bubbasmom Posted October 29, 2009 Report Posted October 29, 2009 Anyone have advise to me for the IVIG. We're going through so much with my son. His fits of rage are so unbearable and we're all walking on egg shells around him. We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you.
sf_mom Posted October 29, 2009 Report Posted October 29, 2009 Anyone have advise to me for the IVIG. We're going through so much with my son. His fits of rage are so unbearable and we're all walking on egg shells around him. We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you. Congratulations on completing IVIG. What antibiotic, dose and weight is your son again? Post IVIG we had our son who is 43 pounds on 500 m.g. Azithromycin for one month due to his brother and sister having the flu twice during that time period. He did not get sick and he became almost completely symptomless by week 4. He is about 98% currently. We lowered his daily dose to 375 m.g. daily on the 23rd and he continues to do well even with one major bout of diarrhea 'stomach bug' he got from his brother and sister. We will attempt to decrease the dose again in another month depending the situation 'illnesses' at his school. Initially, our son was very hyper post IVIG and saw flairs of symptoms throughout the first week. BUT, he was definitely more reasonable immediately. -Wendy
peglem Posted October 29, 2009 Report Posted October 29, 2009 Anyone have advise to me for the IVIG. We're going through so much with my son. His fits of rage are so unbearable and we're all walking on egg shells around him. We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you. Is he worse, do you think? We have not done IVIG (yet, but hope to by the end of the year), but it seems like some kids get worse before improvements? I know how bad constant rages can be. So sorry to hear. Hang in there, praying you see improvement soon!
Buster Posted October 29, 2009 Report Posted October 29, 2009 We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you. I totally know what you mean about eggshells.... In our case, the first 2 weeks were worse after IVIG. Old symptoms all came back. It was on the 16th days post IVIG that a sudden calm entered our house. No other word for it. Our dd9 got out her social studies book and started doing her homework. It was unbelievable. This is such an everyday event, but she just clicked into "normal." Handwriting improved noticably week 3-4. Attitude improved dramatically in week 5. She started playing with her sister in week 6 (several hours of it). Her sister was sooo delighted because frankly she's been missing someone to play with. She was able to go to her room by herself and read.... We're now at week 13 post IVIG, things are still very good. We do notice a tiny vocal tic and some pushback/defiance. But it is really nothing but we're hyper alert. We're keeping her on 250mg azith and she's also on an SSRI (Prozac) at very low dose. We've decided not to change any variables for 4 months. Hoping you have similar results... Buster
dcmom Posted October 29, 2009 Report Posted October 29, 2009 It is soooo tough for the siblings, isn't it? My non pandas daughter, age 9, has been so impacted by her sister's (age 6) pandas. They are usually constant playmates- but it was tough during the worst times. Non pandas daughter is definitely left with as much (or more) post- pandas anxiety/emotions as mom.
bubbasmom Posted October 30, 2009 Author Report Posted October 30, 2009 I guess all we've been through with his rage I'm just very impatient. I really had hoped that this week we would see stuff change. It's such a bad time of year, we've already missed my birthday, my 10 year olds birthday - you know you spend your day hovering over the sick one making sure nobody ticks him off! He was in a fit on my birthday, doing 11 hours of IVIG on my daughter's birthday. Now Halloween is Saturday, I'm expecting the worst. We normally have family over, I'm just not up to it. Sixteen days at this point seems like a life time! More than two more weeks of this. I'm losing strength fast. He's 130 pounds and I have to physically restrain him when this happens. It's horrible. Thanks for the in put. We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you. I totally know what you mean about eggshells.... In our case, the first 2 weeks were worse after IVIG. Old symptoms all came back. It was on the 16th days post IVIG that a sudden calm entered our house. No other word for it. Our dd9 got out her social studies book and started doing her homework. It was unbelievable. This is such an everyday event, but she just clicked into "normal." Handwriting improved noticably week 3-4. Attitude improved dramatically in week 5. She started playing with her sister in week 6 (several hours of it). Her sister was sooo delighted because frankly she's been missing someone to play with. She was able to go to her room by herself and read.... We're now at week 13 post IVIG, things are still very good. We do notice a tiny vocal tic and some pushback/defiance. But it is really nothing but we're hyper alert. We're keeping her on 250mg azith and she's also on an SSRI (Prozac) at very low dose. We've decided not to change any variables for 4 months. Hoping you have similar results... Buster
fuelforall Posted October 30, 2009 Report Posted October 30, 2009 16 days!!!! Woo hoo, for me, that's Sunday! I hope my son is like Buster's daughter! Hang in there,bubbasmom! I'll get back to you on how the weekend went.
Iowamom Posted October 31, 2009 Report Posted October 31, 2009 We are post IVIG 4 weeks. The first three weeks were ROUGH. We have a 100 lb son that rages, among other things. This week has felt like a 2 steps forward stage. Some really pleasant days. It was one step back for about 24 hours, but I think we are on a fairly even keel right again. I just want to encourage you. Dawn
pixiesdaddy Posted October 31, 2009 Report Posted October 31, 2009 We saw muscle tics and wetting go away by day two. Rages lasted until week 6 for us. Still having emotional lability, but not accompanied by directed violence. pixiesdaddy
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