This question and answer article is culled from posts from parents of children with Trisomy 21 on how to work with your doctor and and with hospital staff.
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I have a question regarding pediatricians. I am now in the process of trying to find a good doctor for my baby who is due in a couple of months. So far I have not found a single one who seems to know a lot about kids with Down Syndrome. Yes they know something, but I just don’t feel comfortable with a doctor who has limited knowledge. Am I asking too much? I am getting very frustrated here and would really like to have a doctor before the fact. How have all of you dealt with this issue?
Actually finding a pediatrician who “knows a lot about Down Syndrome” could work against you. If they are “old school” then what they know might be to expect lots of sickness, to expect slow development, to expect shortness, to expect sluggishness, lethargy, poor speech, protruding tongue, weird habits, etc. Since they think this is normal they can be fairly resistant to a mom who comes in and wants to do something about all this. Some see their job to educate us as to reality rather than to treat the patient in front of them. Having a ped who admits that there is much that they don’t know is like finding a ped made of gold! Most of us are educating our own pediatricians.
Kathy R. adds:
We take Danny to our General Practitioner. He has the distinct advantage of being open-minded about methods of treatment. Danny was pretty sick right after he was born, and we ended up at the children’s hospital in our state, surrounded by doctors who specialize in developmental pediatrics and even their own resident specialist in Down Syndrome. We ended up being discharged ten weeks later with Danny in pretty much the same shape as when he went in. (Well, he had the scars from the four surgeries and a Naso-Gastric tube, but he was still vomiting and was unable to take his feedings, which was why he went there in the first place.)
The doctors there also were against Targeted Nutritional Intervention. They thought it was a waste of money. Well, maybe, but they charged more than $200 a day, per specialist, to “manage” Danny’s care at the hospital. They didn’t think that was a waste of money.
Our doctor at home has Danny as his only patient with Down Syndrome, but he is open minded, willing to review the information that I bring in to him and give his opinion as to its possible merits/drawbacks. I do the research, which takes time, but it is better than having a doctor who thinks that he already has all of the answers and won’t listen to new ideas. We’ve been there, and it isn’t pretty.
Some of the moms on this list have been such great help to me with my son’s thyroid problem. Well we finally went to the doctor and I didn’t do so hot. Andrew’s TSH (Thyroid Stimulating Hormone) is 6.38 [high, outside of normal ranges]. Well she thought the level was great. I talked about the abstract Ginger sent about kids with Down Syndrome whose TSH was over 5.7 and how they stopped growing at that point. She said well he did grow this year and she said all kids with Down Syndrome have higher TSH levels.
You have to understand this perspective. Because your child has Down Syndrome they expect him to have slower than normal growth. They do not ask why—what is the underlying biological cause of this with the intent of fixing it. This is just a “Down Syndrome thing” to them. This is “normal” for Down Syndrome. BAH!! It is a fundamental difference in philosophy. I could care less how Carmen stacks up to other kids with Down Syndrome. (She does very well, I am told by people who know, but that is not important to me.) I want to know how Carmen differs from normal, figure out why this might be happening, and see what we can figure out to fix it.
Kids with Down Syndrome have indeed been measured as having a high TSH. This is not a “normal thing for kids with Down Syndrome.” Instead, this is a disease process that is more common in Down Syndrome. If the TSH is up, then by definition something is rotten in Denmark.
TSH is the brain’s response to thyroid levels in the body. It is the brain (the pituitary, actually) sensing that there is not enough thyroid hormone in the body, and demanding that the thyroid make more. So, the question for your doctor is not whether other kids with Down Syndrome have high TSH, but why do they have it, and what can be done to correct it? If they are correcting it to high-normal (or in this case flat-out high) that is probably not good enough.
If a child was brought in to her office, and they had higher than normal lead levels, would that be OK because their father was a plumber and all plumber’s kids have higher exposure to lead? Of course not. It means something is wrong, and that these kids are in a risk group. Same thing with TSH and Down Syndrome. Kids with Down Syndrome are in a high risk group. They need to be watched closely, and treated more frequently than the general population.
So, he grew this year. Did he grow normally? Or did he grow at the stunted rate of the Down Syndrome growth chart, which is likely developed using a bunch of hypothyroid kids? This is the goofy logic that we have to deal with. Here’s an analogy. We all know that the end stages of cancer often are accompanied by dramatic loss of weight. So, do we have a special cancer weight chart? If I have cancer and weigh more than 85 pounds, does this mean I’m overweight? Of course not. It is a negative outcome of a disease process. Why should growth in Down Syndrome be treated any differently?
However she did agree to raise his Synthroid medication a little bit. Instead of one pill he will take one and one half pills and go back in a month and have his TSH levels checked again. But I am also concerned that his zinc level is too low.
It is well documented that zinc deficiency will cause thyroid problems, and that zinc-deficiency hypothyroid will be improved with zinc supplementation. There is also a lot of medical literature supporting documenting low zinc levels in Down Syndrome. Here’s what I would do. Wait the month and let your endocrinologist take her blood tests. Then go to your regular pediatrician and say that you have reason to believe that your child may be zinc deficient and that you would like to have his zinc level tested. Here’s the key phrase to drop—because you intend to increase his zinc supplements and you do not want to risk over-supplementing him. Say that you need hard data from blood tests to work from. Don’t ask for permission to increase zinc supplementation. Tell them that you are going to do this, and that you need them to help you do it safely. This ought to get you a zinc level.
If you go in there and throw yourself at their mercy, doctors will take charge. If you walk in there in charge, asking their professional opinion along with all the data you need to make up your own mind, they treat you differently. They may not like it, but most of them will respect you.
How do you all talk so medically that your doctors listen to you?
Ginger shares her experience:
I must admit that I have learned to speak in terms that doctors understand. I have learned which medical journals will get my regular pediatrician’s attention. And when push comes to shove, I operate under the rule that this is my child, not his. I am the primary decision maker, and he is my trusted advisor.
I did not walk in to this whole situation knowing all this stuff. I had a very basic understanding of how the body worked from my pre-nursing studies, and I’m just a fiercely independent thinker by nature. We have all had our pivotal experience being buffaloed by medical people, and mine came when Carmen was three months old.
The hospital staff wanted to give Carmen iron supplements because her blood count was low. It was then that I realized that I was going to have to watch these people like a hawk, and I was going to have to learn all this stuff just to keep her safe. I didn’t know which blood tests to run, but I knew in my bones that this was wrong. So, I sat in the hospital room and put calls in to my regular pediatrician, to Dr. Leichtman and to the obstetrician that advised me to keep Carmen away from iron due to all the blood transfusions. As they called me back, I asked them which tests I should ask them to run, and why. Between them all, each with his little piece, I got the right answers (and the right questions) and an education. When that poor doctor came back into the room, he met Scarlet O’Hara standing on the hill, fist in the air, shouting, “I will never be buffaloed again!!”
Actually, I wasn’t nasty to him. I just started asking some tough questions which threw him back on his heels a little bit. I learned from the doctors I called that there were indeed tests that could be run to assess iron status and that if the anemia was not iron-related, then iron supplements were not warranted. So I asked the hospital doctor if he had done a ferritin reading along with a standard iron panel (the right tests to assess this) and once those were done, lo and behold, talk of iron supplementation went away.
And, I didn’t learn it all overnight. I have a list of topics that I want to investigate. As problems show up, I delve into those subjects intensively. First came thyroid. Then came folate status. Now we’re on to immune system function. I can’t tell you squat about a lot of the things that other parents are investigating. But as we all share our pieces, everybody becomes smarter. For thyroid, go to Mary Shoman’s thyroid site. Most of that stuff is in real-people English, and it will help you understand thyroid issues.
Actually, take heart. You are aware that thyroid is a big issue, and you are grappling with being able to speak to your doctor in a sophisticated way about it. Many parents don’t even know about this stuff. Their doctor says the numbers look good, and that’s all that ever transpires. And, face it, you were able to communicate to her well enough to get an adjustment in medication, right? That’s what’s called a good old “therapeutic trial.” I learned that one from the Wilson’s Syndrome book!!
It is a fine line to walk with doctors. You don’t want to make them angry, but what difference is there between having no doctor and a doctor who fights you every step of the way and won’t treat your child? Part of the trick is learning to speak their language, and educating yourself on the issues.
Have you asked for a referral at your local health food store? Sometimes they know of doctors who are more willing to look at alternatives. Any doctor can prescribe thyroid medication—the question is who will. The only reason you are at a pediatric endocrinologist is that your regular doctor doesn’t feel comfortable to treat. You may not really be at the end of your options; you just may have to dig a little.
But you know more than you are giving yourself credit for, and you have more options than you probably realize right now.
I have a few questions for when Kristina goes to her clinic appointment. What kind of things should I ask about? I don’t think I have ever been told about her blood levels. This Einstein-Syndrome list has really opened my eyes. I want to know what are the best things I can do to help Kristina.
I would suggest asking for a CBC (Complete Blood Count, this will tell you a lot!) and a full thyroid screen. If she hasn’t had a full blood chemistry for a couple of years, including iron levels and liver enzymes, that would also be a good thing to ask for. And, when the lab reports come back, get a copy in your own hot little hands. This will alleviate hearing, “She’s just fine,” when she’s on the bleeding edge of abnormal. Lab reports are not really all that difficult to read. You get the measured value for each thing, as well as the lab normal ranges. You can see for yourself if she is inside normal range or not. And if she’s on the hairy edge, that tells you something as well.
Once you see what is out of range, you can visit a number of websites which will explain what these things mean. I would also suggest asking for zinc and selenium levels, and if she is on vitamins of any sort, be it Targeted Nutritional Intervention or Flintstones, you might want to get her vitamin A level checked.
Do you get a copy of the report that they send to your doctor from the clinic? That might be a good thing to ask for if they don’t automatically send you a copy. You can get a lot of information from that too.
Related Pages on This Site
As we work to keep our children with Down Syndrome healthy, it is wonderfully helpful to build on the research and experience of parents who have gone before us. The health of our children is a major topic on the Einstein-Syndrome list. The discussion above is selected posts from the list. This does not constitute medical advice, but only the experience of other parents dealing with Down Syndrome.
Remember that every child is different. What works for one child may not work for another. The ideas presented here are sometimes out of the medical mainstream. Your doctor may not endorse them. We strongly advise that you use our discussion only as contributing data for your own research, consult with appropriate medical professionals and make your own decisions. If, after doing your research, you decide to follow a practice that is out of the medical mainstream, carefully monitor your child’s progress by appropriate medical testing and oversight.