Still fight­ing her way through a dif­fi­cult di­ag­no­sis

Woman learns how to over­come chronic con­di­tion’s pain with opi­oid-free treat­ment

The Enterprise - - Business - By JOHNATHON CLINKSCALES jclinkscales@somd­news.com Twit­ter: @JClink_MdINDY

On April 26, 1999, Tijuana Adams of Wal­dorf wel­comed a baby girl named Kait­lyn into the world, not know­ing that her daugh­ter would need a life-sav­ing bone mar­row trans­plant sev­eral years later af­ter be­ing di­ag­nosed with sickle-cell ane­mia.

“At seven months preg­nant, I was told that she was go­ing to have sickle-cell ane­mia,” Tijuana Adams said. “That day was very dev­as­tat­ing. Within the next cou­ple of weeks, I did tons of re­search on sickle-cell ane­mia so that when Kait­lyn was born, I was pre­pared on how to treat her and take care of her.”

As a young child grow­ing up with the dis­ease, Kait­lyn Adams lived with ex­cru­ci­at­ing chronic pain ev­ery day. Doc­tor af­ter doc­tor couldn’t give her fam­ily an­swers on how to stop the pain, other than pre­scrib­ing un­usual and near-deadly lev­els of mor­phine and opi­oids.

“Through­out Kait­lyn’s life, she dealt with a lot of pain. Kait­lyn was in the hos­pi­tal at least two times a month, deal­ing with pain crises even as a baby,” Tijuana said. “The worstcase sce­nario that we did have was [when] Kait­lyn was on a ven­ti­la­tor for over a week in the [in­ten­sive care unit]. That was dev­as­tat­ing be­cause we didn’t know whether it was go­ing to be a good thing or bad thing. But she sur­vived and came out of that.”

With the coun­try be­ing in the midst of an opi­oid epi­demic, the Adams fam­ily was seek­ing a way out but didn’t know where to turn. They thought a bone mar­row trans­plant was a log­i­cal so­lu­tion to end Kait­lyn’s pain.

Hav­ing been a pa­tient at Chil­dren’s Na­tional Med­i­cal Cen­ter, Kait­lyn was trans­ferred to Johns Hop­kins Univer­sity Hos- pital, where doc­tors had ini­tially told the Adamses that she would be taken off the opi­oids as Kait­lyn’s in­take was well over the rec­om­mended dosage.

“Kait­lyn had been ab­sent from school so much,” Tijuana said. “Five years ago, we were in­tro­duced to what is called a half-match bone mar­row trans­plant. Kait­lyn was a can­di­date for [that pro­ce­dure, which] was done at Johns Hop­kins.”

Un­for­tu­nately, Kait­lyn’s body re­jected the trans­plant and she went back to hav­ing se­vere chronic pain.

“Kait­lyn was on so much pain medicine that a nor­mal per­son would not be able to han­dle,” Tijuana said. “That was her every­day life. Even­tu­ally, her body got im­mune to it and she got im­mune to it. Be­cause of the con­tin­ued pain, she con­tin­ued to get more pain medicine. Kait­lyn was in pain ev­ery sin­gle day.”

“It’s hard to put into words,” Kait­lyn said. “It was a very de­press­ing time and it felt like I had no hope — my body was hurt­ing ev­ery day, all day. My mood was al­ways de­pressed. I wasn’t able to go out and do things and I just didn’t have hope for my fu­ture. It felt like I was suf­fer­ing in si­lence.”

Kait­lyn said be­ing on so many opi­oids made her feel drowsy and out of her right mind. In ad­di­tion to deal­ing with de­pres­sion, she be­came short-tem­pered and couldn’t get a grip on re­al­ity.

“I slept most of the days and as I look back, I see how it changed my attitude,” she said. “I was ir­ri­ta­ble and did feel like a zom­bie some days. It was just like [life was] mov­ing in slow mo­tion. It af­fected me a lot.”

But for­tu­nately, that all changed when doc­tors in­tro­duced the Adamses to an in­no­va­tive, opi­oid-free treat­ment ap­proach at the Kennedy Krieger In­sti­tute in Bal­ti­more. Pe­di­atric health pro­fes­sion­als de­signed a multi-dis­ci­plinary pain re­ha­bil­i­ta­tion pro­gram that pro­vides med­i­cal care for chil­dren and teens liv­ing with chronic pain, of­fer­ing the tools needed to con­quer their hard­ship and take back their lives.

As one of the few pro­grams of its kind in the coun­try, Kennedy Krieger’s pain re­ha­bil­i­ta­tion pro­gram of­fers a full con­tin­uum of ser­vices for the eval­u­a­tion and treat­ment of chronic pain, and also func­tional dis­abil­ity in chil­dren and young adults. The in­ter­dis­ci­pli­nary ap­proach in­cludes cog­ni­tive be­hav­ioral ther­apy, phys­i­cal ther­apy, oc­cu­pa­tional ther­apy, non-nar­cotic pain med­i­ca­tions and in­ter­ven­tional pain pro­ce­dures.

“It wasn’t re­ally a hos­pi­tal set­ting — you weren’t in your robe, hooked on to ma­chines all day and couldn’t go out. It wasn’t like that at all,” Kait­lyn re­called. “At Kennedy Krieger, they kept us on a sched­ule.”

Dr. Suzanne Ry­b­cyn­ski, the med­i­cal direc­tor of Krieger’s in­pa­tient pe­di­atric re­ha­bil­i­ta­tion unit who treated Kait­lyn for a month, said a main as­pect of the in­ter­dis­ci­pli­nary ap­proach is cre­at­ing a plan that’s tai­lored to each pa­tient’s spe­cific needs. There’s con­stant com­mu­ni­ca­tion be­tween the treat­ment team, the pa­tient and the pa­tient’s fam­ily so that in­ter­ven­tions can hap­pen quickly.

Pa­tients in the pain re­ha­bil­i­ta­tion pro­gram range from 6 to 18 years old. Krieger staff col­lab­o­rate with re­ha­bil­i­ta­tion ther­a­pists to help pa­tients grad­u­ally in­crease strength and en­durance, which Ry­b­cyn­ski said in­creases their over­all mo­ti­va­tion.

“Our pro­gram re­ally fo­cuses on the big pic­ture of an in­di­vid­ual with chronic pain,” said Ry­b­cyn­ski, a Parkville res­i­dent and mother of four in­clud­ing two stepchil­dren. “Be­cause I treat chil­dren who need to be weaned off of opi­oids, I think one of the things we can do is re­ally pre­vent them from pro­longed cour­ses of opi­oids. If you have a lot of kids start tak­ing pre­scrip­tion med­i­ca­tions in ways that are not in­tended for their use, they can just get ad­dicted to it. So not giv­ing as much is a way for pe­di­a­tri­cians, sur­geons and peo­ple who treat pain in the acute set­ting can make changes to pre­vent that in kids.”

The pro­gram also of­fers fullscale eval­u­a­tions, out­pa­tient ther­a­pies, day treat­ment, in­pa­tient re­ha­bil­i­ta­tion and in­ter­ven­tional pro­ce­dures un­der se­da­tion, which are of­fered at only a few hos­pi­tals na­tion­wide, ac­cord­ing to a press re­lease from the in­sti­tute.

“One of my cop­ing skills is to al­ways be oc­cu­pied when I’m feel­ing pain,” Kait­lyn said. “I think it’s a fam­ily mat­ter when you’re chang­ing some­one’s life­style. My par­ents had to get used to not al­ways ask­ing me, ‘Oh, are you in pain?’ so, that al­lowed my mind to be fo­cused on some­thing else. It was very good that they in­volved the whole fam­ily.”

Kait­lyn par­tic­i­pated in the pro­gram last year for about four to five weeks, start­ing at the end of Fe­bru­ary to March. When she came out, Tijuana said her daugh­ter did a com­plete 180 as Krieger staff re­mark­ably nursed her back to health bet­ter than ever be­fore.

“Our plan, which was suc­cess­ful [in treat­ing Kait­lyn], was to wean her off re­ally high doses of nar­cotics. She was on doses that would be life-threat­en­ing if an or­di­nary per­son took them out of the blue,” Ry­b­cyn­ski said. “We had to work to­gether with our whole team to help her get off the med­i­ca­tion while do­ing phys­i­cal ther­apy, oc­cu­pa­tional ther­apy, ed­u­ca­tion, child/life ther­a­peu­tic re­cre­ation and lots of psy­cho­log­i­cal sup­port.”

“They weaned her com­pletely off of all of her pain medicine,” Tijuana said. “The only thing Kait­lyn is cur­rently tak­ing, and when she com­pleted the pro­gram, is Tylenol.”

For Ry­b­cyn­ski, she said the pro­gram’s goal is to ad­dress pain while en­sur­ing kids can re­cover in a life-chang­ing way.

“Be­fore she came to us, she had a re­ally hard time sleep­ing and then she had no en­ergy be­cause she couldn’t sleep,” Ry­b­cyn­ski said. “It all sort of worked to­gether to help her level of ac­tiv­ity and re­ally tol­er­ate the de­creas­ing of her med­i­ca­tion.”

As for Kait­lyn, her mother said she now has more en­ergy, eats well, spends qual­ity time with fam­ily and is even ex­er­cis­ing. Thanks to be­hav­ior ther­apy which helped her learn dif­fer­ent cop­ing skills, Kait­lyn is now able to man­age her pain and live a nor­mal life.

“I can see the dif­fer­ence from now be­ing off of the med­i­ca­tion and look­ing back to the days when it felt like I couldn’t get out of the bed,” Kait­lyn said. “I feel like I im­proved so much.”

Now that the 19-year-old has the tools needed to con­quer her chronic pain and take her life back, Kait­lyn said she highly rec­om­mends the pro­gram.

SUB­MIT­TED PHOTO

In this 2013 photo, 14-year-old Kait­lyn Adams of Wal­dorf smiles as she sits up­right in a hos­pi­tal bed.

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