Help outfit Michael, Sarah, and John

Thursday, April 12, 2012

Keith and Iryna

Keith went to the GI specialist earlier this week. Keith has hypo-tonic cerebral palsy - which means low muscle tone. Keith's CP is mild, really only affecting his intestines/colon not being high tone enough to move his food through without help. He's on miralax 3x a day and he is still backed up. I thought I would check and see if there was something else wrong. He met with Dr Khubchandani once before and he ordered a barium enema (nothing wrong) and blood work(all came back fine). So he now is prescribing a chew-able table which will help the intestines work better. He said it shouldn't be a long-term solution, as the intestines would become dependent on the medication and not work on their own. I am hopeful that this will help him - no progress thus far. 

In August 2010, I filled out paperwork to have Iryna screened by Dr Childers, a pediatric diagnostician in Jacksonville, FL. A year later, Iryna began the screening process. We went up to Jacksonville twice for her to be evaluated. Tuesday of this week - we drove up and got our results. At this point in the process, I began to wonder if it was even worth all the trouble, but I am happy to say that we learned a lot from Dr Childers. Iryna has a mild case of mental retardation. Basically, if the average person is driving at 100 miles down the road, Iryna is driving at 70 miles per hour. Iryna is mentally the age of 4 years old and I should treat her as a 4 year old. She does not have ADHD - in fact, there is nothing wrong with her attention span. Her hyperactivity is simply a part of her personality - all Iryna. Iryna struggles from anxiety and impulse control. Her current medication of vyvanse, according to Dr Childers, is enough to medicate a horse and he says it is sedating her. I don't see a sedative effect in Iryna, but I do know that she's not making much progress academically. He instructs us to give her a very small dosage of Prozac. We have the report and are currently in the process of seeing a new psychiatrist for Iryna, so hopefully we can get their opinion and begin making the change.

I have a hard time with the label "mentally retarded" and Tyler thinks it's because it carries a stigma for me. To me, she's just Iryna and a very sweet, bubbly, highly empathetic girl. Tyler and I feel very hopeful for Iryna. She has been blessed that she will one day marry and have children. I don't understand how all that will happen, but God knows his plan for Iryna and I will do my part in that plan. I know that many people who are slow still marry and have happy lives. Dr Childers did also say that most likely her mental retardation is hereditary. I don't know anything about her father and her mother drinks a lot, so I guess we won't be able to confirm that. Dr Childers also wants for us to have her seen by a genetics doctor. He thinks that her face suggests a syndrome, but he isn't qualified to know which one. He didn't confirm that she has FAS, although he wouldn't be surprised if she did. He also said that many people with FAS are very bright and that the mental retardation doesn't come from the FAS, which surprised me. 

This afternoon, I am going to Orlando to see Dr Ramos - a pediatric cardiologist for Calvin and Silas. I will update when I have more information about their health. 


Diana said...

Hopefully you have better luck with the cardiologist than the other doctors.

Miralax...ugh...we've been that route. It never worked for us, matter how much they upped his doseage. It was kind of like putting 9 pregnant ladies in a room and expecting them to deliver a baby in one month. Have you tried some digestive enzymes? You can get those OTC with the supplements or at health food stores. You can even drop them in and blend them up with a smoothie if he can't swallow the pills. They help a lot. A combination of olive oil and orange juice (equal parts for a couple weeks if he's really impacted and needs a clean out) and then going down to 1:4 or so to keep things moving. Give it to him at night before bed and he should be able to go in the morning. Drink it with a straw and stir it as you drink and it goes down ok. You can use the light tasting olive oil or they make some lemon infused ones that might taste a little better. No matter which one you use, it works WAY better and is WAY healthier than miralax...and heaven forbid the machine lubricant and wood sealer called mineral oil that is often prescribed when miralax doesn't do the job.

Now for the big UGH!!!! With all due respect, Dr. Childers doesn't know what he's talking about. 1) she needs another ADHD eval. She was institutionalized and you know her birth mother drank. Fetal alcohol exposure causes ADHD. So does lack of early stimulation and trauma. 2) Oh yes, FAS does cause mental retardation (which I hate as well and my kids have been slapped with as well.) The areas affected and level of damage depend on what stage of development the fetus was at when the exposure happened. It's quite possible to have a child who has all the physical markers, normal IQ, and lagging speech who's mother only had a couple of drinks during pregnancy. By that same token (and often even more likely) it is also very possible to have a kid who looks totally normal, but has sificant learning disabilies, retardation, memory issues, and ADHD because their mother drank like she owned the salloon all during pregnancy.

Reality is that only 15% of kids present with any physical markers. We took our guy to a geneticist and even he wouldn't Dx FASD because there are no markers. If they're not there and very obvious, you likely won't get a Dx there without a lot of really expensive tests. But, as my son is getting older, the effects on brain function, learning, motor skills, ADHD, and lots of other thigns are very apparent now. They clearly fit FAS...and yet we've heard the hereditary mumbo jumbo as well. Unfortuately, the damage done by alcohol is permanent. They can learn to adapt to it and learn around it, but it isn't curable.

Anonymous said...

I agree with Diana. What she didn't say is specifically the "retardation" label. The word basically means slow or behind. If she's at a 4 year old's level of development, then she is behind. But that does not equate to "stupid" or "hopeless." And Iryna is NOT hopeless! She and Keith have both made tremendous and significant growth since their adoption. Maybe it's not to the level or at the rate you wanted, but you have to go at their rates. And they are dealing with health histories that are incomplete, and maybe no one knows where these issues come from or how the can be addressed, but as their mother you get to be part of the miracle that is the changing of their lives. Wow! Be grateful that you get to watch this change take place.

Try not to take offense to the label. It will do more harm than good. You'll be upset, the kids will sense you're upset, and nobody is going to remain calm or progress at their capable rates while being upset or angry, right or wrong. Simply explain (only if you must) that there are some delays, and that you're working to catch them up and that you're definitely noting progress. Tell that to yourself until you believe it and it becomes your natural response.

I think that many times labels are more trouble than they're worth. It ties one up into a belief system (which may be flawed), and channels one into living the belief system and making it true. It is nice to understand where certain behaviors likely come from, but knowing where doesn't actually get us anything. It's knowing what to do about it that defines us. I have no doubt that any and all 5 of your children will go far. It's because you and Tyler are caring, concerned, and engaged as parents, which is what everyone needs.

Keep it up.

Anonymous said...

I sure hope that Dr Childers included an assessmnet of adaptive living skills (like the "Vineland"). A diagnosis of MR requires an IQ below 70 AND corresponding adaptive deficits. Otherwise you have a slow learner on your hands. Many people with mild MR or slow learner IQ become independent, marry, and work, etc. And yes, FAS can certainly cause these challenges! If it helps any with the "R" word- this diagnostic term will likely change next year to Intellectual Impairment or something similar. Too much stigma has become attached to MR.