Grrrrrr to Doctor's...

[christie]

Man oh Man, not worth going into all the details BUT I am sick to death of Doctors that say they have sooooooo much experience with DS and this is the way it has always been done. or them saying this has ALWAYS worked when done this way before with ones with DS and bla bla bla.

WELL I have news for these Docs, Chris is Chris he is NOT everyone else

He has been on antibotics (sp?) for the last 3 months and is not a happy camper and while I have taken him to all the Docs that were reccomended they DISAGREE or one says this and I tell the other what they say and they say OHHHH NOOOOOO that can't be.

Geeeez do they realize in the meantime I have a kid that is not happy and not feeling well.

He is not a FREAKIN experiment (sp?) He is a child that is not feeling well. Grrrrrrrrrrrr to Docs

K, THANKS for letting me vent that helps me keep my sanity...

CC ~

[Claire]

Go ahead and vent anytime. We have also had some pretty bad Doctor's with "Know it all attitude: I wish they soemtimes listened to the parents. Once I told the specialist "Are you actually hearing me cause there is a difference with listening and hearing." That shook him up. They have actually intubated Adam without sedation at 9 weeks because this so called specialist beleived that children with DS do not feel pain before they are 6 mths old. As If!!! Tha!!! Because of the forced intubation he ended up going flat line and scar tissue damage in his thrachea wicht in turn made a stenosis narrowing)of 60% which made it very difficult for intubation for over 3 years. Thank God that the narrowing has grown with him and no surgery was needed to fix the problem. Now I go in whenever he has anything done to him. We are 2005 and they should be learning more and forget about the old fashion ways of thinking. I agree with you it is sooooo frustrating. Wow!! Now I've vented I feel a lot better too.

[shellk]

CC-
Poor Chris...I have to agree with you about the doctors..Amazing that they have degrees sometimes..Hope Chris feels better soon.

Hugs to ya
Michele

[Alice]

Hugs to you CC... and so sorry for Chris...

I can not believe that they could hold a child on antibiotics that long...

I always keep in mind that not all Doctors have degree with all "A"s, some of them had only "C"s...
Some of them even do not have hearts in there body for our children.
Lots of them work for money only...
I am very Grrrrr.. on that kind of "Docotors"....

Sooo sorry to hear about your bad expirience with doctors.. If we can not trust them our kids health, whom should we trust?

Wish you to find better doctors some day,
Alice

[Debbie]

Christie,

I have had simular problems with teacher's in the past but mostly those in the medical field. I don't have any answers for you but, I do understand in a way. I wonder if they say that because they don't know what else to do? What do they know anyway? They certainly don't know your son, Chris. Every child and adult who has Down sydrome is an individual and we are not all the same!

I used to be very shy and passive about things like this but I have learned to be more aggressive in my medical services. My mother used to really go to the mat with me but now that I am an adult I have learned to ask the question's and not be afraid to do so. One doctor was very understanding. She said I know myself better than anyone else so I should say what I need to say. Mom had said we hire the doctor's not the other way around! You do what you have to do.

I hope Chris feels better soon.


It is always good to vent and get that out and as you know every one else does on here!

[christie]

THANKS ;D

CLAIRE, MICHELE, ALICE and DEBBIE

for listening, understanding and your support

CC ~

[Staci]

(((HUGS))) CC. I know what you mean, doctors, GRRR, cuz I say that ALL of the time! I have problems with them ALL of the time, not listening to me, thinking they know SOOO much about Aidan, augh! It gets frustrating! Back last April when I went to his pediatritian and said HEY, look here, something is WRONG and I want an upper GI and they found an intestional blockage, well...let's just say that I am taken more seriously by his ped now. They know not to mess with this mama. LOL Now, if I want a test or something done, I am listened to and usually get it right away. I wish you luck with the doc's...I'm sorry Chris is going through all of this stuffs Big hugs to him as well. Take care.

Staci

[kimnz]

Hi CC and thanks for your welcome.

I used to be very shy but Jordan has taught me like you to be assertive and stand up for what I believe in or what I may think is right.

I too get sick of Drs and people (yes they are the same!) who put children with ds in a labled box. More than anything I wish for people to see my son for who he is, not a "down syndrome" or a boy with a disability, but "Jordan", a six year boy who just happens to have the ds attatchement.

There is so much problem with "labeling" and I think that is why our children's medical problems don't always get attended to in the way they should. Some of the Drs tend to think that certain problems just come with ds and forget to look for the real problem eg Jordan with his Hirschsprung's disease....all kids with ds have problems with constitpation due to hypotonia therefore is must be that when in fact it wasn't.

I can remember when Jordan now aged 6 was a baby. We knew before he was born that he had ds (about 11 weeks on) and when he was born I could see that there was a problem with his oxygen saturation, I knew also that there was something not right besides the ds they told me that there was something wrong with the machine and that it wasn't that low.

I asked for him to be looked at and they said he was fine. I knew he wasn't and asked for a blood test despite the fact that he was only brand new (about 2 days) in the end they relented and when they got the results they were all concerned. The rushed him into SCBU, under the lights, naso gastric tube in and talked of having to possibly transfuse him due to polycythemia (thick blood). Do you think when the paediatrican came around the next morning they aplogised??....Noton your life. They were about to walk away after checking him on their normal ward round and I said "so there was something wrong with him" they said "yes there was" and walked away.

Anyway the long and the short of it is "mother's know best" and go with your gut feeling. Yeah mothers!!! (and fathers).

Kim nz

[laurasnowbird]

Hey girl.....

I'm feeling like Debbie, maybe I'm sticking my nose in, but do they have Chris on any probiotics while they have him on these long-term antibiotics?

Long term treatment with antibiotics has a tendency to wipe out not just the bad bacteria, but also the "good" bacteria that we need for optimum health and digestion. And that can make you feel crummy in more ways than one. Where's our resident pharmacist? LOL!

Anyway, yogurt would be an example of a probiotic, as it contains live cultures that are "good".

There has also been some research the role of probiotics in assisting in immune function in people who are immune compromised:

"Immune System Stimulation. The immune system provides the primary defense against microbial pathogens that have entered our bodies. The immune system is extremely complex, involving both cell-based and antibody-based responses to potential infectious agents. Immunodeficiency can result from certain diseases (e.g., cancer, AIDS, leukemia) or, to a lesser extent, from more normal conditions such as old age, pregnancy, or stress. Autoimmune diseases (e.g., allergies, rheumatoid arthritis, inflammatory bowel diseases) also can occur due to misdirected immune system activity.

Probiotic cultures have been shown in a variety of test systems to stimulate certain cellular and antibody functions of the immune system. Animal and some human studies have shown an effect of yogurt or lactic acid bacteria on enhancing levels of certain immunoreactive cells (e.g. macrophages, lymphocytes) or factors (cytokines, immunoglobulins, interferon). In addition, some studies have shown improved survival of pathogen-infected laboratory animals consuming probiotic cultures as compared to animals consuming a control diet. Results accumulated so far suggest that probiotics may provide an additional tool to help your body protect itself."

Here's a link to the page this came from, but there is lots of good information here:

www.usprobiotics.org/


Let me know if this looks interesting to you, and I can find more info if you have questions.

[christie]

Hey LAURA girl I just now saw your post here and if Yogurt is a probiotic, we are covered here. Chris has 2 Yogurt's a day since he started eating, every day of his life He doesn't like much food BUT Yogurt (well for picky Chris it has to be Yoplait Thick and Creamy Low Fat and only certain flavors LOL ) is one of his favorites, THANKFULLY.

I will go check out the site you posted thou girl, THANKS

CC ~

[tornadoxs2]

I have to vent here also about doctors. I am very disgusted with my family doctor. When we found out Benjamin had DS i asked my family doctor if i need to take him to a peditrican and he said no all he will need is his regular well baby care checks. (granted he has no medical problems ie: heart defects ect.). I was fine with that so i asked if he had experience with DS and he then said well not really i only have 1 other child with DS. (then i got nervous). It turned out Ben was ok no medical issues, so we went along with just well baby care checks. ( OHH yeah our Doc has a physicains assistant) I asked the docotr if he would be the only one to see Ben and he assured me he would he has only seen him 2 times and one was because i fought with them for him to been seen by doctor only. the pysicans assistant likes to use herbal remedys and tells me all the time to go onto website for answers. Well if thats the case i told my husband why are we paying them the big bucks they should just pay me i am doing the work not them . HA HA HA Well now Benjamin is experincing some Bowel movement issues and they weren't doing anything for him i was furious so my husband and i went looking for a pediatrican. (1st visit yesterday) I am so mad at myself for not going to pediatrican sooner and maybe he would of had his bowel movement issued resolved by now. Well now we r on the right track and hopefully Friday Bens bowel movement issue will get better because he has an appointment with a gastrointestinal specialist. I am praying everything goes well. Charissa

[Alice]

Charissa,
I do not know why but pediatricians are better doctors than just family doctors (from my experience so far). Even my 14 y-o son without DS is having a pediatrician.
Luke, who has DS not only having a pediatrician but also DS doctor.
It is always good to have a second opinion.
Wish you good luck of finding a good doctor/pediatrician for your son.
Alice