A Great Start to the New Year

And I mean that in the most facetious manner possible. When New Year's came around this year I was not in the mood for celebrating or making new resolutions. To me it was just another day and I want to keep it that way.

Anyway, I have been dealing with a lot of things lately and really it wasn't getting me down until this week. First, I found out that I had to have a crown done on a tooth. Something I had been putting off for a year but now was being told if I don't, I could lose my tooth altogether. Second, I have been scrambling to change my son's diet to gluten free and dairy free. I have been able to do it for the most part but I am tired. I have had to do quite a bit of running around to several stores as one store may have only a few of the items. It also requires me to bake two loaves a bread a week + cookies, muffins and etc. so that he has things to eat throughout the week. By the way, I finally found after much searching and trial and error , a brand called Authentic Foods All Purpose Bread Mix. It is something my kid likes and will eat without complaining- finally. Last but not least, after 3 long months, my dad got his diagnosis of Pulmonary Fibrosis- the aggressive kind and most likely the one that is inherited which means I could get it and my kids could get it. I have been researching my dad's illness and it is depressing. Not much on it as far as treatment goes and about 88% of the people do not make it past 3-6 years. Even the alternative health treatments are lacking for this particular illness. It is not good at all.

Coupled with that is my kid who blames me for everything that he doesn't want to do and a husband,who has not lifted a finger to help, since my child has gotten sick. My husband doesn't believe that diet will help our boy even though it has made a tremendous difference and he doesn't believe in any of the alternative methods. Well this week, I had finally had enough and let it be known that everyone needs to step up and do their part. I pretty much have been the sole enforcer of the diet, the discipline and everything else in the household and I am not going to take it anymore!

180 Degrees

I don't know why this happens but every time I post about my son's improvement, something occurs and wipes out all the progress that has been made.

I just ordered the cake for his birthday party too and had to postpone it.

Last weekend, he was not feeling well. We had gone over to see my older son to celebrate his birthday at college. On the way home, I knew Andy was sick as his eyes were glazed over and he was coughing. That was on Saturday, today 4 days later, he is having massive D, terrible cramps and gas pains. Just about as bad as he was when he began his IBS flare-up back in June. He hasn't been in school all week.

It could be that he has the flu bug and that is wreaking havoc on him but I am not sure. He's been eating regular food the last 2-3 weeks without a problem and who knows, maybe that has finally caught up with him and his GI system just couldn't handle it anymore.

This is very discouraging but I will go back to the IBS diet and keep him on the probiotics, calcium and digestive enzymes.
His party for this weekend will have to be delayed until next week. Poor guy!

Are Vaccinations Safe?

There is a huge debate on whether or not vaccinations are safe for our children. In the past, I would have naively said yes, they are. My kids have had numerous vaccines without any visible effects. However, this past year my 13 year old child was told that he needed the DPT, Hepatitis B, and Meningococcal vaccines. Within two days of receiving these shots, he had such severe abdominal pain that we had to take him to the ER. It continued off and on for the last 4 months . He cannot eat many foods, he is dairy intolerant, he had lost 12 lbs and he has had continuous problems with diarrhea. I had to put him on high calorie dairy free smoothies for the last 2 months. He has now gained back about 6 of those pounds but it's a struggle to keep the weight on. I have changed his entire diet to a low fat one, put him on calcium caltrate to control his diarrhea, digestive advantage for ibs probiotics for the gas and cramping, b complex vitamins for the cramping and digestive enzymes. He is doing much better now but his problem has been a life altering one and I still feel in my gut that the vaccinations played a part in all of this somehow.

I am trying to find information on vaccine reactions in teen-agers. I have found a lot on autism and younger children. Lately there has been information on Gardasil and Meningococcal vaccines. It seems when girls get those two vaccines together there is a much great risk of getting Guillain-Barre Syndrome (inflammation of the brain and spinal chord which can damage nerves and result in possibly paralysis).

My son was given 3 vaccines together and who the heck knows what kind of havoc that has wreaked on his system.

It angers me that the medical establishment will not acknowledge that there is a problem here.

In 1900, children received 1 vaccination for small pox. Today, they receive 20 vaccinations and more. ADHD, autism, asthma have dramatically increased. Is it because of vaccines? I don't know but vaccines are suspect.

All I can say is that if you are planning on having your child vaccinated, do the research and then make up your own mind on what is the best course of action to take with your child.

Walking the Fine Line

Things have not been going well for Andy. His D came back yesterday and today. I am getting a little concerned as he can't afford much more weight loss. He is deathly afraid of eating now as he feels everything is setting off his symptoms. I have upped his calcium to 900 mg and will probably have to go to 1200 today. His D was a little better this morning but still present. I am praying the calcium is going to do its job and keep everything in check. Everyday, I don't know what I am going to have to wake up to and it's getting stressful. I can't even imagine what Andy is having to deal with. I finally got a chance to listen to the audio ibs program by Michael Mahoney cds. I have been making Andy listen to them daily. I listened to one session and have to say it was very relaxing and I think I am going to have to do it too just so I can keep my anxieties under control.

This set back has been a real downer. I thought we had found the combination that worked. I still think it's there but I am going to have to fine tune it some more. I feel like I am walking this fine line to keep calories on him but not upset the IBS at the same time. Now with the migraine and school thrown at him, everything has been turned upside down. This has been one of the most challenging things I ever have had to face and I am not even the one who has the IBS. So I can't imagine how it has been for my son.

Not Another Problem!

Tomorrow is the first day of school and Andy was doing fine and getting ready for the big day. Then he started to develop terrible eye pain. He couldn't see and within a half an hour he was having massive head pain. I can't believe it! What else can go wrong! I do believe he is having a migraine. My older son started about this time and now my youngest son has it too.

I am thinking the 21 bananas a week that have been going into the high calorie smoothies may be suspect. It's the one thing I thought he could tolerate and now I am going to have to find something else that he can have. This is maddening. He really needs the calories and I don't think he can handle the other fruits but I am going to have to try them.

I have a ton of errands to do too. I just called my husband and he is coming home for a couple of hours to take care of Andy so that I can get these other things done. It's nice that my husband is the boss and can come and go as he needs.

I hope Andy comes out of it in a few hours. If it lasts until tomorrow, he will have to miss the first day of school. I may have to put him on cyproheptadine, an antihistamine that my older son took and it controlled his migraines really well.

I was just reading that there is a connection between the IBS and migraines. Guess I will have to do more research on that.

Catch 22

Came back from the hospital and not much new to report. My son had 7 more vials of blood taken and the next test will be a CT scan in 3 weeks.

Had my questions addressed by the nurse practitioner. Still have not gotten to see a GI doctor. She pretty much said that they don't believe that yeast overgrowth problems exists or that the thimerosal mercury still in some vaccines ( my son got a meningicoccal vaccine + 2 other vaccines and the severe gastro problems started within 48 hours of the shots) can cause gastro- intestinal problems, at least from the many cases that she has looked at.

She thought from the tests done so far, it wasn't pointing toward Crohns or Ulcerative Colitis, also didn't look like an ulcer but that one is a little tricky. She also told us that even though my son is better off gluten, he needs to stay on it so that they can see if it is damaging his gut. That was bad news because school will be starting in a few weeks and we have been doing everything to get him functional for that.

She told me that the digestive enzymes we had him on, the chewable kind, were not worth anything because they denature in the gut rendering them totally useless. Only the ones with the very thick coating like the prescription ones used for Cystic Fibrosis patients are effective. I need to do more research on the enzymes as everything I have seen to date- the chewable, capsule, pill form over- the -counter ones have been effective in many, many people.

The immediate concern was that my son has dropped 12 lbs in 7 weeks. A lot of it due to the fact that he just can't tolerate food and has developed an aversion to eating which I don't blame him.
She wanted me to put him on high calorie smoothies, the problem is that almost all recipes she gave me require milk and Carnation instant breakfast. He can't tolerate soy milk either. I'm going to have to revamp the recipes with rice ice cream and rice milk. I am hoping he can tolerate that.


Now it is just a waiting game. I really don't know what to think as yes, I want an answer but I don't want my child to have some serious disease . I also don't want my child to have IBS and have to possibly face a life of never knowing when the next D attack will hit, of having to map out every bathroom location, not being able to eat the food he loves, not being able to go on camping trips or travel for fear of an attack on the plane, bus, car, whatever. This doesn't even address the impact of working or going to school. I don't want him to have any of it, I just want him to be well!

The Challenges of Eating Out

One more day now until our hospital appointment. My son had another attack of D, a few days ago. It was related to the banana bread I made for him (recipe was from the IBS cookbook). It had reduced fat in it and he was tolerating it well until he decided to eat it late at night and first thing in the morning. Anyway, it was a setback but he is doing OK now.

This condition, whatever it is, has been a really difficult challenge to be sure. We haven't been able to eat out very much because I have found that most restaurants do not have anything on the menu that he can have. I guess I need to find out if people just don't go out or if there are special tips to use when they do eat out. I took my son to Quiznos and ordered him the oven roasted sub on white bread with nothing else and he brought his soy cheese from home and put that on it. No problem afterwards so I was relieved.

One of my friends told me in passing that there was a gluten-free dairy-free bakery in her town and I was quite ecstatic to hear that. I went and checked it out and sure enough the bakery had fresh baked breads and cookies and muffins. The prices were very steep (but definitely worth it), $9.00 for a loaf of bread and $15.00 for a half dozen cookies and muffins. The baker told me the challenges of offering gluten-free and dairy-free items. It has taken her years to perfect her recipes just because gluten free breads do not behave like regular breads. She said that every batch even from the same flour will not come out the same way. But she is at the point now where she can just look at it and tell how much water it needs or whatever. Her deli restaurant offers food for the gluten dairy intolerant and for those that don't suffer from these restrictions. She said she really can't make money doing this but her rewards are helping those people who can't eat anything. She even makes custom baked goods for people with certain allergies. I told her she was doing a great thing and I really was grateful to have found her.

I went to Fred Meyer and found a decent selection of health foods including soy pudding and soy
yogurt without dairy and gluten in it. Also rice milk and rice ice cream. I bought it all.

I decided to try the gluten- free diet to see if that would help. So far my son has been feeling better in the mornings so maybe it is making a little bit of a difference. Guess time will tell.

Anger can be a good thing

Well, I still do not have an appointment at the hospital. Twelve calls later and nothing. I probably should have driven the 3 hours up there and just demanded to be seen. It would have been a lot easier and less of a headache.

It's been two weeks of mix-ups and screw-ups. I was on the phone reading the riot act to my doctor's office because none of their faxes with the latest test results made it to the hospital. They said it probably got lost in cyber space but every single time! I think more likely someone just plain did not send it! On the hospital end of it, they finally got the fax I sent of the test results but initially they said they did not. It was only after I asked them to go through everything they did get from my doctor's office, the insurance company that they found it.

So now 3 days later, nothing! They sent it to the Nurse Practitioner but she hasn't responded. I called yesterday and today and they said the NP has not responded to her email. So I asked, "Can't you go back and ask her if she got it! The answer was No, because we are not in the same building.

Everybody up there is divided into different buildings and nobody sees anybody. They all communicate by email or by some electronic means. They probably have never seen the person on the other end of their emails. Maybe this is the way to cut costs and make things more efficient but for the patient, it totally sucks! The left hand does not know what the right hand is doing up there and they can't find out either. It just makes my blood boil!

I called my doctor's office again and demanded the doctor get on the hospital. I am tired of dealing with all this crap and I am not going to be nice about it anymore.

Healthcare has become strictly a business. I was just talking to a friend who has worked in the hospital labs and she was saying the patient is now the client and she has been seeing this coming for the last 10 years. So true. Just in the past few months I have noticed that it's like my son and I are numbers and not people. It doesn't matter if you have a life threatening condition and need to be seen by the doctor. If their office is full up, you just have to wait until the next day or two to get in. They don't care about your problem, they just want to run things efficiently and make money. It is very scary!

Thanks goodness for bette jo of bettejo bead creations , tonia from the family jewels and ibs group.org. They have given me invaluable information and support that has helped my son and so far he is doing much better. He has dropped some more weight but it has slowed considerably since he is able to eat and his D is still under control . Anyway the saga continues...

Western modern medicine and chronic illness do not go hand in hand

Finally got in to see the doctor. Usually go to see the PA and she is much more knowledgeable and will take the time to talk with you than the doctor. Anyway, I was totally unimpressed. He basically told me that he didn't know anything about my son's condition and he wasn't going to try. Said I shouldn't be calling it IBS yet as it was too premature. Also that kids don't have what my son has and he's never seen anything like it. My son dropped 7 lbs in 3 weeks and he couldn't advise me on what I should be doing to put more weight on him. He is going to send us to a specialist 3 hours away but it will take months to get in. He did say yeast showed up in one of my son's test but he had no idea what significance that was. I asked about Candida and he couldn't tell me anything about it. I just rolled my eyes. My poor son came out of there thinking there was no hope for him. I told him to just ignore what the doctor said. I didn't want to see this guy in the first place but the other doctor and PA were on vacation so I didn't have a choice. I am looking into the Candida aspect as it can give IBS symptoms too but it seems like the medical establishment doesn't believe that exists either. I am so mad I could spit. I am thinking of looking up a naturopath. They could get a handle on this a lot better than any "physician" can.