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.

Doing terribly

Here's another update on Pumpkin:
She is still very sick.
Her symptoms are worsening.
She has diarrhea, no appetite and not eating, has back and intestinal pains and has now gotten weak. She is on day 5 or 6 of a heavy period passing clots. She is missing school (Monday and Friday, and I doubt she'll be up to going on Monday ). She has dropped her weight down to 96 lbs.

GI response: they are in disagreement about Remicade so it has not gone forward. They wanted her to try another medicine for SIBO, but it was $1500 and the insurance won't cover it. They decided to try prednisone again, telling us that she'd take 20 mg twice a day for 5 days to see if it would help and then go from there. She is on day two now. Of course we have concerns about this, mainly for 4 reasons: She already has osteoporosis, I think it lowers her seizure threshold, she ended up in the hospital at the end of September while finishing up a course of prednisone, and it alters her taste. She has given stool samples for c diff and fecal calprotectin to our local hospital yesterday morning.

On the seizure front, her new neurologist put her back on Lamictal. She is starting low at 25 mg and titrating up slowly. While I don't think it is causing her GI problems, I am thinking that it may be muddying the water. She does seem to have more abdominal pain, diarrhea and cramping since starting it on Oct. 29, but perhaps the course of the disease would do the same? I am anxious what doubling her dose on Thursday is going to do to her. Her seizures seem to me to be getting longer (2 min vs 30-40 seconds), but still not frequent. She had one or two seizures in October, that I witnessed, and one this month on the second of November which somehow took her from the bed to the floor. She chewed up her tongue pretty good that time. I am going to call the neurologist tomorrow to discuss stopping the Lamictal for a few days to see if that helps.

Pumpkin is emotionally depressed about all of her health problems and feeling so sick all the time. Last evening she was crying. The counselor she saw July-September didn't really work out, and we didn't reschedule since her hospitalization. I think we need to find another, and would especially like someone who works with kids with multiple health problems.

I don't remember Pumpkin being this bad since around the time she was diagnosed with Crohn's. She is skin and bones, weak and miserable, and suffering. Perhaps she needs elemental nutrition again. She seems to think eating makes her worse, so she is living off mostly Gatorade. The two days she did eat, she suffered for it the next day with increased diarrhea and pain.

We did get an appointment to see rheumatology December 8.  We haven't heard anything regarding an immunology consult.

Regarding her leg swelling, it hasn't really swelled for a couple months. Pumpkin doesn't wear the stockings lately, and with the rest going on, I haven't made it an issue.

I think that about covers our last 10 days.

So sick, GI doc taking forever!

Pumpkin finished her Flagyl/metronidazole with no improvement.  Two weeks ago on October 20 she had an appt in the Chicago area with her GI.  She was down to 102 or 103 lbs already.  On the way she had to stop 3-4 times to use the toilet.  The next two days she had fevers and severe diarrhea and abdominal pain.  Her joints were terribly inflamed.  She has improved since then to the point that she has gone to school 4 of her 6 school days, but usually comes home and goes right to bed.  She has had blood in her stools, but now she says her diarrhea is like pure mucus.  To me it looked like baby poo. She has had constant diarrhea whether she eats or not, and usually she doesn't eat.  Yesterday her only intake was a cup of rice milk and some toast.  Today she's just had Gatorade (1.5 glasses by 1:15pm.)  Her GI wants to start her on Remicade or Humira, but she's running into some obstacles that she's yet to tell me.  I am waiting for a call back from her. I've called 10-23, 10-27, 10-30 and today...

This morning she had another seizure.  I don't think she'd had another since 10-8.  At least not that I witnessed.  She finally saw a neurologist on 10-29.  She is starting her back on Lamictal.  So far she's taken 25 mg/day.  Today she is getting an MRI of her brain at The Princeton hospital.

Summer2015 Summary

Since our last visit, Pumpkin had scopes and pill cam in the spring, which were normal.  They did not start her on any new meds, but called it IBS, which in my opinion means "I Be Stupid" and diagnosis the doctor, not the patient.  It means they really don't know why they are still suffering.  They gave her Anaspaz and later another antispasmodic that starts with a d, that isn't coming to my brain just now.  Both were not really helpful, and both lowered her seizure threshold to the point of breakthrough seizures.  Recently, she had a Lactulose breath test and was diagnosed with SIBO (small bowel bacterial overgrowth) and she is now on Flagyl (metronidazole) for 10 days.  Hopefully that will cure her, or at least fix her GI wise for a long stent.  A few weeks ago, she was hurting so bad that we had to take her to the ER.  She got better during the night, but had another seizure while there, and had to stay for a 24 hour video EEG, which did not catch any more seizure activity.  More on this later.

Pumpkin tried to work this summer, but her health problems and frequent abdominal pain proved to be too much.  She frequently had to lay down, and one of her legs swelled up abnormally..  She had to have the following tests:  MRI of her lumbar spine to rule out spinal shearing.  It was normal.  Two spinal xrays, one said scoliosis, but second one normal.  She saw a neurosurgeon and an orthopedist, which ruled out those conditions.  She had a leg ultrasound, ECG and saw a cardiologist for her swollen leg.  It ended up that she has primary lymphodema in her leg and has to wear compression stockings on her left leg day and night for the rest of her life.  She saw a lymphedema clinic for this, and had a few visits to Peoria to get measured and fit for the stockings.

In August Pumpkin went to Wisconsin for Camp Oasis.  She loved it.  However, she had recently seen her GI, who upped her antispasmodic to four times a day.  She ended up having seizures two nights in a row, and they asked me to come get her.  This made me incredibly sad for her, because she couldn't even get a break when she was surrounded by doctors and nurses at a camp for kids with Crohn's.  Hindsight, I think the increased dose of her antispasmodic triggered the seizures.  She continues to have seizures about once a week, but I can usually attribute it to some trigger: sleep deprivation, taking Flagyl, taking an antispasmodic, etc.  She sees a pediatric neurologist at the end of the month to discuss her seizures.

This summer she had problems with her asthma.  She was on prednisone for 12 days to help diagnose it.  She seems to be doing well on Symbicort now and rarely needs her albuterol inhaler any more.  She was finishing up her prednisone last month when she went to the hospital.  The prednisone had made her constipated too, which is really abnormal for her.  She also was pricked 69 times for allergy testing and saw the allergy and asthma doc 3 times over the summer.

Finally, I think, she also saw a counselor several times in August and September.  I don't think we ever really connected very well with her, and with all her other stuff going on, we just stopped going.

I guess that

Changes in Doctors, looking at possible changes in schools

As you probably read into my last post, I wasn't happy with the responses I was getting from our previous peds GI.  He didn't seem to think that Pumpkin had a problem.  Pumpkin wouldn't talk to him either because he was a man, and foreign and older.  I think he intimidated us and we didn't really feel he was listening to us.

Last month we visited a new GI in Chicago.  It is a much longer commute, but we liked her very much.  She listened to us and brought us into what she was thinking and planning, which is right along the same track as I.  I hoped that she would want to repeat her scopes and see that Pumpkin was not in remission and give us hope that we could make some changes in her regimen.  She didn't have Pumpkin's records from her previous GI, but promised to look them over and planned an upper GI and colonoscopy, which we will do next week.  She also is considering pill cam again, since that is what showed most of Pumpkin's inflammation last time.  She seems to be treating Pumpkin as a whole and not just her numbers, which have never been very impressive.  I'm thrilled!

Other IBD kids on the forums all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having more of a struggle when it comes to high school.

Pumpkin has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you the answer orally without any problem. I will admit, I've been lax on making her do the written stuff, because I feel that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I hear her saying things like, "I don't think I can do ________" because I won't be able to go to college anyway. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her Crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.

We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Pumpkin, on the other hand, is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English, History and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.

Thanks for any advice or encouragement you may have!

January 29 Office Visit

So we went to see the GI again.  He didn't seem at all concerned with Pumpkin's symptoms.  He said she looks good because her weight is "10%-ile".  I tried to point out that her BMI is not normal because her height is 94%.  He seemed happy because the BMI was 14.  I guess he doesn't look at percentiles like her pediatrician.  Her BMI is "0%ile".  He didn't have much to say about her bleeding after insisting that she must have been constipated, although she wasn't and hasn't been.  He discussed meds to increase her appetite and nutritional shakes.  He doesn't remember that she has done all that.  He brought up G-tube.  Not an option yet as far as we're concerned.  He finally brought up an option I was hoping for - rescoping.  We'll do it on Tuesday.  I am hoping for a clearer picture of what is going on inside after 2 years of treatment.  I don't expect a whole lot since most of her disease is in her small bowel where the scopes can't see it.  I think we're ready for a major med change.  Something has to be better than this.  Remicade?  Regardless, I am also doing research on some major diet changes.

Oh, and the "Calm" supplement seems to be helping.  She is getting to sleep easier.

2 years after Diagnosis

Pumpkin is now 15 and has had a fairly good year until recently.  She did not have to get the g-tube and we stopped talking about that at the GI since she had gained so much weight on her own.

In August Pumpkin moved to Illinois, and I moved 3 months later.  This was a rough transition.  She came down with her dad so she could start high school at the beginning of the year.  I had to stay until I could sell my house, so I could keep working and make the mortgage payments.  Pumpkin grew a few inches, and still seems to be growing.  She hasn't had menarche.  She gained up to 99 lbs (9 lbs more than last year at this time), but I think that is starting to fall off again.  I think her BMI is falling off too.

Last month labs looked okay, but her folic acid was low and her RBCs were big.  This is new for her.  This month she is having a lot of abdominal pain again :(, painful BMs and blood when she wipes.  She is having more abdominal pain and lack of appetite.  We see her new doctor tomorrow, so I'm hoping for a colonoscopy to be scheduled.  She hasn't had scopes since 12-2012 when she was diagnosed.  My feeling is that we need to adjust her medication or change it.  We did try an IBS med, Anaspaz, which helps with symptoms temporarily, but doesn't explain the blood.

We've just started (2 nights ago) a multivitamin called Calm Multi for Kids, which has magnesium to help with sleeping, but it hasn't helped her yet.  Her 17 year old sister was helped by it both nights though.  I'm not sure if she is just not processing it well or what...  I like that it has fruits and veggies, omegas and is liquid for better digestion. 

I'll try to post again after tomorrow's appt.