Jump to content
ACN Latitudes Forums

Finally on the right path


Recommended Posts

So we got DS out of the house and to the doctor yesterday. I went in and spent over an hour with her talking about DS's history and DH and DS stayed in the car. The doctor was fine with that and she came out to the car to examine him and talk with him.

 

She was very thorough and really knew her stuff. She said she has no real reputation because she is just a pediatrician with a practice in Brooklyn.

 

She changed up some of the medication. She took him off Valtrex, Biaxin, Difluan, titering down Augmentin and off the round the clock Advil. She added Azithromycin (which she finds certain patients respond better to), omega 3 (fish oil), Rispedral.

 

We will see what happens. In two weeks we will begin working on the process for having plasmapheresis done as an inpatient. DS's tonsils are very small so she feels a T&A may not be warranted. She felt that DS was very very sick, "It's all attacking his brain, so he doesn't seem traditionally sick, but he is really suffering!" She felt that after the med change, he will still need to try PEX, and until we haven't done that, we hasn't done everything. It will be inpatient, ICU monitoring for a week (5 PEX procedures).

 

She believes strongly in CBT, but she said it only works when the child is on his path to recovery. She talked to DS about needing to go to the bathroom every other day, but doesn't know if he can control that even.

 

We also received a script for PT, his muscles are tiny and she wants him to move around more. He cannot do any exercise because that is part of the OCD...he used to wrestle and would always win the push up challenges : (. There are many old people in my neighborhood and so a few PT places started to come to patients homes. We can probably start that rather quickly.

 

That's about all I can remember. Getting him out was harrowing. He still talks to DH and my dad. Who were the ones physically helping him out, but not to me. Oh well, great to be the mom I guess!

 

Thanks for all the advice, it really helped to see what others have been through and survived.

 

T.Anna

DS15

Edited by T.Anna
Link to post
Share on other sites

I think ICU guarantees round the clock monitoring and a private room. She has done this before and I guess this is the formula she likes.

 

I'm very comfortable with it. Since DS blames me for the trauma and is not speaking to me, I was able to nap and go out this afternoon.

 

T.Anna

Link to post
Share on other sites

She is well known, as far as I know she only uses zith. That may be why not as many people go to her. Dr S sort of discovered pandas because she tracked strep in generations of her patients and found patterns of pandas. My niece went to her and the zith wasn't enough after being on it a year she changed doctors. I think because we find out she has Lyme too and probably co infections that zith was not effective. It's always good IMO to work with a pediatrician, I hope she can get you to the next level.

Link to post
Share on other sites

So happy to hear, T.Anna, that you've found someone who's really ready to help. May this path be a very fruitful one for you, DS and your whole family!

 

As for DS "shunning" you currently because all this trauma is "your fault" . . . I've been there, and I say take your current freedom and run with it! While DS is safe and receiving treatment, use the time to care for yourself some, catch up with friends, buy a pretty new bag, whatever helps lift your mood for a little while! You're a great mom, and I've seen how tirelessly you've worked to put this puzzle together to help your DS; one day, he'll see it too!

Link to post
Share on other sites

MomwithOCDson: Thanks, I have a trade show tomorrow and DH will stay with DS. I am making the most of this Cold War, since I'm usually the indentured servant with DS. Plus, I was able to be with the other two kids.

 

Hopeny: Thanks for the heads up regarding Azith. We actually had a nice and thorough discussion regarding the medications that DS is taking. We came to her after trying MANY different things, so I feel the changes are thought out. Dr.S told me that she found certain patients do better on Azithromycin, especially Ashkenazic Jewish patients, others she sees do better or Augmentin. DS has been on Augmentin at high doses for months and we have seen no change in the OCD, so adding Azithromycin and going back down to 2000 mg of Augmentin is worth trying. Besides DS is of Ashkenazic decent.

 

Dr.S has worked with Dr.T in the past and has an understanding of why it can sometimes be difficult to receive proper follow through. I do feel that we were able to survive with this severe OCD this long because Dr.T has become a pro with home services (IVIG, blood draws) and remote consultations.

 

Thanks again,

T.Anna

DS15

Link to post
Share on other sites

T. Anna it sounds like you are in great hands. Feel free to copy and paste the info I just posted on the other thread in regards to Zithromax and strep. (I'm only so handy on a smart phone). Most docs don't prescribe Zith in the proper dosing for strep. It can be as high as 12 to 20 mg per kg. example: my DS was on Amox for 8 weeks and her ASO didn't budge to doc put her 4.5 mg of Zith and things got far worse with her outrageous behavior. My doc did some research and realized she could be on a far higher dose. One day if 11mg and she's sweet as sugar! She's 42 lbs is taking suspension that's 100mg per 5 Mls. Sorry, didn't mean to hijack your post.

 

I'm so sorry that you are dealing with such stresses. An unsupportive spouse can make things so much worse. Sometimes its just too much for them to handle and they end up shutting down bc they can't deal. I hope your son is able to improve dramatically with the amazing treatment he is about to receive and that it will allow healing for DH as well. You are doing such an amazing job and I can't wait to hear good news from you soon! When is the hospitalization scheduled? It sounds VERY promising!

Link to post
Share on other sites

Thanks JoyBop. DH is amazing! It is DS who hates me : )

 

No worries about the hijacking. So your daughter is on 100mg a day at 42 lbs?

 

DS is on 500mg at 120lbs and considered an adults at 15.

 

So based on that dosing DS could (should??) be on 700-1000mg a day??

 

T.Anna

Edited by T.Anna
Link to post
Share on other sites

Just went to your other post JoyBop.

 

Here is the dosing you wrote:

PHARYNGITIS/TONSILLITIS: (5-DAY REGIMEN)

DOSING CALCULATED ON 12 MG/KG/DAY FOR 5 DAYS.

WEIGHT 200 MG/5 ML TOTAL ML PER TREATMENT COURSE TOTAL MG PER TREATMENT COURSE

KG LBS. DAY 1-5

8 18 2.5 mL (½ tsp) 12.5 mL 500 mg

17 37 5 mL (1 tsp) 25 mL 1000 mg

25 55 7.5 mL (1½ tsp) 37.5 mL 1500 mg

33 73 10 mL (2 tsp) 50 mL 2000 mg

40 88 12.5 mL (2½ tsp) 62.5 mL 2500 mg

 

By this chart, DS should take more than 2500mg?? Wow!!

 

Dr.S is gone for two weeks. Maybe I'll call Dr.T and check on this dosing.

 

T.Anna

Link to post
Share on other sites

Ifran: all she said is that she found that they did better on Azithromycin and that she does not want her patients using Greenstone made Azithromycin.

 

HTH,

T.anna

Would love to hear more about her thoughts on the Greenstone brand.

 

btw- great job mama on getting your son to the appt (even if it was in the car). Good luck moving forward.

Link to post
Share on other sites

Philamom, she only said that she doesn't like Greenstone. She trusts Teva and another generic and asked us to go to a small pharmacist and not a chain.

 

Sure enough our local pharmacist had to special order the other brands at 500mg. To hold us over he gave us 250mg from the ok'd vendors.

 

T.Anna

Ds15

Edited by T.Anna
Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...