So - Bug has now been off of dairy since last Thursday night. She has not had a stomach ache since waking up with one Friday morning. I find this very interesting, although I have to wait longer to be 100% sure they are gone. Of course, she was off dairy all summer and also didn't have stomach aches. Which takes us back to the original question I had walking into our allergy tests this fall. Is she allergic to dairy, or, is she allergic to something else that is getting eliminated when the dairy is removed????? Unfortunately my awesome allergist left a few weeks before our tests, and the new allergy Doctor was horrible. They did not test her for even half of the most common allergies, even though I requested they test for any and everything common. I could go on and on about why the visit was so horrible, but my blood pressure is rising just thinking back on the experience. It included lying to Bug and I about shots being given during the test, pinning her down while she screamed, not timing the test properly, and not talking to me like an adult parent who knows something is wrong with their child. It was a *horrible* experience, and I will not *EVER* take my daughter there for allergy visits again. As much as I love the University of Iowa Children's Hospital I have no faith or respect for allergy department now that Dr. Abu-Hassan is gone.

But anyway, back to my main point. I do not trust the testing that was done, especially since the timing was off (the rushed it due to Bugs horrific non-stop screaming) and the milk reacted right after the nurse left the room. The reaction was raised, really red, and large. She stuck her head in and I pointed out, and she said she'd ask the head nurse to come check on it. No one came for almost a 1/2 hour, and it was the allergist. He told me it "didn't count" because the reaction came after the testing time. He refused to listen to anything I asked or said, and told me she's probably just lactose intolerant. So, in light of the fact that lactaid doesn't seem to do a thing for Bug, that milk seems to be causing/aggravating her problems, I have to sit here and question if that test was really right or not.

I suppose it doesn't matter, except it would provide me with a little closure and a better idea of how seriously to take the dairy stuff. Regardless of if it's lactose intolerance, an allergy, or just a sensitivity if it makes her feel bad we should avoid it.

So, time will tell. I am going to play around and try adding a couple of foods back at a time and see if anything happens. In the meantime as I write this my daughter came down with a stomach ache. It started 1/2 hour ago when she took 3 bites of a homemade cheeseburger. That was my test tonight - because supposedly that small of an amount of lactose should not be a problem if it's lactose intolerance...

Now - on to the GREAT news! I cannot say GREAT enough either. GREAT GREAT GREAT AWESOME AMAZING news! Can you handle it???????????????? I almost couldn't!

Bug saw the dentist today for the first time in over a year. The last visit she was screaming and crying and it was awful. As those of you who have been following this blog for awhile know, she has been in therapy for over a year now to deal with medical anxiety. Apparently it is working! She requested to have a dental appointment when her brother was getting his teeth cleaned a few weeks ago. Today was the day - and we made a deal before she went in that if she didn't get upset during the appointment we could skip the fluoride. (she had told me that was the worse part - and I figured that skipping that was not a big deal if it meant getting her teeth cleaned and also a positive experience under her belt) Well, when she came out not only was she smiling and happy, but she had done x-rays, a cleaning, dental examine, and FLUORIDE! The hygienist had asked her if she would allow her to brush it on her teeth instead of a tray, and Bug agreed. I was in shock, and I swear to you, I almost started crying when the hygienist came out and told me.

To many this probably sounds silly. To those of you who have medical anxiety or a child with it you'll understand how big of a deal this is. Bug is always going to be seeing Doctors for various reasons as she grows-up. It's part of the Ehlers-Danlos syndrome. She'll have the geneticist, her OT, the GI, allergist, and if/when other things happen PT or other specialists. She doesn't have the luxury of being like other kids. She can't afford to be afraid of the Doctors who are there to help her. That's why we've made the trek to Iowa City for a therapist who deals with this type of anxiety. Today I really saw that paying off. Bug seemed to be anxiety free and happy during the visit. I am thankful, relieved, and proud all at once. In fact, I might even be glowing. Can you see it??? hahahaha

We go to therapy this week and she said she can't wait to share her experience - neither can I!

You know, it never fails that I think we are past something and there it comes again! :) We have been battling stomach problems again for almost three weeks now. I'm at the point where I feel like quitting again. I know, I know, you've read that before. I burn out, take a break, read like crazy, get hopeful, and then crash again. No, I'm not bi-polar. I'm just a Mom who wants to have her daughter simply feel "good" on a regular basis, and it just doesn't ever seem to work for long. Thank you Ehlers-Danlos Syndrome. You suck.

So, let me stop whining for a moment and try to sort out what's been going on. Sometime not that long after my happy post about how great Bug was doing the stomach aches started again. Now, changes that have happened prior to them starting again are as follows:

1) We saw the GI and cut her Prilosec in half
2) We started to reintroduce dairy, limiting her to only a milk at school each day - and a lactaid with that milk
3) It got cold (hey, things do seem to be worse with her in the winters - just read back in this blog and you'll see it too!)
4) We started eating more processed foods again, since we were no longer worried about dairy
5) She started having a sugar-free juice at lunch instead of milk

Ok, so those are the changes. Now, the first thing we did after the stomach aches returned is get rid of the sugar-free juice. As it turns out it was made with Splenda, which can cause horrible side effects INCLUDING stomach pain. Google it - I was shocked when I called the GI and she told me about it.

At first I thought it solved the problem, but it's back. To complicate things the flu is going around and anyone who has a kid with stomach problems will understand me when I say I have no idea which is which until the puking begins. However, there are strains of the flu that don't cause puking.... Anyway, over Thanksgiving I thought she had the flu. Stomach pains for 5 days, not feeling like doing anything because the pains were so bad. She had a couple of OK days, and then BAM, we are back to stomach pains again!!!

I am at a loss here. Starting tomorrow I'm pulling her off of dairy again to see if we can get this thing to stop. That causes a chain reaction because it means no mac and cheese or other processed foods. (which I know is a good thing, but gosh darn it, convenience really saves me sometimes!) I guess I'll give that a week and then call the GI if there is no improvement. Something I really don't want to have to do - I want my daughter better, not on more meds!

Anyway, I'm going to stop complaining about that now. :) Everything else is going ok with her right now. We didn't have our IEP meeting yet as school got dismissed early that day for a huge winter storm. We are now having it next week. I still don't know if we are rewriting the IEP for next year or moving on to a health plan, but that's ok, I am still comfortable with either one.

I think that's it for tonight - tomorrow my 12 year old non-ehlers-danlos child is getting his braces. I need to rest up and get myself prepared to experience this milestone with him! :)

In less than a month we'll be having Bug's yearly staffing. Usually by now I'm combing the internet searching for answers to problems we're having or trying to find new ideas of things to try that might be helpful for her. However, this time not only am I sitting back just killing time, but I actually did something wonderful yesterday. I spoke to Bug's occupational therapist from the school and asked her directly where we were at. I said "please tell me honestly how you feel, I will not be upset if you don't think we need serviced any longer." If you have ever dealt with "the system" before, you know how risky a statement like this can be!

I think I took her a bit by surprise. She replied to me that she could continue to work with Bug on the Dragon Naturally Speaking, but beyond that she didn't see a need for OT services. I agree with this, and see it as a good thing! I told her I was perfectly happy to continue the Dragon at home on our own (especially since we are luckily not at point where Bug needs it). So - she is going to check with the Physical Therapist and see where Bug is with her. If she still needs servicing, we'll continue the IEP. If she does not, then we'll put together a health plan that addresses her medical needs and then they will keep an eye on her in case anything crops up.

I suspect if I had just shown-up for the meeting that the servicing and IEP would have just continued. But I honestly don't want to waste resources we don't need. I see it as a good thing if Bug is at a point where we can move beyond the IEP - as long as we are still able to have her medical needs met. I love her school and feel comfortable at this point whichever way it goes.

So what does this mean? It means that Bug is doing well! Yes, we are still having bumps in the road, but overall this is the best school year that she has had to date. She is keeping up with her peers, not needing a bunch of snacks or breaks, and hasn't missed much school at all. I hope that continues all winter! LOL We are not due back at the GI until near the end of school, we don't see the geneticist this year, her ring splints are still fitting great - so no need to see the hospital OT, we haven't needed any phyical therapy at the hospital, her allergies and asthma are under control, and while she is still seeing a therapist to deal with the medical anxiety - she is making lots of progress. All wonderful news!

Of course, we're not "home free", but I am so thankful that we seem to have gotten to a point where things are under control. The accomodations at school (special chair, beanbag for resting, grips for writing and coloring) help, her tummy hasn't acted up even though we reduced her medications, and her energy levels are up. We are still struggling a little with how much lactose she can tolerate (she is trying lactaid at school for the first time today with some milk) but that's easy compared to what we have been through!

So - I see this staffing as a milestone. It is the first time I have seen my daughter thriving to the point where I don't feel I need to be researching and preparing for this meeting. I am SO thankful for that, and I have faith that her support team will help make the right choice as to what she needs now. :)

Tonight Bug was sitting playing a video game when she suddenly said "ouch - my thumb just popped out". To my amazement, she then tried to bite the joint. When asked why, she informed me that "this is what I usually do when this happens." Mind you - this is all new news to me!

Apparently the gnawing on her thumb wasn't working as she came and sat on my lap telling me how much it was hurting/bothering her. I tried to gently manipulate it, but gosh darn-it, I have no idea how to relocate a thumb! Where is the instruction manual for that? LOL Anyway, she took her thumb back, rubbed it a little, put it back in her mouth and said "got it!" So I guess she knows better than I how to handle the situation. It's a weird way of doing it, but if it works, I guess that's ok, right?

I was surprised by two things. First of all that this has been happening for awhile and that I had no idea! Secondly, that she knew how to deal with it and thought it wasn't a big deal. Painful, yes, but something to freak out about? No. To her, it's annoying, but "normal".

I cannot believe that I have not posted since August - but I just didn't feel like blogging. Then suddenly today I felt like sharing again, so here I am.

Let's see, since my last post Bug turned 8 (WOW - she was diagnosed at 5), she started 3rd grade, we did lots of fun family stuff and she's now completed her first quarter at school. Report cards and teacher conferences will be next week. Gosh, time flies!

She is doing well in school. The PT and OT are still seeing her although I'm not sure how much. She is involved in Girl Scouts, taking vocal lessons, and she is about to finish her "cheerleading" class. It is very low key, no jumping or gymnastics type of stuff. Just chanting and clapping. She is asking to take swim lessons again, but she also wants to go to the after-school program at church, so I just don't know how we could fit all of that in! I am happy that she is involved and finding activities that she enjoys and are healthy for her.

Now the not as fun stuff. She sprained her ankle in gym class a week ago, by tripping on the floor. Whoops! :) I think most EDS'ers see the humor in that. EDS'ers tend to be a bit less coordinated than the general population. So, she's in an air cast splint until the end of this week. It seems to be healing up nicely and she is now walking "normally" on it again.

As some of you know we're having some issues with her speaking up for herself and her needs. She didn't ask for any ice when she injured herself, even though she was hopping around all day at school. The teachers thought she was fine because she didn't complain, which she wasn't. I did speak to her main teacher the next day briefly and let her know that Bug isn't a complainer, but I also spoke to my daughter and stressed it was up to her to take care of her needs. That she should always ice any injury. I thought she got it, but then two days later she had another incident.

Bug came home and was telling me how badly she had to go to the bathroom at school, but that she couldn't because she'd loose a "coupon". I asked if it was close to recess (when they wouldn't loose one) and she said no, she had to wait a long time. Upon further questioning, I found out that she didn't even ask the teacher to go, she was just assuming that because that is what the teacher had said to the class in general at the beginning of the school year that it also applied to her. I explained that she could go whenever she wanted because she has a Dr. note, and I asked if she wanted me to talk to her teacher. She got really upset and said NO!

So - I think we have a bit of an issue right now with not wanting to draw attention to herself, or wanting to make herself any more different than her peers. I suppose I knew it would happen at some point, but boy, it stinks. I can't follow her around everywhere making sure she gets ice packs and asks to go to the bathroom, but I finally have her off of miralax and I don't want to end up back on it. Ugh! Anyway, we are going to start going back to her therapist again and I am going to mention this and see what her thoughts are. I don't want to make a huge deal out of it but at the same time I want the door to be opened so that Bug can know she has someone to talk to about this stuff (besides me) as she gets older. I hate having to go to therapy, but at the same time I know if we don't deal with the medical anxiety now or the being "different" now there is a good chance it will only get worse as she gets older. But the having to leave school early and driving over an hour just for therapy sucks, even though I really like her therapist. Wahhh, listen to me complain. I should just be thankful we have a good therapist, right?

We are also in the process of trying to find acceptable clothes for winter, which isn't easy when you are looking for items that are easy to get over your head, pants without zippers or buttons, coats with easy zippers, etc. Plus, it has to be "trendy" because we're at that age. ;) I have managed to get two pairs of jeans that have no zippers or buttons which are very trendy (complete with sparkles on the pockets) but that's been it so far! I am going searching again tomorrow and hope to find some more clothes. If I can't she'll end up with several pairs of the same thing, which is better than not having any jeans. We're tired of living in sports pants/sweats.

So, overall things are going well. Sometime in the next month we should be having our IEP meeting and I'll get to hear what the plans are for the upcoming year. Should be fun, right???

Oh - I almost forgot! We see our new GI on Friday, so cross your fingers we all get along! Ok, I'm done now - for real! I'll try to update again soon!