DS doing great!...visits with DOCS B and L

[P_Mom]

Always great to hear good news!! Thank you...prayers for continued health and happiness!!!!

[PhillyPA]

Fixit,

We were in Dr. L's office at the same time....small world. Was your son sitting on the floor? If that was him, he is really cute--gave me a few good smiles!

 

EAMom,

Dr. L suggested azith to us the last 3 times we have spoken to her...but when I tell her my location (4 hours west of Pittsburgh area), she always agrees with my concern about the resistant strains of strep...I also get the impression that with her all cards are on the table, and that she will do whatever it takes.

 

 

Kayanne when we were in Latimer's office in August she did not want to use azith. I asked her about it and she said no. She wanted to stick with the augmentin. Explain to me about the resistant strains of strep in our area. Are they only in our area?

[Fixit]

Fixit, on the LDN- are you doing the cream/lotion (whatever it is that you do on the skin) or oral administration? We did a couple of months of LDN last summer, but stopped when the strep came back (we were on a lower dose of abx back then). We were actually prescribed through the psychiatrist, but she had not used it before and is not familiar w/ using the low dose. I think I saw some good things, but w/ all the other things we were trying- I wanted to avoid other variables. Nobody seems to know how it would affect the immune system of someone who is getting monthly IVIG...

 

its a 2 mg capsule that scott got compounded for us and is shippred right to the house...i wish it were a tablet....not that i'm near ready...but scott said it's one drug that you will taper down to nothing...so maybe 6 months a year...not sure, then we would to 1.5 mg...

we went off could turkey...no effect..as per starting the steriod(they don;t mix)...just that in tapering down..the effect to the system is just more delicate....

steph2 uses it on her 5 year old but he only had 1 ivig

the mood improvement is unbelieable...at least at first...ds is always positive..but we have moments of walking on rainbows and bubble gum

[Fixit]

Thrilled sounds like you have got a handle of this.I know how good it feels when things are good.He deserves to be well.Hope and pray its over,finally over!!!Keep posting

 

Melanie

 

Thank you so much Melanie..he does deserve to be well and so do all kids..i don'w know what God thinks sometimes....everyone should be perfectly healthy till they are at least 25-28....a chance to be young!!!

 

ds just came in from doing yard work and did a raspberry sound...should i freak...should still be expecting blips....it is 90 degrees in the shade.....Brain inflamation???????

 

I HOPE AND PRAY IT IS FINALLY OVER TOO!!!!!!!

[Fixit]

Always great to hear good news!! Thank you...prayers for continued health and happiness!!!!

 

Thanks...

isn't your child that had complete recovery on a taper?????

how long did it take after the taper to say you are in complete remsission??

[EAMom]

[its a 2 mg capsule that scott got compounded for us and is shippred right to the house...i wish it were a tablet....not that i'm near ready...but scott said it's one drug that you will taper down to nothing...so maybe 6 months a year...not sure, then we would to 1.5 mg...

 

can you open up the capsule and pour out a bit (1/4) to get closer to 1.5mg? They also sell empty gel caps at places like whole foods, so you could save those little bit you pour out to make another capsule.

[Fixit]

PS..doc L said that she finds tics the hardest to get rid of...and if i am correct..not trying to put words in her mouth..vocals may be even harder?!?! and/or reaffirmed difficulty in getting tics to remit...

[Kayanne]

Kayanne when we were in Latimer's office in August she did not want to use azith. I asked her about it and she said no. She wanted to stick with the augmentin. Explain to me about the resistant strains of strep in our area. Are they only in our area?

 

The only thing I can say about azith resistance is that the rheumy that we saw at Hershey Medical a year ago was suprised that Becca was on 100mg of azith daily as a prophylaxis...he was sure this was a wrong choice for us because he said there are pockets of areas (in particular Pittsburgh) out in Western PA where strep is resistant to azith. I've checked with Rebecca's pediatrician about it, and he confirmed that. Also, in one of Swedo's speeches she mentions the Ohio Valley as having strep strains that are resistant to azith/macrolides (I can't remember which term she used)...it may be in the speech that I sent you the link to.

 

Whenever Dr. L has suggested azith to us, I tell her I don't want to take the risk -- 4 hours west is too close for me, and she always agrees.

 

I really can't answer why she wanted to keep your boys on augmentin. I do believe that she takes things as a case-by-case basis. I know last Sept when I pushed to put Becca on pen vk, she wanted to stay with the azith because it was "working", but I was too concerned about that resistance and I wanted a more benign antibiotic.

[Fixit]

Kayanne..what abx are you using?

and dosage...what is your childs weight?

 

thanks

[Kayanne]

Kayanne..what abx are you using?

and dosage...what is your childs weight?

 

thanks

I wanted to say that I am really happy you are seeing some good results, and I'll pray that it sticks!

 

Rebecca is taking 150mg Omnicef 2x/day until next week--when her current bottle is done--(long story but she was exposed to strep so we kept her at full strength for another 10 days)

 

Dr. L just dropped Rebecca down to 150mg of Omnicef once a day. We will be trying this as a prophylaxis...there really are no studies or anything to tell us a proper dose of omnicef for this. The penicillins are not an option now because she had a rash twice on amoxicillin

 

When she started the 150mg omnicef twice a day in Feb, she was only 47lbs due to weight loss -- she kept feeling like the food was getting stuck. She is now 52lbs...I am crossing my fingers that this is a good minimum dose to keep strep away (she also had a T&A in June).

[matis_mom]

Fixit,

So glad to hear your good news! I totally understand you not wanting to rock the boat. Hope your son keeps getting better and better!