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ALL (Acute Leukemia) medication effects

I am looking for some help. Here are the details of the situation.

Child, a boy, 3.5 years old, Diagnosed with ALL 3 months ago. Now remission and is in Consolidation phase II. Previous to ALL was healthy/normal in development.

Every 1st week of the 3 week cycle he is taking: Dexamethazone (1-5days), 6MP (14 days),Pepcid + Prevacid (daily).

We are getting strange behavior episodes and I want to describe a typical one in details as we want to investigate this in depth.

Typical Episode:

- Starts at night after 1-2 hours of sleep for Ben. He suddenly wakes up by throwing pacifier on the floor and the blanket. Starts by telling: I don’t want it, I don’t want it…It starts slow and than ramps up to cries where he cries:

- Mommy help me and if Mommy tries to approach him to cries Don’t touch me,
- He says: I want to be alone here and if she tries to leave, he screams Don’t go, don’t leave me, mommy don't leave me
- He cries Lift me up and if she tries he yells put me down…
- He cries/screams mommy I want to calm down help me, and is he tries to touch him or talk to him he immediately pulls back and don't want to be touched.
- Sometimes he just wakes up and sit on his bed all curled up and making noises to draw attention but would not allow us to get close to him.

- He is fully awake and remembers all the dialog after the incident the next morning
- He does not try hurt him self
- He hits with he legs and fits and really angry and all jumpy
- It is not clear if something hurts him because during the episode he does not complain of pain
- He speak Russian and Hebrew and during the episode he speaks Russian to me (his mommy does not speak Russian) and speaks Hebrew to his Mommy without confusing the languages.

Talking to him does not help, soft approach does not help, hard approach does not help, leaving him alone increases his screams and staying with him leads to more of the same dialog. He refuses to be touched during the episodes (which is very unusual for him as he likes to be hugged and touched).

The length of an episode is about 30 - 45 minutes (Yesterday it has lasted from 3:30am to 5:30am) during which he screams and cries without control. It end sometimes very sudden where he says “Mommy I want to pee “ and all of a sudden he is back to Normal or ends gradually where he slowly approaches and than asks to be hugged and allows to hug him and goes back to bed again.

- When you ask him after the episode why he cried so much he said that he does not know why he cried or that he wanted to be with Mommy or with Daddy.
- After the episodes he saying very often: Mommy I love you or daddy I love you…
- During last 4 days it has happened 2-3 times per night, and once during the day.

- These episodes sometimes happen during the day and the trigger to them is very unexpected and than they last also 30-45 minutes.

- We have seen the 1st of these episodes before we were diagnosed with right BEFORE he was diagnosed with ALL. At that time we have noticed that he is pale and anemic and had these episodes typically during the day and night. Blood test led to bone marrow and to diagnosis of ALL.

We have thought that this behavior can be explained by Dexamethazone but lately we have seen the increase of these episodes 4-5 days after the end of Dexamethazone period and also these episodes started before dexamethazone was taken (before ALL diagnosis).

It does not seem to be night terror because is fully awake and remembers everything that was said during the episodes at night.

- Any ideas what could be the cause of this behavior?
- have anybody seen something like this with other kids?
- How is this should be treated?

Any help is greatly appreciated.
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replied July 18th, 2009
It is often very difficult to know if changes in young childrens' behavior are due to medications, chronic/serious illnesses, or mental/emotional illnesses, especially in toddlers. Often, however, some combination of these factors may contribute to behavioral issues in both toddlers and young children.

If you notice a consistent relationship between the Dexamethasone doses and this young child's behavior difficulties, then there is a good chance that this drug may be contributing to these events (although it may not be the only cause, as I have already stated).

You should certainly discuss these concerns with both the child's oncologist and his pediatrician. Referral to a pediatric behavioral medicine expert may also be helpful in terms of trying to identify a cause(s) for these behavioral issues, and in trying to identify appropriate interventions.

Sincerely/ Robert A. Wascher, MD, FACS
A landmark, evidence-based guide to a healthy cancer-prevention lifestyle, based on cutting-edge cancer research.
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