Things to Take Note of

Ok - warning, this is mostly for my medical notes, but as usual, you never know when it might be useful to someone else! :) Plus, I am finding going back in my own blog to be very helpful in tracking how Bug's symptoms have played out over the last 1.5 years.

First off, Bug missed her stomach medication on the 6th. She had it again on the 7th, and has been on it normally since. Starting on the 6th she started having sleeping problems because of her tummy hurting. I figured it was reflux, but wasn't sure if it might be stress due to her upcoming GI appointment.

The stomach problems have not stopped since, although I personally noticed that she was falling asleep more easily again around the 14th. Her sleeping patterns have not returned to normal, she is still taking a long time to get to sleep but that would make it around 11 vs the 2:00am that was happening the week before.

We saw our GI Tuesday and Bug did AWESOME! She had no anxiety during the appointment, which was such a relief to me. We didn't do anything invasive, but if you'll recall she wouldn't even get her weight taken in the fall. So this was a huge step forward for her. :)

Since seeing the GI, she is still complaining about her stomach hurting and is still having problems falling asleep. In the mornings she is telling me she hasn't been sleeping at night, even though I know she has. As this continues, I am left scratching my head as to why she is so off right now. Looking back at last years blog this was the really bad time for us too. What does that mean? I haven't figured it out yet.

Also worth noting is that last night she was laying down watching a movie in her brothers room and her hands broke out in a rash. Similar to what happens on her mouth and legs. She was not eating at the time, but had popcorn about an hour before. The rash was not located anywhere else on her body. It was painful but not itchy. I did take a picture but haven't uploaded it yet. By morning the rash was faded and not hurting like it had been the night before.

In addition, today we started her on Zantac right before bed. It was her first dose, but the GI said that it acts immediately. If that's the case I'm not too hopeful since she was still up at 11:00 with stomach problems. I'll give a full GI update in my next post, I just don't have the energy to do it tonight. But the gist of it is that if adding this doesn't work, surgery is her only option. Talk about stressful!!!!!!!!

Anyway, that's all I have in me for tonight. :) More later!

6 comments:

aylablade said...

I was given this link by a friend who has EDS. We just found out that my daughter more than likely has it but we have to see a Genetisist first. I am fortunate that my sister is a PM&R doc and figured out what was wrong and why she wasn't walking. But now we have to wait to see the Genetics doc (Feb 14) but trying to get her in to see all the docs she needs to beforehand.

I would love some tips onhow to deal with young kids and EDS (mine is 2).

Dagny

PI said...

I'm so glad you visited my blog and hope Claire's story encouraged you. Hugs to you and your daughter.

Chelsee said...

Hello! What an incredible journey you have shared on here! I came across your blog when I was researching EDS. I am a physical therapy student and I am working with a family who has a child with EDS (classical and hypermobile type). I was wondering if you had any suggestions for strengthening and stabilization exercises that he could do. I really want to help him by finding something he will ENJOY doing. Do you mind sharing with me some exercises that Bug has found enjoyable?? Thanks for any help! my email address is chachee55@yahoo.com

Anonymous said...

hi,

I've been googling EDS and came across your blog. I was wondering what early symptoms your daugher was having? I think my daugher has EDS she is 16 months not walking, blue eye whites and super flexable. We are waiting to go to the genestisist.

BugsMom said...

You know, I didn't really notice anything unusual with my daughter when she was tiny. She was such an easy baby. She was a little behind with sitting, but not too much. If I remember correctly she was late cutting teeth. Now at age 7 she just lost her first one a couple of months ago and has yet to loose another. That is not typical. :)

The best advice I can give you at this point is to start making a family medical tree. When you see a geneticist they will want as much information as possible. It can help so much in figuring out what is going and and if it is EDS what form. Ask for any and all medical information from relatives, and tell them you won't share it with other family members if that concerns them. Even things that might not seem related could be, so any and all health problems or annoyances should be mentioned.

I wish I could help you more, but until you see a geneticist this is the best I can do. :) Also, if you do not end up liking what they say or don't feel that they take you seriously, get a second opinion. It is not at all uncommon for Dr's to just dismiss EDS patients thinking they are making things up or over-reacting.

There are some great e-mail lists at Yahoo Groups that might be helpful as well. CEDA and edsers are both pretty active. Go to YahooGroups.com and do a search for those. You might find more answers or at least some support. :)

Good luck!

HART1422 said...

my daughter is 4 yrs old and we just got diag. with EDS type 3 we still have to see the Cardio and Optho to check the tissue there the genetics told me. My daughter did not walk till she was 18 months and never crawled. She is really tiny also she weighs about 30 pounds and wears 18months to 2t clothes.. The Genetics dr's do ask alot of ?? get as much history as u can to bring with you... If anyone has any info on EDS foudation or support groups please let me now thanks so much...