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Back from IVIG in Colorado, We Did IT


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Hello Everyone,

 

I have good news, we made it through IVIG. If ANYONE is having any difficulty obtaining IVIG for their PANDAS child or getting it covered by insurance, they need to go to Colorado.

 

I first want to thank Elizabeth (Elizabeth and Keith) for referring us to Dr. Thomas Smith, he is at the Center for Cancer and Blood Disorders at Children's Hospital in Littleton, CO.

 

The staff was amazing, accomodating, a very loving to my son and to me. They were so interested in PANDAS. Dr. Smith has only treated one other child with PANDAS.

 

Ryan did amazingly well on the plane ride. I did not have to give him any medication at all. He was pretty nervous boarding the plane, but did fantastic. He actually really liked it.

 

I would not have not been able to make this trip without out the help of our behaviorist, Joseph Iller from Breakthrough Interventions. He has had a great deal of experience working with children, mostly autistic children, but he now is providing services for my 7 year old son with Down syndrome and my DS with PANDAS.

 

If anybody is concerned about how to get their child on an airplane, or to be able to accept the IVIG treatment and process, please PM me and I can give you his information.

 

He is so concerned about all these kids with PANDAS and has offered to travel where needed if a family needs assistance.

 

As far as the treatment itself...

 

IV insertion was tough, I should have hydrated him better. He did not know until we got there that he would need an IV. They had to stick him in both arms. They could not find a good vein in his hand. What was uncomfortable was the board tha they had to put on his arm to keep it straight.

 

He had to urinate quite a bit during the IVIG, with all the fluid.

 

They did not run a bag of fluid before the treatment, I was very concerned, so I called Dr. K. He said he cannot intervene, and that I should just give him more fluids orally. Easier said than done.

 

I talked to Dr. Smith about it and he was concerned that Ryan's vein was so difficult to put the IV into that if they run a bag of fluid it could blow the vein and what if they could not get another one, so I let it go.

 

They used Gammagard instead of Gamunex. Again, I was worried, they explained that it depends on the insurance and which brand they will cover, but it is the same thing and it was not sugar based, like the Gammunex. Has anyone else gotten Gammagard? Is Immune Globulin, Immune Globuline, Immune Globulin? Are they all pretty much the same?

 

Ryan was a little agitated at times throughout the treatment. Both days, at about 2 hours in. Nothing major that we couldn't handle.

 

Infusions took 6 hours on day one and 5 hours on day two.

 

We started to see things right away, it was really strange. After the first day of treatment we noticed that he was retracing his steps and movements slightly less and that he was making more direct eye contact. He was also completely excited, full of energy, lauging, making many jokes and taking more risks than he ever has before. He was very playful and had a very hard time going to sleep, up until 4:00 a.m. He went down to the jacuzzi and wanted to fill it with some soap and we did, he would normally never have wanted to do that, he would have been much too scared to break a rule. He put the first bottle of soap in!

 

I thought, what the heck, this poor little guy has not had much joy in his life for quite a long time.

 

2nd morning getting out of hotel was horrific, we could not wake him up easily. He had a fit/rage, that lasted about 30 minutes, and locked himself in the hotel bathroom. He was so loud that I thought that someone would call hotel security.

 

He said that he did not want the treatment and that he was never going to be able to get rid of the OCD, that it was no use and then he said he was afraid that I would not love him anymore if he still had the OCD. It just broke my heart. He also did not want the trip to end because he has no friends anymore. :unsure:

 

I hate this disease!

 

So that is the detail on the treatment.

 

As far as side effects: Headache started about 3 hours after treatment while on the airplane. Gave him motrin. Headache was pretty bad that first night. On a 1 - 10 scale he was at an 8. Headache the next day was at a 5 and today, which is 2 days after treatment finished, it was at a 3. Now it is gone. I still wonder if that extra fluid would have stopped that from happening????

 

We are noticing little changes already. My hopes are up... More playful with sister, more loving towards all of us. He had a big rage last night that lasted about 15 minutes over something really silly. He then walked back into the kitchen and said Mom, Dad, I am really sorry that I just did that. Our mouths dropped to the floor. That has never happened before.

 

Also, other little things are changing... He is leaving the toilet seat up, isn't that a strange thing to be excited about. How often do we (the Mom's on this forum) get upset when our boys leave the seat up. Ryan has NEVER left the seat up for as long as I can remember, he has to let it go and it slams down, he does not want to touch it, so he nudges it so it will close.

He also left the door open to his bathroom, while he was sleeping. He has never done that either.

 

So I will take every little thing and just keep hoping for some major conversion here.

 

Thank you again to all for your support.

 

Please consider going to see Dr. Smith, he is a wonderful, compassionate doctor and person...

 

What I also like about him is that he asked me point blank, why I had to travel almost 1000 miles from California to Colorado just to get an IVIG for my son! I told him about our local immunologist that refused to even try to get it covered. Guess what he said: That doctor is a LAZY doctor, and I will call him if you want! I love this man! I will be taking him up on that .

 

Goodnight...

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Thank you for sharing your story. It's something I'm keeping in the back of my mind in case we ever need to go that route. (sigh)

 

I'll share my little ray of hope that I saw yesterday too. Dd is 5 doses into the Azith. Augmentin combo. (just added the Azith Friday night) Last night we had company and though with company she usually sleeps in her sister's room with the friend, the friend went to bed early and she did not want to go in and wake her. She normally sleeps on the couch but friend's mom was there. She could have shared it with friend's mom who is very understanding (big couch) but she did not want to bother her either. She chose to sleep in her own room. That hasn't happened since she was first doing better on the Augmentin but then things got worse again.

 

She was asleep in half an hour. She did get in and out of bed several times but not with the urgency and anger and frustration that normally accompanies this. She couldn't keep her feet in bed (puts them on the floor with her body in bed) but she did not say, "I hate my stupid self" when she could not do it. She did not cry or rage. She did not call herself names.

 

Her morning was better yesterday too. she did ask reassurance questions but not endlessly like previous few days. Then our company arrived at 11 a.m. and the rest of the day went well. (to be expected with company).

 

So, it's not HUGE but it is huge, if you have lived with this. I realize today could change. Maybe holding it in yesterday with company will come back to bite us today. Still, it was improvement and I'll take whatever I can get.

 

Angela

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So glad that you are seeing some changes and that you found such an incredible immunologist despite having to travel to find him.

 

 

So did the insurance cover it? Tell us what insurance company you have and what the dx was for your son Im soooo happy for you I would go to colorado I would go to freaking the south pole If I had to . Please let me know how hes doing and if you wouldnt mind the info I would be greatful

 

Melanie

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  • 3 months later...
Thank you for sharing your story. It's something I'm keeping in the back of my mind in case we ever need to go that route. (sigh)

 

I'll share my little ray of hope that I saw yesterday too. Dd is 5 doses into the Azith. Augmentin combo. (just added the Azith Friday night) Last night we had company and though with company she usually sleeps in her sister's room with the friend, the friend went to bed early and she did not want to go in and wake her. She normally sleeps on the couch but friend's mom was there. She could have shared it with friend's mom who is very understanding (big couch) but she did not want to bother her either. She chose to sleep in her own room. That hasn't happened since she was first doing better on the Augmentin but then things got worse again.

 

She was asleep in half an hour. She did get in and out of bed several times but not with the urgency and anger and frustration that normally accompanies this. She couldn't keep her feet in bed (puts them on the floor with her body in bed) but she did not say, "I hate my stupid self" when she could not do it. She did not cry or rage. She did not call herself names.

 

Her morning was better yesterday too. she did ask reassurance questions but not endlessly like previous few days. Then our company arrived at 11 a.m. and the rest of the day went well. (to be expected with company).

 

So, it's not HUGE but it is huge, if you have lived with this. I realize today could change. Maybe holding it in yesterday with company will come back to bite us today. Still, it was improvement and I'll take whatever I can get.

 

Wow! I have been up 24 hours a day trying to find a doctor who does IvIg. How did you go about getting an appointment? Did your pediatrician make a referral. I looked online and saw the Hospital accepts my insurance. Thank God. We live in Nm and no one even knows what Pandas is. How is your son doing?

Angela

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