Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment

Hi Stephanie, we were 9 when the nightmare started. If I were you I would find another doctor. We went through 4 until we found our present one whom we have been with for 6.5 years. You cannot wait for a relapse to happen. The demylienation process starts prior to the symptoms being physically present and the damage starts at that point. You have to time the ivig ahead of any symptoms of a relapse. Each time there is a relapse more damage is done to the nerves and they never heal 100% The healing process is like a chain, the nodes of ranier (spelling sorry) unfortunately do not heal in sync if you will, during the healing process some are skipped over and that is where the chain is broke and healing is not complete. That is why it is imperative to find the dosing necessary to beat the demylienation process to the punch. In the beginning we would get a load every 4 weeks for 4 days in a row, eventually we went to every 2 weeks over 2 days just to break up the dosage time AND keep the ivig constant so that it never got to its end life, the titers would be more balanced instead of running to empty. Your daughter obviously needs more treatment than we did and that is the most important thing to remember about cidp, every one responds differently both to the ivig and rate of repair/damage. I have read some studies that stated children can get up to 3g/kg perhaps you can convince your doc to do a loading dose over 4 days and then in a week after completion start a weekly one day infusion. So essentially you would be getting a monthly load but instead of once a month over 4 days, once a week over one day. If you do this immediately after the initial load (7 days later) you will be ahead of any relapse. You may have to do this for a while. For instance we did loads for a year and then took 2 years to wean down to a maint dose. We are hopefully going to try a full wean this August as we are hoping to be in remission. We shall see. Something else to consider, your daughter may require more than just the ivig. Another possibility might be to try plasma pheresis, cleansing the blood of all of the autoantibodies and then pumping in the ivig. This would give the ivig a jumpstart because the autoantibodies would be removed prior to the administration of the ivig allowing the ivig the opportunity to have to focus only on newly produced autoantibodies. As well, another option could be ivig and some sort ofimmunosuppressant. Unfortunately these drugs come with their own problems. If there is no other alternative than that has to be considered. Obviously steroids have not worked. If it were me, I would try the 4 day load and follow in a week with a once a week load amount If that showed no results I would move to the pp ivig combo if that failed the only other option would be the ivig imunosupp. combination. Good luck prayers sent your way

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