On Being Mom to a Medically Complicated Child

I mentioned in my last post that Pumpkin had been having a sore throat.  I took her in that week and her strep screen was negative.  However, her sister's was positive.  The following weekend, Pumpkin noticed that her left arm had a painful swollen vein in a place that she hadn't had before.  Within a day or two it was very sore, swollen and painful.

Above is the area of inflammation and pain where her fingers are.  Below along the arm is bruising she had after her last IV from getting PPN in the hospital when she had c.diff in midNovember.  She'd had inflammation there for about a week, then it went away.

I tried to get her in to see her doctor on Tuesday, the 21st, but they couldn't get her in and had her go to the ER.  We were expecting an exam, ultrasound, and a prescription for antibiotics to send us on our merry way home.  Instead, she was admitted for IV antibiotics (vancomycin) and observation.  The ultrasound showed she had a big clot (9 cm long - about 3.5 inches) in her basilic vein, which, fortunately, is a superficial vein and doesn't pose any real mortality risks.

While in the hospital she saw many pediatric hospitalists and residents, a surgeon, and a hematologist.  Heck, she even saw Santa Claus!  Where she got the IV, she kept trying to start getting phlebitis with every infusion, and each time they had to flush the IV it gave her a lot of pain.  We found that if we gave her hot packs during the infusion and kept the IV at a low tko rate at other times, she did better and the inflammation and induration of the vein got better.  On the 24th they repeated the ultrasound and the clot had shrunk to 5 cm.  They felt she was doing well enough to send her home.

All along they had told me that she would be changed to an oral antibiotic upon discharge.  While in the hospital, she had been on vancomycin, which is used to treat resistant c.difficile.  They had checked her stool for c.difficile, even though she is no longer symptomatic.  It was still positive.  This can be a false positive, but it didn't give us the reassurance that Pumpkin was no longer in danger of c.difficile.  When they told me that they were going to send her home, they told me that she would be going home on oral clindamycin with Flagyl to help keep the c.diff at bay.  In my practice as a physician assistant, there is one drug that is notorious for activating c.difficile, and that is clindamycin.  For these people (the hospital docs) who have not been closely following Pumpkin, this seemed logical.  For me, who knows that Pumpkin's original c.difficile was activated by a 10 day course of, none other than the very medicine to treat c.difficile, Flagyl!  My head was spinning!  After the doctor left, I processed this and came to the conclusion that although Pumpkin hated being in the hospital, was crying every time she got Vancomycin, and although it was Christmas Eve, her blood clot was receding and her c.difficile was not raring up.  I'd rather deal with the meds that were currently working than switch to another med that had a very likely chance of putting her back in the hospital in another 2 weeks for c.diff!  I asked for the doctor to come back and requested that she get an infectious disease consult or discuss the matter with Pumpkin's GI before going forward.  She was very nice, and she came back an hour later stating that she had discussed the case with the infectious disease doctor, who told her to use cephalexin and no flagyl.  I felt more at peace with this.  As the pediatrician was still in the room putting the orders into the computer, she heard me sighing loudly.  I didn't even know I was doing it until she confronted me a couple times wanting me to tell her how she could help me.  I think I was processing the change and letting off stress.  I didn't mean to make her uncomfortable.  I wonder how many docs I drive crazy with my doubting, double-checking, bringing up concerns, etc.

We live in rural Illinois.  My daughter's specialists are in three major cities and four different health systems.  In the past 3 years she has been diagnosed with crohn's disease, osteoporosis, asthma, scoliosis, primary lymphedema (told to us by the physical therapist, not officially labeled by a doctor), seizures (which she has had since age 4), and most recently hypermobility syndrome and finally blood clots!  This year alone she has seen 13 specialists - not counting all the ones she saw as an inpatient, been hospitalized three times (all since September), and has had scopes, testing for SIBO (small intestine bacterial overgrowth), an MRI of her lumbar spine and of her brain, ultrasounds of her legs and arms and neck for blood clots and swelling, xrays of her spine and sacrum, too many blood tests to count.  She is on seizure medication, immunomodulator, and has been on steroids and antibiotics x 3, not to mention probiotics, essential oils, vitamins and nutritional supplements.

This is a very happy Pumpkin in her Christmas Eve jammies, home from the hospital.  She's looking pretty good and I hope and pray it lasts.

Today is the last day of prednisone.  What will happen next?  Will the Crohn's return?  Will she react to being withdrawn too quickly?  Will the c.diff return?  When will the next hammer fall?

In the next three months she will see the hematologist regarding her clotting, her pediatrician for a hospital followup, her gastroenterologist, an immunologist (I hope), a geneticist to rule out Ehlers-Danlos, her rheumatologist for her joint pains and her neurologist for her seizures.  She will continue to see her orthodontist until she gets her braces removed, have a follow-up with her asthma specialist, and followup with the orthopedic surgeon regarding her scoliosis.

Are all of her symptoms due to Crohn's, or does she have something else that is causing it all such as Ehlers-Danlos Syndrome, Immunodeficiency, or something else altogether?

Editing to add:  Pumpkin isn't my only child.  I have three other children, each with their own issues.  One has major anxiety issues, one has bowel and bladder and weight issues, one has a tick bite that has swollen up a lymph node, and then there is my husband who in the last 2 months has fallen on a ladder from 12 feet up, possibly broken some ribs on another occasion, and today I took him to the ER because he screwed up his foot in a 4-wheeler accident.

Weaning off prednisone and New Diagnosis: Hypermobility Syndrome

Currently Pumpkin is weaning off of prednisone and is starting to get some of her previous symptoms back, namely joint pains and abdominal cramping.  She had one day of being pain-free in her abdomen (the day she went to visit the GI - three weeks after discharge), but now that has returned as well.  Her stools have become more formed, but prednisone constipates her a little.  She has gained up to 113 lbs altogether!  If her symptoms return, she will have to go on the stronger Crohn's med.

She hasn't had any seizure activity for about a month.  She is up to 5/8 of her total lamictal dose on the titrating up schedule.  Thursday she will go up to 75 mg twice a day.  She seems to be handling it well.

Ten days ago she had a little emotional crisis and she decided that hurting herself was preferable to the emotional pain she was feeling.  She cried for at least half an hour when I took the book away that she was clobbering herself with and made her come in to my room so I could watch her.  She's been much happier since that day though, thankfully.

On the 10th we saw a rheumatologist.  He thinks she has hypermobility syndrome.   It makes a lot of sense since it is common in kids with crohns.  Interestingly, she has other symptoms that go along with Ehlers-Danlos syndrome (type 3), which is a genetic disorder, including osteoporosis, slow healing with scarring, stretchy skin, joint laxity and pain, insomnia, anxiety, flat feet (she wears orthotics).  Twice in her childhood she has gotten so bad that she had to have OT to help her with postural problems due to low muscle tone, hand weakness, etc.  It has interfered with her learning in a normal classroom at times (especially when her crohn's symptoms were out of control).  I see other symptoms of EDSIII in my two other girls, so I've asked for a referral to a geneticist.  Pumpkin is also being tested for other types of arthritis.

Since Saturday, December 14, she got a virus that her little sister has been fighting so that is muddying the water with more joint pain, fever and sore throat.  She is starting to get over it and today finally didn't have sore throat.  She is going to try to go back to school tomorrow.  She had a strep screen today, which was negative as I suspected.

Hospitalization and Road to Recovery

The evening of my last post, I ended up taking Pumpkin to the hospital.  Her c.diff came out positive the next day.  She spent 5 days inpatient receiving IV steroids, antibiotics and TPN given peripherally.  She started coming around.  When they sent her home they gave her enough antibiotics (Flagyl again) for a total of 14 days, and put her back on prednisone.  They also increased her 6MP by 25%.


Since being home she has gained weight from 98 lbs at discharge up to 11l lbs, yesterday!  Her abdominal pain has resolved and she is having 1-2 formed or hard stools/day.  She is weaning of the prednisone by 5 mg every 5 days.


She has been slowly increasing her Lamictal and has not had any more full on seizures, and has had an increase in partial seizures, but those are declining as we go up in dose.


Her leg swelling has come back.


Her face is swollen, with a double chin, and her acne is getting pretty noticeable.  These things we attribute to her prednisone.


About half of her hair has come out, probably due to all her stress.  She thinks it has stopped coming out, however.


Yesterday we went to followup with the GI doctor.  She wants to see if her adjustment of 6MP has resolved her problem and is not planning on putting her on a biologic yet.  She promised that if Pumpkin flares again she won't make us run the gammet again, but will change her medication right away.  Pumpkin was pretty distraught about this because she doesn't want to have to get bad again.