Fw: - Re: Family In Crisis

[Guest guest]

----- Forwarded Message ----To: miralax Sent: Wed, December 30, 2009 12:22:31 PMSubject: - Re: Family In Crisis

Hi -

I'm sorry your nephew is going through all this, and I know you and your family are very worried. I hope he's doing better and that you all are beginning to get some answers.

A couple things I wanted to mention:

1) Please consider asking them to test him for food intolerances - via blood **IgG** testing (not IgE!!!! and not scratch testing!!! resort to blood IgA if needed, but IgG is (IMHO) better - if they do IgA, be sure they check total serum IgA levels, too) - food "intolerances" are distinct from food "allergies" and are tested differently.

You can order this yourself if needed (I can send links if you need them - or check in the beginner's file here for info on Food intolerances/ allergies - there's a list of labs in one of the documents I uploaded).

Another option is to do stool/fecal IgA testing through Enterolab (www.enterolab. com). This is ordered by the consumer directly and I can tell you that many mainstream practitioners have not heard of this lab or type of testing, so may scoff at it, but the testing is legitimate (IMO and the opinion of many satisfied consumers!) and it's unfortunate it's not more widely accepted in mainstream. They only test for a handful of potentially problematic foods -but they are the most commonly problematic foods (gluten, casein/dairy, soy, egg, dietary yeast)

Food intolerances, particularly to gluten and dairy/casein, can lead to a number of health conditions, including neurological issues like seizures, peripheral neuropathy, Parkinson's, bipolar, etc. So if he's had seizures, it's at least something to consider.

In many austistic and spectrum kids, removing gluten and casein from the diet leads to dramatic speech gains (and many other improvements) , so if he's had trouble with speech, too, this again suggests at least ruling gluten/casein/ etc intolerances out.

Food intolerances, particularly to gluten, dairy, and soy, are also contributing factors to constipation/ withholding in children, so this is another reason to consider testing - to find out if food intolerances could be causing (or at least contributing to) his stooling issues & might be able to get him off miralax/laxatives (it did for us!!!).

2) regarding oxalates, PEG, etc. - there's been a lot of discussion of this in the past at this group but i know that searching the archives here is sometimes not very effective/efficient . Below are links to some past threads that will hopefully help & give more info. Also, PLEASE keep us posted on the oxalate test results - also ask them to check him for evidence of **ethylene glycol** (EG) (a.k.a., antifreeze) poisoning. If they can find **EG** in his system, and assuming he's not been consuming antifreeze, this would be of tremendous significance - it would give the first evidence that we (in this yahoo group) would know of that PEG might actually be breaking down into EG in the gut. So, please ask if they can test specifically for EG in his system. Do ensure that he's not accidentally ingested any antifreeze, though!

http://health. groups.yahoo. com/group/ miralax/message/ 10410

http://health. groups.yahoo. com/group/ miralax/message/ 10413

http://health. groups.yahoo. com/group/ miralax/message/ 10694

http://health. groups.yahoo. com/group/ miralax/message/ 5887

http://health. groups.yahoo. com/group/ miralax/message/ 7963

http://health. groups.yahoo. com/group/ miralax/message/ 4733

hth!

best,

>

> My three and a half year old nephew is very, very ill. He has been in a Children's Hospital going on four weeks now. He is in the neurological center. We know that he has an inflamed brain stem, but we do not know the cause. The doctors haven't a clue; he has had many, many invasive tests done. Two spinal taps, two MRI's, cat scans, X-rays, a toxicology panal, many blood tests, IVIG's. He has had so many needles in his arm this month that his veins are collapsing. They have eliminated many possible causes.

>

> We don't know if there is a connection, but he has been taking Miralax for three months now for chronic constipation which was recommended for him by his pediatric physician. His last dose was six days ago and afterward he was like a rag doll all day - couldn't hold head up or even speak.The following day he was not given any and could hold his upper body up if supported by pillows. On Monday, our family officially ordered that he not be given any more Miralax.

> Six days later and he still cannot support his weight enough to stand and walk more than two steps. But no more rag doll symptoms -thank God.

>

> We are starting to question the doctors who keep telling our family that Miralax is totally safe and cannot be the cause. They are guessing that he is recovering from a virus that attacked his brain stem, but he never showed any signs of having a virus before all this happened - he was acting like a normal healthy active little boy. A virus was not found in any of the tests that they have done on him this month. Plus, he is not getting better which they said he would be if it was a virus especially after having eight antibody treatments.

>

> The toxicology report came back negative, but I'm still not totally convinced that Miralax is not the cause. I'm looking for anything that might help this sweet little boy. Is there anyone else out there who may have had something similar happen to their child or family member after being exposed to Miralax for a prolonged period of time?

>

> This is what happened:

> At first he complained of "his hand not working", he could not grasp things with his hand. This was combined with abnormal lethargy that lasted for several days. Then he collapsed while going to the bathroom. His urine had been cloudy and getting progressively worse before he was admitted into the hospital and got the IV, right before this, it looked like he was urinating face cream. He never regained his strength, and has progressively gotten worse over the last month. According to my sister, it look like he has been periodically having small seizures as well as speaking slower than normal including having trouble finding the words to communicate his thoughts.

>

> Looking for insights.

>

> Thank you

>

> a.m.s.

>