Stomach Issues - Do you agree worth examining further?

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twinplets
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25 Jul 2011, 12:57 pm

A little background. My son has always had stomach problems pretty much since birth. Born IUGR/SGA. Only weighed 3lbs3ozs at birth, een though he was born at 35weeks 3 days. Spent 4 weeks in NICU just trying to eat and grow. Had surgery for pyloric stenosis at 8 weeks. Continued with reflux after that until he was walking. Had constipation even as a baby. He potty trained age appropriately at 2 3/4 age. However, he still tended to be constipated. We sometimes had to resort to suppositories to get him finally have a bm. I never noticed signs that this was due to him putting of bathroom trips. It just couldn't pass and he would be so uncomfortable and cry until he finally found relief. Our ped gave us a script for Miralax (It wasn't over the counter yet then.). We gave that to him on an as needed basis when he seemed to need it. As he got older, he obviously became more independent and we would get busy, so unless he complained, we would forget to ask him. I always knew he still was having trouble because if I happened by, I knew he would sit on the toliet like a frog to get poop out sometimes and his underwear would be streaked. (sorry, tmi, I know.) Again, we treated as needed.

Last year I took him to a gastro at our children's hospital. They ran some basic bloodwork and said he wasn't celiac or had a thyroid problem and had us clean him out completely and then have him take Miralax everyday for 6 months to give his colon time to shrink back to a normal size. His dosage depended on what was needed to keep his bm soft enough to be like oatmeal all the time. He hates that stuff and no matter what we mix it in, he says he can taste it. While we had to nag and nag, he did do it for 6 months, but couldn't wait for that stopping point. His 6 month check-up was this past March. We went and the gastro basically told me to keep him on Miralax forever if I needed to as it wasn't addictive and to re potty-train him. At this visit I hear how "these kids tend to delay going to the bathroom, which is why I must force him to sit on the potty 3 times a day to re-teach him to go potty." I noticed that as a diagnosis code on his paperwork, she wrote down Aspergers. I was pretty annoyed when I saw that as I did mention it to her when I was telling her about his history, etc. that he was AS, but he only has a DX through school and it has never been on any medical paperwork. Like I said, he doesn't put off going to the bathroom unless he has been constipated awhile and is afraid it is going to be very large and rip his bum. ( He has had fissures from softball size BMs.) It was as if she decided she knew what his problem was because I said he was AS and she didn't care to look any further. Since that visit, we ask him the consistency of his poop daily and usually every few days he asks us for a dose of Miralax as he really doesn't want it to hurt. At this point, we have managed to keep him going normally, (no more having to strip and sit like a frog) and his underwear is clean. However, he does sometimes go 2-3 days before having a bm. He eats a good amount of veggies and fruit everyday. He has had raw carrots, raw spinach and apples almost everyday this summer. I have really been watching him and some days, he acts like he can't stand to sit down.

I have been researching and am now looking at having some comprehensive stool analysis done and some other tests ran. However, most of the people I can find to do that here are DAN doctors. All other doctors seem to want to poo poo digging below the surface. I am not thinking I can "cure" him. I don't even have a problem with his unique AS personality traits. However, for the last few years, he has became more irritable and annoyed, which causes him to be so much more difficult many days. On some days, he is easygoing and not constantly picking on his sisters or arguing over nothing and then other days, he is difficult over everything, even things that should make him happy. I have tried and tried to figure out the differrences in those days; however, I have never found a definitive answer. I know he is more off sensory wise when he is constipated.

I have found a pediatric's office here that apparently is becoming well known for helping kids with ADHD and ASD. She is a board certified pediatrician and had a traditional practice at one time, but then she had breast cancer, chemo and a double mastectomy and through that journey became interested in mixing natural healing with traditional medicine and changed her practice after that. Her practice will run all the same type of tests I have been looking into. The only problem is I think she has claimed to have cured some kids with ADHD and ASDs. I tend to raise my eyebrows at those type of claims.

As another note to his medical history, since he was born small for gestational age and never had any catch up growth, he started growth hormones at 4 years old. Prior to that, he was horribly small and skinny. Having been on them for 5 years, he is now a normal size (He is not huge, not even 50% on the growth charts, but he blends in now and has a good appetite.). However, the endo's basis for him starting the HGH was him being IUGR/SGA at birth and continuing with small stature. I have read the medical research his endo speaks of and know that most of these kids produce plenty of growth hormones, but in their case, the body tends to not respond well to HGH well and therefore, they must have more in order to grow as other kids. He is watched closely by the endo. He goes in every 3 months for growth checks and bloodwork. He also has bones scans done to check his bone age.

What I have often wondered is if his lack of growth and digestive issues go hand and hand in some way. The endo has always said no. I couldn't even get them to test him for celiac even though we have family members that have it, which is another reason why we pushed the gastro dooctor to do blood work. I guess if he had any type of metabolic problem, he would not be having text book growth even while taking the HGH shots.

As of now, I have an appointment with the new ped to dig deeper. We can't get in until the last of August. Since he is home all summer, I have been making a daily food log and we are recording everything he eats, if he poops and consistency, what his activites were that day and his mood. I feel like I am missing something important medically with him.



Last edited by twinplets on 25 Jul 2011, 3:57 pm, edited 1 time in total.

Bombaloo
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25 Jul 2011, 1:59 pm

Some other dietary measures you might consider if you haven't already tried them - eat P fruits, pears, prunes, plums, pineapples, (uh can't think of anymore off the top of my head). Probiotics, Kyo-dophilus (sp?) is the brand we use, they make a chewable tablet for kids that tastes like vanilla ice cream. My guys love it but I know everyone's tastes are different. Lots of yogurt with active cultures. Did you say you had him checked for lactose intolerance?

You don't necessarily need to dismiss the DAN doctors altogether. I think that regardelss of statements about curing autism, they have reported success with helping kids with digestive issues. Of course they don't really have a lot in the way of scientific testing to back up there successes, it is mostly anecdotal evidence. Still, I say if it helps your kid, take what you like (possible relief for your son's digestive issues) and leave the rest (any discussion of their ability to "cure" his AS). There is the issue of cost that you must weigh before you start down the road with the DAN doctors because I don't think it is covered by many insurance companies.

Good luck, sounds llike you have a very frustrating situation on your hands. Keeping a journal is an excellent way to determine if there are any patterns that you might be able to spot that can help him.



questor
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25 Jul 2011, 3:20 pm

Although I don't have any cures to recommend for your son's constipation, I do have some confirmation of Aspy intestinal problems. I am a 52 year old Aspy who was full term but low weight at birth--under 5 pounds. I have always had a problem with difficult bowel movements, and remember my mother sometimes giving me enemas with those water bags with tubes on them. Only once in my childhood did I force myself not to go for a day or two, but that was because of a weekend camping trip I was on. The out house was old, creepy, and infested with bugs, including spiders, so I barely sat down for tinkling, and wouldn't stay in for pooping. I also have always had an acid stomach, including some acid reflux, and was on a stomach aid for a while as a child. Some years ago I almost totally eliminated fried foods from my diet. This did help some, but stress was also contributing to my problems, so I was taking a lot of over the counter antacids. Several years ago my living situation improved--I now live alone. This reduced a lot of my stress, and I now rarely need the antacids. I still have the same bottle I moved here with! I still have bowel problems, and a colonoscopy several years ago confirmed what I had suspected for many years. I have a kink in my bowel. I usually have two or three movements a day, but it has a tough time getting past the kink, and there is a build-up of gas that adds to the problem. I also have fissures and hemorrhoids. I have tried laxatives, but they give me diarrhea and worse gas. I did have to use a stool softener for a while several years ago after cancer surgery, and again about a year and a half later for shingles, because the pain meds cauced total constipation. I was backed up for months after the cancer surgery, even though I kept eating and drinking things that usually give me diarrhea, and I was using laxatives and the stool softener. On the plus side, they caught the cancer early and I am 5 and a half years past it now without a relapse, so I am considered cured of that. I just don't know of any cures for being Aspy, or our intestinal problems. I would keep trying a natural stool softener on your son, though. If the regular dose doesn 't work, try gradually increasing the dose. Also, try having him drink more water. That does seem to help push things along for me, and moistens up the poop, but it still hurts getting past that bowel kink. Have you had your son checked for a bowel kink? Some people have kinks bad enough to really block things up, so that would be worth checking out.

Good luck with your son!



twinplets
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25 Jul 2011, 3:42 pm

One of the reasons I wanted to this doctor is she is covered by insurance. She has become very busy, so she just brought on a new doctor. He is pretty young. He just completed his pediatric residency in 2006. His bio says he has a integrative medicine certificate and a DAN clinical certificate. We actually would be seeing him as her waitlist is 6 months out now, but we can see him the end of August. They are open to doing all this testing. I found testing labs where I can do it on my own, but it would be all out of pocket. This way, the fees for the office are all covered and if she orders these tests, it makes them in network, as opposed to out of network, which will save money.

I just spoke to a Mom of one of my girl's friends. Their friend has cystic fibrosis and her older sister has had a lot of stomach issues. I mentioned this place when we met last week and it turns out she had just taken her daughters there the beginning of the summer. She was impresed overall. When I called to set up an appointment, they wanted me to release all his medical history because they said the doctor wanted to go over it prior to seeing us, as it would be impossible to go over it properly on the spot. I have to admit, I liked that as it seems I can't get one doctor to ever look at everything and look at the whole picture.

I have tried very good probiotics and never noticed any difference. I am out now, but I like all my kids to take them. I purchased a book on enzymes this winter and started him on them. He couldn't swallow them, so I found a recipe to mix them into chocolate to make candy like wafers. He takes his lunch anyway, so I would put one in his lunch and he knew to eat it first. That went well for about 2 weeks and then he forgot it one day and said something, at which point I got a phone call and letter from the pain in the butt school nurse saying I needed to have a doctor's note for him to have that at school and she had to despense it. At which point, I had to stop it until I could see if someone would provide that note, so that experiment didn't go on for long.

I don't think he he is lactose intolerant. At birth, I expressed breast milk and prior to him being diagnosed with pyloric stenosis, his ped and I switched his milk around, including soy. They may have checked then, but I can't recall for sure. It is worth asking about again though. When he was younger, he drank a lot of milk. With 5 kids, I use to buy 6 gallons a week. Then one day all my kids completely boycotted milk and almost never drink it now. He also drank yogurt then(texture issue and won't eat it.) and he does not now. My son also refuses any and all cheese products and prefers no butter.

If I had to point to anything, I would say gluten. He once wouldn't eat bread. I mean he wouldn't touch any of it unless it was crunchy like a cracker. As toddlers I think the only obvious gluten they had were crackers for snacks. His twin didn't either.. They both had reflux (Although his twin doesn't have any digestion issues.), so I thought it was a texture thing for them as they don't like most mushy foods such as mashed potatoes and still will only eat cereal dry. A few years ago, my AS son began to eat bread more. He doesn't love them and seem addicted like I do my carbs, but he did start to eat a slice of bread if he was still hungry at bedtime or he will make a peanut butter sandwhich sometimes. He isn't a huge carb eater, but he does have it frequently enough. Pasta for dinner once a week, maybe a couple of slices of bread or a hamburger bun a week, cereal or an Eggo waffle most mornings before school and snacks of goldfish, wheat thins, cheeze its, etc. We are big on grilling and my kids love meat, so we naturally have many dinners that are gluten free with only meat and veggies, but I have never cut it out for all meals.

With 5 kids, I don't want to to go gluten free unless I really know he has a sensitivity to it. My husband's brother and two of his kids are celiac. They are the only ones to eat gluten free in their house, but I am not sure we can swing that here. My son has been in the peanut free classroom in prior years. His twin was this year and they are very aware of food allergies as they do hang out with one of the peanut free kids. This is one of the reasons why I started logging his food too. He really doesn't like his stomach messed up and he wants it fixed, so he knows we are writing it all down to see if we can figure out if he might be allergic to something. Since he is almost 10, I will need his buy in if we have to make any drastic dietary changes. Overall, I think I could switch him to gluten free without too much trouble, except he would really miss eggo waffles (I tried the gluten ones on him and he hated them.), some of his favortite cereals and pizza.



Last edited by twinplets on 25 Jul 2011, 3:59 pm, edited 1 time in total.

twinplets
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25 Jul 2011, 3:54 pm

Thank you questor for your telling me you experience. I always appreciate hearing from adults as sometimes it is difficult to get a clear picture fom my son. I am happy you have been cancer free for several years now. We have lots of cancer in our family and it takes such a toll on your body. We are still using the stool softener and I have thought about looking into blockages too. I will keep the kink in mind. Thank you.



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25 Jul 2011, 4:00 pm

I was born with digestive issues myself.
Personally I think it is very important to get that celiac test and if the doctor refuses, get him to give you a good reason why not. And I mean a GOOD one. Make yourself aware of the choices for testing for celiac (there's lots of data online) and the problems that can be encountered (malabsorption of certain nutrients which can lead to slower grownth, for example) that you can encounter due to celiac. It runs in my family too, but if you have an older doctor he may not be aware there are blood tests for it now.... I had to educate my doctor regarding this. and ANY doctor can order this test, so find one who is your friend. Rememeber that the most common test is for antibodies - which means your son has to be on a diet containing a decent amount of gluten for a little while before getting the test done or the results won't be any use.

In addition, I think you're right that his behaviour is likely to be affected by his digestive state. Even if i'm not having an immediate issue with my digestion, I can always tell a digestive problem is on its way because my senses (smell and hearing) get even more sensitive than normal, and that makes me more likely to be irritable. When I am actually having a day where my digestion is frustrating me... look out.

Food diary great idea. The trick is to come up with a regular pattern of eating, then remove somethign from the regular routine (okay, five weeks without carrots starting now!) and see if any changes happen.

Warning:
Be very careful with
* Prewashed baby carrots. For some reason, i'm fine with carrots, but the prewashed baby carrots feel like I'm digesting gravel. Uhhhowwwwies.
* Cello spinach (the stuff that comes in plastic bags) Evil dihorrea maker. Regular spinach not too great for me either, especially those tomato drinks with spinach in them: causes liquid waste.
* Dehydrated garlic (powder), dehydrated onion (powder) - this is in everything from barbeque sauce and 90% of mustards to canned chicken noodle soup. It's not as horrible now, but for a few years ingesting either of these products would cause severe cramping and rectal bleeding.
* Romano cheese (often on the 6 cheese pizzas and in chef boyardee) for some reason, similar reaction as with garlic powder.

:) I'm actually kinda happy there's someone else here with digestive birth defect! I don't feel so alone anymore! :P

PS - I've always been the shortest in my family too, but didn't have the small birth or grownth issues as extreme as yours.
It IS important that you know how his bathroom habits are. I've had about ten intestinal blockages over my life that needed to be hospitalized for weeks on end: if it has been to long, don't hesitate to go to a doc and get his belly "rubbed" to be sure there isn't a serious issue.

Plus if his stool is watery for longer than a few days, and it burns on the way out, this might be an indication of a partial blockage.



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25 Jul 2011, 11:15 pm

Food issues can cause such misery, that if you have even a 50% chance of resolving a fraction of them by visiting this doctor, then why not? You aren't likely to get a solution from conventional medicine; they don't really "do" subtle food issues, so what choice do you have? You keep your skepticism hat on and hope for a lucky strike.

There are good doctors and bad doctors in every branch of medicine and alternative medicine. The DAN label doesn't change that.

I know that food diaries are supposed to be "the" way to figure things out but, to be honest, I'm totally overwhelmed by them. There are SO many ingredients in everything we eat. It seems to me that getting results from a test, even if it's accuracy rating is low, is at minimum a very helpful starting point.

You've been around here long enough that I'm sure you know the stories and know the factors (Penguin Mom, in particular, wrote some good stuff on it). I trust you to take the information you will get from these visits and evaluate it properly. I do hope this doctor can solve at least a piece of it for you. And if they can't ... it was worth a try.


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Last edited by DW_a_mom on 26 Jul 2011, 10:12 am, edited 1 time in total.

squirrelflight-77
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26 Jul 2011, 6:48 am

Try going gluten free for a few weeks and see if that helps. The blood test is NOT accurate for testing for celiac. You can definitely have celiac and have a neg test. A biopsy is the only accurate way to test or you can try the diet and see if you symtoms are alleviated. But definitely do not rule out gluten anthropology or celiac disease based on the blood test.


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twinplets
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26 Jul 2011, 7:54 am

Thanks for all the replies. I know there are some real issues with his digestion, it is just so hard to weed out who is selling false hope. I hate to be throwing out more good money. My husband isn't AS enough to be on the spectrum, but he has some traits and is very reality/fact based. He is convinced I could talk our current ped into doing these tests if they are truly not quakery. However, he also said he would rather not leave any stone unturned and he trusts my judgement. Having his brother that is the most like him personality wise find out two of his kids have celiac and then his brother testing and finding out he was even though he hadn't noticed any symptoms has helped him overcome skepticism. Although I would rather not hear a big "I told you so." :lol:

DW_a-Mom I agree. I have less religiously tracked and been aware of his eating in the past and really can't pinpoint it at all. It may be because usually he is in school and I have 5 kids I am juggling homework, etc with. Since it is slower in the summer, I thought I would try once again, but I feel strongly that I need the testing to really be able to figure it out. It is just so overwhelming to do it otherwise. As OddFiction just pointed out with garlic powder and onion powder. It would take me forever to figure somthing like that out if it was something that small that was the part of the problem. My friend found out her daughter shouldn't be eating anything with corn. She said she would have never thougt that was a big one for her.

squirrelflight - 77 From what I read, you really need to go gluten free for 6 months. Since we are getting into this doctor in one more month, I think I will hold off. It seems I would rather have gluten in his system to get more accurate testing. I have heard that the blood test isn't definitive and I have read you can still be sensitive to gluten without having celiac. I feel like will be giving it a try no matter what once we have done this testing.

Thanks for the replies. I think I wanted to run it by you guys, who I know can be pretty skeptical and hear your opinions to check my sanity. After all, I have been home with 5 kids everyday for several weeks now. :?



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26 Jul 2011, 10:18 am

Quote:
You don't necessarily need to dismiss the DAN doctors altogether. I think that regardelss of statements about curing autism, they have reported success with helping kids with digestive issues.


I have a theory that the autistic kids whose autism is supposedly 'treated' by addressing digestive may just be better able to cope now that they're feeling better, and that's why their behavior improves. I know when I'm not feeling well I tend to get withdrawn.



teximomma
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27 Jul 2011, 8:57 am

Our son, 13 y.o., was born at 35 weeks. And from his second day of life to present he has had stomach/constipation issues. While he was in NICU, we had to use a thermometer to stimulate his BM's, he is now on Miralax. Two years ago he underwent several exams to check for Celiac, Crohns and etc, and the outcome was IBS. Also, he has had trouble with reflux (getting somewhat better now) and for the first year of life, he would not spit up he would "blow" up. It got to the point that I would put comforters on the floor and at the end of the day wash/dry for the next day. As hard as it may be, get that roughage/fiber in your child.