Moms, Dads, Family Members of children with SCLS, We are extremely saddened that my 6 yr old had a relapse after 1.5 years of not having a severe health episode. Not only this, but she had just received her IVIG treatment about 4 days before. She has been doing great since the treatments started a bit over a year ago. I wanted to believe and hope that those nightmares of her having health episodes were over and the IVIG was the solution for her illness, but I guess we were wrong. Have any of you had this situation come up with your little ones? If so, what has been done since? Are they having their attacks periodically or do they stop for a while and then come back? Any information you all would like to share is greatly appreciated! Thank you in advance!

We are so sorry to get this news, Enny! Many of us adults have been counting our blessings for years of effective IVIG therapies, but we have two adult members of this Community who have endured several episodes after being on IVIG, and as result they report having suspended their treatments as of late. I urge you and your pediatrician to inform Dr. Kirk Druey at NIH about the incident ASAP, in case you haven't done so already, with as much detail as possible on (a) the severity of the episode, relative to pre-IVIG episodes (e.g., what were her lab results?), and (b) how the episode was managed (e.g., did they give her more IVIG)? We need as much information as possible, so if you'd like to share those details here, please do.

Thank you for your reply! I did ask the A&I doctors to contact Dr. Druey and they mentioned he had responded to their email. We have a meeting with the A&I doctors soon and I will follow up with them on what Dr. Druey has mentioned/recommended.

I do not mind sharing what this last episode was like. After 1.5 years of no episodes, and 4 days after her IVIG treatment, she had a tummy ache during school. She came home, fell asleep a bit, and then at night she was very nauseated. She finally did throw up and had a very pale face afterwards and really lethargic. We rushed to the ER. Her blood pressure was ok but her heart beat was exceedingly fast. They set her on IV, but her blood pressure kept decreasing. They started the IV and dopamine at a slow rate due to swelling. Then we were moved to ICU and they continued the same fluids. At some point they added Albumium (? spelling) in the fluids as well. Finally, they did, I believe 500 mg of IVIG. Once she was able to keep her blood pressure and heart rate stable on her own, they stopped all the fluids. Her swelling wasn't as bad as other times. She managed to withdraw fluids on her own by urinating frequently. It seems that we were in the hospital less days than what we have been in the past. I might be missing more details.

Hello Itzy, Oh, what a blow you must have had. I can add little but my support, and to wonder, "What was the tummy ache about?" The thing that preoccupies us greatly is, how to predict an attack? Is the tummy ache a feature of her past attacks? Was there anything else in the mix that led up to the attack? Thank heavens you had the sense to get her to ER! Complacency can be a problem. Keep strong John

Bonjour Arturo, il m'arrive aussi de faire des rechutes après avoir reçu un traitement. la semaine dernière, soit 2 semaines et demi après mon ivig, j'ai commencé a avoir des symptomes soit: jambes enflées et essoufflé au moindre effort. je suis arrivé à l’hôpital avec un hémoglobine à 205. donc, j'ai recu un traitement ivig (1gr / kg ) le lendemain matin même chose (hémoglobine 205) donc, le Médecin qui connait très bien ma situation a décidé de me donner du voluven ( j'ai reçu 2 litres en trois jours) en plus d'un autre traitement de 1 gr /kg de ivig. et un autre le lendemain. la troisième journée mes tests sanguins étaient de 179 d'hémoglobine. la quatrième journée. hémoglobine: 110. un peu bas. et je vais recevoir mon traitement ivig trois semaines après cet incidents au lieu de 4 semaines. Si jamais le Dr. Druey voudrait recevoir les notes et rapports, il me fera plaisir de les demander et de vous les faire parvenir. merci.

Josée (en français ci-dessous), I'm very sorry to hear that, after 7 1/2 years of being treated so successfully with IVIG, it appears that you had a classic episode of SCLS. I can only imagine how demoralizing this has been for you and your family. Thank you for letting us know that you were given IVIG plus fluids, and that your doctor has now put you on an every-three-weeks IVIG infusion routine. I hope that works for you! And yes, please ask Dr Javaheri to send an email message to Dr. Druey informing him of what happened and how he has dealt with it, to include if possible the laboratory results from your hospital stay. Please keep us informed of how the new schedule works for you. ------------ Je suis désolé d'apprendre que, après 7 ans et demi d'être traités avec autant de succès avec des IGIV, il apparaît que vous avez eu un épisode de SCLS classique. Je ne peux qu'imaginer comment cela a été démoralisant pour vous et votre famille. Merci de nous laisser savoir que vous avez reçu avec l'IGIV plus fluides, et que votre médecin a maintenant vous mettre sur une tous les trois semaines d'IGIV routine de perfusion. J'espère que travaille pour vous! Et oui, veuillez demander le Dr Javaheri pour envoyer un e-mail au Dr Druey l'informant de ce qui s'est passé et comment il a traité avec elle, afin d'inclure si possible les résultats de laboratoire de votre séjour à l'hôpital. Merci de nous tenir informé de la façon dont le nouveau planning travaille pour vous. Arturo

This is indeed worrying for all of us. There can be only so many reasons. First. Is it due to a single ineffective or bad batch of IVIG. In this situation, the previous dosage will wear off, despite an infusion, thus leaving us exposed? Please, is it possible to give the brand name and, if possible, the batch of the dose which didn't work? Second. Is it due to individuals developing antibodies to the IVIG? In this case, subsequent treatments will probably fail. This is more worrying still. Are there people who have had a failure/relapse, but subsequently controlled by IVIG? Third. Is it possible that some are 'learning to metabolise' the component of IVIG? In this case, the answer is to lean toward more frequent doses. ------------------ Cela est en effet préoccupante pour nous tous . Il ne peut être que de nombreuses raisons. Premier. Est-ce en raison d'un seul lot inefficaces ou mauvais d'IgIV . Dans cette situation , la dose précédente portera au loin , en dépit d'une perfusion , donc nous laissant exposés ? S'il vous plaît , est-il possible de donner le nom de la marque et , si possible , le lot de la dose qui n'a pas fonctionné ? Seconde. Est-ce dû à des individus en développement des anticorps à l' IgIV ? Dans ce cas , les traitements ultérieurs seront probablement échouer . Ce qui est plus inquiétant encore . Y at-il des gens qui ont eu un échec / rechute, mais par la suite contrôlées par IgIV ? Troisième. Est-il possible que certains sont «Apprendre à métaboliser la composante des IgIV ? Dans ce cas , la réponse est à pencher vers des doses plus fréquentes .

bonjour, Depuis plus d'un an, je reçois la marque Privigen. dans mon cas, lorsque je fais une rechute, on me traite avec le IVIG ainsi que du voluven. je crois que si je refais une rechute, nous allons surement voir a la possibilité de recevoir mon IVIG aux trois semaines. je garde le moral et le sourire ;o) Je ne vois aucun problème à recevoir IVIG chaque trois semaines. Hello, For over a year , I get the brand Privigen . in my case, when I relapse, I am treated with IVIG and the VOLUVEN . I think if I ever did a relapse , we'll probably see is the ability to receive IVIG my three weeks. I keep the morale and smile :o) I see no problem in receiving IVIG every three weeks.

Sont les autres qui ont eu une rechute sur Privigen ou d'une autre marque? Je me réjouis de mon traitement 2 fois par semaine . —— Are the others who have had a relapse on privigen or another brand? I rejoice in my treatment 2 weekly.

Hi. Yes, my husband has relapsed with Privigen, Gamunex, and Octogam. Doctors have two theories: 1. He has developed an antibody to the treatment or 2) Treatment has lost its effectiveness over time.