice to decide. Thanks a lotVicky CastroPs: My baby main symthoms are:1) Myochonic Jerks2) Myopathy (spasticity)3) Lactic Acidosis (under stress)

[Guest guest]

It may be best NOT to give your child the next round of immunizations if the first ones have caused problems. My pediatrician has stopped giving one of my children due to a reaction. If he had a reaction with the first ones, the second ones may cause worst reactions. Do you have a Mito doctor? You should discuss it with him, but in the end it is your decision to do what you feel is best for you child. Hope this helps some. Feel free to keep asking questions and to join this group of friends. Darla: mommy to Asenath, Zipporrah, and 7 other kiddos Felipe from Colombia Hello.I am the mother of a five months old baby with mithocondrial desease.We live in Colombia South America so we do not have much access to physicians that know this kind of desease so currently he is not getting any treatment, diet o cofactors. Since I do not have anyone to ask I am resting on the kindness of you mothers to help me solve some urgent questions. This week he has his second round of vactination buy I am so afraid of applying it to him because during his first round two monts ago he became very ill.He presented a myoclonic crisis and became neurologicaly descompensated. I know I should not interrupt his inmunitation cycle but I am affraid of his reaction and deterioration. Please do not answer to me by saying "Ask your physician" because I have not physician to ask about myto desease here in Colombia and I need some urgent advice to decide. Thanks a lotVicky CastroPs: My baby main symthoms are:1) Myochonic Jerks2) Myopathy (spasticity)3) Lactic Acidosis (under stress)