[paganmum]

OK, I have a SN Dd. But until yesterday I had never thought that I was really in the realm of special needs until Dh and I had a conversation on our way home from a family weekend trip.

I was kind of hoping to toss some thoughts out and get some other opinions on it all.

Long story short I have one genetic condition that I inherited from my father, one I inherited from my mom, the possibility of being on spectrum (could come from either side) but we are waiting to find out what is going on with Dd1 before deciding to figure that one out for me, and everything else is possibly just fluke stuff that I've delt with for the better part of my life and well when you've delt with stuff for that long it just becomes normal in a way. KWIM?

But yesterday in talking to my brother (who is basically in the same exact boat I am in) about how I had found a nonsurgical treatment for the condition we inherited from our dad and that I thought he should look into in and finally officially get himself diagnosed (I don't pester him about it I just let him know when I find anything new that he might find interesting) he mentioned some reading that he had done about the condition and how it is now being thought that it might be caused by a missing gene that causes an adverse reaction to the enzymes in the gut. The condition is actually diagnose via a scope of the gut and a genetic test that looks for a couple of mutated genes and one of them is some times present. Which got me to thinking could this be something that could be connected (I'm actually going to be bringing these thoughts up to the ubber specialist when I get in to see him as I've suddenly become fascinated by the whole thing) or related to other gut issues where the diet needs to be looked at? I am not going to claim to be a specialist or anything at all, but having what I do and reading what I have of what some of the mom's on this list have gone through with their poor kids in trying to figure out what is going on and what I have seen when it comes to in dietary changes effecting or improving (like what I have seen in my Dd1 with some of her issues) it just seems like maybe the issue that is being seen and thought to be a big problem is actually just a secondary issue caused by something thought to be smaller and not as big an issue that could possibly be helped or fixed via diet.

Before I get to rambling anymore I wanted to double check some information to make sure that I'm not getting things mixed up. I'm hoping to try and track down some links for further reading for myself and to pass on to dh.

So some questions.....

1. If I'm remembering correctly there are gut issues that are caused by genetic defects (sorry that's the best term I could think of at the moment)? Are there any good sites for reading up on them?

2. I think I remember reading that there was the possibility of a connection between gut issues and possibly being on spectrum. Am I remembering that correctly? I know that things like the feingold diet have been brought up about it and a restricted diet of sorts has been helping my Dd1 with some of her issues.

3. Food sensitivities and conditions like eczema and psoriasis are thought to have connections, if I've heard correctly, right? If my memory serves a milk allergy or sensitivity comes to mind on that subject?

Basically all three of those issues come into play on one side of the family and some of them on the other so I am trying to figure out if we should try and delve deeper to see if there is anything hidden that hasn't been caught due to the seemingly bigger issues. Dh is my partner in about everything medical when it comes to the family so I'd like to get him reading anything I do. He was quite intrigued by what we talked about yesterday on the way home. I'm just hoping I was remembering the basics on everything correctly.

We are basically curious if there might be something that due to the difference in medical knowledge when I as growing up and now that we might need to look into testing for to cover the bases. If there is something we need to changed diet wise for me we would be doing it for the whole family the same as it is for the dietary changes we have been working on for Dd1 apply to everyone in the house. We aren't going to know if any of the kids have my gut issues officially until they hit puberty unless they start showing some of the secondary issues that I have. So our thought is that every little thing that we can do now to help improve the odds for them is worth it.

Any thoughts?

TIA

 

[sbgrace]

Well, it is really hard for me to be specific or give you concrete links or anything without more concrete information about what you are dealing with (and I so understand why you would want to be un-specific on a public forum). So I don't feel that I am a ton of help. I have seen a lot of research on various gut things and bacteria (and biofilms in some cases) affecting all kinds of areas. I'm not eager to attribute all of it to gut issues, though, as obviously other things tie in. For example, my son has suspected mitochondrial disease. That disease affects all kinds of body systems and many people with mito disease have gut issues. In most of our cases when we feel rotten it affects all areas of our lives. When my sons gut is in turmoil he is much more disconnected and stimmy (same if he is not getting good sleep...point is all is entertwined). I think this is because he feels poorly. So a mitochondrial patient has issues with constipation or reflux and that certainly affects them--but the core issue is the genetic issue--mito disease--and not the gut issue. On the other hand, I do believe that gut is a major player and even cause of some issues. For example, some children with autism have problems with bacteria such as C. Diff.. Some, not all and in I think all cases of autism there are genetic factors as well. I use autism and mito as an example just because we're dealing with that here. I'll try to answer your questions with my opinons but, again, without more specifics (and I understand not being specific) I can't really say about your situation.

1. If I'm remembering correctly there are gut issues that are caused by genetic defects (sorry that's the best term I could think of at the moment)? Are there any good sites for reading up on them? So yes there are gut issues cased by genetic defects (mitochondrial for example).

2. I think I remember reading that there was the possibility of a connection between gut issues and possibly being on spectrum. Am I remembering that correctly? I know that things like the feingold diet have been brought up about it and a restricted diet of sorts has been helping my Dd1 with some of her issues. Yes, there are connections between gut issues and being on the spectrum for some individuals. This person has a lot of stuff about the range of genetic influences and autism particularly. http://www.ch3nutrigenomics.com/phpBB2/welcome.html I'm not sold on her for my son (I'm not a cure or chelation person and she is way to expensive for me but I do find things about diet and genetics and gut interplaying interesting) Some spectrum kids (esp. those with hyperactive ADHD struggles) might benefit from Feingold. Feingold isn't focused especially on gut health I don't think but getting all the additives and junk out would definitely help. Similarly, gluten/casein free or even SCD diet are used for autism. GF/CF doesn't really address gut either imo. though research shows eliminating gluten and casein can reduce autistic symptoms in the majority of kids. My son has been gf/cf and then SCD for almost two years...gf/cf doesn't seem to affect him and SCD was a disaster for him metabolically. However, I do think both of those help many. SCD can help heal the gut though I wouldn't do it nut heavy personally as nuts are very difficult to digest. SCD is hard without nuts. Both cases (all cases) I think keys to gut health are easy to digest foods, enzymes, and probiotics. I love culturelle and florastor because both have great research behind them. Both do well on C. Diff. bacteria mentioned above as well.

3. Food sensitivities and conditions like eczema and psoriasis are thought to have connections, if I've heard correctly, right? If my memory serves a milk allergy or sensitivity comes to mind on that subject?
Yes--eczema is often an allergy sign (actual allergy). In young kids especially milk is often a culprit in eczema. In older children it can but dust mites, other environmental allergies, and other food. Milk is allergenic but gluten may be a bigger culprit--especially with those who are older. Gluten is tough for anyone to digest (even non-celiacs) and there is a lot of undx. celiac out there they are finding now.

I hope that helps some?

 

[paganmum]

Thank you very much for your thoughts. They have helped in turn.

I was diagnosed with FAP/GS (familial adonal polyposis sp? specifically the Gardner's syndrome variant) my kids may or may not have it. I'm hoping they don't but only time will tell.

I completely agree with you that something that may work for one person isn't going to always help another. For Dd1 and her possibly being on spectrum (as well as my possibly being on spectrum) diet and therapy in combination seem to do the best when going at the same time but still they don't cover *everything* nor are they a cure. KWIM? Dh and I firmly believe that there is something genetic going on but at the same time there seem to be other factors that help or hinder progress.

So far *everyone* in the house (Dh included) have eczema to one extent or another. I also have psoriasis, and it is looking like Ds might have it as well. At least my older two are sensitive to food colorings, Dd1 is also sensitive to the various additives and preservatives, and all three, plus Dh are sensitive to sugar for the kids is sends them flying and it puts Dh to sleep. I won't get into the sensory issues with Dd1 (dx'ed) and Ds (not Dx'ed since they don't keep him from functioning in daily life other then eating). So, we were finding it interesting that there were these possible connections and that at least in the one side of my family that all three of these conditions travel together. I think that might clarify how our train of thought came to be. Thank you for the links I will be taking a look at them.

 

[LauraLoo]

Although not exactly what you are dealing with in terms of medical issues, I recently went through a same train of thought regarding my ds.

For years ds has had SID/DSI issues which were dx'd at 3.5 years old. He also has a lot of traits that look like autism and ADHD, but aren't. This has always bothered me, which is probably the understatement of the year. Finally, I started to really think about issues that run in my family - extreme and bizare reactions to medications, alcoholism, allergies and sensory issues. Did some research on the internet (again, an understatement because I really, really had to dig) and I took ds off an allergy med. that he had been taking since he was 2.5 years old. In less than 2 days, he was a different kid. Still a little quirky, but his sensory issues, anxiety, sleeplessness, and moodiness have greatly diminished. It's like he's a whole lot happier and more at ease.

I had him on the allergy med because he has a single significant environmental allergy (dust,) an anaphylatic peanut/tree nut allergy and I suffered from childhood asthma, so I thought this would be a good preventative measure against accidental exposure to nuts as well as keeping him from developing asthma. But what is really, really interesting to me is that I've seen various professionals over the last 3 years to address his various issues, and NO ONE suggested that it could be his allergy med. that was the culprit. It's the ONLY med. that he took. But after the digging and digging on the internet, it turns out that he isn't alone. It's rare, but apparently there are many others that are affected exactly like he is. I'm just glad that I didn't just continue down the path of ....this is the way he is. You know how mommy intuition works....something wasn't right. I'm just glad that I started to think about family history and how it might be playing out with ds.