Dr, Dr and more Drs...

We have spent a LOT of time in waiting rooms lately. I started documenting all the time we spend there since I feel like its the only place we go anymore. Me and Sydney in the waiting room.









The ceiling was pretty fun in the Kaiser in Fontana so I tried to take a photo.

So to explain a little Sydney has had a ton of "potty and tummy" issues for the last 8 months maybe even longer. So she literally can't hold it or won't go for days (4 more more days.) I knew something was going on but couldn't figure it out so after far too many Drs appointments with no answers I asked to see a GI specialist. So we finally got in at had to go three times( missed a lot of school) but got in for special testing. To check that it's not dairy, which I was 99% sure it wasn't but the Dr informed me it would give us lots of answers so we went ahead and did it. Sydney had to drink 8oz of "lactose dairy drink" then breath into a tube every hour.

Here we are in the waiting room coloring at 8:45am after no food for 13 hours and doing ok.


Here we are just before the test started and she had to drink the yucky drink.


Here we are not loving life after and hour. Already bored and not loving it.



She found a toy which she played with for at least 20 minutes.


Bored again and she had moved on to a game on the IPad. She was less than impressed with the movie I had and two shows she would have rather watched netflix but no Internet.


I finally found a game to keep her attention for more than 3 minutes..... This was about and hour and a half into the test and she was grumpy, hungry and tired.


Getting some needed energy out on another toy we found. It's very very hard to keep a 6 year old in a hospital bed with no food for hours.


We got creative and made up games and this was about the only time Sydney smiled the whole 3 hours we were there.


Pouting when Sydney realized she was missing lunch and playtime at school. She got really upset and almost started crying. She really wanted to leave and we had a whole hour left of the test. It was so heartbreaking I almost took her and walked out then. Looking back and with what I know now I really should have but I'll go into that later.


So an entire hour later and no more than two words out of her and almost no movement. She was so sad lying there with arms crossed.


She had her finally breathing test and then out to have some blood work and it was the worst experience ever! The tech was horrible and made her cry and she had to give 8 vials of blood. That's so much and after she hasn't eaten in 16 hours she nearly passed out. We walked out both crying and after walking 5 feet she felt funny and wiggly so we sat down right there in the middle of the walkway outside the lab. She nearly passed out and finally after what felt like hours but was only 20 minutes. She felt a little better and we left. I think it felt longer because I saw sooooo many hospital staff walk around us and get upset with us. Hello a 6 year old is about to pass out from lack of blood sorry to make you step a foot to the side to go around her. Needless to say we will never go back to Kaiser of Fontana.

So we headed to the nearest food, Wendy's a block away and I let her get what ever she wanted. A medium frosty, baked potato, chicken nuggets and French fries. It seemed like a lot but she ate every bite, I guess she was making up for the fasting from the last 16 hours.

We made a special stop at Trader Joes on the way home for some fun and Gluten Free items since I still had a sinking suspicion this was part of the issue.

Here is an entire gluten free display. We bought almost everything on it and let me say Trader Joes gluten free brownie mix is amazing. You would never know.


After Trader Joes there was something Sydney just had to have so we stopped at Ralph's. Well come to find out the "fancy" Ralph's we went to had a huge selection of gluten free items. I was sooooo excited and some was even on sale.



Gluten free cookies and brownies and snack bars. So we picked up a few more items like chex (gluten free) and milk then headed home. I noticed a redish rash



You can sort of see it herein her arm, the sunburnish redness was actually tiny red dots. I took a picture but none of the Drs ever figured out what caused it.

So back to our crazy shopping spree. Here it the whole gluten free spread when we got home. Almost $200 in food but if it helped Sydney feel better I would have payed three times as much.


So you might wonder what it is that causes the issues and have we resolved them. Well after a million, Ok only about 25 phone calls I didn't get very far at all. We found out it wasn't dairy. The test came back negative and so dairy is not causing the issues. We begged, pleaded and finally got a dermatologist to read us her blood test results. Incase it was related to the red spots she got a few more times. The dr did inform us she had a border line allergy to eggs. So its rated on a scale 0-5 and a 2 or higher( I believe) is considered and allergy and Sydney got a 1.98 so it comes back no issue but the test before she had a 3. Plus she hadn't eaten eggs in weeks so I am going with my gut we should probably still avoid it.

Then we fianlly get to talk to the Gi the best part and I quote from the GI Dr " she's not gluten intolerant but she had a slightly higher result for wheat than normal" well what dose the mean ...... I would guess I should avoid wheat. The dr says...." that's completely different from gluten so don't worry and it's a low reading don't worry about it" what???? So now I'm really confused, the Dr didn't give me any help with what it was or why the wheat result was higher. So back to dermatology, they don't know what is causing the spots but it's probably not the wheat or food but she said she should avoid wheat and see if it helpes with the potty issues. So a GI dr that that Is not talking about allergies or food issues and a dermatologist giving me food advice but no help with the skin issues. Then Sydney's primary Dr just keeps says its probably nothing she will grow out of it.

At this point I am over all of them. So to sum it all up hundreds of dollars in copays, far too many appointments and far far too many blood tests amd missed school for Sydney and we have zero answers. So where do I go from here.

A new Dr!!!!!

I have recently changed Sydney's Dr to my Drs office and unfortunately she got bronchitis and I've had a horrible cough for weeks so we have taken time of dealing with it and trying to get better but hopefully next week we can start over get some real answers.

On a side note we have cut 90% of wheat and gluten out of Sydney's diet and she's has gotten 75% better a few tummy aches but nothing like before and generally it's after a large wheat intake like chicken nuggets at school or regular pasta. So I'm going with my gut and even if a test isn't going to prove Sydney has a wheat issue if avoiding it makes her feel better than thats it we are not going to eat it.

So here is where I open it up for advice. Clearly the Drs aren't helping so I'll take just about any advice right now. Sydney's major issue is she goes from constipation to diareaha. As well as not being able to hold it when she needs to go to the bathroom. So it seems this will go on unanswered for now but hopefully sometime soon we will have an answer.

- Christa