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Other family members who complain about your kids' dr appts


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(Super-long, sorry) Does this happen to anyone else? I feel so alone at times. My family is mostly supportive but they occasionally become very vocal about how often our kids see doctors or specialists. My mother actually accused me once of making up stuff and taking them to doctors.

 

The problem is that my kids DO see a lot of doctors. My oldest has autism and is non-verbal. She's considered severely impaired. She also wears bifocals (special doctor) and has recurring eye infections. Since we're closing in on puberty she has a gynecologist for special needs kids. She's a mouth breather and it's causing dental problems so she has a dentist, oral surgeon and orthodontist. We're going to try some braces to help her overbite but we don't anticipate doing a full mouth due to her autism. My family (mother/father, sister) are very vocal against the braces. (Chances are good that she'll need surgery on her mouth as she has teeth about to erupt through the roof of her mouth -they are impacted right now). She sees a psychiatrist for anxiety. She's having tonsils/adenoids out soon to help with the mouth-breathing. At the ENT visit, she failed the hearing test and they said she needed tubes (fluid in the ears, negative pressure, flat something). She has horrible eczema and every other year or so we see a dermatologist when I can't get it under control.

 

My middle daughter has celiac disease (diagnosed through both bloodwork and biopsy). She needs braces and sees a dentist, orthodontist and oral surgeon. She's had several baby teeth and a few permanent teeth pulled to make space. She sees a gastro for the celiac. She is significantly low weight (but healthy) and our gastro ordered several tests last year to check on bone growth, nutritional absorbency, etc because of it. She has weak bones but takes calcium daily. She's actually our healthiest child.

 

Our youngest is the one that our family is most vocal about. We think she has Irritable Bowel Syndrome. IBS runs in our family and she had mysterious stomach pains, vomiting, diarrhea, lethargy, etc for nearly a year until we pulled her out of school. She still takes one pill daily for stomach cramps. She has a lot of trouble before good or bad events (doctor appts, Christmas). She sees a gastro for those and they did a biopsy last year but nothing definite came up.

 

At our last well visit (this past week), she failed her hearing screen repeatedly for her left ear. (She failed it last year also but we thought it was just a fluke and didn't pursue further testing). Additionally, there is something going on with her feet. She's an over-pronator and has flat feet. We're taking her to a foot doctor in two weeks. She has a hearing test next week. I'm scared to tell my family about either of these appointments.

 

Along with all of this is a basic lifestyle that our family has adapted that my extended family (and sometimes my in-laws) believe is over-kill. We all eat mostly gluten free. My oldest has significant personal care that needs to be done on a daily basis (bathing, brushing, flossing, medication). Homeschooling for our middle and youngest daughter. I'm a big believer in outside activities, so they do theatre, soccer, etc; whatever I can get them into that they want to try.

 

I feel that every single appointment we make is important. Most of my appointments are at the suggestion of our pediatrician or another medical professional. My stress is at an all-time high as I'm preparing for my oldest (who has limited comprehension) to have surgery to remove tonsils/adenoids and put in ear tubes. The surprise of my youngest needing follow up appointments for hearing and feet has inched it higher. For the first time ever, I actually told the girls to not tell anyone about the upcoming appointments. If it turns out to be nothing, I'd rather them not know. If someone says anything to me, I'm afraid I'm just going to blow up and say things I shouldn't.

 

Can anyone offer suggestions or commisseration? (I probably didn't even spell that right... *sigh*)

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I'm sorry. Your plate is so full, I don't know how you do it all. I can see where it would be terribly frustrating for your loved ones to make comments.

 

I don't generally tell our family too much. Whenever I do, I live to regret it. Outside of issues with DS, my youngest was born with Hirschsprung's Disease and is missing a chunk of her GI. We live with the ramifications of HD every day. Our solution to overbearing parents was to live no closer than one days driving distance. Our nearest relative is 400 miles away, and we like it that way. Our lifestyle and world view are so completely different than my extended family's. The distance has definitely helped our marriage....It sounds sad, but really, it's not.

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I generally only tell my family the really good things and the really bad things.

 

Sounds like you have a lot going on, and none of it sounds like "drama" to me.

 

If anyone says anything, just express that you are really, really stressed out and certainly don't do these things for recreational purposes. That ought to shut them up.

 

Another thought is to invite the worst offender along on some of the doctor visits. Then at least they'll know you don't do this for your own amusement. Assuming they don't just take the hint and butt out already.

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We don't tell a lot of our family about most of the appointments the kids and I go to. They just don't need to know.

 

Where a family member provides babysitting for my other kids, and therefore they know that we're going to an appointment, I make sure they are aware of the generalities of what's going on. I just kind of handle it in a way that doesn't invite discussion or questioning about what is going on...

 

I grew up in a family where we didn't go to the doctor unless someone was near death (ie my mom didn't believe my sister's stomach pain was that bad until her appendix burst).... While my mom is supportive, I think sometimes she doesn't "get" why my current high risk pregnancy is followed by an ob, a peri, my rheumy, and my endocrinologist. 4 doctors for one pregnancy? Frequent labs and ultrasounds? It's just another world to her.....but one that kind of makes sense. You go to the "abstract" appointments we go to (vision therapy, neuropsych evals, etc.) and it's just beyond anything she has reference to....

 

Most people don't get the "needs" in special needs unless you've lived through it yourself.....

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You have a ton on your plate and it is frustrating your family isn't more supportive.

 

I'd say for a lot of people in your shoes the blow up would be inevitable and maybe not necessarily a bad thing. It really depends on your family, but at some point they probably do need to understand how their lack of support is making the situation more difficult.

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:grouphug::grouphug: Wow... I'm so sorry! You would think family would know you and your family a bit better :glare:! I can get those that don't know your family but those that are close to you!

 

My reaction would be this, "Regardless of what you say or how you feel, I have to do what is best for my children, in order to ensure a better quality of life for them. That is my number one priority and if you cannot appreciate that then I am not sure how you can call yourselves my family". Not saying you should react that way. Just saying that this would be my reaction and then I would drop it. I would also distance myself to make my point.

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:grouphug: How very, very insensitive.

 

It's not the same at all, but I have received some incredulity for my ds' issues. He had a mild heart condition as a baby, and is both lactose intolerant and chronically anemic. You would never guess it from looking at him as he is a high-energy, very athletic, Type A boy. There have been those who thought I was making a mountain out of a molehill, though, and it was hurtful.

 

Your mother and your relatives are wrong to criticize. It's time to stop discussing these details with them.

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Thank you for all the replies. I'm feeling slightly better today. I think if I just spend this week getting things organized, I'll feel better. Plus, I'll be knocking out three doctor appointments this week and hopefully we won't "grow" anymore. After next week (one appt), we're done until our oldest has surgery in July.

 

My gluten free girl is out of town this week so I'll save some time by being able to order out a bit more.

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I generally only tell my family the really good things and the really bad things.

 

Sounds like you have a lot going on, and none of it sounds like "drama" to me.

 

If anyone says anything, just express that you are really, really stressed out and certainly don't do these things for recreational purposes. That ought to shut them up.

 

Another thought is to invite the worst offender along on some of the doctor visits. Then at least they'll know you don't do this for your own amusement. Assuming they don't just take the hint and butt out already.

 

I will definitely do the same thing. :)

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