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Finished with IVIG


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Hi everyone,

 

Shae started her IVIG on thursday. Everything went really well during the day. She didn't seem able to tolerate a very fast rate so we kept it around 32, anything higher than that and she started getting a headache. Because of the slow rate it took 8 hours just for the infusion. She came home from the hospital and headed outside to play with her friends until bedtime (for about an hour). She seemed to be feeling great.

 

Friday morning at 7 am she was by bed telling me she felt really bad. She immediately started throwing up. She also had a fever of 101 and headache. We called the immuno doc's office who said to proceed with round 2 (thank godness). He doesn't believe in premed's so we went ahead and gave her some ibuprofen. the hospital started at a really low rate to see how she did. After about an hour she started complaining of a really bad headache and then that her neck was hurting. I called her Ped's office and told them everything that was going on (per the immuno's request that we follow up with the ped instead of them). :) We slowed the rate down again and watched her for about an hour. She had been sleeping the entire time we were at the hospital with brief periods of waking up to tell us she didn't feel well. Her neck pain seemed to be getting worse. I called Diana in a panic because I didn't feel anyone was doing anything and I was getting nervous about asceptic meningetis. Her Ped called back after lunch and had them stop the infusion for an 1 1/2 while they gave her fluids, Benadryl and Tylenol. She slept for maybe another two hours after the Benadryl and woke up around 4:30 and was able to stay awake for the rest of the evening. She even sat up in bed and played cards for awhile. Her neck still hurt and she had a slight fever but overall there was a definite improvement - even her color looked better. She never did eat anything yesterday and other than a few sips here and there didn't drink much either.

 

the infusion ended up taking 10 1/2 hours. We were never able to get the rate above 25 because she would start complaining about her neck again. We didn't get home from the hospital until 11 pm- 14 hours after we left home that morning!! Very long, stressful day for everyone.

 

Today she has some lingering neck pain and seems worn out. I still haven't been able to get her to eat or really drink. She has been taking Ibuprofen and Benadryl to help with the side effects. It would have been nice if the Immuno would have started these before her first infusion. I would definitely recommend giving them beforehand. I tried to pump her full of water and gatorade the day before and she did drink more than usual but appartantely more would have been even better.

 

She hasn't complained of leg or knee pain in the last three days. Hopefully she'll perk up in the next day or two and we'll see an overall improvement. She is scheduled to receive a smaller dose of IVIG every 4 weeks because of the immune deficiency that she was dx'd with last month. Hopefully, she has a better experience.

 

It sounds like there has been some misunderstanding regarding her dx and what the Pneumococcal titers are. I will post a separate message on that another day and hopefully clear up some confusion. Diana and I have been talking about it and think there may very well be a connection between Pandas and the titers test I'm referring to.

 

Thanks to everyone for their thoughts and prayers.

 

Sam & Shae

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Sunday morning--She still has a headache, neck ache and is sleepy. I'm guessing she has a mild case of asceptic meningtits. Our Ped said all they do is treat the symptoms. I believe it lasts about 48 hours so hopefully tomorrow she'll be feeling better.

 

Sam

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How do you treat the symptoms? What is the recommended dose and meds to use before treatment? We go Thurs. to Latimer and I want to be prepared. Do you have any suggestions?

 

Michele

Sunday morning--She still has a headache, neck ache and is sleepy. I'm guessing she has a mild case of asceptic meningtits. Our Ped said all they do is treat the symptoms. I believe it lasts about 48 hours so hopefully tomorrow she'll be feeling better.

 

Sam

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tylenol, benadryl and/or prednisone from what I've read from others. I would definitely recommend the tylenol & benadryl. Hopefully, Dr Latimer will premed for you so you don't have to worry about it. I would also recommend LOTS of fluids 24 hours before and during the IVIG.

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You may want to consider motrin instead of tylenol because tylenol can lower the glutathione levels.

 

For us, the secret to keeping the horrible headaches away is to do IVIG after eating a meal and drinking lots of water before, during, and after the infusion for a few days. The worst infusion was the first two consecutive days -- my daughter had a horrible migraine for 2-3 days. Since then, she does fine as long as she eats, drinks lots of water for a few days, and takes motrin and benadryl before starting and then I repeat it that night. I also give her motrin the next day. It's when she doesn't drink enough water that she gets a headache.

 

tylenol, benadryl and/or prednisone from what I've read from others. I would definitely recommend the tylenol & benadryl. Hopefully, Dr Latimer will premed for you so you don't have to worry about it. I would also recommend LOTS of fluids 24 hours before and during the IVIG.
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I know the DAN! told us this about Tylenol also. Are there specific amouns of Benedryl and Tylenol/Motrin to give before the IVIG? Also how far in advance do you give them, the morning of? I just want to be ready since I am hoping to be able to get the IVIG the next day after our appointment on Thurs. If I am traveling to MD I hope we can get everything done on one trip.

 

Shaes Mom how is she doing today? I am praying her neck is better.

 

 

 

You may want to consider motrin instead of tylenol because tylenol can lower the glutathione levels.

 

For us, the secret to keeping the horrible headaches away is to do IVIG after eating a meal and drinking lots of water before, during, and after the infusion for a few days. The worst infusion was the first two consecutive days -- my daughter had a horrible migraine for 2-3 days. Since then, she does fine as long as she eats, drinks lots of water for a few days, and takes motrin and benadryl before starting and then I repeat it that night. I also give her motrin the next day. It's when she doesn't drink enough water that she gets a headache.

 

tylenol, benadryl and/or prednisone from what I've read from others. I would definitely recommend the tylenol & benadryl. Hopefully, Dr Latimer will premed for you so you don't have to worry about it. I would also recommend LOTS of fluids 24 hours before and during the IVIG.

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The nurse at the infusion center gives my daughter 500mg motrin (though our DAN doctor says she can have up to 750 mg) and benedryl (not sure of the dosage but it's an adult dosage since she is 13) right before administering the IV. Then I follow up with 750 mg motrin 6 hours later at home (and again twice daily the next day). The benedryl is in case there is an allergic reaction, though I did find it helped her to sleep the night after the first infusion when she had a bad migraine. She tolerates the Gammagard very well though they always give her the benedryl just in case. The key to minimizing the headaches is to drink lots and lots of water. They will change brands (e.g., Gammagard to Gammunex) if patients have severe headaches or nausea.

 

Nancy

 

I know the DAN! told us this about Tylenol also. Are there specific amouns of Benedryl and Tylenol/Motrin to give before the IVIG? Also how far in advance do you give them, the morning of? I just want to be ready since I am hoping to be able to get the IVIG the next day after our appointment on Thurs. If I am traveling to MD I hope we can get everything done on one trip.

 

Shaes Mom how is she doing today? I am praying her neck is better.

 

 

 

You may want to consider motrin instead of tylenol because tylenol can lower the glutathione levels.

 

For us, the secret to keeping the horrible headaches away is to do IVIG after eating a meal and drinking lots of water before, during, and after the infusion for a few days. The worst infusion was the first two consecutive days -- my daughter had a horrible migraine for 2-3 days. Since then, she does fine as long as she eats, drinks lots of water for a few days, and takes motrin and benadryl before starting and then I repeat it that night. I also give her motrin the next day. It's when she doesn't drink enough water that she gets a headache.

 

tylenol, benadryl and/or prednisone from what I've read from others. I would definitely recommend the tylenol & benadryl. Hopefully, Dr Latimer will premed for you so you don't have to worry about it. I would also recommend LOTS of fluids 24 hours before and during the IVIG.

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ShaesMom,

 

Thanks for sharing your story. It is so helpful for so many to hear of others experiences and learn from them. I hope you see great results. I notice in your initial post that you said something about complaints of leg pain. Could you expand on that some? I think my other son is experiencing PANDAS symptoms. He has had the issues for several years in a wax and wane pattern. The thing is, they have just never been the huge blown out obvious things that we experienced with our first son. However, now I am worried that he is having panic attacks. His pediatrician is working him up / treating him for other things, but I think I may have to start stearing her in a different direction. Of course, I am worried that I could be wrong and then we would miss some big physical thing because I insisted they start looking at the brain and so forth. Anyway, to get to the point, one of his vague symptoms is persistant complaints with his legs hurting. I haven't heard other parents discuss that so I hadn't added that on my list of "PANDAS indicators" for him. I have e-mailed Dr. Cunningham about getting the new lab work done and see if that may offer any insight. Haven't heard back from her yet. I will pray that your sweet daughter has a complete recovery.

 

Dedee

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thanks Dedee,

 

Shae started complaining of leg/knee last spring. She even stopped riding her bike and scooter. She would also complain a lot if we were walking to school or just walking a lot in general. At first we just thought it was growing pains then we just thought she was complaining because we didn't know any better.

 

Her leg pain has remained during the last year and half. It was worse during her Pandas episode this spring. Two weeks ago she caught a viral infection with a fever and was unable to walk for about six days because of the pain in her legs. She wouldn't let us even touch them. The pain moved to her arms and lower back. We contacted four different doctors including Dr. K who just felt this was indeed viral and told us not to panic-yeah right.

 

In May we saw a Rheumy who ruled out RA but didn't really give us any reason as to why her pain was constant.

 

If you've read any of my previous posts you know Shae was dx'd with a Primary Immune Deficiency (PID) in June called Selective/Specific Antibody Deficiency. I've recently joined a forum of parents with kids who have similiar issues and many of them also have the "unexplained" leg pain. My research on PID's has shown that this is a common symptom.

 

If you are interesting in learning more, send me a private email.

 

Sam

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Shae continued to have a reaction to the IVIG throughout the weekend. She complained of a headache and neck pain both Saturday and Sunday. We managed it with alternating ibuprofen and tylenol.

 

Sunday around 6 pm she developed a severe migraine. I have a lot personal experience with migraines so I didn't freak out yet. I set her in the cool shower for about 20 minutes. She felt much better afterwards and fell asleep around 7:45 which is early for her. She woke up around 2 am because of a thunderstorm and when I went to check on her she was burning up. She was running a temp of 102.1 and complained that her head hurt really bad.

 

I called the Immuno office this morning who once again did nothing. I made an appt with her Ped and she ended up giving her a steroid shot and nausea medicince. She also gave me a RX for Imitrex. She was still reluctant to say that Shae had Aseptic Meningitis but did feel that she had a very severe reaction to the IVIG (duh??). She told me that she would prescribe the premeds before her next infusion. About two hours after getting the steroids she was helping her brother clean his closet (Yah, I said clean his closet!). This is not a behavior we would have seen two weeks ago.

 

Despite being sick from the infusion, she is definitely less anxious, more agreeable and in a much better mood. Like so many of you, our family has been on a roller coaster ride for the last seven months and I can tell you that I do not think anyone has raised their voice or gotten into a fight with one another in the last three days. It really feels like some level of peace and normalcy has been restored to our house. All I can say is Praise God.

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