Another Success Story

[ShaesMom]

Hi Everyone-

 

I wanted to share that I just finished reading an article in the December/January 2010 Issue of IG Living Magazine (igliving.com) about two brothers, now ages 16 & 9, who were dx'd with Pandas at the ages of 8 & 5. The family faced many of the struggles we are facing as far as finding a Doctor who was willing to treat but eventually found an Immunologist who was willing to RX IVIG. Both boys did receive IVIG and our now healthy. Unfortunately, the article is not clear if they receive monthly IVIG or had a one time treatment. There is not a link to the specific article but here is a quote from the Mother when asked by the interviewer if IVIG helped:

 

"Definitely. I now have two healthy, socially adept, wonderful boys. Nick still has a few residual tics because it took so long to get the correct treatment, but Danny has had a complete recovery."

 

The mother also states earlier in the story that the older child did receive a one time treatment of IVIG that worked wonders for a couple of months but he became sick again and all his symtpoms returned. Leads me to believe that the boys may now receive montly IVIG-I'm going to email the writer and see if I can't find out more details about their treatment.

 

IG Living magazine is available for free to anyone who receives IVIG or has an interest in Immune Issues. I have been receiving the magazine for about 6 months and literally read it cover to cover. It is VERY informative. I would recommend it to anyone whose child is receiving monthly IVIG.

 

Last month I posted an update on my daughter. I was hesitate to do so because I didn't want to jinx us. Well, I did just that! LOL Both kids who sit next to her in school had confirmed strep and based on her behavior changes we assume she had it as well. Her Ped did not want to do a strep test because in her opinion the chances of a false negative are great because of the prop abx but she did treat her. All of her symptoms were extremely mild and no one but my husband and I would have probably picked up on them (You become so fine tuned to anything!). Compared to how she reacted when her brother brought home strep in September, I would say she was a 1 1/2 this time compared to an 8 when he had it. A ten day dose of Omnicef cleared any infection and behavior changes.

 

Unfortunately, we have since found out that one of the little boys now has Mono! Her Ped & Immunologist both told us there was nothing we could do except wait it out. He could remain contagious for months and it could be two months before we see any infection in her. So, we have our fingers crossed. Her teacher was very understanding and moved the child so he is no longer sitting next to her.

 

She had her 6th IVIG on Monday and all signs of a recent strep infection are gone. I read in another post that someone's child always seems to have a three day flare in their OCD after the monthly IVIG-we have not experienced anything like that. Overall she continues to be doing extremely well and we remain grateful for the monthly IVIG and PIDD diagnosis.

 

Sam

[Worried_Dad]

Thanks for sharing this, Sam. These success stories - especially years later, when life has returned to normal for PANDAS kids - lift my spirits so much!

[sf_mom]

Me too........ AND, so happy your daughter is doing well!!!!!! Let's keep the success story coming. I can't wait to add ours someday in the future.

[nevergiveup]

Shaesmom,

 

Thanks for the post, Lots of positives lately. Always what we need to hear. If you get the email of the mother of these two boys and she is willing to talk to others it would be great to know more details like IVIG timing, dosage, at what age did they start IVIG, medical diagnosis, Insurance, you know all the typical questions. (Oh yeah and her immunologists name)

 

I am glad your daughter is doing well. My dd gets her second monthly IVIG for CVID on Monday. What is your dd's dosage. Are they measuring her IGG levels pre and post IVIG? Does your dd have any autoimmune blood markers? ANA or others? I think it was me who said that my dd has about three days of some OCD right after IVIG. However she also says her OCD is gone since IVIG. She says she is a different person. I am hoping she will not have this flair up as her immune system gets better.

 

I know your daughter has been on IVIG for 6 months. I am assuming other than sept and recently she is doing a lot better. How long will they continue IVIG? Thanks for your reply.

[matis_mom]

Hi Everyone-

 

I wanted to share that I just finished reading an article in the December/January 2010 Issue of IG Living Magazine (igliving.com) about two brothers, now ages 16 & 9, who were dx'd with Pandas at the ages of 8 & 5. The family faced many of the struggles we are facing as far as finding a Doctor who was willing to treat but eventually found an Immunologist who was willing to RX IVIG. Both boys did receive IVIG and our now healthy. Unfortunately, the article is not clear if they receive monthly IVIG or had a one time treatment. There is not a link to the specific article but here is a quote from the Mother when asked by the interviewer if IVIG helped:

 

"Definitely. I now have two healthy, socially adept, wonderful boys. Nick still has a few residual tics because it took so long to get the correct treatment, but Danny has had a complete recovery."

 

The mother also states earlier in the story that the older child did receive a one time treatment of IVIG that worked wonders for a couple of months but he became sick again and all his symtpoms returned. Leads me to believe that the boys may now receive montly IVIG-I'm going to email the writer and see if I can't find out more details about their treatment.

 

IG Living magazine is available for free to anyone who receives IVIG or has an interest in Immune Issues. I have been receiving the magazine for about 6 months and literally read it cover to cover. It is VERY informative. I would recommend it to anyone whose child is receiving monthly IVIG.

 

Last month I posted an update on my daughter. I was hesitate to do so because I didn't want to jinx us. Well, I did just that! LOL Both kids who sit next to her in school had confirmed strep and based on her behavior changes we assume she had it as well. Her Ped did not want to do a strep test because in her opinion the chances of a false negative are great because of the prop abx but she did treat her. All of her symptoms were extremely mild and no one but my husband and I would have probably picked up on them (You become so fine tuned to anything!). Compared to how she reacted when her brother brought home strep in September, I would say she was a 1 1/2 this time compared to an 8 when he had it. A ten day dose of Omnicef cleared any infection and behavior changes.

 

Unfortunately, we have since found out that one of the little boys now has Mono! Her Ped & Immunologist both told us there was nothing we could do except wait it out. He could remain contagious for months and it could be two months before we see any infection in her. So, we have our fingers crossed. Her teacher was very understanding and moved the child so he is no longer sitting next to her.

 

She had her 6th IVIG on Monday and all signs of a recent strep infection are gone. I read in another post that someone's child always seems to have a three day flare in their OCD after the monthly IVIG-we have not experienced anything like that. Overall she continues to be doing extremely well and we remain grateful for the monthly IVIG and PIDD diagnosis.

 

Sam

Do you mind me asking the dosage for Omnicef? Our pediatrican was kind enough to put everyone on it, but it seems they are giving my little people way too much. They all weigh around 40 lbs and got 1tsp of the 250mg/5ml suspension (for a total of 500mg a day). My 14-yo and I got 300mg x 2day, for a total of 600, it seems to me someone messed up the prescription. Of course now it's Saturday night and I will not be able to get this sorted til Monday... But according to what I found online, it seems they should be getting only half of that, unless she is going for a mega dose to make sure we all clear it...

 

Isabel

[ShaesMom]

Shaesmom,

 

Thanks for the post, Lots of positives lately. Always what we need to hear. If you get the email of the mother of these two boys and she is willing to talk to others it would be great to know more details like IVIG timing, dosage, at what age did they start IVIG, medical diagnosis, Insurance, you know all the typical questions. (Oh yeah and her immunologists name)

 

I am glad your daughter is doing well. My dd gets her second monthly IVIG for CVID on Monday. What is your dd's dosage. Are they measuring her IGG levels pre and post IVIG? Does your dd have any autoimmune blood markers? ANA or others? I think it was me who said that my dd has about three days of some OCD right after IVIG. However she also says her OCD is gone since IVIG. She says she is a different person. I am hoping she will not have this flair up as her immune system gets better.

 

I know your daughter has been on IVIG for 6 months. I am assuming other than sept and recently she is doing a lot better. How long will they continue IVIG? Thanks for your reply.

 

No, they are not checking her Igg levels pre & post IVIG. Her liver function is checked every three months and I know at some point he will run her trough levels. He ordered an AntiNeuronal Antibody test which from what I can tell is different than the ANA test. There was a lot of confusion at the lab over this test when they drew her blood so I'm not sure they ran the correct test. He wrote antineuronal on the order but I'm guessing he meant antinuclear. We see him again next month so I'll double check then.

 

She receives 20 grams every 4 weeks. At this point the plan is to continue for two years. She has other health & immune issues in addition to the Pandas & CVID.