Feeling lost & overwhelmed

[junkyardjean]

DD4 is thankfully doing well at the moment - we got through the last cold and she has seemed to really settle down (even getting hugs & kisses unprompted! - It's nice to have her back...)

 

That being said, when she was sick in the spring, the referral process started to gets things figured out for her here in Canada. I got a phone call over summer with apology from a department head saying they were sorry the original ped. spent so much time focusing on my psychiatric background and giving parenting tips when there was no questions/assessments around whether that was an issue. Great! Then we get the call saying they want to funnel her through some assessments to "rule out" things - okay. She is booked for a neuro-psychological & developmental assessment this week. I'm trying to stay positive - with her in a good spot, I'm hoping they can rule out some of their psychiatric diagnosis (ODD and PDD being the common ones that keep popping up - at her baseline, so obvious that we are not dealing with those thankfully).

 

But I'm also getting increasingly nervous. I'm pregnant, and during a consult I had with the genetics dr (we have had many pregnancy losses), he indicated that he felt she might have a form of vasculitis. Further, strep is not proven to cause this type of behavior change and that the hospital where she is going to be assessed dismisses this "pandas theory".

 

I feel like I'm preparing for war - after we've been at this for a year and have well-defined patterns and she is very much still coming down to baseline in between flare-ups (which I credit our ND treatments for), there is no doubt in my mind that this is an immune issue. Thankfully, her blood work over the past year backs up the point that when her behavior goes wonky, so does her blood...

 

I'm torn - the assessments will be good to finally "rule out" some of their thoughts that are ridiculous to me - but I know that each medical dr views her from the lens they are most comfortable with, which means that we could potentially have many more theories being thrown at us over the next while. After what happened in Boston, I am scared...

 

Sorry about the length, I just needed a place to dump this fear. I was watching a show today and it caused reflection - we couldn't leave the house with her 6 months ago. She would run into traffic, eat dangerous things, scream at sensory issues, etc. We have started going out again and enjoying activities with her (writing this with tears in my eyes....) I missed her, and am sooooo thankful for where we are in this moment. I'm worried these assessments are going cause further compartmentalization of her care - we need her medical people to be more holistic, and I don't have a lot of experience with this hospital to know what we are going to encounter and it is bringing up huge vulnerabilities inside of me... Thanks for listening...

[MomWithOCDSon]

But I'm also getting increasingly nervous. I'm pregnant, and during a consult I had with the genetics dr (we have had many pregnancy losses), he indicated that he felt she might have a form of vasculitis. Further, strep is not proven to cause this type of behavior change and that the hospital where she is going to be assessed dismisses this "pandas theory".

 

 

Who might have vasculitis? Your PANDAS DD?

 

Vasculitis is auto-immune, also, so I'm not certain that wouldn't further support, rather than work against, your PANDAS diagnosis.

 

Also wondering what he's basing that opinion on? Is he suggesting that some form of vasculitis might cause the same symptoms and/or behaviors that have up til now been attributed to PANDAS?

[LNN]

I think if you can get a "normal" baseline assessment, it may be a positive in the sense that in this winter, if you hit a flare, you can point back to this time and say "see, this is the "before" picture of my daughter and what you see in your exam room is the "after".

But I totally get your apprehension.

 

I don't have any great suggestions, since I'm not familiar with Canadian health care. But the one thing about your post that caught my eye was your mentioning you've lost a lot of pregnancies. If you haven't been tested yet, you may want to ask your doctor to test you for 2 mutations of your MTHFR gene - C677T and A1298T. There's a possibility that a mutation on this gene can lead to miscarriage. In addition, it can effect seratonin levels. If you can't get the test, as a precaution, you may want to take methylfolate instead of regular folate/folic acid during your pregnancy. This site has some helpful information http://www.mthfr.net

 

My DD has one mutation on this gene and treating her with a very small dose of methylfolate has reversed some hard to predict mood issues. For some, methylation issues have contributed to some of the OCD, anxiety or rages our kids experience. It may be something to put on your radar for both you and your daughter.

 

Good luck with the appt!

[sosudden]

Well a big part of me says to with your gut feeling. It is so tricky to rock the boat when they are doing any bit better. If these new doctors "find" something, would it change her treatment plan right now? My thoughts are with you!

[lfran]

I was going to say the same thing re: MTHFR and pregnancy loss.

I think if you can get a "normal" baseline assessment, it may be a positive in the sense that in this winter, if you hit a flare, you can point back to this time and say "see, this is the "before" picture of my daughter and what you see in your exam room is the "after".

But I totally get your apprehension.

 

I don't have any great suggestions, since I'm not familiar with Canadian health care. But the one thing about your post that caught my eye was your mentioning you've lost a lot of pregnancies. If you haven't been tested yet, you may want to ask your doctor to test you for 2 mutations of your MTHFR gene - C677T and A1298T. There's a possibility that a mutation on this gene can lead to miscarriage. In addition, it can effect seratonin levels. If you can't get the test, as a precaution, you may want to take methylfolate instead of regular folate/folic acid during your pregnancy. This site has some helpful information http://www.mthfr.net

 

My DD has one mutation on this gene and treating her with a very small dose of methylfolate has reversed some hard to predict mood issues. For some, methylation issues have contributed to some of the OCD, anxiety or rages our kids experience. It may be something to put on your radar for both you and your daughter.

 

Good luck with the appt!

[junkyardjean]

"""Also wondering what he's basing that opinion on? Is he suggesting that some form of vasculitis might cause the same symptoms and/or behaviors that have up til now been attributed to PANDAS?"""

 

Yes, he indicated that vasculitis would cause the same neuro-psychiatric symptoms if the blood vessels in the brain were being affected. I have been able to do some further reading and it sounds very similar to the roots of PANDAS (autoimmune crossing barrier, causing symptoms). When I read the clinical pieces though, her blood markers that should have red flagged vasculitis in the beginning came back normal - which is why I think they didn't investigate further on this in the beginning. The dr. I spoke to did not have her labs, and was mostly looking for genetic markers/characteristics to see if they should be doing further specific pre-natal testing on baby.

 

THanks for the info on MTHFR - I will get going on this right away and see what rolls out...