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All about Boo (DS1)

post #1 of 14
Thread Starter 
I'm gearing up for an intensive healing phase for DS1 (almost 8) and would love input on where to focus my time, money, and attention since all is limited at the moment.

Background: As a baby he was refluxy, but a happy spitter once we started him on Pepcid. Kept him on Pepcid til 9 months, then pedi said he had outgrown it (I'm not sure how she knew that since we didn't think he had) so we took him off. BF and supplemented with regular milk-based formula until 9 months, then straight formula til 12 months, then cow's milk. Around 12 months developed keratosis pilaris on face and upper arms and still has this pretty severely. At 14 months developed first of many ear infections. Reacted with hives to amoxicillin given for first E.I. Around 18 months had 1st bout of croup. Between 18months and 3 1/2 had "recurrent spasmodic croup" with most colds, usually resulting in stridor with breathing and often taking us to the E.R. for prednisone and/ or breathing treatment of epinephrine. Saw the allergist at 3 1/2 and he tested negative to all allergens. As he grew E.I.'s became less prevalent but he still tends to have trouble clearing his sinuses after illness and I suspect gets sinus infections. Around age 5 began complaining of stomach aches periodically. These continue to this day. Sometimes he'll have several in a week. Sometimes weeks go by with none. Generally its after he has had a glass of milk to drink, but he drinks milk every day and most often does not have problems. In the past 12 months has re-developed the spasmodic croup, taking us twice to the ER this spring/ summer with very severe scary symptoms. He has been slow to recover from illness and has been taken down harder than other family members with viruses last school year. But most recently he was the only person in the family not to get the cold virus in August (which caused DD to have croup). Behavior wise, ages 3 and 4 were very challenging as he was a very emotional, explosive, and strong willed little guy. These days he is usually cheerful but can still be all of those things at times + whiny.

Recent testing: Allergist found normal pulmonary function and no environmental allergies. ENT plans to scope next week. Homeopath did IgG testing and found these results: http://mothering.com/discussions/sho....php?t=1261216

Piecing it together, I strongly suspect reflux as causing both the stomach aches and croup. We're planning to eliminate the 1+,2+, and 3+ foods after the scope, and start on gut healing. I'm looking for advise on what specific gut healing measures have been most well tolerated by your DC's of similar ages and also what things would you focus on? (gut healing, correcting nutrional deficits, clarifying triggers/ symptoms of foods, building immune system, etc)?
post #2 of 14
Thread Starter 
Bumping this up. Its payday, so I'm planning to start buying some supplements for DS's healing plan. Still looking for thoughts on which avenues to focus on / which supplements are most important at this stage. We haven't been doing anything regularly to this point, so a probiotic is obviously the first place to start I'm thinking... Then I don't know whether to invest in a high quality multi-vit, or work the detox route, or just hit the gut healing really hard.

Our homeopath recommended this: http://www.newchapter.com/product-ca...ield-mushrooms.
I'm not familiar with the theory behind this product so I would love thoughts from those of you who are.
post #3 of 14
Has he ever been off dairy entirely? Sounds like a classic history of a child with milk intolerance, I'd at least be trying that.
post #4 of 14
Thread Starter 
Quote:
Originally Posted by mamafish9 View Post
Has he ever been off dairy entirely? Sounds like a classic history of a child with milk intolerance, I'd at least be trying that.
Yes, but never for longer than about a week at a time. Still, in that week we didn't see any improvement in congestion or stools.
post #5 of 14
I'd second taking him off dairy. If dairy is a problem, a week probably was not long enough to see improvement. That would take a couple weeks at least, and with things like fluid/EIs/sinus trouble, it might take a little longer. Also start a food journal. Both those things are free.I would also find a great osteopath who does craniosacral/body work, and who is very good with nutrition (we've got a great one of those). If you could get a Genova stool test, you could find out how he's doing on bacteria (good/bad) and enzymes. For us, it was $150 on the PayAssured Program, and that told us which probiotics were best for DS, and which enzymes he needed. And he's improved a lot since both of those.Can you tell us any more info about him?
post #6 of 14
You've written some about your other kids too, I forget all of the details, but it seems possible that there's more going on, in terms of common problems in the family.

I'd agree with your hunch, and the PPs suggestions, that milk doesn't sound like your friend. But sometimes, when more is going on, just removing the one problematic food isn't enough, and a week isn't all that long. When I first removed most dairy, years ago, I thought I didn't notice a change, til after a month I drank a glass of milk, and then it was obvious. The list of IgGs you got was pretty long, I think a list that long implies a noticeably leaky gut (vs my kids for example, who have a fairly short list--clearly some leaking is occurring but not as extensive).

The behavior stuff you mentioned, explosive and strong-willed and whiny, has been health-related for my DD, though it took a while to change that for us. I know others have had really noticeable changes in stuff like that just removing foods--I don't know how to figure out which may be the case for you, I only found out it was an issue for us after I figured the right combo of changes.

Can you write a bit more about your health, and your DH and the other kids? Because sadly, you've been here long enough that it doesn't seem, to me, like just a dairy issue, or just a couple foods, it seems more.

In terms of supps, I think a basic multivit and extra magnesium is pretty reasonable for most everybody. At some point supplemental vitamin D seems good for most people too (we use Carlson D drops, coconut oil base, very affordable online). I like Thorne multivits, their Basic Nutrients have good kinds of vitamins and minerals and real folate. You wouldn't want to give him an adult dosage, but an adult dosage is multiple capsules, so 1-2/day would be in the realm of appropriate. It's still a bit light on minerals (they have various separate mineral supps) but it starts to depend on what you're looking for at that point. I give the kids Now brand magnesium citrate, I bought it as a powder because it's more economical. In general, a mag citrate or mag glycinate would be more effective than mag oxide (you want an organic compound attached to the magnesium rather than an inorganic compound).

Also, if you remove dairy and see improvement, at some point I still think it's probably worthwhile to try lactose base cell salts (have you seen the Cell Salts thread in H&H?). Some people with dairy intolerances definitely cannot take them, but quite a few seem to tolerate them just fine, and they are more affordable than the sucrose-base ones (contact Panserbjorne for those). Whichever you take, they rock. Flat-out, they are amazing, they are saving us money in terms of me supplementing myself and the kids less, I've seen improvements in chronic stuff, including DD's suspected ganglion cyst (went away just before our pedi visit to confirm that's what it was) and in acute stuff--ferrum phos is great for illnesses. They're one of the coolest things I've tried in these several years.

So maybe a bit more info on the family, on your health history, on things that stand out for your DH, and we can brainstorm a bit on broader stuff, which could help with supplementation and deciding a direction.

That last part--for my kids, easiest to see in DS, I don't think we would've gotten far just focusing on leaky gut stuff, but I have seen his food intolerances decrease, to the point that I don't see reactions to small amounts of some foods and large amounts of others, by improving his detox pathways and getting him more caught up. When we first cut gluten and dairy, I saw no change in him for 3 months, and I think we needed all the supps I was giving him then plus gfcf to get him caught up enough to see an improvement, and then see a problem when he got some gluten. Now, he's gotten reasonable amounts of gluten (homemade playdough with wheat flour) and didn't react, and I don't see any reaction to cashews or chocolate (foods he was intolerant of, not IgE).

Some people have improvements like that with gut healing diets like SCD, some people need both SCD and detox-related supps, I think the permutations can be similar when things like chronic lyme are involved as well. But that's what I mean by adding in some more family history.

Did you search for the old threads on keratosis pilaris? I forgot the common thread, but IIRC vitamin A, magnesium, omega-3 fatty acids, and biotin have all improved KP in some people, I think they're different parts of a chemical chain.
post #7 of 14
Thread Starter 
Alright, here's a little more info. I'm trying not to overwhelm you all with too many details so finding the right info to share is tricky for me.

DH also has KP. Otherwise, he struggles a bit with weight and has intermittent htn - under control when working out regularly. Family hx of htn, high cholesterol, heart disease, and prostate and lung cancers.

My family hx includes colon cancer, heart disease, htn, high cholesterol, diabetes, anxiety and depression, IBS, rheumatoid and osteoarthritis, hypothroidism.

My health issues include colon polyps, a few episodes of depression which were mostly situational and resolved without meds, environmental and food allergies (IgE to mango and various tree nuts) as well as multiple intolerances. My anxiety has been better controlled in the last year as I have been making progress with identifying food intolerances and gut healing. I know when I get really anxious magnesium definitely helps. Reintroducing dairy to my diet in the past month seems (this is today's thought anyhow) to be bringing back my joint pain which has been gone for awhile now. The pain is most noticeable in my hands and wrists bilaterally and I was worked up for RA a few years ago and it was negative, although my blood was showing inflammation.

Our food intolerance journey started with DS1 and his reflux although I didn't realize it then. DS2 developed colitis at just a few weeks of age. At the advise of our GI I never pursued his issues beyond dairy, which didn't resolve things. The GI symptoms eventually resolved around 6-9 months of age but he continued to have very restless sleep for several more years and chronic anemia (which I think is now resolved but we haven't checked lately). At this point DS2 *seems* be the healthiest of all of us. The only thing remarkable to say about his health is that he does tend to be slightly constipated and he is extremely active to the point I wonder sometimes about ADHD. But so far he's doing well in school and his teacher doesn't see a problem so maybe he's just normally active.

DD is my extremely sensitive kid. She's almost 3 and still pretty sensitive to soy, less so to dairy but still can't have dairy directly. Recently I've been able to have dairy without her reacting thru BM but she did react slightly to soy when I trialed that last week. Other health issues with DD include hypothyroid, congenital kidney defects (bilateral) and renal tubular acidosis.

More about DS1: he has a solid build - is tall and thin but broad shoulders and heavy bones, iykwim. Much more like DH in appearance than me. He is athletic, but less coordinated and with a lower level of endurance than DS2. Has a tendency not to notice that he is walking on things (like my work bag, or computer ). Generally a poor sense of his body in space. As a toddler he had an unusually high pain threshold. Emotionally, as I mentioned, he tends to be strong-willed, difficult to reason with, and intense in his emotions. He is extremely intelligent, but a black and white thinker. Very concerned with fairness. He loves to snuggle with people even when they don't want to be snuggled with (like his brother and sister) which I think demonstrates both his loveable side but also his need to push people's boundaries.

I agree that dairy needs to go along with the others. The trick with him is that his symptoms, as far as we can see at this point, are more chronic in nature and not likely to be something we could track day to day. I'm hoping if we give his body a rest from his triggers for a bit we can reintroduce things and see more obvious symptoms.

Any thoughts on how long we should keep things out before trialing?
post #8 of 14
That's some heavy duty stuff in the family history category. I'd search mamafish9's old posts, she's got a lot of autoimmune stuff in her family and she's making some interesting connections.

I can't write much, I have been avoiding nasty fatigue lately by sleeping 9+ hours a night and I can feel myself hitting a wall.

Can you remove dairy for the whole family? That doesn't help DS1 at school or other away-from-home activities, though, does it?

Gluten and autoimmune stuff go hand-in-hand, even separate from celiac.

You've got a lot of stuff that links to folate and methylation (mamafish's son needs a ton of B12, I had no idea that was possible, but methylation also depends on B12)--cancers are often related to folate intake, so people who need more folate have a higher risk. Allergies/anxiety can be methylation related too, for me I think that's what was going on, and some forms of heart disease.

I'm blanking, I can't think of what htn is.

For some kids, they need to remove all the foods, or at least several of the worst, before they see improvement. I think I had to take out both gluten and dairy for DS to see a change. I'm just concerned that a dairy elimination, and then trial, w/o really considering gluten, will not show very much conclusively.

Ack, my brain looks like the melting face of the guy on TV (what IS DH watching?!?) so I need to go to sleep. I wish I had something more coherent to suggest.
post #9 of 14
Thread Starter 
Thanks for your thought, Tanya.

Just back from the scope. Not surprisingly, there was no anatomical reason for his frequent croup. The only thing the ENT noted that was at all abnormal was signs of inflammation in the trachea. He didn't end up looking in the esophagus but I suppose we can assume there is probably inflammation there too. The ENT said we can't say for sure it's reflux but reflux would be one of the possible explanations.

So I don't know if he is refluxing and that is causing the inflammation, or if he just has inflammation for another reason. Wouldn't he be able to feel it if he was refluxing? Or would his stomach aches be the only sign?

I'm debating on the gluten issue. On one hand I have no reason to suspect gluten specifically other than the fact that he craves carbs in general. I have eliminated gluten for myself and for dd a few different times and have seen no change, and have then added it back with no obvious issue. And none of us have tested as sensitive to gluten. So the only thing telling me to eliminate it is the fact that gluten is so often related to inflammation and autoimmune stuff, like you said. I'm much more conservative than most on this board when it comes to eliminating - I am just scared to take out more than is absolutely necessary ever since my initial ED when I lost 30+ pounds in 3 months.

I think dairy absolutely has to come out, and for awhile. Months. The others that he tested positive to in the 1+, 2+, and 3+ range will come out but maybe for a shorter time. How long do you think I need to keep those out (primarily we're talking about soy and peanuts as far as daily foods he ingests) before trialing them? How long do you think dairy should be out? Maybe just indefinitely at this point since he doesn't have noticeable daily symptoms but more of an overall inflammation?

I'm going to have to search on reflux and try to figure out what to do about that. With dd I really focused on balancing gut flora. It seems like balancing stomach acid would need a slightly different approach, although he obviously also needs the standard gut healing stuff.

Kathy - your thought on the Genova stool test is good. DD and I have both had that done and found it very helpful. We might go that route at our next appt with the ND / homeopath.

I'll check out Mamafish9's posts and find out more about the autoimmune stuff. Thanks for that tip.
post #10 of 14
Hmmm, several thoughts.

First, I'd most definitely work on supporting methylation (for the whole family, but definitely DS1). The basics there - the two main ways most people have blocked/slow methylation is if they have mutations affecting how they use folate and B12. So to get around those, you supp 200mcg/day each of folinic acid and folate (not folic acid) - the easiest way to do this is Thorne folacal and mthf folate, both of which you can get at iherb.com. Get some empty capsules too - the Thorne capsules have too much for one dose, you'll need to split them up. Then get some sublingual B12 or drops. Try methyl B12 (it's easiest to find), if that causes hyperness, get hydroxy B12 (you can get drop form of all of them at holisticheal.com, the Mega drops are the cheapest B12 around). Give 3-5mg of B12 a day (spread out as best as you can, and all before 4pm or so).

Well functioning methylation improves immune responses and neurotransmitter balances, amongst other things, so it can be the root of a lot of issues. My DS has two mutations that impact his ability to recycle B12 - and it pretty much ground his methylation to a halt, with all kinds of consequences.

Second, I'd take out dairy & soy (and peanuts), and see what happens in a week. We saw nothing taking just dairy out for my son, it wasn't until we had his other intolerance foods out and trialed dairy that it was obvious he reacted to dairy.

I'd start some antioxidants to try to help reduce the inflammation (working on methylation will help too). The basics would be vitamin C & E, I like grape seed extract (not grapefruit seed extract) as well. Then I'd do a good trace minerals supp (I use Thorne) and some magnesium (I use bluebonnet mag glycinate - I get all this stuff at iherb). Lots of mag - it can be a big factor for intense behaviors and a lot of other stuff. The zinc in the trace minerals, + B12, should help with stomach acid (often reflux is from too little stomach acid, not from too much - and too little often comes from zinc and/or B12 deficiency).

Behaviorally, some of what you mention about your son makes me wonder whether he might possibly have Asperger's - if it isn't something you've considered before, you might choose to read a little in that direction to see if it fits your son. Coordination and spatial issues, very smart but very black & white, unaware of personal boundaries, those are all things that would be a fit with many people with Asperger's (plenty of whom are undiagnosed). Here's a place to start reading if you are interested, http://www.aane.org/about_asperger_s..._syndrome.html
post #11 of 14
Thread Starter 
Quote:
Originally Posted by mamafish9 View Post
Hmmm, several thoughts.

First, I'd most definitely work on supporting methylation (for the whole family, but definitely DS1). The basics there - the two main ways most people have blocked/slow methylation is if they have mutations affecting how they use folate and B12.
How would we know if we have one of these mutations? One would be the MTHFR gene, right? I''ve never been tested but assume I don't have it since I have not had any problems with my pregnancies, with the exception of DD's missing chromosome. I looked into whether Turner Syndrome is related to MTHFR and didn't find any evidence that it is. But of course it may be one of those things that hasn't been discovered yet.

Quote:
Originally Posted by mamafish9 View Post
So to get around those, you supp 200mcg/day each of folinic acid and folate (not folic acid) - the easiest way to do this is Thorne folacal and mthf folate, both of which you can get at iherb.com. Get some empty capsules too - the Thorne capsules have too much for one dose, you'll need to split them up. Then get some sublingual B12 or drops. Try methyl B12 (it's easiest to find), if that causes hyperness, get hydroxy B12 (you can get drop form of all of them at holisticheal.com, the Mega drops are the cheapest B12 around). Give 3-5mg of B12 a day (spread out as best as you can, and all before 4pm or so).
DS1 isn't swallowing capsules yet. Are these things I can sprinkle in food?

Quote:
Originally Posted by mamafish9 View Post
Well functioning methylation improves immune responses and neurotransmitter balances, amongst other things, so it can be the root of a lot of issues. My DS has two mutations that impact his ability to recycle B12 - and it pretty much ground his methylation to a halt, with all kinds of consequences.

Second, I'd take out dairy & soy (and peanuts), and see what happens in a week. We saw nothing taking just dairy out for my son, it wasn't until we had his other intolerance foods out and trialed dairy that it was obvious he reacted to dairy.

I'd start some antioxidants to try to help reduce the inflammation (working on methylation will help too). The basics would be vitamin C & E, I like grape seed extract (not grapefruit seed extract) as well. Then I'd do a good trace minerals supp (I use Thorne) and some magnesium (I use bluebonnet mag glycinate - I get all this stuff at iherb). Lots of mag - it can be a big factor for intense behaviors and a lot of other stuff. The zinc in the trace minerals, + B12, should help with stomach acid (often reflux is from too little stomach acid, not from too much - and too little often comes from zinc and/or B12 deficiency).

Behaviorally, some of what you mention about your son makes me wonder whether he might possibly have Asperger's - if it isn't something you've considered before, you might choose to read a little in that direction to see if it fits your son. Coordination and spatial issues, very smart but very black & white, unaware of personal boundaries, those are all things that would be a fit with many people with Asperger's (plenty of whom are undiagnosed). Here's a place to start reading if you are interested, http://www.aane.org/about_asperger_s..._syndrome.html
I go back and forth on whether I think he could have Aspergers. Every time I start to think maybe he does I read up on it again and change my mind.

So, we're 3 days in to the ED. DS1 is being a trooper. He has hardly complained at all. I think it helps that he has seen DD and I go through it for years now, we've found yummy alternatives that he's excited to try, and he is old enough to understand why we're doing this and the trips to the ER are scary enough to motivate him to try to avoid it in the future.

So far I've noticed reduced severity of his KP, diminishing of the red circles under his eyes, no tummy aches, and the most pleasant disposition he has had in months. None of these things is conclusive evidence of a food reaction (or lack thereof) though since all of these things normally fluctuate anyhow depending upon sleep and illness and such. But I'm optimistic that we're on to something.
post #12 of 14
Thread Starter 
A little light reading for those interested in genetics. My late evening brain is having a bit of trouble processing this, but I think the jist is that maybe there is a connection between TS and MTHFR.

http://journal.shouxi.net/qikan/article.php?id=224883
post #13 of 14
Quote:
Originally Posted by LaurieG View Post
How would we know if we have one of these mutations? One would be the MTHFR gene, right? I''ve never been tested but assume I don't have it since I have not had any problems with my pregnancies, with the exception of DD's missing chromosome. I looked into whether Turner Syndrome is related to MTHFR and didn't find any evidence that it is. But of course it may be one of those things that hasn't been discovered yet.

MTHFR is one (there are several possible mutations), and MTRR is the other (related to decreased ability to recycle B12). I tested my son using Dr. Yasko's genetics panel (www.holisticheal.com). He has no MTHFR mutations, but 2 really tough MTRR mutations.

From what I've read, both MTHFR and MTRR mutations (in the mamas) increase risk of Down's, so it doesn't seem unreasonable that one or both would be a risk factor for Turner Syndrome. Both MTHFR and MTRR mutations can be fairly silent in some people, noisy in others - either my husband or I clearly has at least one tough MTRR mutation, but we don't know who, it's not obvious. In my son (he is autistic), the effects are large.

So, you can run the genetics panel (and with your family history, it might be valuable to do that) - but it's a lot cheaper just to try methylation supps and see if you notice any differences.


DS1 isn't swallowing capsules yet. Are these things I can sprinkle in food?

Yes, folate is pretty tasteless. The B12 drops taste good, you just drop/squirt them in.

I go back and forth on whether I think he could have Aspergers. Every time I start to think maybe he does I read up on it again and change my mind.
I have found that if my kid seems to have at least some characteristics of kids with autism, that I can get a lot of good information researching in the "autism" world - for biomedical and therapies and things we can do at home that might benefit my son. He's never been formally diagnosed (and now things are shifting, he has language processing issues that I think are more serious now than his autism). So for me, the label is only useful as a guide into the right stuff to read and think about (whether the label exactly fits my kid or not).

And yay on seeing some early progress on your ED!
post #14 of 14
Thread Starter 
Thought I would post an update on our ED. Its been 10 days now. AFter I posted the last time some of the things I had thought maybe were food related improvements fluctuated back to not so great (i.e. the KP, the buggers in his nose, and the circles under his eyes). He continued to have a very pleasant disposition all week, though. This weekend we added back in soy. We had originally planned to leave it out for 2 weeks but then realized DH and I are going out of town this weekend and we didn't want him trialing foods with us not here and the grandparents are big suppliers of processed foods, so asking him to stay there all weekend and not eat anything they have would be really hard. So we added back soy but we also had a really busy weekend with not enough sleep. DS's disposition has been a disaster now for 3 days. Whiny, intense, pushing everyone's buttons on purpose. Ugh. Additionally, the first night on soy he wet his bed. The second and third nights he woke up in the middle of the night and came to our bed and took some time to fall back asleep (this is very unusal for him, especially when he is tired).

DH thinks its all not enough sleep and has nothing to do with the soy. So, we're obviously going to have to do a few days on/ few days off for awhile to see if the behavior cycles with it.

We haven't started any supplements yet. I didn't want to change too much at once, but figure I will do that next week.

As a side note, I restarted myself on a multivit and mineral. I haven't been taking a multivit for a long time and the one I was taking before has magnesium stearate, which I'm pretty sure DD reacted poorly to with difficulty sleeping. But she's a lot older now and less sensitive and her thyroid pill has mag stearate (must be a very small amt though b/c it is a very small pill). Her sleep on the thyroid pill cycles - a few weeks of easily falling asleep and staying asleep most of the night, then a few weeks of being crazy til 10:30 or later and waking every few hours. Extra magnesium will often help us shift to the better cycle after a few days, but I don't know why she does okay for awhile and what triggers the bad spells. Anyhow, I started taking the multivit that I already had (with the mag stearate) and her sleep is terrible again, but it might just be her normal fluctuations. It also corresponded with starting her back on her multivit and mineral (we use Brainchild but had left it on vacation in early August and just started back, but with a different formula and with the flavoring which we hadn't used before). In addition to the sleep decline, she was really refluxy today and yesterday. And I have been trying to get better about taking my Juice Plus regularly and I have found that my GI tract doesn't seem to adjust like they say it should after a week or so.

So all that to say this... 1. This is why I find it easier to avoid supplements . and 2. When and how do you know that you are reacting to the supplement (and therefore need to find a different supp) vs. just adjusting to it (and therefore should stay the course)?
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