Doctors Doctors Doctors??????

[andrewsmom]

I know someone here will be able to help me, or at least point me in the right direction. ;D
Andrew has quite a few doctors. Not that I really want to add to his growing list, but I am confused as to which doctors would be best for him. I bought a new book and began to read it and I was stunned by how many tests Andrew has not recieved yet. For example, The book says that children with DS should have their eyes tested frequently....ummm... Andrew has NEVER had his eyes tested. It also states that children with DS should have their hearing tested every 6 months until they are 3.....Andrew had his hearing tested when he was an infant and has never been re-tested again.
Geez...I feel like I am dropping the ball here, kwim? We have an appointment with his regular Ped in 2 weeks and I'm not sure if I should lay into him for missing these important tests or not. I have to tell you I LOVE this PEd. He is the Ped for all my kids but I am starting to think Andrew may need another Ped who is more familiar with DS. I have also heard that some people have developmental peds for their kids. Should Andrew have a Dev. Ped too?

Any Docs that specialize with DS are about an hour away from me. I honestly don't mind the ride at all but, what if Andrew is sick? I don't want to have to drive him an hour away to see the doc and then an hour home again kwim? So I would like to keep his main Ped local, but I feel like I need help from some other doc to either keep tabs on my current ped to make sure everything for Andrew is getting done, or to help get all these things done when they need to be done...does that make sense? I don't even know what kind of Doc I need. But I do know that I need some help here fast. If it wasn't for the internet, and places like Unomas, I wouldn't have even known to ask his Ped for a referral to an ortho for his AFO's. The info was never offered to me from the Ped. Aggggggg.....

So, to make this already too long post shorter......could any of you point me in the right direction as to what type of Doc I should have for Andrew, or how you all keep up with what test needs to be done when etc. Any suggestions would be appreciated as I feel like I am REALLY dropping the ball on my poor little guy.
Thanks!!!!
-Trisha

[Chris]

Great post, Trisha. I just asked a similar question in the medical section about the importance of a physiatrist. It seems to me that some physiatrists do keep you informed of all the medical testing that needs to be done on your child.

Sarah went to the cardiologist today and he asked me a long list of questions like how is she doing in school, has she been to the dentist, has she seen an ENT and eye doctor, is she getting ST, PT, OT, etc. I don't know if all cardiologists do this or if mine just wants to make sure Sarah is getting all her needs met.

Chris

[CC]

this may help you, maybe give a copy to your Ped, just a thought

www.denison.edu/collaborations/dsq/health99.html

and

www.ds-health.com/recordsheet1.htm

and

for older ones look at this...

www.ds-health.com/recordsheet2.htm


CC

[hannahph]

I used to worry about the same thing. I think you have to realize some of our kids have major issues and I guess they do not want to miss anything. I think it's ok to wait a bit on some things- if basic screenings are ok at pediatrician and you are not noticing issues I would not be panicked.I think these are things that we need to do but not an absolute must do now. Hannah had her eyes examined starting at about 2 years butI noticed and issue. We did not start doing hearing exams until she was about three I think. Some people swear by a developmental ped but we don't take Hannah to one. Our ped. is pretty knowlegable about DS and the only dev. ped in the area is a jerk.I think the big thing is to educate yourself and refer to the DS healthcare guidelines but don't worry if they are not followed to the letter. I do know thatsometimes I have to push a little harder to get things done though.

[Pat]

I'm guessing that the charts CC sent you to are the ones I would have sent you. You keep one copy for you, one to your ped. John-John's ped has it stapled right inside the front of his records & checks it every time. I did change MDs in the beginning but only because they looked at John-John like he WAS DS not his name is John-John and he is an INDIVIDUAL that happens to have DS. I have found her just as attentive to the chart & if I say I need a referal for ortho,..... it's never a problem. I want it, they write it
Pat

[Valerie]

Well, I may be in the minority here, but I look at those as guidelines and don't necessarily follow them to a T!

Like the eyes. I did ask our eye doc when Nicholas was about 1 when he should be seen. He said if I hadn't seen any issues with the eyes (turning inward, jiggling, vision problems, etc) then there was no rush. And I really don't see a problem with his eyes.

The hearing tests we do every 6 mos (set up through EI) because he had several ear infections and I wanted to make sure there wasn't a hearing loss or fluid build up.

I did have his TSH checked, but only because he was going to be under general anesthesia so I asked if they could while he was asleep. I wouldn't have pushed it if I'd had to take him in awake, because I saw no signs of hypothyroidism.

He does see a cardiologist because he had AV canal defect, and we still do yearly checks. He has not seen an ortho, because he didn't seem to have any problems there.

Havn't seen a dentist, because he has all his teeth in the right spot and they look very good for now, and to be honest, I dread the dentist because I don't think it will go well!

So, anyway, in our case, I kind of look at where he is and what I think he needs. If I see new issues, I would never hesitate to add another doctor to our list, but until then...

I do plan on having the neck x-ray done after he's 3, though.

[logansmom]

I don't know if this will help, but here's what we do -- we use both our regular pediatrician and a dev. ped. who specializes in Down syndrome. We go to the regular ped. for all of the regular stuff like physicals, illnesses, etc. Once a year we take Logan to a Down syndrome clinic at a major children's hospital about an hour and a half away. That's where he sees the dev. ped. All results of any additional tests run by the dev. ped. are automatically sent to our regular pediatrician. In addition, the dev. ped. is the one who recommended Logan's ENT, opthalmologist, cardiologist, etc.

Kim, Logan (Ds - almost 3 ) , and Carson (almost 6 months)

[momofrussell]

I guess I kinda do what Kim does. We have a reg ped and we just recently went to the DS clinic and see a Devel ped which we should see about once a year.

Ok.. I did NOT know about "ds check lists" or anything of the sort for years. I only knew of the DS growth charts. Since Russell was born with cataracts and had reflux since birth... we were frequent guests of the Ped GI and Ped Opth offices.. but other then that.. I looked and treated Russell like Regan.. he went to the Ped for his well appts and when he was sick. I was and am still ok with that. I now know about the charts.. but I still just see our ped and if we think something needs to be checked or hasn't in a while... we do it. I think the "checklists" are great and all.. but for me... I'd be seeing a doc a month if I added the docs I NEED to see with him. So.. I just do with Russell like my girls. I also keep an eye on him for things out of the ordinary incase of something. Kevin and I are VERY ok with this. As far as thyroid, hearing, ect... we do it when we can...really. Russell has only had one ABR when he was probably a couple years ago.. he will be 8 next month and JUST had another test.. not ABR.. but a hearing test when we went to the ENT. First time to the ENT mind you.
I avoid extra copays like the plague let me tell you! LMAO

I kinda sound like I don't care.. but I do.. I just don't get totally caught up in that DS checklist. Our ped we have now is great. He is up on what should be done but he doesn't force it on me. I like it this way!

A.

[ethansmammy]

Hi Trisha,

I used the www.ds-health.com/recordsheet1.htm that CC listed in her post. I gave a copy to our regular family doctor who was quite happy to go a long with what it recommended. However a couple of the specialists he referred us to were not very good, so I made an appointment with a ped. who specialized in DS and got referrals to excellent specialists. We didn't go and see this ped. for anything else just because she was too far away - but it was worth the initial visit to get the referrals we needed.

Elaine.

[andrewsmom]

Thanks for all the links.....what great info!!! Like A, I also have not heard of DS checklists but I have heard and seen the DS growth charts.
After reading all your replies I think I will look into a Dev Ped for Andrew. If we only need to see him/her once a year or so, I think that may calm me down as to whether or not Andrew is getting all the tests he needs done. I don't want to miss anything that could help him.
Thanks guys!!!
-Trisha

[kristin]

Its interesting reading through these posts; I was doing the mental checklist of tests we've done -- hearing, vision, TSH, cardio, ortho, etc.

We have a pediatrician whom I respect and value the opinions of, but he's obviously influenced my decision to have/not to have some of these tests. His opinion is that the TSH is relatively "easy" to get done, and can give information about subtle changes in the state of the thyroid from year to year, so we always do that one, even though we don't see any overt signs of hypothyroidism. However, we were going to start hippotherapy this summer, and I asked him to order the AAI (neck stability) test, and he discouraged us from it. He does not think that the results are accurate, due to many factors, (kid wiggliness, angle of xray, just the right position being hard to attain) and thinks that it is psychologically hard on the kiddo, because of the restraints used during the xray and the trauma of being put in sometimes unnatural positions during the xrays. So, we have never done that one.

I guess that the thing to do would be to find a doctor that seems highly knowledgable, know what tests are/aren't available, and then decide based on your kiddo what you want to do. As mentioned here many times before, trust your "mother's instinct" and make your decisions based on that. Its a hard balance to maintain ~ we want to be well informed and proactive, but don't want our kids to feel like 'guinea pigs' either.

[rickismom]

Be sure to give a copy of the checklist to your doctor, and keep one for yourself as well.
Also keep a record of tests, blood checks, therapies (when started, with whom, when changed to someone else, etc.), and major milestones. This will will help you remember later important things.

For regular care you need a good peditritian who is NEAR to home, easy to reach, and who treats your child as a PERSON. You don't need the big specialists all the time, and since younger children really tend to be sick a lot, due to their narrowed airways, you don't want to have to travel far for each and every little thing.

[momofrussell]

Be sure to give a copy of the checklist to your doctor, and keep one for yourself as well.
Also keep a record of tests, blood checks, therapies (when started, with whom, when changed to someone else, etc.), and major milestones

Oh.. you mean I should be doing this? LMAO!!!!!

A.

[CC]

"However, we were going to start hippotherapy this summer, and I asked him to order the AAI (neck stability) test, and he discouraged us from it. He does not think that the results are accurate, due to many factors, (kid wiggliness, angle of xray, just the right position being hard to attain) and thinks that it is psychologically hard on the kiddo, because of the restraints used during the xray and the trauma of being put in sometimes unnatural positions during the xrays"

KRISTIN, no child can partake in Hippothearpy without having the neck stability test or shouldn't, just thought I would share that Not sure what your Doc is talking about as Chris has had this test done and I assure your there were NO restraints used during the X-rays at all and the positions of Chris for the X-ray were not odd in any way. Anywho just thought I would share that with you

CC ~

[kristin]

Christie~ Not to argue with you, because I believe what you are saying, but several of my friends have had their kids tested for this and the xray tech used a papoose and backboard. I don't know how old your boy was when they did this, but my friends' children have all been between 2 and 4, and I assume the "restraints" are for stabilization on a wiggly little person; the xrays would be no good if the child wasn't perfectly still. My friends have all described the process as "traumatic".

Our doctor said he will sign off on the release form without the test, and the riding center will accept that, so hopefully we'll be able to start hippotherapy anyway. The whole thing seems a little silly to me regardless, because if Cole falls off of a horse, I think he would likely be hurt in some way, with or without AAI. And of course, if I really thought there was a risk of this happening, I wouldn't put him on a horse as a four year old anyway.

Thanks for posting...