Thanks for your advice Shayna to be honest I also thought about turning it into the proper licensing authorities. But I do not really have the energy to do that. And I say that with sadness. I guess what I mean is that I cannot think straight or dedicate enough time on anything anymore. I have a one track mind and everything else is certainly suffering. As I told my very concerned mother, I will be alright, I went through denial and into acceptance, give me some time to adjust. My daughter did not die, nor will she from these ailments and I realize this and it makes me stronger, very slowly.
Jeezopete, Abbie, no helpful information here, but loads of sympathy and hope for better days to come! You’ve got a hard row to hoe there, friend. Just do your best and don’t beat yourself up because you can’t do more.
These last few days, being the first days I was back to work in almost 4 months are really helping. I am able to focus on things a bit more, and start planning for the future. Next week the early intervention therapy starts so from that point on will be the milestone. I thank you for your well wishes. They are appreciated 
Abbie, you’ve learned what I had to learn, too: As a parent of a child with any differences from the norm, it’s our job to become our child’s best medical resource and advocate. I took it upon myself to stop the doctors and ask for definitions of every single term they’d used that I didn’t understand, and then I went out and did my own research – I even took advantage, with one job I had, of access to a state medical library to look at the literature and see what else I was missing/unaware of.
I then had to learn to challenge doctors/other medical practitioners who tried to dismiss me as “only the mother.” I learned how to describe my child’s condition correctly, and when meeting a new doctor would explain it to them using their own terminology – and found that almost every doctor at that point realized that I might actually know what I was talking about and would then explain things to me in more depth. Those who didn’t want to explain to me I wouldn’t let do one more thing until they did, whether they liked it or not. It’s MY child.
So I had to learn to stand up and say, “No, this has been done before and it didn’t work, and this is why, but this did work, and this is why, and this is how it should be done for best results.” As an example, when my child was getting x-rayed every three months, in the same exact position every single time, I had to learn to tell the x-ray people, “You’ve got one chance to get it right, so this is how you need to do it,” and make them listen to me before allowing them their one shot. The doctor backed me up and would chew their asses out if they took a bad shot because we were working together to do the best for my child and keep x-ray exposure to a minimum.
Ultimately, by putting together everything you’ve learned/done, you need to make yourself the living medical history for your child – and also put it down in writing somewhere so that if, God forbid, something should happen to you, it’s available to anyone who needs to know it. And by doing that, you show the doctors that you are a valuable and important part of the treatment team. Since ultimately you’re the one who’s going to be ensuring that whatever treatment/action is prescribed is followed, it’s going to help THEM to have you a part of the team. And if the doctors you’re seeing now don’t have that attitude, find new doctors!
I hope this all helps. Advice from the trenches and all that.
Thread moved to MPSIMS at request of OP.
Abbie - we have Dweezil (asperger’s/high-functioning autism, tho not late-onset) on a casein-free diet almost by accident - I’d heard of this (this was in 1997) and pooh-pooed the concept… then he had a bout of diarrhea and we took him off milk for the duration… and were startled to see that his behavior improved and his speech did too. So I think it may be well worth it to try taking your daughter gluten and/or casein free. (we wound up not attempting gluten-free as his behavior worsened during a wheat-free period for a food-allergy challenge that year, also gluten-free is more of a challenge than casein).
Try not to beat yourself any more over anything you feel you might have done differently earlier. Sometimes you have to prioritize things - dealing with your wife’s illness was a more immediate crisis… and the “experts” all told you your daughter was fine so you were able to concentrate on your wife. If you want to look at the bright side of that, you could remind yourself that:
- Hearing loss can be compensated for (sign language / cochlear implants etc.)
- The autism would have been an issue regardless
- Because you were able to concentrate on getting your wife well, she’ll be around to help raise your daughter.
We were in a similar boat (well, in a pond compared to your ocean) when Dweezil was dx’ed - I was going thru a difficult pregnancy with my daughter, and we didn’t see my son around other kids so we really didn’t realize he was “off”, developmentally. So we too felt like we missed a lot of cues that in hindsight were really obvious, and we missed out on a lot of time we could have been addressing his issues. We try to concentrate on the fact that we had to deal with the more pressing issues first. And in the long run I think our son has made up for that lost time - I’m confident that your daughter will also.
If you have not already done so, get linked up with the local Head Start (whatever they call it, ours went by some other name) and/or the school district. IIRC, Head Start handles kids up to 3 years and the school district starts handling them at about age 2ish. By law HS has to evaluate and begin providing services within something like 45 days of referral while the school districts have 3-4 months. For that reason, we put Dweezil through both, even though he was nearly 3 at the time (and even so he had a couple of months with no supportive services). Anyway, those folks will be able to help, a lot.
You and your wife have my sincerest sympathies. With everything you’ve had dumped on you in the past year, it’s no wonder you’re angry, frustrated, and totally exhausted emotionally and physically. And to have the autism/deafness dumped on top of everything else…
Cardinal rules of paediatrics:
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If the parent says there is a problem, there is a problem until proven otherwise. That’s “proven” with tests and investigations, not “proven” because the doc thinks you’re making a big fuss over nothing.
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Losing milestones already attained is never normal and requires comprehensive investigation.
Ear pulling is a well-known sign of possible infection/other causes of ear pain. Any child who has not passed adequate spech milestones by 18 months (or who has regressed) needs assessment of their hearing.
Any child who pulls at their ears needs to have their ears examined properly with an otoscope, persistent problems should be referred to ENT and audiology.
Go after you paediatrician.
I’m a med student and this is stuff that they teach us, it’s basic practice, not rocket science or specialist knowledge.
If your doctor didn’t look into your little girl’s ears or organise assessment when you told him that she had lost milestones then he was not doing what he was meant to do.
Let me start off with a little story, the day I wrote this my son spilt syrup off my plate onto my arm and a bit on the floor. We where all getting up from the table so it was seen by all of us, but I was out the door for work, my son for school.
Fast forward to that evening, my wife steps in the sticky syrup on the floor and yells for my son “See what you did to my socks, you didn’t bother to clean this up” I laughed to myself, and asked my wife, did you see it spill this morning? She said “Yes but I didn’t get a chance to cle…” “No, I am not saying it should’ve or could’ve been cleaned up, I am saying you are blaming him for YOU stepping in the mess, that YOU knew was there.” Now of course my son cleaned it up and should of before school but it was personal responsibily I am trying to instill in my children (and wife sort of) that makes me just as much at fault as our daughters doctor.
Should a complaint be filed? Yes and it most likely will, along with her medical records it could be bad for the doctor. Since it shows she was talking at her 12 month check-up and it has 3 notations where my wife and I said about her not talking anymore, and the ear problems. With no follow-ups requested and nothing done for those problems.
A sort of important update on the whole doctor situation. We go to small practice with a few pediatricians on staff yesterday one of the doctors who our daughter has not seen there called my wife yesterday. He did something else I never encountered, he admitted they may have made a mistake with our daughter. And would like us to come down later this afternoon to discuss “something” My assumption is they will try to have us sign something or another which will not be done unless I have a lawyer present. My mom (who is friends with the admin of the hospital they are affiliated with) thinks they are going to try to pay for our hotels etc. for our stays in Pittsburgh, and she does have an inside track on information. Which to be honest will satisfy me. As they are at least admitting some fault.
On a sort of wierd/hopeful/wishful thinking part, we took our daughter off of casein products (milk products)2 days ago and she does seem to be more attentive. Could be optimism but hell it is something and thats all I have right now .
Next is gluten… that will be harder.
Ask for a proper apology, but you’re right, don’t sign a thing without a lawyer.
You’re a parent, but the doctor has guidelines to follow that specifically lay out what he should have done and didn’t follow them. Your guidelines were to seek medical advice, don’t feel guilty about this, you did what you were supposed to, your doctor didn’t.