Glutaric acidemia type 1

Gandalf said:
Adaryn said:
Laura said:
Gandalf said:
It is not only horrifying but demoralizing, disheartening and depressing.

Although his mother was against vaccine, drug, bad nutrition, now she does not have the choice to accept that Liam takes some drugs every day, will receive vaccines as soon as it is possible, will heat a diet high in carbs...

It goes against all that she wanted to give and teach to her son and as far as I understand it, she does not have the choice than to accept that.
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What's even scarier is: 'what if the vaccines make him sick...?' There are SO many reports of children getting seriously ill from vaccines.
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What kind of vaccines is he going to receive? Are they supposed to prevent fever crises?
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I don't know exactly the names but those are the standard vaccines that all children receive in our country.
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Of what I know immunization is not mandatory in Canada, so if Liam's mother does not want to go with it, and the doctor's don't have a specific reason relating to his condition that they want to do it for, then she can refuse.

In any event, this is the infant vaccine schedule of Canada:

http://www.phac-aspc.gc.ca/im/is-cv/index-eng.php#a
 
My heart is so sad to hear of your grandson's illness--I so wish I had more to offer than
my thoughts and sympathy to everyone in your family.

I agree with Stellar:
My heart pains for this sad news, Gandalf. To me there is nothing worse than not being able to help our children/grandchildren in an illness situation. :hug2:

I would hope that this situation will be considered to ask the C's for some advice assistance.
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:hug2:
shellycheval
 
Thanks again to all of you.

Liam is back at the hospital. His parents brought him back there yesterday when he started to vomit all his food.

The doctors don't know if he is doing a gastroenteritis or if he can not tolerate the new milk. They will have to do some tests to determine what is the real reason.

However in the meantime, since he can not stay without eating because of his disease, they are tube-feeding him and by doing that, they will see how his body is going to react.

What a nightmare !
 
I'm so sorry to hear of this Gandalf. My thoughts are with you and your family and especially little Liam. Take care.
 
Gandalf said:
Thanks again to all of you.

Liam is back at the hospital. His parents brought him back there yesterday when he started to vomit all his food.

The doctors don't know if he is doing a gastroenteritis or if he can not tolerate the new milk. They will have to do some tests to determine what is the real reason.

However in the meantime, since he can not stay without eating because of his disease, they are tube-feeding him and by doing that, they will see how his body is going to react.

What a nightmare !
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No kidding! I am so sorry to hear about the latest developments, Gandalf. Strength to you all, especially little Liam :hug2:
 
Gads! This is a nightmare, Gandalf. My heart goes out to you and Liam and his family. What a horrible ordeal they are all having. :cry: :hug:
 
I wish there would be something more we could do :(

LQB said:
It sure seems to me that with Liam's condition, a case could be made AGAINST vaccines of any kind.
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This is exactly the case according to this article:

Diagnosis and management of glutaric aciduria type I – revised recommendations
J Inherit Metab Dis. 2011 June; 34(3): 677–694.
Published online 2011 March 23. doi: 10.1007/s10545-011-9289-5

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3109243/ [free full text article]

[...] The neuropathological correlate is striatal injury which results from encephalopathic crises precipitated by infectious diseases, immunizations and surgery during a finite period of brain development, or develops insidiously without clinically apparent crises. [...]

Low lysine diet Dietary treatment for GA-I aims to reduce the intake of lysine, the quantitatively most relevant amino acid precursor of neurotoxic GA and 3-OH-GA, while maintaining sufficient intake of essential nutrients and energy substrates. Many metabolic centers limit the total protein intake to reduce lysine intake rather than limiting lysine intake per se. This is often for practical reasons such as the lack of precise or recent data on lysine contents of foods in their country. [...]

Infant feeding Breast feeding has proven benefits for infants but, with the exception of phenylketonuria (PKU), there are few published reports for inherited metabolic diseases (Huner et al. 2005; MacDonald et al. 2006). However, breast feeding in infants with GA-I should be encouraged. It can be performed in analogy to PKU (Francis and Smith 1981) using breastfeeding on demand with special lysine-free and tryptophan-reduced infant formula given prior to breastfeeds thus limiting lysine intake. Although other safe methods for incorporation of breastfeeding into treatment of PKU have been established (van Rijn et al. 2003), they have not been systematically studied in GA-I. Since the amount of lysine in breastmilk is known (86 mg per 100 mL, “Bundeslebensmittelschlüssel II.3”; www.bls.nvs2.de), daily lysine intake can be estimated when breast milk is the only source of natural protein. Bottle feeding can be based on actual lysine intake as the lysine content of infant formula is known. However, limiting lysine intake via exclusive use of standard infant formula may increase the risk for nutritional deficiencies.
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If nutritional deficiencies are less desirable than being overly strict in lysine intake, perhaps the child should have low lysine foods instead of artificial formulas which often have questionable or toxic additives.

Also, according to this article, vaccines can make the disease worse, so clearly we have a discrepancy here for their protocols. There is simply not enough research and experts shouldn't focus on closed-minded protocols. It shouldn't be a robotic health care guided by set rules! Each individual with this genetic disease has to be considered. Common sense should still be kept. If the child doesn't tolerate the formula, how about normal food low in lysine that would be tolerated and not send him into a crisis where he has to be fed through tubes.

Anyway, I hope he stabilizes soon enough. {{Hugs}}
 
I am so sorry to hear about your grandson, Gandalf. It's just tragic.
I will keep you all in my thoughts :hug2: :hug2:
 
I agree with LQB and Psyche regarding giving the little guy vaccines. It seems it will do more harm than good. This is a very difficult diagnosis to be sure. Sending stength to you and your family, Gandalf. :hug:
 
So sorry to hear of your grandson's illness Gandalf. Hopefully there will be better results in the not too distant future. My thoughts are with all the family, especially Liam.
 
So sorry about your grandson, Gandalf. :( Wish, I could do anything, but if there is, please let us know. I'll ask biochemistry and other teachers around here, maybe they know something, but probably no more than what you are already aware of. Will keep you and your grandson in my thoughts. Big hug. :hug2:
 
So very sorry Gandalf, this is indeed a nightmare for the little one and family(s). As the grandparents, know you will offer Liam's parents the best support and advice possible - this will be difficult. :hug2:
 
Just caught up on this thread. I'm so sorry to hear about your grandson, Gandalf. It's truly a nightmare. :(
 
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