Snow Cones, Numb Tongues, and Regression

This is more for my own note keeping, so sorry if it's boring. :)

Bug has had horrible tummy pain both last night and tonight. I suspected that it came from the snow cone she had at vacation bible camp last night, so I warned her tonight that it might be the problem and to try another flavor and we'll know for sure. Well, she had Blue Raspberry last night and tonight it was Cherry. Both had the same result. About 15 minutes after finishing her treat she had horrible pain in her right side, just under the rib cage. On top of that, she was telling me her tongue was numb after eating it. I looked in her mouth and it did not look swollen. I ran my finger along the top and she said she couldn't feel it. Then I scraped it a few times and she still couldn't feel it. (according to her) I kind of pushed my nail down on her tongue and she went "ow"! so she felt that. She told me it must be because of the snow cone being cold, but her tongue did not feel at all chilly and it had been over 30 minutes since she finished her treat. I'm a bit concerned and will bring it up at the allergy appointment in just over a week. We already have an epi-pen for her due to tongue itching and swelling in the past, but we still don't know anything about what caused it. So, maybe this will help us get a step closer to some answers. Of course, maybe tongue numbing means nothing, I just don't know.

Back to the stomach pain. We could not get rid of it last night. She drank a lot of water, had a small snack, and just whimpered in pain until she finally fell asleep. She still felt off this morning when she woke, but after getting up and eating (and having more medicine) she felt better and headed to school. This is different than most of the pain we've been having in recent months. Usually the pain is above the belly button but below the sternum. Sometimes it is around the belly button or goes up above the sternum. Again, I think this might be important for our GI appointment so I want to write it down while it's fresh in my head.

Also, she has complained a lot more about feeling like things are "popping" this summer. Those are her words, not mine. This is a 7 year old, so what a pop is to me might not be at all what she is talking about. That makes it tough. On top of that, she gets upset if I ask too many questions sometimes, because she feels I should know what she is talking about - that she is being perfectly clear. LOL So - all I know is that sometimes she hears a pop (as do I) and there is pain at the same time and after. Other times she says she pops but I don't hear it, and she says she feels and hears it (and it is hurting). If that is the case, then the pop isn't very loud. And of course, there are times when she pops and we hear it and there is no pain. She's had popping in her knees more recently, her foot/ankle?, shoulder, and elbow. Those are the places that I can remember right now. I think they are the most common.

Luckily, her hips seem to be pretty happy right now. I think we've only had one minor flare-up since she did her physical therapy last winter. Woo-hoo!

Another thing I want to remember. She seems to have regressed with being able to get her shirts on and off by herself. She has better luck getting them on, but still struggles with that. Getting them off by herself is rare these days. I don't know what to do about it other than talk to her PT when school starts and see what her thoughts are. It still amazes me how quickly she looses a skill set if it isn't practiced every day! With the shirts it seems to be the difference between the loose fitting shirts of winter and the more form fitting shirts she has been wearing over the summer. Just that difference in clothing has made it very hard for her to change her shirts.

Anyway, I think that's the bulk of it for now. Ehlers-Danlos Syndrome is such a complicated condition!!!!

2 comments:

IsabellaCloset said...

Amy, Oh how my heart goes got to you & sweet little bug.. She reminds me of so much of my 11 year Granddaughter Isabella and whats she's going through with her Juvenile rheumatoid arthritis. When they put Isabella on her JRA shots a side effect is stomach pain. Also Isabella explained her fingers were popping at night to her Rheumatologist..then they did x rays and found out she needed the ring splints
Isabella is now wearing 4 permanent ring splints. She may need 2 more.
Isabella also does not want to talk about her JRA she says she has no problems.
I enjoy reading about you and little Bug's journey. It is not boring at all.. very informative!
If you can will you email me. If you have time that is.
My thoughts and prayers are with you & Bug! I'm off to find information about Ehlers-Danlos Syndrome. I have never heard of it before reading about Bug..
Hugs & blessings ~Mary~ isabellascloset@aol.com
PS Isabella also just went for allergy testing.

Testy Tiger said...

I'm so sorry to hear that Bug hasn't been feeling well. Perhaps she is allergic/sensitive to the dye. I have a hard time with red dye, and my friend cant have anything purple.

I also have trouble with getting shirts on and off... my shoulders tend to pop.

Also, I wanted to mention that my little goddaughter is called Bug, as well. She is 4.