Nystatin passing through BM? - Page 2

[lil_miss_understood]

The doctors often don't recognize the symptoms. Period.
DS1 wasn't a year old yet when he got hit with an IgE allergy and it took the doctors (and myself... I was clueless) almost 9 years to finally get a clue.
Allergies, unless they are anaphylactic, just aren't well recognized at all.

[LaurieG]

Originally Posted by JacquelineR

The doctors often don't recognize the symptoms. Period.
DS1 wasn't a year old yet when he got hit with an IgE allergy and it took the doctors (and myself... I was clueless) almost 9 years to finally get a clue.
Allergies, unless they are anaphylactic, just aren't well recognized at all.

I'm thinking specifically of a cows milk (or soy) protein intolerance, which most of the docs we've seen actually do recognize to some extent. With DS they told me it would go away by the time he was 6 months. With DD they said 12 months, then they said 18 months, and now they are saying 2-3 yrs. So it seems like (to a very limited extent) there is some acceptance that these issues exist in young children and for some reason the mainstream medical establishment is under the impression that they go away on their own. I'm curious why they have come to that conclusion, when most of us here have had a different experience or don't really buy it.

[lil_miss_understood]

Originally Posted by LaurieG

I'm thinking specifically of a cows milk (or soy) protein intolerance, which most of the docs we've seen actually do recognize to some extent. With DS they told me it would go away by the time he was 6 months. With DD they said 12 months, then they said 18 months, and now they are saying 2-3 yrs. So it seems like (to a very limited extent) there is some acceptance that these issues exist in young children and for some reason the mainstream medical establishment is under the impression that they go away on their own. I'm curious why they have come to that conclusion, when most of us here have had a different experience or don't really buy it.

Often times, the symptoms change. Since the symptoms change, they don't recognize it as being a problem any longer.
For example, with DS1, in his first year of life, he had "colic" for 19 hours a day, constipation severe enough to cause anal fissures and bleeding, occasional vomiting, one incidence of pale, limp, lifelessness, and problems sleeping (didn't sleep in more than 30 minute stretches). After that, he switched off to diarrhea for 6 months, "colic" for a mere 9 hours a day, occasional vomiting (attributed to colds and the like), problems sleeping and behavioral problems. At around 2 years of age, he had autistic-type problems ("downgraded" to "ADHD" by removing food colorings, ketchup, ranch dressing and whey), occasional vomiting (attributed to "overeating"), asthma, problems getting to sleep...
And that is a "true" allergy to cow's milk, which the medical establishment supposedly recognizes constantly. Yet, I took him to so many doctors I lost count trying to get someone to help us.
So, originally, with DS1 they told me it was possible he had "lactose intolerance" and it would go away. When I changed him to soy formula and it didn't go away, I was told "He must be intolerant of that too". But it wasn't important enough to change to a hypo-allergenic formula (despite the fact that I was literally delusional from lack of sleep) because he'd "outgrow it". When the symptoms changed around 2 years to primarily behavioral/sleep issues and asthma, I was told basically that there was no way it was intolerances ("Oh he's outgrown that.") and that he had ADHD and asthma and I should put him on Ritalin and steroids (oh and stop feeding him so much so he'd stop vomiting .
Oh, did I mention that I was told to put him on formula because of the very symptoms that got *worse* on formula? Yeah. And then I couldn't get him back to breast. Go, mainstream med.
(I'm a little bitter, excuse me.)
So basically, no one ever said the word "allergy" to me so I was completely clueless since the only experience I'd ever had with allergies was environmental/seasonal. None of my searching online ever brought up allergies either.
Does that make it more clear what I mean?

[LaurieG]

Originally Posted by JacquelineR

Often times, the symptoms change. Since the symptoms change, they don't recognize it as being a problem any longer.
For example, with DS1, in his first year of life, he had "colic" for 19 hours a day, constipation severe enough to cause anal fissures and bleeding, occasional vomiting, one incidence of pale, limp, lifelessness, and problems sleeping (didn't sleep in more than 30 minute stretches). After that, he switched off to diarrhea for 6 months, "colic" for a mere 9 hours a day, occasional vomiting (attributed to colds and the like), problems sleeping and behavioral problems. At around 2 years of age, he had autistic-type problems ("downgraded" to "ADHD" by removing food colorings, ketchup, ranch dressing and whey), occasional vomiting (attributed to "overeating"), asthma, problems getting to sleep...
And that is a "true" allergy to cow's milk, which the medical establishment supposedly recognizes constantly. Yet, I took him to so many doctors I lost count trying to get someone to help us.
So, originally, with DS1 they told me it was possible he had "lactose intolerance" and it would go away. When I changed him to soy formula and it didn't go away, I was told "He must be intolerant of that too". But it wasn't important enough to change to a hypo-allergenic formula (despite the fact that I was literally delusional from lack of sleep) because he'd "outgrow it". When the symptoms changed around 2 years to primarily behavioral/sleep issues and asthma, I was told basically that there was no way it was intolerances ("Oh he's outgrown that.") and that he had ADHD and asthma and I should put him on Ritalin and steroids (oh and stop feeding him so much so he'd stop vomiting .
Oh, did I mention that I was told to put him on formula because of the very symptoms that got *worse* on formula? Yeah. And then I couldn't get him back to breast. Go, mainstream med.
(I'm a little bitter, excuse me.)
So basically, no one ever said the word "allergy" to me so I was completely clueless since the only experience I'd ever had with allergies was environmental/seasonal. None of my searching online ever brought up allergies either.
Does that make it more clear what I mean?

I totally get where you are coming from! I've had a similar path (though not as severe) with my 2 boys. How extremely frustrating that must have been!!!


But I'm also wondering what is going on in the body of these sensitive babies that their symptoms change like this.

[tanyalynn]

Originally Posted by LaurieG

But I'm also wondering what is going on in the body of these sensitive babies that their symptoms change like this.

I personally think many, many people out there have problems with common foods, it's just that we are the ones with kids for whom the problems are so obvious that we can't ignore it. As an adult, I got congestion from dairy products. I don't think I did as a kid, but I think it's actually natural that this stuff changes over time (why? no idea really, but things like my daughter's spitting up changed, so it just seems normal). I think the biggest difference is that our kids are at the point of needing help now, whereas in a lot of other families, this whole mess will be 1 or 2 generations down the road (or some families just go the conventional med route--it kills me that a friend recognizes she has a problem with dairy, doesn't take it out, weans her kiddo early to formula, and won't connect the recurrent EIs to dairy and doesn't seem to consider the lack of breastmilk as a problem).

[LaurieG]

Originally Posted by TanyaLopez

I personally think many, many people out there have problems with common foods, it's just that we are the ones with kids for whom the problems are so obvious that we can't ignore it. As an adult, I got congestion from dairy products. I don't think I did as a kid, but I think it's actually natural that this stuff changes over time (why? no idea really, but things like my daughter's spitting up changed, so it just seems normal). I think the biggest difference is that our kids are at the point of needing help now, whereas in a lot of other families, this whole mess will be 1 or 2 generations down the road (or some families just go the conventional med route--it kills me that a friend recognizes she has a problem with dairy, doesn't take it out, weans her kiddo early to formula, and won't connect the recurrent EIs to dairy and doesn't seem to consider the lack of breastmilk as a problem).

Tanya, my boys are great examples of this. Both had serious GI symptoms as infants. But with DS1 we believed the pediatrician who said if a 5 day trial off dairy didn't help his reflux than it was just plain old reflux and he would outgrow it. And he did. End of story (we thought). DS2 had colitis - the GI said he would outgrow it, and he did. Both seem perfectly happy and healthy now. Unless you notice that DS2 has almost never slept through the night, has chronic bad breath, discolored teeth, and (you would never know it unless you went looking) chronic anemia. And DS1 is perfectly fine, unless you notice his severe karatosis pilaris, his extreme strong-willed nature bording or OCD or oppositional defiant disorder (when he was 3 and 4, not to that degree anymore), and his periodic tummy aches. Maybe he's just a strong-willed highly intelligent child. Or maybe he never outgrew his food intolerances. But until DD came along and smacked me in the face with it, I never would have put everything together.

I have a friend like yours. She's had 3 kids with the worst reflux I've seen (and that's saying something since 2 of mine were terrible refluxers) and 1 who had recurrent EI's, speech delays, etc. But I don't think she wants to believe that it could be food intolerances.

[WuWei]

And we give them steroids, antihistamines, antacids, antibiotics, asthma meds, and antipsychotics, at age 5 now, too.


Pat

[lil_miss_understood]

Originally Posted by WuWei

And we give them steroids, antihistamines, antacids, antibiotics, asthma meds, and antipsychotics, at age 5 now, too.


Pat

Serious source of a$$ chappage in this house. When they started trying to force me to put DS1 on antipsychs etc ("or else").....

[LaurieG]

Okay Mamas. I seriously have to get to the bottom of dd's food intolerances immediately. I've lost 2 lbs in the past week since going GF and limiting my sugar. I can't add back in sugar - I can barely function through the day if I have any sugar at all. I don't even know if dd's congestion and dry skin is allergy related at all. There has been absolutely no change in her in the past week, other than the Nystatin fiasco. (BTW, the manufacturer said there is no milk or soy in the pills but it does have lactose. )

So here's what I'm thinking. I'm totally backtracking from my previous anti-TED stance. I'm thinking I'll do a TED for 1 week only. If there is still no change in her symptoms I'll do a couple of days on a rotation (maybe 4 days). If there is still no improvement or obvious difference I'm going to conclude that her symptoms are strictly a matter of poor drainage from the ear canal and go back to eating everything but milk and soy. I don't think I can commit any longer than that to a majorly restricted diet. I really cannot lose any more weight or else my health will really be an issue.

What do you think. What are the holes in my plan? I don't want to get on the other side of this and feel like I still don't have the answer.

[LaurieG]

OMG Mamas! Someone seriously needs to hit me over the head and get me to wake the h@ll up!

It just hit me that dd has been taking Synthoid every day since mid-October - basically the same time as her colds and recurrent EI's started. So I called the pharmacy and asked about the ingredients and the pharmacist told me "I don't see anything" (milk or soy derived, that is). So, not convinced, I looked online and sure enough there is lactose in the Synthroid.

The pharmacist yesterday told me the manufacturer claimed there was no "animal by-products" and no milk derivatives in the Nystatin, yet there was lactose. How can this be? Am I missing something? Lactose is clearly a milk derivative, is it not? Therefore DD could be reacting to the lactose, yes?



Thank God none of you know me IRL. I wouldn't be able to show my face. ::

[lil_miss_understood]

I hate to ask, but... I'm going to.
Is there a reason she's on Synthroid rather than Armour?
I just recently switched to Armour and I cannot tell you how much better I feel. I was on Synthroid to begin with, then switched to NatureThroid (which was an improvement but not wonderful), but when I switched to Armour, the difference was night and day.
And yes, I do think your DD could be reacting to the lactose.
Try not to feel too badly. Now that you know, is there anything you can do about it?

[tanyalynn]

I think lactose can be from other sources, but if the timing fits, I'd be very suspicious.

Selenium helps change T4 into T3, and it transfers well in breastmilk, comparable to what mom consumes. I want to throw it out as an option, not sure if you think her thyroid is well-managed or if you feel comfortable fiddling with it on your own.

[LaurieG]

Hey Jacqueline - I've heard good things about Armour. I'm on a group for moms of kids with congenital hypothyroidism (even though that isn't dd's issues exactly) and they have been discussing the armour. At the time she was diagnosed and began treatment I didn't know anything about it so I just took what the pediatric endocrinologist said was best since my focus then was get her levels to a good point ASAP to prevent any further risk of cognitive or developmental delays. Anyhow, next week is our first appointment since her dx so I'll need to look into it by then.

Tanya - thanks for the tip. Great brainstorming. Ellie's TSH was elevated but her T4 was normal so I don't think the problem is in the conversion. It seems to be more of a pituitary issue maybe? Any ideas of what to do about that? I'm nervous about doing a trial off meds b/c of the risk of cognitive issues from untreated hypothyroidism before age 3. But maybe a very short trial?

I'm keeping my options open as I really don't have any good ideas of how to solve this issue at this point. So please keep the ideas coming everyone.

[LaurieG]

Originally Posted by TanyaLopez

I think lactose can be from other sources, but if the timing fits, I'd be very suspicious.

Oh, and the timing is almost exact. She came down with her 1st cold within a few days of starting the Synthroid.

[lil_miss_understood]

Yeah, hypo in one so little is much more worrisome than in an older person, I think. They can't tell us how they're feeling, for one thing, and the possible delays from it being undermanaged would really scare me. You're a strong mom.
If T4 isn't being converted into T3 quickly enough, there will be an elevated TSH. T3 is the hormone which tells the pituatary to produce more or less TSH (which tells the thyroid to produce more T4). The beauty of Armour is that it contains both T4 and T3 (as well as some of the other thyroid hormones, iirc) and prevents the thyroid from having to do the conversion.
I don't think anyone is suggesting taking her off of meds. I'm pretty sure that would be dangerous. There *are* nutritional approaches to hypo (though things may completely change with congenital hypo and may be true with your daughter as well.. I'm no expert by far) but they can be implemented while on medication... so long as you're prepared to lower the medication as appropriate. I would probably wait until she's a little older and can communicate how she's feeling more easily.

[tanyalynn]

Originally Posted by JacquelineR

I don't think anyone is suggesting taking her off of meds. I'm pretty sure that would be dangerous. There *are* nutritional approaches to hypo (though things may completely change with congenital hypo and may be true with your daughter as well.. I'm no expert by far) but they can be implemented while on medication... so long as you're prepared to lower the medication as appropriate.

Oh I agree, I wasn't saying stop the Synthroid! I meant, while she's on her meds, if you supplement selenium, she'll get some, and if she's borderline on having enough to convert the T4 supp to T3, then she'll start getting more T3. The downside is that you should monitor how she feels and her bloodwork (they should be looking at free-T4 and free-T3, the free-T3 would be low if she's not converting well, I think adults want free-T3 in the upper third of the reference range, but I don't know if it's the same for kids) and be willing to adjust her Synthroid dosage if needed. The upside is that if she's low on selenium now, then she's not getting enough T3 which is what her cells need, and so even though there's a supplemental T4 being given, there still could be a functional thyroid deficit. If you supplement at a reasonable level (and definitions of reasonable are variable, I'm sure mine is on the high side) and she's not selenium deficient, then it shouldn't affect her thyroid levels, I don't think. I don't think it forces T4 to T3 conversion, it allows it to happen on an as-needed basis.

Zinc's also important to thyroid function, have you done the beet pee test? Though I'm not sure it's a guarantee that zinc is adequate if stomach HCl is adequate. I think it gets a bit fuzzy, but it's something to think about.

[LaurieG]

Neither of you was suggesting it, but I was.

The reason I brought up the trial off synthroid has to do with how the pediatric endo explained to me what is going on in her body. Basically she said kids with genetic disorders have a tendency to get impaired thyroid function when other things are going wrong in their bodies. So her theory with Ellie was that her food intolerances are gunking up her system and contributing to the thyroid issue. Fix the issue and get the system working better and you fix the thyroid problem. So a trial off Synthroid at some point is definitely in the cards. But the more I think about it I realize now is not the right time to try. She's more sensitive now than she was when she started of the meds, so things in her body are not in a more serene place. But if I'm right about the lactose issue then its quite a viscious cycle we're in. Synthroid = milk exposure = chronic low level reaction = heightened alert in her system = impaired thyroid function = need for more meds = more milk exposure. She's currently at the lowest dose so we can't really cut back without going off entirely (I believe they don't recommend splitting thyroid pills?). And of course there's the risks with such a little person that we've already mentioned. So now is not a good time to try it.

Anyhow, the Armour sounds promising, as does the Selenium supplement. I'm not sure if her T3 was getting checked. I would think it was but the only #'s I've been given have been TSH and T4. I have been concerned that she might not be well controlled despite the okay blood work. I wonder if the Armour has lactose?

I had some beets yesterday and no pink pee, but I don't know how much you have to eat. I was thinking about doing it again with a bigger helping.:

Thank you both for all your insight and support! I really appreciate it.

[lil_miss_understood]

Originally Posted by LaurieG

She's currently at the lowest dose so we can't really cut back without going off entirely (I believe they don't recommend splitting thyroid pills?).

I did it. My doctor was blowing smoke up my... nose... about my test results so I cut one of my pills in half and increased my meds myself. Then I took myself to my ND (and the other doctor's "superiors").
Probably not recommended though, no.

[WuWei]

This post has more info about thyroid testing, supplementation and nutrients. http://www.mothering.com/discussions...9&postcount=11

My (limited) understanding is that the blood test for thyroid function is not as accurate for *bio-available* levels of thyroid function. See this old post of mine with more info: http://www.mothering.com/discussions...&postcount=984


Pat