Update on Danny

[melanie]

A quick update since the PEX in November.

 

After the 5 exchanges in November things have gotten better.Tics(cursing)is MUCH improved.There is no more motor tics at all.(hand claps).He is still recieving IVIG .60 grams every 21 days and doc has put him on Depakote 250mg and has removed the Namenda and the Intuniv.We may go back to the Namenda but never the Intuniv.I think that made him angry.

His moods are much improved and his rigidness is less.I dont know if its the depakote or the PEX.He still gets mad but 1x per week instead of daily outbursts.Hes alot more focused at school and much more pleasant to be around.We can have a conversation around him without him telling us were stuttering.Still hears stuttering when people talk but not nearly as much.I would say hes 50-60% improved

The Dr says he going to do the PEX again in a few months.I dont think danny will approve of it.He wasnt happy with the procedure at all.He does feel better and I can see his improvement.

Sorry for the break but I almost feel whenever I say good stuff about his progress he goes backwards.

I miss everyone here sometimes and I read alot of your stories.I pray for all of our children.

 

Melanie

[MomWithOCDSon]

So glad to hear the good news, Melanie!

 

Curious . . . any particular reason for coming off the Namenda? Was it an interaction concern or something, or did the doctor think it wasn't working?

 

Take care!

[melanie]

I dont think it was helping but.. he wasnt prescribing it and danny was on a low dosage so thats why.I would like to try it again because he does alot of sef talking and I think it does help with that

 

Melanie

[LaurenK]

A quick update since the PEX in November.

 

After the 5 exchanges in November things have gotten better.Tics(cursing)is MUCH improved.There is no more motor tics at all.(hand claps).He is still recieving IVIG .60 grams every 21 days and doc has put him on Depakote 250mg and has removed the Namenda and the Intuniv.We may go back to the Namenda but never the Intuniv.I think that made him angry.

His moods are much improved and his rigidness is less.I dont know if its the depakote or the PEX.He still gets mad but 1x per week instead of daily outbursts.Hes alot more focused at school and much more pleasant to be around.We can have a conversation around him without him telling us were stuttering.Still hears stuttering when people talk but not nearly as much.I would say hes 50-60% improved

The Dr says he going to do the PEX again in a few months.I dont think danny will approve of it.He wasnt happy with the procedure at all.He does feel better and I can see his improvement.

Sorry for the break but I almost feel whenever I say good stuff about his progress he goes backwards.

I miss everyone here sometimes and I read alot of your stories.I pray for all of our children.

 

Melanie

 

 

Melanie, I am new to this forum and am very interested in your story because my son is also on the spectrum. He has aspergers. Would you say that the PEX helped his ASD symptoms as well?

[kimballot]

Melanie - Nice to hear that he is doing better. Please continue to keep us updated.

[hawks]

Glad to hear of your son's progress. That is good news and I pray that will continue.