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Hey Bets!

Glad to hear you have your wheels back in good working order! At the top of my irritant list is a car that is not dependable and in need of frequent repairs. I keep my fingers crossed that my 8 year old Volvo hangs in there a couple of more years, although I have been battling the itch to purchase something newer for over a year now so I don't know how much longer I can hold out!

Shingles svck!!! I had them back when I was only 24 and they were the pits! Took forever to get rid of them and I hope to never see them again, although the doctor at that time told me that it was rare to get them so young and my likelihood for shingles reoccurrence had increased 4 fold. frown

Originally Posted By: Underdog

My first intake appointment for IC is tomorrow morning. I'm a little nervous. I hope I'm not the complete ditz that might come out. This appointment is about finding where I am, and then placing me with the right counselor for me. My fingers are crossed.


I hope your intake appointment goes (went) well. I also hope that you were simply yourself and told it like it is. That's the best way to ensure you get matched up with someone you click with and that can help guide you to effective solutions.

I agree that I'm very fortunate that Richmond is just a short drive south of me here in NoVa, however I'm not sure there is any decent time to drive down I-95 other than 3am in the morning! It is the most congested road, at least between here and Fredericksburg, that I've ever seen.

Originally Posted By: Underdog
And something tells me that your D15 is going to benefit greatly from having you all to herself. She's had a rough year, and just maybe this is what the doctor has ordered up for her. I bet she's apprehensive and excited at the same time.


I really hope you are right about this. She has had a rough year but I am managing to keep the lines of communication open and stay engaged as much as possible without being overbearing. Maybe it's my wishful thinking but she has seemed a bit happier as of late so I am guardedly optimistic.

Originally Posted By: Underdog
My D20 has decided not to head to Australia for spring semester next year after all. I was really surprised, but her decisions were sound ones so I told her that I thought she was being reasonable. She then told me, "Then after I graduate, I'll head over and spend time with the family for a couple months like you did and enjoy every minute." I smiled and told her it was one of my most fond memories, and that she would love doing that too. (And then it's on her dime!!!).


I'm surprised about this too. Were her reasons for not going BF related and not wanting to be so far away from him? Visiting Australia is on my definite bucket list. It just seems like such a unique country/continent.

I'm sorry about the loss of D20's BF grandmother and dog. That's a double whammy. I worry about our family dog. She is a sweetheart of a dog that turns 12 this year and we've had her since she was a puppy. Her breed typically lives between 10 to 13 years. Both of my D's (including me too) just love her and it will be devastating when she dies.

Hope you get a decent offer on the house soon. The market here has suddenly cooled after a very, very hot March and April when houses were selling within a week. Since May there have been several that have sat on the market and even have had price reductions.

Originally Posted By: Underdog
What are you doing for Father's Day?


I will be on the road driving home from Pensacola on Father's day with my mom and GF in the car. My nephew is getting married on Saturday and my Mom is coming back up with me to attend D17's high school graduation. It will be the first time Mom and GF have met. It could be a "interesting" Father's Day. grin

BA

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Just wanted to check in with ya'll and see how everyone is faring.

BA - how was the wedding and the introduction of your GF to your mom?

All is hopping here. My first real IC appointment is Wednesday (intake went fine). I'm not sure where I'm going to start, but I'll figure something out.

I've been busy with D17 lately. She had an endoscopy and a pH probe put in on Thursday and discovered the poor kid has some nasty ulcers. So we're back on the purple pill and more close monitoring. My next foray with be with D20, who needs to get scheduled with the GI very soon. I'm thinking she might have an auto immune disorder.

We lowered the price on the house again so we're the 2nd lowest in the 'hood. I'm really hoping that things start moving quickly on that front. I really can't juggle between 2 households and get anything done. Just one house is enough for me.

On a fun note, D20 and I have our chalk painting class tomorrow evening. We're both kind of excited about learning something new. She's apparently not been motivated to get her job back. Her dad and I reminded her last night that it was up to her to make sure she has enough spending money for school. So we'll see. I can't lie and say it hasn't been nice to have her around. She's uber handy and does stuff for me all the time.

We had Mr. Wonderful over for dinner last night for Father's day, and our time together was really fun. The weather was awesome so we were out on the patio until about 10 pm when he called Uncle and headed back to his place. My side hurts from laughing... we wound up telling D20 the stories from our earlier days that are now okay to share. LOL. And I'll say that we had a really fun time reminiscing and telling them. By the time we were around the chiminea with wine in hand, we wound up telling her some really hilarious stories about our wedding and rehearsal night. He typically changes the subject when we spend too long taking trips down memory lane, so it was surprising that he was the one initiating. And actually, he initiated all of it...

A few weeks ago, I had found a box with a slew of his photos in it in my basement and gave it to him. He started out by a gut laugh and said, "Those pictures have kept me busy for the last couple weeks. Jeez, I was one skinny bast*rd, and all I wore were ugly T-shirts and flannel shirts. No wonder I couldn't get dates. Why on earth did you go out with me?" From there, it got ridiculous.

Anyway, it was truly a fun evening and D20 and I had a very tasty menu that was enjoyed by all.

Now back to scratching the mosquito bites that I got last night. And trying to breathe through the long distance smoke from the NM fires. I've been kind of miserable today.

So that's it for me right now. Hope all you dads had a wonderful father's day too!

Betsey


"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

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Quote:
I've been busy with D17 lately. She had an endoscopy and a pH probe put in on Thursday and discovered the poor kid has some nasty ulcers. So we're back on the purple pill and more close monitoring. My next foray with be with D20, who needs to get scheduled with the GI very soon. I'm thinking she might have an auto immune disorder.


Bets - a couple of things:

1) Purple pill = low stomach acid = difficulty absorbing B12, so make sure to give her extra B12 while she's on the acid blockers. Also, if she had actual ulcers, I hope they tested for H. pylori?

2) Re: D20 - what makes you think she has an autoimmune disorder? Has she been tested for celiac disease or gluten intolerance? What kind of symptoms is she having? (I know a bit about this stuff).

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Ellie,

Thanks for weighing in!

D17 was literally born with ulcers - she had GERD from the get go. She had a nissin at 9 months to help with that. On top of that, she takes zonisamide for her seizures (acidic byproduct) as well as potassium citrate for her renal acidosis (also acidic). She was on prevacid and prilosec until the GI pulled her off and put her on ranitidine for years. We now give the potassium with food and the nexium an hour before dinner. Our follow up from the pH probe is Thursday.

I will definitely make sure she gets extra B12 - so thank you for that.

The reason we did the endoscopy in the first place is because we wanted to make sure that if the nissin had to be redone (it tends to loosen over time), we could do it while she's still a pediatric patient and use the same pediatric surgeon who did it in the first place. She turns 18 in March and we start some of the doctor migration then (GI and surgeons first). Nissin is intact. All that's left is to find out if she still has reflux (which is treated with nexium anyway but also might require some tightening of that nissin).

I actually want my D20 to be tested for celiac disease and gluten intolerance first. She has had constipation since her mid teens and it got really bad when she was about 17. She takes paleo greens and is more than pretty good with her diet to avoid foods that cause her distress (gluten being one of them). But still she has abdominal pain, some cramping and gas. She's really tired of feeling crappy. I honestly don't know what the problem is, so I'd like to get some sort of medical advice on the next step while she's home. There isn't a GI near her university... or even close.

Feel free to lead me here. They're supposed to call her today to set up an appointment, and she's asked for me to come with her.

Bets


"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

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If she's completely gluten-free now, a blood test for celiac disease may or may not show anything - the antibodies go down over time with a gluten-free diet, that's how we monitor progress. DO NOT take any advice that says "Go back on gluten for 6 months and then we'll biopsy you" - if she really has celiac disease, that could make her very ill and sometimes takes years to recover from.

I use an IgG food panel by U.S. Biotek in my office to find milder gluten-sensitive patients, but it's not a standard test and your GI won't know anything about it. Same problem though, if she's gluten free and it shows negative for gluten, it may just mean she's doing a good job of being compliant with her diet.

The most common food sensitivities I see with gluten issues are dairy and eggs. Also, there's a big overlap between celiac disease and thyroid disease, and chronic constipation can be a symptom of thyroid disease, so she should get that checked.

You can ask for a gene test (HLA DQ2/ DQ8) to see if she's at risk for celiac disease. It's imperfect, as 30% of the population has at least one gene and they don't all develop celiac disease (and it's possible to have some gluten issues without the gene). Still, if she tests out like me (I have the worst possible combination, 2 copies of HLA DQ2) she'd know she should really probably stay off of gluten. (Given that I have these genes and have another autoimmune disease already, MY risk of progressing to full-blown celiac disease in my lifetime is 30% !!!).

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Also - make sure she's tested for parasites. Giardia is fairly common, you get it from drinking out of mountain streams or from exposure to kids who have it, it can cause chronic gas and cramping and is easily treated with a course of Flagyl.

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D20 hasn't been completely gluten free - she just doesn't have a lot of it in her diet. She tends to eat lots of fruits and veggies, lean proteins and occasionally the gluten stuff - we had shortcake on Sunday and she definitely had a serving. But when we go to get a burger (which we did Saturday night at Five Guys), she orders hers in a lettuce wrap. I happen to love them too.

Occasionally, she'll have toast with her breakfast, so she's not been entirely avoiding gluten. And she definitely won't return to a full gluten diet to get a biopsy. Volleyball season starts very soon, and she feels lousy when eating it. So when that happens, she *will* avoid it at all cost.

I'll definitely keep those questions in mind (thyroid, parasites) when we get in to her appointment.

That's really crappy about your genetic predisposition to celiac disease. I think we're all genetic time bombs in one way or another. My D17 is the first person in the family with the full blown Angelmans.. although my dad's cousin on his dad's side has 2 kids with some severe disabilities that sure sound awfully similar to my kiddo. Only she won't get the kids tested. WTF? It doesn't alter the course of treatment, and her kids are now in their 30s so I really don't get it. I haven't been tested for the breast cancer gene, though. My aunt has it (tested after she got cancer), and I am an awful lot like her in many ways so... that makes me a hypocrite, huh?

My toast to you is that it never goes further than testing positive for both genes.


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Hey Ellie,

My DD has *terrible* year-round allergies that cause significant cognitive effects. (Google "brain allergies.") DH has similar problems -- if he is irritable, irrational, or inexplicably acting drugged, an antihistamine helps. If DD is on steroids, her handwriting is so improved it looks like that of another child.

She's getting shots. But I'd like to try an elimination diet on both of them this summer as food allergies seem most apt to cause these cognitive effects. (I have allergies too -- their symptoms far exceed normal allergy brain fog.) Any recommendations on how to accomplish this simply with two *very* picky eaters, one of them being 7-years-old?


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(Oops -- apologies for just horning in here :-) )


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OT--this is kinda our community thread, so no apology is necessary. We all "horn in" grin

Good luck getting the allergies under control. What a mess! There are a lot of us here who have kids with issues and/or special needs. It's nice to know none of us is alone.

I'm leaving the medical stuff behind for a few hours shortly to take chalk painting class with my girls. Can't wait!


"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

Albert Einstein
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