Information for Marshall's doctor
Marshall was born on October 24, 2004 at 33 weeks 6 days gestation via emergency C-Section. Prior to that time, his mother had been having pre-term labor and was taking Nifidipine to stop the contractions. She also had been given Magnesium Sulfate 2 times (I think it was for 2 days each time). When Nifidepine wasn’t working to stop contractions, Aprilyn had to go to Labor and Delivery where they gave her a shot of morphine and phenergan and sent her home. She was bleeding a lot and had Placenta Previa. She was hospitalized 1 week prior to the birth of Marshall and kept in Labor and Delivery. When the contractions got closer together and the Nifedipine wasn’t stopping them, the doctor ordered Magnesium Sulfate. Aprilyn was having a lot of difficulty breathing while on the Magnesium Sulfate. The contractions were coming strong even though Aprilyn was on Mag Sulfate. The doctor finally agreed to let her deliver. The anesthesiologist gave Aprilyn an epidural and then came in to pop her water. She tried to tell the doctor (Dr. Thorpe) that the baby’s cord was in the way so the doctor ordered an abdominal ultrasound. The ultrasound tech couldn’t see anything but Aprilyn had seen it on a vaginal ultrasound. The doctor wouldn’t listen and popped the water anyway. Marshall’s cord prolapsed and Aprilyn was immediately prepped for a C-Section. Thankfully, a nurse decided to check to see how the baby was doing. Marshall had quickly descended down into the birth canal so the nurse had to shove him back up. The C-Section turned into an emergency with the NICU team not even being warned Marshall was coming. Dr. Thorpe had to use forceps and a vacuum to get Marshall out. He was immediately bagged until the respiratory therapists could get there and tube him. His APGAR was 2 at birth and either a 4 or 6 at five minutes. Marshall was rushed to the NICU where he was put on a ventilator and bili lights (he had severe jaundice).
Marshall spent 3 weeks in the NICU. He was on the ventilator for 24 hrs, then on blow by oxygen, then by day 3 he was breathing room air. He had to be on 2 bili lights and we weren’t allowed to hold him for several days. After about 3 days, we got to hold him for 20 min. twice a day. After about a week, he was transferred to Nursery B, where we were told at that point he was just a “grower and feeder”. He was fed by gavage tube until he was 3 weeks old (36 weeks gestation) and learned to suck, swallow, and breathe. He had a lot of apnea and bradycardia while in the NICU and after he was released. A test run at the NICU (some kind of probe test? I just know it took all day.) and it was decided that his apnea was due to his Central Nervous System not being properly developed. He was put on Caffeine Sulfate and he improved. He was sent home on an Apnea monitor and taking Caffeine Sulfate as well as iron drops.
Home With a Preemie
Marshall was always a fussy baby and not easily soothed. He loved being swaddled TIGHT and would only tolerate his swing if he was wrapped very tightly. He was easily overstimulated. The NICU had a class for new preemie parents that Aprilyn attended. They taught her that when the baby gets the hiccups it’s a sign of overstimulation. He got the hiccups a lot but once we swaddled him tightly and took him into a quieter, darker room, he was fine. He didn’t sleep well at all! He still had quite a bit of apnea and bradycardia. He was able to get off the monitor in January (I think) and caffeine (I can’t remember when but it was quite a few months.) Marshall never slept very much and was irritable a lot. We kept thinking it was colic and it would improve as soon as he grew out of it. We gave ourselves goals like: we can deal with this until he’s 4 months old and then he’ll grow out of it. When he was 4 months old and not getting any easier, we thought it was just that he was preemie and we had to wait for his adjusted age to be 4 months. That came and went with no improvements.
When We Noticed a Problem
Marshall was not really a happy baby and always so difficult but we love him. When he was about 6 months old, he would sit in his high chair and bang his head on the back of it repeatedly. He also liked rubbing his head on the floor (still does) and when he would sleep (yes, he occasionally slept), he slept with his head pressed in the corner of his crib. He still seeks pressure on his head today. When he was about 9 months old, he would get into the cupboard but not take anything out. He just opened and closed cupboard doors over and over and over. He started banging his head more and more as he got more mobile. He had to be held most of the time or he would just cry all day. We wore him in a SNUGLI until he was 9 months old. Marshall was fussy and irritable a lot. He would bang his head on HARD things like the metal door or the cement steps outside. We were worried and knew there was something not quite right about him. One time, when he was about 18 mo or so, he drank an entire bottle of white board cleaner and said it was yummy. He brought the empty bottle to Aprilyn because he wanted more. We took him to the ER and they drew his blood and we waited there for a long time but he was fine. In our search for help, someone recommended The Children’s Center in Salt Lake. Aprilyn took him up there and it was the first time someone took her seriously in regards to Marshall’s behaviors. We had previously taken him to Wasatch Mental Health but they said there was nothing wrong with him except he had sensory issues and they don’t know enough about those. The social worker at The Children’s Center recommended we see a Developmental Pediatrician and get into Occupational Therapy. The stress placed on our family was (is) so great that the social worker worried about us as parents. We don’t get much of a break. We also saw a Child Psychologist (or was it a Psychiatrist..not sure). She did prescribe Clonidine for him to help him sleep. See below for a list of all meds we’ve tried and their side effects. Marshall was REALLY angry most of the time. He would hit everyone all the time and bang his head a lot too. He still bangs his head on us but not as hard as he used to. When we first put him in a regular bed and had the boys' bunk beds separate, we put the crib bumper pads around his bed and put the bed rail on that would normally be used when you have the top bunk set up high. He still craves pressure on his head and we find him smashed up against the head of his bed every night so we put a body pillow there.
Marshall hates to eat. It has been a constant struggle with him from the very beginning. He was breast fed but in order to get him to eat, he had to be in a dark, quiet room and had to be completely swaddled or he was too distracted to eat. When Brian would give him a bottle at night so Aprilyn could sleep, he had to be swaddled tightly and Brian had to keep moving the bottle around to get him to keep eating. As he grew, it was harder to breast feed him. He finally quit breastfeeding altogether at 8 months. He just refused to nurse anymore so we had to buy formula. When he was 4 months adjusted, he had to eat baby food to get him to poop on his own. He loved sweet potatoes. He ate pretty well until he turned one. Then it just all stopped. He wasn’t gaining enough weight so he had to be put on Pediasure to help maintain what he had. As he has grown, his dislike of food has increased. Meal time is his LEAST favorite part of the day. It’s a huge battle just to get him to eat things we know he likes!! He drinks 1-3 cans of Pediasure a day. Sometimes he won’t even drink that.
We started OT about 2 yrs ago I think. After the initial eval, the therapist said he’d have Marshall sleeping through the night and not banging his head within a few months. It didn’t happen. Marshall would NOT tolerate swinging at all. The OT said swinging is very calming and organizing but Marshall was terrified of it. It took about a year to get him just to tolerate swinging.
We were DESPERATE for some sleep. We kept telling the pediatrician there was something wrong but he just blamed us and told us it was poor parenting. The doctor told us we had to just let him cry it out. The problem was that when he would wake up in the middle of the night, he wasn’t crying. He was playing in his crib. We decided to video tape it. So, the first time he woke up at night, we turned on the camera. He would play for about 20 minutes, then lay down and sleep for 20 min and then wake up again..all night long. Nahthan had to sleep on the floor in our room because Marshall would wake him up. We decided to switch Pediatricians because we really felt like there was a reason this child was waking up and our doctor would not recommend a sleep study. We tried seeing Dr. Marci Connor in American Fork (I think that’s how you spell her name). She recommended Dr. Kathleen Pfeffer, a sleep specialist. We went to see her and she said we had to get him sleeping before we could do a sleep study.
Meds We’ve Tried
Clonidine – made him very irritable the next morning and he couldn’t wake up all the way. He was about 18 mo old when we first tried this one. He currently takes this one 1 hr before bed and it works pretty well. Sometimes he sleeps through the night even!
Trazadone- worked great but not enough. Had the desired effect but still didn’t make him sleep through the night. Eventually he gained a tolerance for this drug and it stopped working altogether.
Melatonin- worked initially but never made him sleep through the night. It was enough to settle him down for sleep when coupled with Trazadone.
Remeron- made him cry out in his sleep a ton. He wasn’t ever fully awake but had fitful sleep and didn’t sleep through the night.
Neurontin- Dr. Pfeffer prescribed this one after one of his sleep studies showed a ton of Periodic Limb Movements. This made him SO upset!!! This was the worst drug we’ve tried on him as far as side effects go. It increased his undesired behaviors, (i.e. screaming, hitting, head banging, not tolerating ANY change).
Rozerum- no bad side effects, just didn’t help him sleep through the night.
Zoloft- A developmental Ped we saw prescribed this. I can’t remember the name of the doc but she’s in SLC and she’s supposed to be the #1 developmental Ped. He got REALLY angry while on this medicine and we begged to have him taken off. The doc increased the dose instead. He got even angrier! Finally, we weaned him off ourselves.
Dextroamphetamine- made his anger issues get worse. We noticed a negative reaction right away but Dr. Jones wanted to increase the dose instead of change the medication. Increasing the dose just made him even angrier. We finally convinced Dr. Jones that this was a poor choice of medication. Marshall was 3 when he was on this one.
Risperdal- We noticed a significant change very quickly when Marshall was put on Risperdal. He still got upset but it was more like a typical 3 yr old. It was such a RELIEF!! Originally, Dr. Jones prescribed 3 tablets a day but we started with one and loved what we saw. We kept him at one pill for a few weeks. Then he started getting extremely angry again so we upped the dose to two tablets. We are going to try adding the 3rd now. He’s been on 2 tablets a day for several months now.
Ritalin- if anything, this drug made him even more hyper than he already is and that’s saying a lot!! Again, we were told to increase the dose. We did but it still made him more hyper. We decided this was not the right choice of drug and we took him off.
Tuesday, December 9, 2008
Marshall's History As Written For His Pediatrician
Read the post underneath this one first, then you will understand why I'm posting this and what it's about. I'm warning you- it's long. : )