Holly & Minocycline @ UC Davis Mind

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Holly was the first baby to take Minocycline. She began on 7-17-08 and ended on 8-19-08. Many have been interested in the recent research on this and the trial they are launching. If you read the August Archives of this blog, you will see my journal during the Minocycline trial. Another Mother Asked me some questions which I will post and answer here:

QUESTIONS:

I had a couple of questions about the medication, and if you're comfortable with me asking, was it the minocycline that you were using? Was the trial for a month only, and how would the progress be measured? Was your daughter hitting the regular developmental measurements before this drug trial, or were there very noticable delays?

Forgive me for being so inquisitive, but I am just so eager for this medication to be available for the next phase of trials. Our son would benefit so much from having some medication that would improve his memory/synapses.

I guess all of us on the listserve are in the same boat, just praying for a cure that would set our kids free to be fuller participants in life.

Thanks

ANSWERS:

Holly is my first baby, so to be honest, if I had not already known she had fragile x I may not have known she was delayed. She is however receiving early intervention services, and according to the reports, on the 6 categories they monitor, she is on target for social, about 2 weeks delayed in Self Help, about 1 month in cognitive, 6 weeks in fine & Gross Motor, and 2 months in Speech.

That said, she does move forward and make progress, but does not hit the miles stones right on time. She tends to learn in bursts, and may fall very far behind, 6-9 weeks, then suddenly catch up, as if there was one single skill she was stuck with and she finally got it. Things like finding her feet, or chewing on them, reaching and grasping toys are delayed. She did just learn to sit on her own, but she does not push up when on her belly or roll onto her belly. She also doesn't really babble, at almost 7 months, but today she said maba maba bababa so I will be posting that she in babbling. She isn't hitting two toys together or shaking/rattling things, but she can hold her own bottle, smiles watches you.

So again, her OT/PT/IDS know she is delayed and work with her weekly, and there are some things I notice other babies doing that she does not, but as a first time mom, because she does learn new things weekly, I may never had known.



Now onto how they test it all.....

Since the drug trial (minocycline) that we did with Dr. Hagerman was sorta a trial run to help develop a study and not part of an official study, it might be different for you. But we used two things to test it. The first was the Mullins assessment, which is a diagnostic test where they play with her, give her different objects, see where her skills are, like will she pull a cloth or string to get to a toy, if you put the toy under the blanket does she know it is there, does she transfer the toy from one hand to another. They did this before the 5 week trial and then again after.

The second item is an eye tracking test, actually 7 of them, where she watches short videos and the computer analyzes where she is looking, does she look at the face, if you play music then show a picture on the left, then right, then left, will she anticipate the correct side when the music is played again, can she see the vibrations of black
and white lines in 4 boxes and notice which one is a different pattern, those types of things. Again they did this before and after.

Also direct observation by Dr. Hagerman, and the journal I kept of her progress and my observations. In Holly's case I noticed an increase in attention, concentration, and focus, I noticed her verbal skills seemed to increase. But here is the catch...

Was this because of the minocycline? Was it because of her therapy? Was it normal growth and development from 4-5 months of age, we don't know the answer to this. The lab analyzes the eye tracking data and sees a big improvement, but until they have a control group of normally developing non fragile x babies to compare to, they won't know if her improvement is typical, or a typical, or where she was in comparison to other children, normally developing, or with fragile x, on the medication, or off of it. So really there needs to be data collected from three groups, and all of it looked at.

That said, there are really no side affects, (except during development, it can cause your adult teeth to come in grey) so we felt like there could be no harm in taking this. She was young and at an age when her synapse connections are forming, so the thought was that they would form "correctly" or at least have a better chance if taking it.

The reason we did one month (it was supposed to be 4 weeks, but we added a 5th because the first week was a smaller dose and she spit or puked most of it out), is because the mouse trial was one month, and eight months later, positive results were still shown in the mouse. After the trial ended there was no loss of skill or regression that we could tell, and its hard to say, but I do not think her gain of new skill has slowed at all, so I think the positive effects are still there, but again, there are many factors contributing to her development. Holly was the first Fragile X patient to take Minocycline, so it was all in development, and theories, and trial and error.

It is possible she might take another course of the medication, especially I think if her delays increase or her development slows, to see if it has an effect, and when she turns 10 months, she will do another eye tracking test to see how she has progressed, over 5 more months.

I hope that helps. I think I will post this responce to my blog in case other's have these same Questions.