Low oxalate/low phenol diet/PANS-was iron deficiency anemia and autism

June 10, 2012

Hi Joanna,

Thanks for your post. I am exhausted with trying to figure out how many issues I

have to battle with. I hate pans the most as I still have no idea what to do

with it. It is very difficult to find a solution when something is not even

proven by a test. If we did find strep, it would give me some clue as to what to

do. But to think that it may be mycoplasma or even lyme at the bottom of it, it

drives me crazy. Diet has been the most difficult area as I don't know how to

continue GFCFSF diet and then make it low phenol and low oxalate. My son's

current diet is a complete mess and I hate it. But it is GFCFSF made from

scratch mostly. He is off most of the fruits but I do give him pear and bananas

may be twice a week. He is almost 9 yrs old and I cannot take away all the foods

from him. I feel like restarting gluten and may be add scd goat yogurt. I am

tired of dealing with anxiety and if that means I need to take my son off the

high oxalate foods, I need to bring back gluten and at least goat milk products.

Adding back high phenol foods is not going to help me as my son clearly reacts

to the salicylates. Joanna, I am so sorry that you are experiencing similar

symptoms with your son. Is it possible for you to share what you have done for

your child's pans and how much improvement you have seen. Also, please share if

you are using high dose probiotics alongwith antibiotics.

Thanks

is

> >> > > > > > >

> >> > > > > > > http://kirkmanlabs.com/ProductKirkman/122/1/Product%20Details/

I used this for my boys. Casandra

> >> > > > > > > To: mb12valtrex

> >> > > > > > > From: t.lynn28@

> >> > > > > > > Date: Tue, 5 Jun 2012 18:15:23 -0700

> >> > > > > > > Subject: Re: iron deficiency and autism

> >> > > > > > >

> >> > > > > > > is,

> >> > > > > > > I'm almost positive I remember reading/hearing Dr. Klinghardt

discuss iron deficiencies.Give it a google. I want to say it was a youtube

video, but can't be positive.

> >> > > > > > > Tammy

> >> > > > > > > From: alexis_d3378 <alexis_d3378@>

> >> > > > > > > To: mb12valtrex

> >> > > > > > > Sent: Tuesday, June 5, 2012 9:08 PM

> >> > > > > > > Subject: iron deficiency and autism

> >> > > > > > >

> >> > > > > > > Hi everyone,

> >> > > > > > >

> >> > > > > > > My friend has an 18 month old boy who is possibly on the

spectrum but the doctors are not sure what to call it yet as it is mild. I am

trying my friend to figure out what we can do for the child while we are waiting

for the early intervention and formal diagnosis. Baseline workup has shown some

issues that we are trying to fix. One issue is low MCV and low iron stores. Iron

deficiency can cause cognitive impairment and attention deficit. We were looking

at some supplement for iron but I couldn't find a specific one in the autism

supplement lines. We are thinking of getting ferrous sulfate compounded but if

anyone has already dealt with iron deficiency and have other ideas, please

share. We have already removed cow's milk and we are working on GFCF diet for

the kid and other workup is going on as well.

> >> > > > > > >

> >> > > > > > > Thanks

> >> > > > > > >

> >> > > > > > > is

> >> > > > > > >

> >> > > > > >

> >> > > > > > ------------------------------------

> >> > > > > >

June 11, 2012

Thank you is. I really, really understand what you're going through. It does feel like a never ending battle. If you get a moment of respite from dealing with one thing, something else comes along, a new problem to worry about. I was trained as an interior designer, I'm sure you can imagine how useful my education is in dealing with all this lol. I definitely feel your pain when it comes to the diet. My son has been on low salicylates for 6 months now and although he really benefits from it (less hyper, more focused, more regular BM's after nearly 2 years of constipation), I'm really concerned about long term implications of such a limited diet, not just because of what might be lacking but also because I find it impossible to rotate foods.As far as my son's treatment with antibiotics, well, he's been on them on and off for about 6 months as well. He was diagnosed with ASD at 2 and a bit but just before his 3rd birthday he suddenly developed a cluster of symptoms including running back and forth, with odd movement of arm/leg and facial tics, not like stims...these were less deliberate, like spasms but slower. He went from never doing that before, to having 10 or more episodes a day, each lasting 20 to 30 min. It felt like that's all he did every day and we couldn't stop him from doing it, even his ABA therapists couldn't get him to stop. He then developed huge anxiety, strange fears, OCD and scripting. It was so painful to watch and it went on like this for 3 months. We pulled Strep titers but they came back negative. Finally, we had an appointment with a new doctor who put my son on amoxicillin. 90% of running and twitching was gone by the end of a single course. OCD, anxiety, light and sound sensitivity dropped drastically as well. He went back on amoxicillin following his stool test to treat reacurring strep and enterococcus overgrowth, plus antifungals. Again, he did really well for a while after that. Each time we followed antibiotics with copious amount of Custom Probiotics (strains depended on test results) and Mutaflor, as my son usually shows low e-coli. Anxiety, OCD started to creep back in after couple of months, along with another strep/enterococcus overgrowth, so he went on erythromycin, this time with no benefit. Finally, we did Azithromycin, 5 days on 5 off 30 day protocol and were going to follow that with on going 2 x a week maintenance dose. However on his second round, my son started to have UTI symptoms but urinary tests didn't detect anything. In the mean time, all anxiety, OCD, and the running with odd movements/twitches came back, HUGE, again very suddenly. I been checking his urinary ph and usually his is too acidic, so I was surprised he was now too alkaline. I checked again 2 weeks later and this time it came back positive for UTI caused by proteus mirabilis, which from what I read can contribute to oxalate problems. So again, he had to go back on antibiotics, this time it's Cephalexin but I don't think it's helping. He is on a last day and still has UTI symptoms or maybe urinary symptoms related to oxalates. I'm not sure what to do next, I've asked for help with his last OAT. I'm also worries that the last few antibiotics undid all the work we've done on his gut.is, given your son's phenol/salicylate problems have you been able to use any naturals or herb based stuff that is high in salicylates? And also, have you heard of Gallic acid as a homeopathic from metagenics, I think, to help neutralize the sensitivity to phenol/salicylates?JoannaSent from my iPhone

Hi Joanna,

Thanks for your post. I am exhausted with trying to figure out how many issues I have to battle with. I hate pans the most as I still have no idea what to do with it. It is very difficult to find a solution when something is not even proven by a test. If we did find strep, it would give me some clue as to what to do. But to think that it may be mycoplasma or even lyme at the bottom of it, it drives me crazy. Diet has been the most difficult area as I don't know how to continue GFCFSF diet and then make it low phenol and low oxalate. My son's current diet is a complete mess and I hate it. But it is GFCFSF made from scratch mostly. He is off most of the fruits but I do give him pear and bananas may be twice a week. He is almost 9 yrs old and I cannot take away all the foods from him. I feel like restarting gluten and may be add scd goat yogurt. I am tired of dealing with anxiety and if that means I need to take my son off the high oxalate foods, I need to bring back gluten and at least goat milk products. Adding back high phenol foods is not going to help me as my son clearly reacts to the salicylates. Joanna, I am so sorry that you are experiencing similar symptoms with your son. Is it possible for you to share what you have done for your child's pans and how much improvement you have seen. Also, please share if you are using high dose probiotics alongwith antibiotics.

Thanks

is

> >> > > > > > >

> >> > > > > > > http://kirkmanlabs.com/ProductKirkman/122/1/Product%20Details/ I used this for my boys. Casandra

> >> > > > > > > To: mb12valtrex

> >> > > > > > > From: t.lynn28@

> >> > > > > > > Date: Tue, 5 Jun 2012 18:15:23 -0700

> >> > > > > > > Subject: Re: iron deficiency and autism

> >> > > > > > >

> >> > > > > > > is,

> >> > > > > > > I'm almost positive I remember reading/hearing Dr. Klinghardt discuss iron deficiencies.Give it a google. I want to say it was a youtube video, but can't be positive.

> >> > > > > > > Tammy

> >> > > > > > > From: alexis_d3378 <alexis_d3378@>

> >> > > > > > > To: mb12valtrex

> >> > > > > > > Sent: Tuesday, June 5, 2012 9:08 PM

> >> > > > > > > Subject: iron deficiency and autism

> >> > > > > > >

> >> > > > > > > Hi everyone,

> >> > > > > > >

> >> > > > > > > My friend has an 18 month old boy who is possibly on the spectrum but the doctors are not sure what to call it yet as it is mild. I am trying my friend to figure out what we can do for the child while we are waiting for the early intervention and formal diagnosis. Baseline workup has shown some issues that we are trying to fix. One issue is low MCV and low iron stores. Iron deficiency can cause cognitive impairment and attention deficit. We were looking at some supplement for iron but I couldn't find a specific one in the autism supplement lines. We are thinking of getting ferrous sulfate compounded but if anyone has already dealt with iron deficiency and have other ideas, please share. We have already removed cow's milk and we are working on GFCF diet for the kid and other workup is going on as well.

> >> > > > > > >

> >> > > > > > > Thanks

> >> > > > > > >

> >> > > > > > > is

> >> > > > > > >

> >> > > > > >

> >> > > > > > ------------------------------------

> >> > > > > >

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