I  Pumpkin as Ginny Weasley, Dad as Lucius Malfoy, and Little Brother as Harry Potter  I haven't been very good at keeping this up.  Sorry, friends. Pumpkin has had a rough couple of weeks.  Two weeks ago she was so stressed out about her upcoming tonsillectomy that she couldn't eat, then she had the tonsillectomy, and now she is still having pain trying to recover.  She wants to eat but is so afraid of her throat hurting that she doesn't eat much.  I keep thinking to myself that she will be fine once she gets over this.  She says food doesn't taste like ..read more

I'm wondering if a childhood of pain and feeling poorly secondary to Crohn's can psychologically change the child to have an aversion to food. My daughter's GI thinks that her Crohn's isn't in flare (normal labs and calprotectin, no pain, etc), but she has ongoing loss of appetite and frequently feels nauseated or "gushy" in the stomach if she eats.  Some days she won't eat at all because of this aversion to food.  She has definitely found a hypersensitivity to some textures (lumps in potatoes, graininess of some foods, etc).  Her GI is suggesting IBS, but without pain, constip ..read more

Keppra didn't last too long until she went into a dark place.  Next was trileptal, I think, then ultimately we went on gabapentin.  I was pleased because she really didn't have too bad of side effects.  Her stomach wasn't getting worse.  Her depression was stable...  Problem was, she never got better seizure-wise :(.  When we got up to 1200 mg twice a day, she started acting high or drunk and her pupils were always dilated.  She was very impulsive and tended to hurt her little brother who she had always had a good relationship with before.  She would wre ..read more

Pumpkin had a fairly good week.  She was able to get back into doing school and her belly improved and her throat was better.  She had a full on seizure one day only.  On Wednesday we went to Iowa City again and she saw the psychologist again.  They are working on her sleep issues which is challenging her to stay out of her bed all day.  She spends more time with the family, but still spends time in her room on the floor beside her bed.  On Wednesday she saw a new peds neurologist which was also at U of I.  He listened well and I thought he heard our story w ..read more

Pumpkin was pretty miserable for about a week starting last week to the point where for a couple of days it hurt to even drink water.  On Thursday and Friday of last week, I called Iowa City and asked what their plan was because I still had not heard from them.  They called back and told us they wanted to do scopes and video endoscopy the following Thursday (yesterday). The cleanout they recommend is four days of Miralax 3 times a day.  Since she hadn't been eating and barely drinking, I reduced the dose to 8 oz instead of the 13 that they recommended on the first three days, t ..read more

Dec 20 we went to Iowa City and saw a new GI.  She was very nice and the 2 hour drive was pretty much all highway.  She seemed concerned and interested, but felt that Pumpkin was too complicated for her.  She will send a referral for her to see a psychologist there, to see a geneticist for ED syndrome, but said there is a year's waiting list for this, and she will gather all Pumpkin's previous records from Alaska and Park Ridge and will give them to her head pediatric GI to review and then they will decide what needs to happen.  Now it has been a week and still no word from ..read more

Pumpkin took her new seizure med (Topiramate) for a week.  By then she was completely nonfunctional, even on the lowest dose.  She couldn't eat, couldn't sleep, couldn't think well enough to do any school and was slipping into depression again.  I called the neurologist on the 7th, but didn't get a call back until the 12th.  I went ahead and made the executive decision to stop it.  December 12 she started feeling a little better having stopped the seizure medicine, but still having pain after meals and still having anorectal symptoms. Weight has dropped back ..read more

Three nights have gone by with her new seizure med.  Today she was very tired. Tomorrow we will increase the med to twice a day.  Dose is still very low.  She reported not being able to think clearly enough to do her schoolwork on Friday.  I think she may have had another seizure this morning.  I am not sure but she seemed a little postictal.  It may have just been the brain fog.  I'm not looking forward to her taking the med during the day.  I have told her to just do what she can with her school work.  Already her appetite is gone but not reportin ..read more

Sometimes I am happily spinning my numerous plates on various levels and all of them are doing their thing.  Each one represents one of my children's many issues.  For Pumpkin, I have many plates spinning and they are all very close to one another.  If one plate gets a little bit out of balance, the other plates too start to wobble.  If I can't get the one plate spinning well again, the others start slowing down or threaten to crash.  Crashing plates is VERY BAD. Pumpkin's plates are her Crohn's, her weight, her seizures, her POTS, her depression, her appetite, her ..read more

This has been a tough week.  Pumpkin had an MRI of her pelvis on Monday.  It went fine, but took a lot of delays for correct orders and preauthorizations.  I am so glad that she has our current health insurance. I got the results back and heard that she has inflammation in her rectal area.  They are starting her on Canasa suppositories.  The pharmacy didn't have them and had to order them, so started them Monday, November 21.  She was having diarrhea, sores on her bottom and felt a lump inside her.  She is also having right lower quadrant abd ..read more