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Soooo frustrated with my mother in law!


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So since I've been looking for "the next step" for Isaiah, my in laws have decided to partake in the search for a doctor. They spoke with some friends in their church and a dr here in town came highly recommended (my in laws are in California, we are in Washington state). So I decided to call this dr. and schedule an appt., during the conversation with the receptionist (whom had never heard of PANDAS) she informs me they don't take insurance (of any kind) and that $300-600 would be required up front for the first visit. We are unable to do that at this time, so I've decided to continue my search, as I have been given some names of other doctors that DO take insurance. So in the meantime, my in laws have been texting my husband and I, and at one point said that we need to figure out our priorities. Well tonight my MIL called me and was telling me that we need to take out some credit cards if that is what it takes, and that "other" things (like cars and such) shouldn't matter, since this is my son's life. What the heck??? I've NEVER said anything like that did matter more, of course my son is my first priority, BUT I am not going to drop $300-600 on the FIRST doctor that was recommended to me, without doing some research, which I am actively doing EVERYDAY. She then went on to tell me how I need to take him to this dr because he is more natural and detoxifies the body, and if I plan on putting him on ABX for long term I am basically poisioning him. Needless to say, we got into a bit of an argument, because I could not let this one go. This is MY child, and he is MY first priority, but she needs to let ME raise him!!! Ugh. I am just so frustrated right now. Thank you for letting me vent!!!

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It's easier for others to spend your money. How about she coughs up the med bills for that doctor then? I've learned with certain people to just stop giving them info on anything in my life because when I do, they always say something to anger me and upset me. I just don't need more stress.

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Try to remember that most people are just trying to help even if it doesn't come across that way. I would just tell them that you are researching many leads and trying to figure out where it would be best to spend your money.

 

That said, I'd go to someone who has treated someone with PANDAS before. Not worth the waste of time nor money to have to teach them as you go. Been there, done that.

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Most of us have experienced the vast money pit of this disease. There is NO shortage of MDs, PhDs, therapists, tutors and others who will perform diagnostics on your child that qualify them legitimately for their service. The symptoms are so broad and can change from episode to episode, you will quickly run out of time and cash pursuing every possible service provider. I am a therapist, an SLP, and I spent 3 years doing this with my dd11 before a doc turned me onto PANDAS. Since then, I have been like a laser focused on the underlying medical condition; my dd has been off all psych meds and she is 90% plus. I do most of the tutoring on my own and honestly, as she heals, she needs it less and less.

 

You need to spend your dollars very wisely. There is a thread on treatment within economic constraints which has great info regardless of your financial means. I think Vickie authored it...do you remember the title??? MIL is likely very well meaning, but you cannot afford to be polite to make her happy on this one. She doesn't know what she doesn't know, right? You can't argue with people like that. You can't afford it emotionally, financially or with regard to time. Not an option. You could email her a flood of research to either a)keep her busy for a very long time &/or b~ shut her up. I love you, mom....but not an option, of course you understand...I knew you would. END

Edited by JAG10
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In some ways you are fortunate to have in laws who understand the severity of PANDAS and the need to find a good doctor. However, this particular doctor does not sound like your answer right now. We are fortunate that there are some doctors now who take insurance AND understand PANDAS. That would be the best place to start - and save this consult (and your dollars) for the future if you need it.

Edited by kimballot
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I do think her suggesting your priorities where in the wrong place was hurtful.... BUT, she does seem to have some knowledge of 'what type of Dr.' could be helpful. Natural remedies and detoxifying agents have been tremendously helpful for our families success in treating PANDAS/Lyme. I would suggest she pay for the first visit and recommended supplements.... to see if its the right fit for your son and if its helpful. This way your following through with her suggestion at no cost to you.

 

I'm from Northern, CA... So, naturally I am very curious of the Dr.'s name and location. We have some wonderful Neuropathic Integrative Dr.'s that have helped many PANDAS children and wondering if its one I know. Some will even treat with hdIVIG for PANDAS...

 

-Wendy

Edited by SF Mom
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Thank you all for your replies, you all mean so much to me already! I called to cancel the appt that I had with that dr. and the receptionist stated that the dr. would like to speak with me on the phone regarding my son and PANDAS. I spoke on the phone with him today and am considering seeing him, he focuses on detoxifying and natural remedies, which I think would be a good route, just financially it is hard to swallow, since I know we can find dr's that take insurance....but then do I have to get referrals, travel, ect?! I am considering rescheduling the appt. since he did say that he would work out a payment plan with me (when I spoke to his receptionist, she said we would have to pay upfront every time $300-600). I do know that my MIL is concerned and cares, it was just very hurtful the way she came across. I will do everything in my power to get my son "well" but I have to decide what that is, and if we can financially afford one dr over another.

 

Wendy- My in laws live in Sacramento (Carmichael), I believe their dr. friend they spoke with is in the bay area. We live in Spokane, WA and that is where the dr. they recomended to me is from (Dr. Mundall). I will ask the name of the dr. down there the next time I speak to her. I believe his first name is Randy and his wife is a physician as well.

 

Tiffany

Edited by tiffany.v
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Tiffany - First off - I want to commend you for being open minded about this and not letting hurt feelings get in the way of treatment for your child. I think it is always good to use natural remedies when possible, and I also believe that children should be on antibiotics as little as possible as it can do harm in the long run.

 

That being said - I am not sure that the doctor you are considering is really an expert in PANDAS. I read some of your earlier posts and it sounds like you have a pediatrician with limited knowledge of PANDAS who is relying on positive strep cultures or titers to diagnose an exacerbation. The pediatrician told you that you know more than he/she about PANDAS, which you said was scary. I understand. I have been in the same boat.

 

I would caution you to really ask this new doctor about his/ her experience with PANDAS. There are many doctors who are very holistic that have experience with PANDAS and can complement traditional medicine with natural supports and detox, especially many of the DAN! doctors.

 

Ask the new doctor how he/she would evaluate for underlying infections. That is really key. You cannot stop at strep throat. Our kids have exacerbations with a multitude of infections including mycoplasma, lyme, sinus infections, and viruses. If you take the child off antibiotics while an infection remains, you will only need antibiotics that are stronger and for longer down the road to remove the infection.

 

I would agree with others that our healthcare dollars need to be spent wisely. You already know more than your pediatrician. Don't add another doc to your team that is a "trainee" unless you have a strong PANDAS doc to act as coach.

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I am sorry but none of the Dr.'s I am familiar with have the first name of Randy nor do I have knowledge of Dr Mundall.

 

But I agree with everything Kimballot has posted!!!!

 

I believe JuliaFaith see a neuropathic Dr. in the Washington area and would be a great resource for you. You might PM her... Her son has suffered greatly and was very sick. They recently unraveled that one of her son's main issues on top of chronic infection is mold illness.

 

Here is a post from her: http://www.latitudes.org/forums/index.php?showtopic=13689&pid=113257&start=&st=#entry113257

 

-Wendy

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