Our life - different - but wonderful

Having a good summer!

Wed, 30 Jun 2010 20:08:11 -0500

Things have been going great back on the minocycline. Her speech therapist continues to say she can see a big difference. At the end of school they already said we need to meet when school starts to make new goals because she has already met many set back in March! Go Caroline! I am so pleased with what this drug does. This summer I have been sometimes going every other day giving it to her and it seems to be ok. Her breakdowns have almost disappeared again and she follows directions so well. She usually doesn’t like to sit near anyone because of the touch it involves but as you see in the pic above she has begun to tolerate sitting next to her brother which is so sweet. Did I mention I love this medicine:) I hope to keep her on it as long as possible. We will continue to follow up with our pediatrician about the blood levels. We are having a great summer!

Back on the minocycline

Fri, 7 May 2010 07:36:24 -0500

We got Caroline’s blood work back yesterday and her ANA blood levels were normal so our pediatrician said we could start the minocycline again. I gave her a dose last night. We will see how it goes - it should be interesting. What a ride we are on...

It’s been a tough month

Sun, 2 May 2010 19:37:30 -0500

It was so hard to find out we had to take Caroline off the minocycline. Our pediatrician decided he wants to check her blood levels after being off the medicine a month. So this week is a month off and I’ll call him to set up the blood work and we will go from there. He seems to think we might can put her back on it. We’ll see.

Off the medicine we have seen some regression in her speech, more tantrums (we were almost tantrum free before we got off of it), and her speech therapist said that she sees Caroline having more trouble focusing and has a hard time sitting still in sessions (where before on the minocycline she was attending and focusing much better). Her speech is just more disorganized. She was saying such good sentences before and now a higher percentage of her speech is confusing and doesn’t make sense. We notice but some others don’t notice immediately so it’s not an extreme difference in speech but notable to us.

I’m glad we now know to monitor for the ANA blood levels but it’s been hard watching some of the regression because she was doing so amazingly well. I think we’ll get back but we are not there yet...

Bummer of a day

Mon, 5 Apr 2010 20:36:59 -0500

Well, I found out today that I have to stop giving Caroline the minocycline. I can’t believe it. When in California they did a blood test checking her ANA blood level. It came back slightly high and they think it’s because of the minocycline. They want to get another blood test in 3 months to see if her blood levels are back to normal. Apparently taking minocycline, in rare cases, can cause medication induced lupus. Not good.

At her 7 yr. old dr. appt. her pediatrician noted that Caroline had lost 4 lbs. which I thought very interesting because she eats all the time. A little red flag went up but I didn’t know what to think of it. The weight loss was probably because of the problem with the ANA blood level. Also, I noticed that she has become very sensitive to light. This is very new and she has been wanting sunglasses even to walk out the back door. This again is probably due to the ANA blood level causing problems. I’m glad they found it before she really started having some more serious problems.

I’m going to continue to give her the antioxidants and the cod liver oil as recommended but it sure stinks that this medicine that has been helping her so much is now causing problems.

Advise - if on minocycline get ANA blood level checked. Talk with your doctor about it.

Great CA trip

Sat, 20 Mar 2010 20:10:11 -0500

We made it back from California. We visited The MIND Institute and did 4 days of research and clinical appointments. Whew! I’m still recovering. They did testing on Caroline and me since I have the pre-mutation. Everyone was wonderful there. It was busy but the trip exceeded our expectations. We met with Dr. Randi Hagerman and she made several recommendations and gave us a couple of prescriptions to try. Caroline did great the whole trip. She never had any break downs and just cooperated with everything. Caroline was amazing. Some of the other recommendations were: encouraging role playing to learn how to respond in social situations, social stories to learn social behavior, computer programs for all kinds of learning is helpful (math, social stories, reading, writing such as write:outloud, and co-writer), encouraged main streaming as much as possible for imitation and socialization, and yoga for children to help body awareness and to teach self-calming techniques,

We are trying one of the medications Dr. Randi recommended (Metadate - a stimulant). I gave Caroline half of the capsule on Wednesday. Then on Th, Fri and today I gave her the whole capsule. Thursday and Friday she had breakdowns in the afternoon. On Thursday she got frustrated and began screaming out so I sent her to her room to calm down. She was so mad she began throwing her doll furniture across the room. She has never done this and it has been so long since she has had a breakdown of this sort. It makes me a bit concerned about the medication. We will just have to watch her very closely. Today she took a nap about the time she had the break downs the days before. Interesting...

Dr. Randi was excited to hear about the progress on the minocycline and antioxidants. They are starting their trials with minocycline there and were very interested in Caroline’s progress.
Overall, it was all good and I’m so glad we went! I look forward to getting their reports.

Many people have gone farther than they thought they could because someone else thought they could - Anonymous

Most improved

Thu, 25 Feb 2010 19:51:20 -0600

Caroline’s teacher told me today she gets the most improved award for this year. I then finally told him about the Fragile X diagnosis and about the minocycline. We and they have definitely seen improvements overall and continue to see her speech improving into very well formed sentences. I also really think the antioxidants are helping too - more than I expected. Very exciting. We are heading to the MIND Institute next week for our visit with Dr. Hagerman. We are looking forward to our visit and hope it goes well.

Caroline is 7 tomorrow - Happy Birthday Girl!

Antioxidants

Mon, 15 Feb 2010 19:14:42 -0600

Today Caroline’s occupational therapist told me that she has noticed in the past few weeks that Caroline has been doing some amazing things. She said that at the beginning of the year Caroline had so much difficulty looking at a picture and creating a complete thought and sentence of what was happening in the picture. Now, she said Caroline is coming up with 4 or 5 sentences to describe the picture. They then work on writing some of those sentences down.

I remembered after she said this that a few weeks ago I began giving Caroline Vitamin E and Folic Acid. I heard in a Dr. Hagerman lecture that antioxidants are good for those with Fragile X so I started giving them to her. I now seem to think the antioxidants are helping too. I’m very excited about what I am hearing from those that are working with her. We are seeing the changes at home too.

Who knows exactly what is making the difference but I’m trying to document some of this so we can have some sort of record of what is happening.

They said she couldn’t and she did

Fri, 12 Feb 2010 15:47:54 -0600

I found out that they haven’t been giving Caroline the spelling words and tests this year because her teachers said this was “out of her reach”. They didn’t want to frustrate her and give her something she couldn’t do. Well, I found out and have been pretty upset. They are now sending home the spelling words and we are doing the weekly homework. Upon my request, they gave her a spelling test today. She scored 11/13. Don’t underestimate my girl. I guess she showed them! I am meeting with her teacher next week to discuss some things.

Regarding the minocycline - I think it’s helping - like with the spelling test - Wow! Her Sunday school teacher who didn’t know she is taking any meds made a comment how great she is doing. She said the difference from this past summer (not yet on minocycline) and this school year (on minocycline) is amazing. She actually said Caroline has been” blowing her away this year”. Go Caroline go!

Great Christmas!

Mon, 4 Jan 2010 18:55:34 -0600

Caroline got an American girl that looks just like her with matching PJs. Sooo cute! She was precious - Christmas morning I heard that she had gotten up and when I walked into the living room she was just standing there looking and she said, “Santa brought everything.” She has just played and played. She and her little brother have played together which is fun to watch. Today they were playing hide and seek. Love it!

As far as the minocycline - I’m still giving it to her every day. I see subtle changes now and wonder if the meds are helping. Not sure - she took a big initial jump and now I wonder if the meds will be a cumulative effect. We are planning to go out to Sacramento in March to the MIND institute and I plan to keep her on it until then and see what they say. We will go from there.

Funny thing - she has started calling me by my name, Laurie - not sure why - she has called me Mama all along. She is funny - it’s probably just a phase.

Thanksgiving

Sat, 28 Nov 2009 23:01:26 -0600

We have so much to be thankful for - we have counted our blessings this thanksgiving. We spent time with family (my side). I have the premutation for Fragile X and in one of our table conversations we talked about family carriers. Caroline is the first one to have the full mutation that we know of. My mom is the carrier in our family and it probably came from her mom. My aunt (my mom’s sister) wonders if she is a carrier. She and her husband were not able to have biological children so they adopted my 2 cousins so no chance for pass down there. My aunt had early menopause (39yrs) and wonders. No one knew in our family until Caroline that it was being passed down. I have high blood pressure and migraine problems which, from what I read, is more common with carriers. What a life - who knew? God knew... and he’s taking care of us - Thank God!

Caroline had a great time! She cried when we got home today because she was sad our trip was over. Sweet Caroline - she recovered and went to bed early.